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# Dementia guide for carers and care providers

**If you care for someone with dementia, this guide is for you.**

It summarises many things you and the person you are caring for may need to think about. Some of the information here is important now. Other information will be useful later but is here for reference when you need it.

The guide contains six main sections:

  * Understanding dementia: what it is, its symptoms and treatment
  * Day-to-day-living: looking after the person with dementia, yourself, and the family
  * Support: people and organisations who can help
  * Legal and money: advice and sources of help
  * Symptoms and behaviours: a look-up guide
  * Medical terms: definitions of medical terms and abbreviations which medical professionals may use.

A benefit of having this information together and easily available is that you will be able to show it to other people, including the person you are caring for, where appropriate. Family members, friends or colleagues may all need information to understand what is happening and to see how they can help.

## Free to share

This guide is freely available in a number of formats. You can find it as a free e-book on Kindle, or as a free app on the Apple, Android and Windows stores. Look for 'Dementia guide for carers' on each platform. Or you can download the guide in 'epub' e-book format.

## Advice about links

If you have downloaded this guide as an app or e-book you can use it anywhere, without an internet connection. The text contains many links to external information sources, so you can follow up details on specific topics. These links will work only when you have an internet connection for the phone or tablet you are using.

The links have all been checked to ensure they are working at the time of publication but over time organisations sometimes change addresses for their links (their URLs). If you find a link is not working, and you are sure you have an internet connection, try going to the main link of the organisation and searching for the information you need on their main site. For example, if the text gives a link for a particular fact sheet from the NHS but the link does not work, go to the main NHS web site and search there for the information you need.

Note that Health Education England Thames Valley is not responsible for the content of external sites.
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# Understanding dementia

Dementia is a general term for a wide range of conditions. These include Alzheimer's disease, Vascular dementia, Fronto-temporal dementia, Dementia with Lewy bodies, and other types of dementia. These conditions have different symptoms and may need different kinds of treatment.

This section covers

  * What is dementia? The different conditions which come under the general heading of 'dementia' listed and summarised.
  * Summary of dementia symptoms: the various behaviours and visible signs that someone with dementia may show
  * Medication and treatment: ways of slowing and relieving the progress and symptoms of dementia.

Since this is a general guide for all dementias, affecting both older people and younger people, it's worth remembering that not everything in the guide will be relevant to the person you are caring for.
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## What is dementia?

Dementia is the name for several conditions that lead to people losing their ability to manage their own lives and to changes in their behaviour. Dementia affects over 850,000 people in the UK. It can occur at any age but is most common in older adults (over 65). Dementia in younger adults (under 65) is often called 'Early onset dementia'. Over 43,000 people in the UK have early onset dementia. The most common symptom of dementia is a change in ability to remember things and an eventual loss of memory, but not everyone has memory problems. Some people with dementia have problems with communication, decision-making or everyday tasks.

Contents

The most common form of dementia is Alzheimer's disease. Vascular dementia is also common. There are many other types including:

  * Mixed dementia
  * Fronto-temporal dementia (Pick's disease)
  * Dementia with Lewy bodies
  * Parkinson's disease dementia
  * Normal pressure hydrocephalus
  * Huntington's disease.

Some people have memory problems but they are not severe enough to be called 'dementia' and may not lead to dementia. This is described as 'Mild cognitive impairment'.

Sometimes people have more than one type of dementia, usually Alzheimer's and Vascular dementia, and this is called 'Mixed dementia'.

### Types of dementia

#### Alzheimer's disease

Alzheimer's disease, the most common type of dementia, affects about 500,000 people in the UK. It causes 'plaques and tangles' to develop in the structure of the brain. These block the normal chemicals that send messages around the brain. The blockages result in brain cells dying and eventually result in the volume of the brain shrinking.

#### Vascular dementia

Vascular dementia is the second most common cause of dementia. It is the result of problems with blood circulation which mean that parts of the brain do not receive enough blood and oxygen, resulting in the death of brain cells.

There are many types of Vascular dementia, including stroke-related and small vessel disease related dementia. Another type is a mixture of the two.

#### Stroke-related dementia (sometimes called post stroke dementia)

Strokes damage the brain by blocking the blood supply to a specific part of the brain. The symptoms depend on where the brain has been damaged. A person may experience weakness or paralysis on one side of the body or have difficulties communicating.

Stroke-related dementia can also be caused by several small strokes in the outer part of the brain called the cortex. These are sometimes called TIAs (transient ischaemic attacks). These can be so small the person may not notice them. However, their effects accumulate so that a person's mental abilities are affected.

#### Small vessel disease related dementia

Damage to tiny blood vessels that lie deep in the brain can lead to slow development of dementia symptoms.

It can be difficult to separate Alzheimer's disease from Vascular dementia in making a diagnosis. Some people may have both.

#### Mixed dementia

Mixed dementia is a condition where, most commonly, Alzheimer's disease and Vascular dementia occur at the same time. Many experts believe Mixed dementia occurs more often than was previously realised and that it becomes increasingly common in advanced age.

It is important to recognise if a person has Mixed dementia because the combination of the two diseases may have a greater impact on the brain than either by itself.

#### Fronto-temporal dementia (Pick's disease)

Fronto-temporal dementia (originally called Pick's disease) covers a range of conditions caused by damage to the frontal or temporal lobes of the brain. These areas of the brain are involved particularly with behaviour, emotional responses and language. People with Fronto-temporal dementia may show early changes in their personality and communication, rather than memory or orientation difficulties, which are more typical of Alzheimer's disease.

#### Dementia with Lewy bodies

Dementia with Lewy bodies is named after the doctor who discovered it. He found tiny round protein deposits, now known as Lewy bodies, in nerve cells in the brain. Lewy bodies occur in other conditions, including Parkinson's disease dementia.

Dementia with Lewy bodies can have similar symptoms to Alzheimer's disease but people may also experience the following:

  * periods of alertness and drowsiness
  * fluctuating cognition
  * visual hallucinations
  * becoming slower in their physical movements.

#### Parkinson's disease dementia

Sometimes people with Parkinson's disease develop dementia, usually several years after they were first diagnosed. Symptoms are very similar to Dementia with Lewy bodies.

#### Normal pressure hydrocephalus

Normal pressure hydrocephalus is a brain disorder where excess cerebrospinal fluid accumulates in spaces within the brain (the ventricles), putting pressure on the brain. This could lead to problems with thinking and reasoning, difficulty walking and loss of bladder control.

#### Huntington's disease

Huntington's disease (HD) is a hereditary, progressive brain condition caused by a defective gene. It causes changes in the central area of the brain, affecting movement, mood and cognition.

#### Mild cognitive impairment (MCI)

Mild cognitive impairment is not a specific medical condition or disease. It is a general term used to describe a slight but measurable change in the functioning of the brain.

The word 'cognitive' is a general term for mental processes, including memory, concentration, speed of thought, ability to use language, organisation and problem solving. MCI can be defined as a deterioration in any of these which is greater than expected for a person's age, but not severe enough to be classified as dementia.

### Dementia in younger people: early onset dementia

When dementia affects a person under the age of 65, the medical profession refers to it as 'early onset' or 'young onset' dementia. Most people assume that dementia affects only older people. Currently, however, there are estimated to be over 43,000 younger people with dementia in the UK (between the ages of 40 and 64). This figure could be higher because of the difficulties of diagnosing the condition (its symptoms are often thought to be the result of other factors, such as stress at work or depression).

#### Types of dementia in younger people

The most usual form of dementia in younger people is Alzheimer's disease, but Vascular dementia, Dementia with Lewy Bodies and Fronto-temporal disease are also common. As with older people, dementia in younger people can be a feature of other illnesses, such as Huntingdon's disease, Parkinson's disease. People with Down's syndrome have a 40% risk of developing Alzheimer's disease, usually in their forties and fifties. Additionally, people who have had a severe head injury or received repeated blows to the head, such as boxers, are at higher risk of developing dementia.

Care of younger people with dementia may require a different approach to the care of older people because younger people are likely to be working and have family responsibilities. When their dementia starts, they are likely to be physically more active than older people.
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## Summary of dementia symptoms

The symptoms people develop vary according to the type of dementia they have. They also differ from person to person. Some people may have just one symptom initially; others may have several symptoms.

When you are thinking about someone's symptoms remember that they might not be caused by dementia. For example, people may become confused as a result of changes in medication or because they have an infection and are running a fever. Or they may become anxious because there is a real cause of anxiety that you are not aware of. If the person you care for shows a new symptom, or existing symptoms suddenly become worse, check that the change is not the result of other causes. For more information look at Caring for physical health and Medicines and possible side effects.

### **Thinking problems**

Early symptoms of dementia are often mild and may get worse only very gradually. This means that people with dementia may not notice the signs for some time. Typical symptoms are:

  * memory loss, especially memory for recent information, such as messages or names
  * difficulties with tasks and activities that require organisation, decision making and planning
  * disorientation in unfamiliar environments
  * difficulty finding the right words
  * difficulty with numbers and handling money in shops
  * changes in personality and mood.

Some people do not recognise that they have any problems, even when their symptoms are obvious to others. This is called 'lack of insight''.

### **Behaviour changes**

The changes resulting from dementia can make people feel anxious, lost, confused and frustrated. They may know something is not right but not be able to grasp what it is. Although each person handles these feelings in their own way, certain reactions to these emotions are common:

  * repeating questions or carrying out an activity over and over again
  * walking and pacing up and down
  * aggression, shouting and screaming
  * becoming suspicious of other people
  * low mood
  * having no concept of time.

### **Physical changes**

Some types of dementia affect a person's physical ability:

  * poor coordination may make them slow and clumsy when carrying out everyday tasks, such as washing and dressing
  * mobility problems may lead to slow movement and walking and, in later stages, loss of ability to walk
  * balance problems may put them at risk of falls
  * loss of control of their bladder and, in some people, bowel, may lead to incontinence in later stages
  * loss of appetite and difficulty swallowing may lead to weight loss.

The NHS Dementia Choices website provides general information about dementia, which is updated regularly. It includes short videos of carers, people with dementia and professionals talking about their experiences. 
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## Medication and treatment

Currently there is no cure for dementia, but there are drugs and therapies that may help with some symptoms or, in some cases, slow the progress of the disease. The treatment a person will be offered will depend on the type of dementia they have and their symptoms.

Medications will, initially, be prescribed at the Memory Clinic. In time your local GP will probably take over repeat prescriptions.

### **Medication to relieve or slow down the effects of dementia**

For people with Alzheimer's disease, there are currently four drugs available:

  * Donepezil (often known by its trade name, Aricept)
  * Rivastigmine (trade name, Exelon)
  * Galantamine (trade name, Reminyl)
  * Memantine (trade name, Ebixa).

These may also be prescribed to people with Mixed dementia with an element of Alzheimer's disease.

The first three drugs in the list above (donepezil, rivastigmine and galantamine) are known as acetylcholinesterase (ACE) inhibitors. They improve communication between brain cells by preventing the breakdown of the chemical messenger acetylcholine. They may be effective for a limited time. Unfortunately they do not work for everyone and sometimes cause side effects such as nausea, vomiting, loss of appetite and diarrhoea; but many people take them without problems.

The fourth medication, memantine, may be prescribed to people with moderate Alzheimer's disease who cannot tolerate any of the three acetylcholinesterase (ACE) inhibitors or to people in the later stages of the condition. Memantine controls the activity of another chemical messenger, glutamate. It may cause side effects in some people, including dizziness and balance problems, constipation and headaches, but many people have no side effects.

People with Dementia with Lewy bodies or Parkinson's disease dementia might also be offered acetylcholinesterase (ACE) inhibitors as they may help improve some of their symptoms, such as hallucinations.

There are currently no equivalent treatments for Fronto-temporal dementia or Vascular dementia.

### Medication to treat underlying conditions

Although there are no treatments for Vascular dementia, GPs may prescribe medication to treat high blood pressure, high cholesterol, heart problems and diabetes. These medications will reduce the risk of strokes which could increase the rate at which Vascular dementia progresses.

People with Vascular dementia may also be given advice about lifestyle changes to reduce risk of strokes, such as stopping smoking, taking exercise and healthy eating.

### Medication to relieve specific symptoms

Medication may also be prescribed to help with symptoms such as low mood and anxiety, hallucinations, aggression, agitation and sleep disturbances.

The range of drugs that may be prescribed include:

  * antidepressants to treat symptoms of depression, anxiety, agitation or apathy
  * sleeping tablets or sedative antidepressants for sleep disturbance
  * anticonvulsant drugs to treat symptoms of agitation
  * antipsychotic drugs for hallucinations and delusions and sometimes for severe agitation and aggression.

All these medicines can have side effects, so it is important to try non-drug treatments first. If you can find out the cause of a person's symptoms and make changes or give them the right support, they may not need medication. Memory Clinics can give advice to help reduce symptoms without relying on medication.

Antipsychotic medication is often considered only when other options have failed. This is because side effects include sedation, dizziness, muscle stiffness, restlessness and increased risk of strokes.

### **Medication to relieve pain**

Recognising and treating pain is important for a person with dementia as they may not be able to say that they are in pain or understand questions about whether or where they are feeling pain. It may depend on their carer to notice pain symptoms; for example, difficulty sleeping, differences in their mood or behaviour, facial expression or body language. If you think the person you care for is in pain ask for advice from your GP.

### **Treatments at the Memory Clinic**

Memory Clinics may offer group therapies or individual support for people with dementia. Some examples are listed below.

#### Cognitive Stimulation Therapy (CST)

Cognitive Stimulation Therapy (CST) is a short-term treatment for people with mild to moderate dementia which helps keep their thought processes and memory active. It is run in groups, which meet once a week for a period of 14 weeks. The groups have a consistent structure with a different 'take-home message' each week. The groups provide an opportunity for people to meet others.

#### Talking Therapies

Talking Therapies provide an opportunity to talk to a trained professional, usually a clinical psychologist or specialist nurse, about problems or issues that are worrying them. They may help people in the earlier stages of dementia to make sense of what is happening to them. Family or friends who are carers may also benefit from talking therapies to talk about their feelings about their caring role.

#### Carers' course – Understanding Dementia

Some Memory Clinics run courses for family or friends of people with dementia to help them understand dementia and to support the person they care for. The courses run on afternoons or evenings over a period of weeks and cover topics such as memory and communication, physical and behaviour changes in dementia, legal and money matters, and future planning.

#### Individual consultations

Different professionals from Memory Clinics will be able to give advice and support to people with complex needs. The different roles of Memory Clinic professionals are described in the Guide to who's who in the 'Support' section.

### **Complementary therapies**

Complementary therapies are those that are not usually part of conventional medicine but sometimes might be used alongside medical treatments. If the person you care for is taking any herbal medicines (bought from health food shops or some chemists) check with their GP that these are safe for them. Remember to mention any complementary therapies if you are asked to list the medications someone is taking.
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# Day-to-day living

This part of the guide focuses on everyday living – and the planning that carers need to do.

There are sections on

  * Being a carer
  * Family dynamics
  * Adaptations at home
  * Adaptations for behaviour
  * Tips for reducing stress
  * Everyday activities
  * Getting out and about
  * Caring for physical health
  * Medicines and possible side effects
  * Hospital visits and stays
  * Preparing for difficult decisions
  * End of life care

## Planning ahead

People have different reactions to a diagnosis of dementia. For some it can be a relief to understand why they are having memory problems or other difficulties; for others it can be hard to come to terms with and can cause a lot of anxiety about the future. When someone you care about is given a diagnosis of dementia it is important, for both of you, to try to stay positive and active.It is still possible to live a full life after a diagnosis of dementia, although you may need to make adaptations for the person, as they need them.

You may want to plan ahead by finding out what support is available locally; for example, to make home life easier and safer for the person you care for but also to ensure that you have time to look after yourself as well.

This section discusses the things you can do to stay as positive and supportive as possible.

## 'I statements' for people with dementia

Professor Alastair Burns, NHS England's National Clinical Director for Dementia, wants everyone caring for people with dementia to be guided by the following 'I statements'. These are based on the expectations of people with dementia, gathered in large-scale research by the Dementia Action Alliance. Their aim is to remind us that every person with dementia is an individual with views and preferences, life experiences and expectations.

  1. I have personal choice and control or influence over decisions about me
  2. I know that services are designed around me and my needs
  3. I have support that helps me live my life
  4. I have the knowledge and know-how to get what I need
  5. I live in an enabling and supportive environment where I feel valued and understood
  6. I have a sense of belonging and of being a valued part of family, community and civic life
  7. I know there is research going on which delivers a better life for me now and hope for the future

The 'I statements' may seem to make big demands, especially if you are looking after someone under time pressure, are feeling isolated or are balancing the care of a family member with dementia and care of the rest of your family. But routine actions of the kinds described in this guide can make all the difference to the individual experience of someone with dementia.

Find more about Dementia Action's 'I statements' here
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## Being a carer

If you are family or the friend of someone with dementia you may need some time to adjust to your new role but your involvement is very important for the person you care for, whether they are living with you, on their own or in a care home. Professional carers also need to adapt their approach according to the individual person they are caring for, learning as much as they can about the person in order to support them well.

### Professional carers

#### Support to do your job

The 'I statements' listed at the start of this section set standards for the care people with dementia should be able to expect. As a carer, aiming to deliver to these expectations, you need the time and resources to do your job properly. If you know you are taking short cuts you may be putting the people you care for and yourself at risk. If you feel the pressure of your job is a problem and that you are not supported properly you must tell your management. There may be changes in your duties, or in team working, that could help you and the people you care for.

Most people working as carers also have family responsibilities and the stress of one role can tip over into the other. If you find that you feel more tired than usual, or are short-tempered either at work or at home, it is time to take stock and talk with colleagues about how you are feeling. There may be steps you can take as a team to improve the situation or it may be that you need support as an individual.

#### Working with the patient and their family

In any care setting, whether it is in hospital, a care home or the patient's own home, the family and friends of the patient play an important part in their lives. Sometimes they may be distressed. As a professional carer, you may feel they are making an additional demand on your time. But family and friends know the patient best and can be essential for communication with them. They can be a vital link to the patient's culture and traditions, which may be different from yours. So it is important that, while patients are your priority, you also involve the people who are significant to them. On very rare occasions, the involvement of family may not be helpful, but by and large it is better to work as a team to meet patient expectations.

You may also be in a position to guide families about the best approach to take and to recommend sources of support, such as Social Services for practical assistance and Community Care and Carers' Assessments, or voluntary groups for practical and emotional support. Here again the patient and their family and friends may have cultural and traditional expectations that differ from yours and it is important to try to understand and respect these. Over time, and with a collaborative approach, working with a patient's family and friends is likely to deliver better care for the patient.

The Carers Trust and Royal College of Nursing have developed an approach to professionals and family carers working together to support someone with dementia, called the Triangle of Care. It aims to get the best outcomes for the patient, making professionals aware of the needs of the person the are caring for and providing peace of mind for their family carers.

### Family carers

#### Adjusting to your new role

As a family carer you may need some time to adjust to your new situation. You may feel a sense of loss of the person as you used to know them, the support they may have given you in the past and the change in home life. However your involvement is very important for the person you care for, whether they are living with you, on their own, in a care home or temporarily in hospital.

It's easy to become caught up in practical arrangements but try to spend time together, share activities and talk about things, such as family or memories of things you have enjoyed. This helps you keep in touch with the person's needs, and also helps build a positive, if changing, relationship between you.

#### Finding support

Many carers are working as well as looking after a relative or friend with dementia. Even without the demands of a job, caring can be exhausting. You may need to pace activities and ask for help from others so that you can have time for yourself. You might be able to make arrangements for a member of the family who lives further away to help you out on some days, or for a friend or family member to do specific tasks such as the shopping.

The person you care for is entitled to a 'Community Care Assessment' by Social Services, which may result in care support or adjustments to your home to make day-to-day life easier. You are also entitled to a 'Carer's Assessment' to establish whether you have needs that could be supported by Social Services, given your commitments (for example, to work or to young children) and your physical health.

Let your GP know that you are a carer as they may be able to talk to you about your situation and you will be entitled to certain priorities, for example, to flu vaccinations.

#### Working with care professionals

With time you may become the main source of information about the health of the person you care for, as they may not be able to explain their symptoms for themselves. A first step in supporting them, if they agree, is to go together to their GP to sign a consent form so that their GP can talk to you about their health and care.

#### Government strategy for carers

The role of family carers in supporting people with health difficulties has been recognised by the government, which launched a Strategy for Carers in 2010. You can read about it and how it is being developed here.

#### **Community Care and Carers' Assessments**

### Community Care Assessment

After someone has received a diagnosis of dementia, they or their family or carers can ask Social Services to assess their needs, to see what kind of support will help them in their day-to-day life. This is called a Community Care Assessment. Depending on their needs, Social Services may arrange for them to attend a day centre, or for respite care, or someone to be with them while you have a break or catch up with things you need to do. Social Services may also recommend adjustments at home that will make it easier for the person to stay independent or for you to care for them.

### Carers' Assessment

As a family carer, you are entitled to have your own needs assessed. This is called a Carers' Assessment. It will take into account the care that you give and any other demands on you, such as working or having a young family, or any health needs you may have (for example, if you have a long term condition that affects your ability to care). Depending on the assessment, Social Services may propose additional support for you. For example, you may not be strong enough to help someone who has mobility or balance problems when they are having a bath or shower. In this case, Social Services may provide assistance with activities to make them easier or safer.

You can arrange both Community Care Assessments and Carers' Assessments in several ways: you can ask your GP, or the Memory Clinic, or contact Adult Social Services directly. Assessments are usually carried out in the home of the person with dementia. They can be carried out by Social Services directly or by another professional they have appointed; for example, someone from your Community Mental Health Team for older people.

You can ask for repeat assessments if there is a change in your needs or those of the person you care for.

Some support from Social Services is free. The cost of other services depends on the income and savings of the person receiving the support. Each year your local authority will provide details of the charges it will make for its services and will make an assessment of any charges it will make to you and the person you care for.

You can find out more about Community Care Assessments and Carers' Assessments from your local Social Services.

#### **If you become ill**

#### Social Services support

If you are the only person caring for someone and you become ill or need hospital treatment, Social Services will provide emergency support to help the person you care for. Although you may hope it won't happen, it makes sense to plan ahead in case of an emergency.

#### Registering with Carers Trust

The voluntary organisation, Carers Trust, and its network of independent charities, Crossroads Care, help with emergency care planning. You need to register in advance with them to set up a care plan which they will follow if you or emergency services contact them. They have 24-hour emergency phone lines. Once you have registered with them you can carry a Carers Emergency Card to show you have a plan. Crossroads cover immediate care. In the longer term, if needed, it is likely that Social Services will be able to support the person you care for. Find care and carer services near you.

#### Message in a Bottle scheme

If you are admitted to hospital as an emergency and, in the worst case, are unable to communicate about the person you care for, you can leave instructions for emergency services, using the Lions Message in a Bottle scheme. The scheme is free. You can get a special green plastic bottle to put in your fridge from GP surgeries and chemists or from organisations such as Age UK, council offices and police stations. The bottle comes with forms for you to fill out, to give details of the care both you and the person you care for might need. Emergency services know to look for the bottle when they arrive at someone's home.

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## Family dynamics

Family members may respond differently to the news that a relative has dementia and to the changes in family dynamics that can take place over time.

### **Sharing information and responsibility**

If you can share care responsibilities with others in the family, or friends, it can help both you and the person you care for. Some families may have long-standing issues and disagreements that limit communication with one another. However, it is good to remind each other that any personal disagreements should not get in the way of caring. If you feel it's necessary, you could set down some ground rules that you all stick to; for example, agreeing to listen to, and consider, everybody's opinion when decisions have to be made. Try to remember to communicate regularly and share information that you receive; for example, from the Memory Clinic or from other professionals involved with the person you care for.

### **If you are not** **the** **main carer**

If you are not the main carer, you can still provide help and support by

  * making time to visit and spend time with both the person with dementia and their carer, or asking them to visit you for a change of scenery
  * suggesting some things you can do regularly to help, such as a regular outing that will give the main carer a break
  * making regular phone calls to listen, share ideas and be supportive
  * helping with planning; for example, finding information about legal and financial aspects that are important in looking after someone who has been diagnosed with dementia.

Remember to be sensitive to the main carer's opinions and feelings. Ask regularly if there is anything more you can do to help.

### Early onset dementia and children

Children of a parent with early onset dementia are likely to need support to understand what is happening, how dementia affects their parent's behaviour and what other changes to expect. A child's age may affect their reactions to the situation. Children may become angry, pull away from their family or, because of embarrassment, withdraw from their friends. They may be afraid that they will also get dementia. Younger children may fear that their other parent will become ill. So as well as explanation they may also need reassurance.

In some families children may be carrying out responsibilities that were previously carried out by the person with dementia; for example, looking after a younger child or doing chores. They need time to talk about dementia and express their feelings. Each child will have different needs and it may take some effort to find out what these needs are and how you can meet them.

### **People living alone without family support**

If you are reading this as someone with dementia who does not have family support you may wonder how you will cope. Many people with dementia continue to live independently for a long time.

It's worthwhile making sure that people who know you and who you trust (for example, friends, neighbours, local shopkeepers) are aware of your situation. You may be able to get help to organise your home so it is easier for you to manage; for example, putting things you need everyday in cupboards that are easy to reach, and labelling them.

Your Memory Clinic will be able to advise you on assistive devices that can act as reminders and keep you safe at home. These are discussed in more detail in the section on Adaptations at home.

Be aware, though, that as dementia progresses, you will need extra support and that it is a good idea to plan for this early. Talk with friends and health professionals about how they can help you stay independent. You can ask Social Services and voluntary organisations about support services that can help you manage at home; for example, by doing shopping, laundry and helping with meals.

Make sure you have activities that will keep you in touch with other people. You can attend local activities; for example, Dementia Cafés, Singing for the Brain groups or gardening groups. You may be able to arrange transport to these activities via your local Social Services or voluntary groups (see Getting out and about).

### **Making a new home**

#### Decisions about where to live

For some people, the changes that come with dementia may prompt a move to a new home. They may:

  * choose to move to sheltered accommodation or to a care home because they feel they are safer there or that their life will be simpler
  * agree to move somewhere that is nearer to family or to move in with family
  * need to move, even though it is not their choice, because their care is too complex to manage at home. For example, they may need 24 hour care because they may wander at any time of day or night
  * have other illnesses, as well as dementia, that make it difficult to care for them at home.

#### Feelings about moving

Even when a person chooses to leave their home, the change can be difficult for them to get used to. If they have not made the change out of choice, the idea of moving and the change itself can be the cause of both anger and sadness. A move may increase their confusion and they may frequently ask to go home.

Moving a relative or friend from their own home can also be difficult for you as their carer. It may feel as though you are giving up on them, but in some cases, looking after someone with dementia can put the carer's health at risk. Sometimes residential care may be the only option.

The person you care for has the right to be consulted about a planned move. If they are able to make choices you should take them to see the home or homes you are considering and listen to their opinion about them. If they cannot make choices for themselves and you are acting on their behalf, you should make the choice in their best interest. If they have strong feelings against the home you are considering you should try to find alternatives.

When someone moves they should be able to take as many familiar things with them as they wish. Even if they are moving into a care home they may be able to take a favourite chair, pictures, books and other mementos that are important to them; and, of course, familiar clothes, shoes and personal care items. If someone has a pet which cannot go with them to their new home, voluntary organisations, such as the RSPCA, may help to find a home for it.

### **Guides to choosing a care home**

**The NHS** provides guidance on choosing a care home.

**Age UK** provides a guide and checklist for people choosing a home. You can access this online or by contacting Age UK by phone on 0800 169 6565 or by visiting one of their local offices.

**Alzheimer's Society** has a fact sheet about choosing a care home.

**Social Care Institute for Excellence** is a charity which provides a care-finding service for England and information via its website, Find Me Good Care.
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## Adaptations at home

Caring for someone at home may mean making some changes for safety or to make caring easier. Some quite small adjustments, such as improving lighting, can make a big difference.

Contents

A Community Care Assessment, carried out by your local Social Services, will advise on adaptations or equipment that could make home life easier and help the person you care for stay independent.

### **Memory aids**

Many people with dementia have difficulty remembering everyday things that they have previously taken for granted; for example, remembering the day of the week, remembering to take their medication, or to turn off their cooker or taps when they have finished using them. Some lapses in memory may not be so important but others can result in inconvenience or risk to safety.

If you are living with the person you care for, you will be able to help with prompts and reminders, but you may not be there all the time, so memory aids can still be useful. Someone living on their own may need several different memory aids to help them cope.

The following paragraphs give some suggestions for aids that may be helpful.

### Simple memory joggers

 Very basic aids, such as notes and reminders, clearly written and put in the place where someone carries out an activity can help; for example, reminders to check taps are turned off or to take keys when leaving the house. It can also help to provide reminders of what things go in cupboards or drawers, for example in a kitchen or bedroom. Clearly written labels or picture labels attached to cupboard doors or drawers may be useful.

If someone finds it hard to remember which room is which in their house it can help to keep doors open. This can be particularly important for the toilet, as not remembering where the toilet is can prevent people from getting there in time.

 Clocks that show the time of day, including whether it is day or night time, and the day of the week, can also help someone who cannot remember these easily.

#### Programmed devices

 More complex memory aids can help someone stay independent for longer. For example, small alarm devices can be programmed with voice prompts, to tell someone it's time to take their medicine, or have lunch, or go to bed. These need to be in a place where the person will hear them.

Some alarm devices can be worn on a belt or the wrist. Others can be put near the place where the person needs a reminder; for example, by the front door. They will be triggered either by opening the door or by the person passing through a beam that sets off the reminder.

 It's a good idea to start using these devices while the person is well enough to find them easy to respond to. It's hard to judge when is best but it is worth trying them before you think they are really needed. Some people need practice to learn how to use them properly. You can only find out if they will help by trying them. Some aids may just be too complex to learn.

#### Medicine containers

  There are special containers to help people take medicines at the right time. Simple pill trays with compartments for each day and time of day, can help keep someone on track. More sophisticated versions have compartments that you can program to open automatically at the time the pills should be taken. These sometimes have a sound alarm or flashing light as an additional reminder. Or a person's pharmacy can make up their pills in blister packs, with compartments for doses on different days of the week.

While pill dispensers and packs are useful it's wise not to rely on them but to check that the person you care for is taking their medication at the right time. They may take pills out of the box but still not remember to take them. If the pharmacy is filling blister packs you should check that these have been filled accurately with up-to-date prescriptions. As with other memory aids, it can be useful to get someone used to using these packs before they are completely reliant on them.

#### Phones and remote controls

 You may find it helpful to replace everyday home technology, such as phones and TV remote controls, with large button versions that are easier to see and use than standard versions. Phones can be programmed and their buttons clearly labelled with names or pictures of the important people someone might want to call.

### **Physical safety**

#### Detectors and sensors

 Reminders may not provide enough support on their own. You may need to add safety sensors that alert the person or you if there is a problem; for example, gas or smoke detectors in kitchens and flood detectors in bathrooms. Detectors can sound an alarm in the house.

Sensors can also be used to turn on lights when the house gets too dark, reducing the risk of falls, and to turn them off again when it is light. Similarly thermostats can be used to control heating and ensure a house does not get too cold or warm.

More sophisticated sensors, such as pressure mats and motion detectors can detect whether a person has moved from their chair or bed and can sound an alarm to alert you. There are also sensors that can detect if someone hasn't moved, which may mean they have had a fall or left their house and not returned. The person you care for may also agree to wear a pendant alarm that they can press to alert you if they fall, or are lost, or run into other problems.

 Different kinds of sensors can be combined and linked to a telecare system, which can contact you or a care service if activated by someone's movements.

#### Removing physical hazards

People's safety can also be improved by simple checks around their home to remove hazards. Look out for:

  * loose mats or furniture in the way of their typical routes across rooms
  * dark places where lighting could be improved
  * highly patterned floor surfaces which can make it difficult to judge depth, for example, on stairs
  * mirrors that might give a misleading impression of a space ahead to walk into
  * stairs where a stair gate or door could prevent the risk of falling.

There are many aids that can increase safety. You might consider:

  * grab rails; for example, on stairs, by the toilet, in the bathroom or shower
  * support frames around toilets
  * perch stools for use when washing at a basin, or bath or shower seats
  * bed rails that can prevent a person from falling out of bed
  * raised chairs and toilet seats to make it safer and easier to sit down and get up.

The changes you make will depend on the needs of the person you care for. You need to balance creating a safe place for them to move around with the risk of changing too much, too rapidly. As far as possible you should talk with them and get them involved with the changes you plan to make.

### **Mobility aids**

Many people with dementia become less mobile than they have been previously. Sometimes this is just a normal part of the ageing process but often it is a result of changes in the brain's ability to control movement. A walking stick or frame may help at first but as time progresses some people may need a wheelchair. Depending on where they live they may need a stair lift and possibly a hoist to help them get in and out of bed.

It is important for you not to struggle too much to help the person move. An injury to you from a fall with them may mean you cannot care for them. You should contact Social Services to ask for an assessment of the aids that they may need. Unfortunately, while walking sticks, frames and wheelchairs are likely to be provided free, you may need to hire, lease or buy more expensive aids.

In order to help someone stay at home you may consider options such as moving their bedroom downstairs or putting in a shower room so that they do not have to use a bath. Major adaptations to someone's home cannot be funded by Social Services but work, such as installing a shower room, is exempt from VAT. See the section 'Daily living equipment and adaptations to your home' in Legal and money matters.

In some cases, a person's home may become too difficult for them to manage and it will be time to consider whether they should move; for example, to sheltered accommodation or to a care home. The process of making this decision should be made with the person themselves, as is discussed in the section 'Making a new home' in Family dynamics.

### More information

The Foundation for Assistive Technologies has a useful brief guide to memory aids (PDF) on their website. Or you can ask them to send you the guide by calling 0300 330 1430.

There is more detailed information on memory, safety and mobility aids in factsheets from the Disabled Living Foundation.

For information about choosing assistive technologies and advice on selecting products visit

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  * AT Dementia

Product images in this section kindly supplied by AlzProducts (C) AlzProducts 2014.
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## Adaptations for behaviour

Responding to a person's changing behaviour can mean some new routines but can also open up new activities and contacts that can be enjoyable both for the person you care for and for you.

Contents

### Interpreting changes in behaviour

The different types of dementia can affect people's memory, thinking, reasoning, language and co-ordination. This means the person you care for may need help to do many of the things they used to manage without any problem. They may be upset by this changing situation and they may need encouragement and reassurance to do things that they were able to do in the past.

Dementia can lead to changes in a person's behaviour. For example, they may say or do things that they would not have done before. They may become restless, start hiding things, lose interest in things, perhaps become too trusting or become accusatory or uncharacteristically rude.

Your knowledge of the person you care for and their lifestyle, likes and dislikes may help you to understand what they might be feeling and why their behaviour has changed. You might be able to help them by adapting your plans. But you might not always get it right first time. You may have to go through a process of trial and error to find out what best meets their changing needs.

### Specific concerns for younger people with dementia

When a younger person has dementia, significant adjustments are likely to be needed for both them and their family. For instance, they may still be supporting their family, carving out a career or have financial commitments, such as a mortgage. They may face losing their job or role within the family, whilst still remaining physically fit. While the symptoms of dementia in younger people are the same as in older people, their emotional and physical responses vary a lot. They may find it particularly hard to come to terms with their reduced ability to organise their lives and carry out day-to-day tasks.

### Unexpected reactions

Changes in behaviour are often linked to the emotions someone feels because of the losses they experience with dementia. They may be unable to explain why they have done something or reacted in a certain way, and could feel threatened if asked directly 'Why?'. Try to be patient and look out for patterns that lead to uncharacteristic behaviour; for example, busy or noisy environments.

Define the problem

  * Exactly what happened?
  * When?
  * For how long?
  * Is there a pattern?

Consider the cause and how the person is feeling physically and emotionally

  * Have they misunderstood what was said or done?
  * Are they frustrated because they cannot manage something on their own?

Consider how you reacted

  * How did your reaction affect the person?

Think of new ways to deal with similar situations in the future. It may help to discuss the problem with someone else, such as your GP, a professional from your Memory Clinic team or another person with experience of caring. Discuss your feelings, too, as dealing with sudden changes in behaviour can be demanding emotionally.

Persevering with a flexible approach to new behaviour can reduce some of the stress involved and improve the quality of the relationship you have with the person. If the changes you make do not help, go back to the professionals you have spoken to for more advice.

### Lack of interest or response

Some people with dementia can appear withdrawn or uninterested in people and things around them. This could be a result of their reduced ability to recognise people or places, or to plan and initiate tasks or conversation. It could also be that their hearing needs to be checked. You can help by starting activities and conversations. Try not to be too demanding but to talk about things that are familiar and positive. For example, talk about family members the person likes, reminisce about things they have done in the past, go to familiar places for outings. A different place from home may engage them or prompt their memory. Even if they cannot talk about it they may enjoy walking around and seeing different things. Friends and family can also help by visiting you and talking about their news or by inviting you to visit them.

Local activities, such as Dementia Cafés and lunch clubs, or activity groups can be enjoyable and stimulating. If you are able to go to these activities, they can give you an opportunity to talk with others in a similar situation and sometimes get helpful tips from their experience.

See more about activities for people with dementia in Getting out and about.

The person you care for may have a general lack of interest in things because they are suffering from low mood. This might be because of changes that are happening to them or for some other, unrelated reason. If you think that the person is feeling low, you should try talking with them about their feelings to see if it helps.

Gentle activity, such as visiting a local park or garden centre, if they are able to walk or go in a wheelchair, may help lift their mood. If you see a steady dip in their mood and they become increasingly withdrawn you should ask for advice from your GP or Memory Clinic nurse. There may be medication or other therapies that could help them.

### Anxiety and agitated behaviour

People with dementia may experience feelings of anxiety as part of their dementia or as a reaction to the changes that are happening to them. If you see they are anxious you should try talking to them and giving them reassurance. If something is making them anxious (for example, an outing they don't want to do) you may want to postpone it until they are able to cope with it.

If you need to take the person out, for example, to go to the doctors or dentist, and you know they will be anxious, it may help to have another person with you. Most health professionals (including dentists and chiropodists) will visit a person in their home if they know it is very difficult to get them out. Other people, such as hairdressers or beauticians, may come to a customer's house if you ask them. These kinds of visits can help someone stay in touch with the life they used to have and things that have been important in the past.

Anxiety may make someone with dementia very dependent on the person they see as their main carer. They may be particularly anxious if you are not around, which can be difficult for you if you are working or need to go out for other reasons. If you are going to ask other people to be there instead of you, it is worthwhile getting the person you care for used to the idea early on, so that it becomes a routine. This will be better for them, and allow you to relax more when you are away from them.

There are many techniques you can use to reassure someone who is anxious. Some may be more effective than others:

  * acknowledge that they are anxious about something and talk to them about it rather than dismissing it or trying to explain it away
  * make eye contact as you talk to them
  * sometimes touch (for example, holding their hand or stroking their back or arm) can help
  * take time to reassure them, and try to avoid correcting or contradicting them
  * if you need to explain something, such as, why you are going out, use simple short phrases in a low calm voice.

If someone is highly anxious and agitated these kinds of techniques may not be enough on their own and you will need to talk with your GP or Memory Clinic nurse about what can be done to help them. There may be medication that can help.

### Ensuring good communication

### Help keep the person included

Talking with someone helps cut through the isolation they may feel and provides reassurance if they are having difficulty understanding what it going on.

Even if the person you care for is not able to communicate or appears not to be interested in communicating it is important that you keep talking with them, consulting them about choices and telling them about what is happening to them, or is about to happen to them (for example, you may be getting them ready to go out for a visit or reminding them that they need to brush their teeth).

If you are going to touch a person, for example, to wash them or help them move, you should tell them first, so that they are prepared for the sensation of touch and what is going to happen next.

Some people may seem to be irritated when you are talking to them and you need to be sensitive to this. It may be that there is some aspect of the way you are talking that they do not like; for example, you may be talking too loudly, or with a forced cheerfulness; they may be struggling to hear you because you are not talking loudly enough, or a TV is playing in the background and distracting them. Or they may have difficulty understanding a language or accent that is not the same as theirs. Try to respond by keeping the things you say as simple, clear and as calm as you can.

Remember that older people with dementia are likely to have hearing or sight loss so it will help them to understand if you are close to them, ideally at their level, when you talk to them. Be sensitive, though, as some people do not like to have someone very close to them.

### Listen to their needs

Make sure that as well as talking to the person you take the time to listen to their response, and to show that you are listening and responding. In social situations with several people together it can be easy to talk over a person with dementia. This can be frustrating for them and they may simply give up trying to join in. It is far better for them if you can, as a group, make time for them to join in the conversation.

It is very likely someone with dementia will repeat themselves, particularly if they are anxious about something. Remember that they probably won't remember that they have said something before and that it can be upsetting for them to be told that they are being repetitive. As far as possible, try to respond as if it's the first time they have mentioned something.

See more about ensuring good communication under Tips for reducing stress.

Communication is an essential part of responding to a person's needs. Care UK have a guide on communicating with people with dementia (PDF) and Alzheimer's Society also have a communication fact sheet.

### Case study: adapting to keep someone safe

My mother often leaves her flat without telling anyone where she's going. She's walked back to her old house a couple of times, crossing several main roads. She goes out at any time of night or day, in all weathers. She won't get in the car to come back with me and I'm worried that, to anyone passing by, it must look as though I'm bullying a frail old lady.

The carer talked with her support worker, who suggested several strategies:

  * fixing alarms on the doors of the house so that she knew when her mother was going out
  * making sure that her mother carried ID with a name and telephone number of a contact; ideally on a clearly visible pendant, if she would agree to wear one, so that people would be able to help her get home
  * driving her mother past her old house frequently, when going out for other reasons, so that her curiosity and anxiety about it was reduced
  * if she needed to collect her mother, using an offer of something better to do, depending on time of day (go to visit someone else, go home to watch a favourite DVD, go out for a coffee).

### Case study: adapting to keep someone healthy

My wife got angry after breakfast when I found her looking for biscuits in the cupboard and asked if she was still hungry. She tried to hide what she was doing. She told me to stop interfering. I am worried about her eating as she is putting on weight but she obviously feels she needs the food, or maybe doesn't have the self control she used to have. I think she was angry because she used to be 'in charge' in the kitchen and make all the decisions about meals. So it must have felt wrong that I was questioning her.

The carer talked with a Memory Clinic nurse about whether he should be so concerned that his wife was eating more. He mentioned that he liked to keep biscuits in the house for people who visited. With the nurse he agreed to take a more relaxed approach and leave just a few biscuits in the tin for his wife to snack on but also to leave out healthy snacks such as sliced fruit. He also kept a separate store of biscuits for visitors.

### Case study: adapting to avoid conflict

I find it very hard to get my father to take his pills, particularly at night. He has difficulty swallowing and sometimes chokes on them. He always questions whether I am giving him the right pills and sometimes refuses to take them, often being very insulting to me. It's upsetting but also makes me worried because he needs the pills for his heart.

The carer talked with her father's GP about whether there were other types of pill that would be easier for him to swallow, and whether she could reduce the number of pills he needed to take at night. The GP suggested changing the timings for the pills so that the most important ones were taken in the morning. One of the pills was swapped for a liquid medicine that was easier to take. Her father remained suspicious about his medicines but the friction was reduced by these changes.
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## Tips for reducing stress

The following listing is a reminder of some day-to-day techniques that can make things more comfortable and reduce stress for you or the person you care for.

Contents

### **Consider physical as well as mental health**

Physical problems can sometimes lead to changes in a person's behaviour. If the person you care for suddenly seems more confused or agitated than usual or has a series of falls, it could be due to their medication, or an infection. Urinary tract and chest infections are particularly common in older people. If you're concerned about a possible effect of medication or an infection, contact the GP. Other physical problems, such as pain, failing eyesight or hearing, can also lead to changes in behaviour and may make someone seem confused or withdrawn. See Caring for physical health for further information.

### **Allow plenty of time**

Try to avoid crowding too many things into one day. It often takes longer for someone with dementia to do routine things, such as getting dressed. It may help to avoid activities first thing in the morning, or following directly on from another. It may be better to plan only one activity in a day, and have some quiet days at home. Some people have more energy than others but even a visit from friends or a trip to the doctor can be tiring for someone with dementia.

### **Have a routine**

A routine that is reasonably consistent, for example specific days of the week for activities or visits, can help orient someone with dementia. If they are living alone, a routine can help them to plan and be ready. Writing things clearly in a calendar and reminding them of upcoming activities can also help.

### **Use the best time of the day**

Most people have times of day when they are more alert than others. Try to plan around these times. For example, it may suit the person you care for to be active in the mornings and have a rest in the afternoon; they may enjoy their main meal more at lunchtime than in the evening. Some people with dementia can be particularly confused or agitated in late afternoon or early evening. Everyone is different and the routine that suits one person may not work for another.

### **Avoid conflict**

A person with dementia may believe things that are not true. These may be simple things, such as mistaking the day of the week; or more difficult, such as thinking they can visit someone who is no longer alive, or that something important, such as paying a bill, hasn't been done. They may get distressed if you try to correct them. Try to divert their attention. If you can find an underlying reason for their anxiety, reassure them. Sometimes you may have to help them see they are wrong; for example, if they want to go out in the early hours of the morning. If conflicts are frequent ask for advice from your GP or Memory Clinic.

### **Keep things calm**

Some symptoms of dementia can eat away at your patience, particularly repetitive behaviours, dependency on you or erratic sleep patterns. Getting cross will upset the person you care for and make you feel guilty. If you do get cross, don't forget to say sorry and comfort them. Some things may help to calm them, such as a cup of tea, or looking at a family photo album, but these don't always work. Being able to take time away can help you keep patient. You may be able to ask a relative or friend to be there in your place; or arrange for the person to attend a day centre or for a support worker to take over for a while. If you feel you're being short tempered ask for help from your GP or Memory Clinic.

### **Remember that new information can be difficult**

A person with dementia will find it easier to remember familiar information than anything new, whether it is a new person, place or routine. For example, if they are prescribed a new medicine, they may not remember that they should take it, or why. They may become suspicious about it and query whether they should have it. Whenever you do something new, you may have to repeat reminders and explanations. Keeping things as familiar as possible will reduce the stress of new demands.

### **Keep choices simple**

Decision-making can be hard for someone with dementia, so try to give them very simple choices rather than a range of options. For example, rather than expecting them to find their clothes and get dressed you may get their clothes out for them, or give them a choice of 'red jumper or blue today?'. Similarly with choices of food: rather than asking 'what would you like to eat this evening?' you may need to make decisions, with some options, such as 'jacket potato or soup tonight?'.

### **Help to start activities**

A person with dementia may be confused by everyday tasks, such as eating, brushing teeth or getting dressed. If you can help with the first stages (for example, putting the knife and fork in their hands, or cutting up food so they can put it on their fork) you may find they are then able to take over and carry on the activity themselves.

### **Keep involved with your friends**

Some friends cope better than others when someone they know has dementia. Most friends will want to keep on including you in their lives but may not know the best way to do it. Visits to or from friends, particularly people who you have known for a long time, can provide links to memories and new topics of conversation. You may need to be sensitive, too, in case the person you care for enjoys seeing some people more than others, or prefers to see just one or two people, rather than a group.
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## Everyday activities

It's helpful for someone with dementia to have activities to do at home. Involving the person you care for in everyday things can help keep their mood positive, provide opportunities for conversation and keep their mental and physical skills going.

Activities are just as important if someone is living in a care home, as in their own home, although you may need to choose activities that fit with the home's routine.

### **Build on familiarity**

Activities that work best are likely to be ones that the person already has some interest in. For example, if they have been a keen gardener or interested in cooking, they may be happy to help in those activities.

### **Be flexible**

Keep the tasks you suggest simple. So, for example, a person who may not be able to follow a cake recipe might help with cake making by stirring the mixture; or a person with an interest in gardening might help with sweeping leaves or planting seeds, depending on their physical health.

If the person has a hobby, such as painting, collecting stamps or knitting you may be able to help them set up their equipment so they can continue with it. They may not be able to do things as well as in the past. Be careful not to criticise or correct and watch that they do not become frustrated. If something appears to be too difficult, try adapting the activity; for example, helping you look through and sort old paintings in their collection, or looking at and talking about old knitting patterns.

Some people may need short instructions and reassurance (for example: 'hold the spoon here...', then 'put it in the bowl...', then 'you can stir the mixture') and gentle prompts for getting started.

### **Focus on enjoyment**

An activity with an end result can give a sense of satisfaction; for example, a pile of leaves that can be bagged up or made into a bonfire, or a cake that can be shared. But if you get the feeling the person isn't enjoying the activity, don't force them to complete it, even if it's something they used to enjoy. It may be that their likes and dislikes have changed. End results are satisfying but enjoying the task should be the priority.

### **Join in the task**

A person is much more likely to want to take part in an activity if you join in with it enthusiastically. Your energy will encourage them. For example, you may be able to do crosswords or puzzles together, or play games such as draughts or dominoes. They may enjoy you reading books or newspapers to them, or looking at things that will jog their memory, such as old football match programmes. You can also share listening to music or watching films that they are fond of. If there are films, TV programmes or videos that match their interests (for example, in wild life, travel or sport) these may be particularly enjoyable and help spark conversation.

### **Memory albums**

Another way to keep up conversation and activity is by making an album of memories of a person's life; for example, using photographs, postcards and newspaper cuttings that show them and events from their early years, through to the present day. You can keep on adding to this; for example, if you have a special event in the family, or a visit or holiday that the person has enjoyed. Working to create the album together can be an enjoyable activity for both of you. Label the things you put in the album with easy-to-read text so that the person can look back through it if they want to.

Memories can also be stimulated by a familiar object, such as an ornament or toy, or something with a scent; for example, a lavender bag. You might try these other routes to stimulate memory, as well as a memory album.

### **Activities with other people**

Many people with dementia and their carers enjoy getting involved with local activities, such as Dementia Cafés and lunch clubs, or activity groups such as Singing for the Brain or gardening groups. These kinds of activity give an opportunity to talk with others in a similar situation. See more about these kinds of activities in the section Getting out and about.
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## Getting out and about

A diagnosis of dementia does not mean someone has to completely change their activities. A little planning ahead can smooth arrangements for their normal activities and make the experience comfortable.

### **Local activities**

If you can provide support, helping someone get out of their house or care home to take part in activities will mean they can keep in touch with people and enjoy more variety. If, for example, a person attends a social club, exercise class or interest group, try to keep those going, as long as they are comfortable with them.

In any group of people, particularly older people, there are likely to be one or two who have difficulty with mobility or with their memory. Often social groups organise themselves informally to help one another. If the person you care for is beginning to have some difficulties it might be worthwhile telling other people in the group, or the group organiser, so that they help if necessary. It's just something to keep an eye on, rather than making sudden changes.

### Activities organised for people with dementia

Most local areas have activities organised specifically for people with dementia and their carers. They can be a good way to meet other people in a similar situation. Information about activities is usually available from local organisations such as Alzheimer's Society and Age UK. Local libraries may also have flyers or other information showing what activities are available in your area.

As with all new things, it will probably be easier to join a new group at an earlier stage after diagnosis than later and this can be useful in helping someone stay active and involved with people as time goes on.

#### Dementia Cafés

Sometimes also called Alzheimer's Cafés or Memory Cafés. These are held on regular days. There is normally some activity to enjoy (such as a quiz) and an opportunity to chat with other people. They are usually organised either by the Alzheimer's Society or Age UK.

#### Exercise classes

Physical activity can keep someone mentally stimulated and reduce the risk of low mood. Age UK run a programme called "Active Living" which includes exercise classes and physical activities, such as walking. Some of their exercise classes are seated so can be suitable for people with limited mobility. The Alzheimer's Society also runs exercise classes. You may also be able to find local gardening projects that can be an enjoyable way of keeping active.

#### Musical activities

Music can improve people's mood and calm them if they tend to be agitated. If the person you care for has belonged to a music group or choir they may want to continue with that as long as they feel able. The Alzheimer's Society runs 'Singing for the Brain' groups for people with dementia and their carers. Even if the person you care for doesn't sing they may enjoy tapping out rhythms or dancing. They may remember music from the past when other memories are lost.

#### Reminiscence activities

Some groups, such as Dementia Cafés and day centres, or museums or libraries, run activities based around memories of things from the past. You may also have things or photographs at home that you can use to start a reminiscence conversation. Or there may be a place that you could visit that might prompt happy memories.

With this in mind, remember that not everyone enjoys reminiscing about their past. If it seems to cause distress then it is better not to continue with it.

#### Day centres

The person you care for may attend a day centre at times when you are not able to look after them. Most day centres have activities similar to those described in this section. Your local Council will be able to provide you details of day centre care.

### **Day trips and holidays**

Many people enjoy making day trips or taking longer holidays. When someone has been diagnosed with dementia they may decide to do as much travel as they can while they are still able. Or they may be less confident about travelling and prefer to stay close to home. There are no hard and fast rules about this. Much depends on the preferences of the person and how well they are at the time of diagnosis.

Holidays are for relaxation. They should be a time for you and the person you care for to enjoy a break from home, so trips that are likely to be stressful may be best avoided. Travelling to familiar places, with shorter journey times, may be easier than discovering new, distant places. Think through the details of any trip you plan. Many hotels and some B&Bs have accessible bedrooms that may be helpful for people with mobility problems.

You also need to consider whether the place you are going is accessible outside the hotel room. You can ask transport providers to provide help at airports and stations. You may need to have plans for what to do if there are delays and the person you care for becomes tired or distressed. If they are taking medication, make sure you have it with you, in case of delays.

Taking other people with you will add to the enjoyment of a holiday. It may provide company and mean that you have more of a break if you can share looking after someone with others.

Check any holiday insurance you take out, so that you know the person with dementia is fully covered. Some insurers will not cover a person if they have a problem that is a direct result of their dementia but there are insurers who specialise in covering people with disabilities.

The Alzheimer's Society article 'Travelling and going on holiday' provides a good checklist of things to consider when thinking about holidays.

### **Driving and transport**

Driving demands levels of attention and speed of reaction. These may be reduced in someone with dementia or mild cognitive impairment. If a person has been diagnosed with dementia they must inform the DVLA. Failing to do so could result in a fine (see section Legal and money matters for more details). A person with a diagnosis of dementia should also inform their car insurance company.

The DVLA will then make a decision about whether the person is able to continue driving. After this decision, they will either withdraw their licence or continue their licence for a period of one, two or three years. You may have to suggest to the person that they give up driving in order to keep them and other people safe. This often causes people distress as it signals a real loss of independence. They may need reassurance that there are alternatives to driving. If your annual mileage is low, giving up your car and using taxis and buses will be cheaper. You may be entitled to use Council transport for people with disabilities.

As a carer you have a responsibility to inform the DVLA of any change in a person's ability to drive. If you need advice about this, contact your Memory Clinic or a dementia advisor.

Even if someone has been told they are still safe to drive you might want to consider the following tips to improve their safety:

  * keep to short journeys, along routes they know well
  * avoid busy areas or times of day
  * avoid night or bad weather driving
  * leave plenty of time for the journey and do not let them drive if they are stressed or upset.

If you are unsure whether a person should still be driving you can book a driving assessment, for a fee, at your Regional Driving Assessment Centre. After the assessment a person is given immediate advice followed by a confidential report.

For more information about driving assessments see <https://www.rdac.co.uk/services/driving-assessment/>

The DVLA can be contacted on

  * Telephone: 0300 790 6806
  * Website: www.gov.uk/contact-the-dvla

#### **Blue Badge parking**

If either you or the person you care for is unable to walk or finds walking difficult you may be eligible for the Disabled Parking Scheme (the Blue Badge scheme). If you have a Blue Badge you will be able to park closer to places you are visiting. If you do not have your own car but use taxis, they can also use your Blue Badge to park closer to your destination.

You can apply for a Blue Badge by contacting your local Council offices.
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## Caring for physical health

Physical health problems can be difficult to recognise in a person with dementia and, as dementia progresses, the person you care for may not be able to tell you about symptoms they are experiencing.

Contents

People with dementia tend to be diagnosed with infections and other illnesses much later than people without dementia. This is because the person themselves may not recognise their symptoms or talk about them. Symptoms may also be difficult for carers and medical staff to see. The result is often that problems are spotted later, when they are harder to treat and may need hospital treatment.

It is important to be aware of the common physical problems that can affect people with dementia. If you act on early symptoms you can help avoid unnecessary suffering and may prevent stays in hospital.

### **Infections**

The person you care for may develop an infection and not realise they are unwell. People are more likely to fall if they have an infection. They may also become suddenly confused over hours or days and have hallucinations, seeing people and things that are not there. At first this may seem like another symptom of their dementia. But if you know someone's normal behaviour, you will probably know when that pattern changes. If you see changes, or if the persons dementia symptoms suddenly become worse, ask your GP for a check to rule out infection. Similarly if the person is in hospital, you may see changes that the hospital staff have not noticed. Tell staff about them.

### **Pain**

A person with dementia may not talk about being in pain, but could be in severe distress. This may show as agitated or irritable behaviour. Doctors often prescribe painkillers like paracetamol to use 'as required', but then they are not given because the person does not ask for them. Learning to recognise signs that someone is in pain and giving them regular pain medication could help.

Some conditions such as arthritis, fractures, pain following an operation, or cancer may require strong painkillers. A specialist pain nurse or doctor may give advice on use of these medicines. They often cause side effects, such as drowsiness and constipation, so the dose needs to be adjusted carefully.

If you notice any of these signs, they could indication the person you care for is in pain. Mention them to their GP or medical staff caring for them:

  * crying out, particularly when they move or are helped to move
  * tense expression on their face
  * change in body language, particularly protecting a part of their body
  * changes in behaviour: either becoming quiet and withdrawn or increased movement, shouting or swearing.

### **Skin condition**

A person's skin can change as they get older. It may become dry and flaky. This could make them itch, leading them to scratch and bruise their skin. Regular moisturising will help. Try to check their skin regularly at bath or dressing time.

If a person has trouble controlling their bladder (incontinence) and is not kept clean and dry, their skin may become irritated.

### Pressure sores

Older and less mobile people are likely to develop pressure sores if they are not moved frequently. Even if someone is bedridden or spends a lot of time sitting in a chair it is possible to reduce the effects of pressure by changing their position regularly. Pressure sores show initially as red areas on the skin. Untreated sores can quickly become deep, painful and infected, so check the person's skin daily for any red or broken areas. If you notice any skin changes, such as colour change, roughness or broken skin, tell nursing or medical staff, so they can take immediate steps to prevent pressure sores.

### **Falls and mobility**

Falls are very common. They are amongst the most common reasons why people with dementia end up in hospital. Falls can lead to fractured wrists, hips and ribs, or to cuts and bruises. After a person has had a fall they may develop a strong fear of falling, and anxiety.

In many cases, falls can be avoided. They are more common when a person cannot see well, has balance problems or trips over hazards such as footstools, rugs and loose carpets. Other medical reasons for falls can be heart conditions, changes in blood pressure, having an infection and unsuitable medication.

If a person has had two or more falls in the last year, they are described as being 'high risk'. There is a special service to help people who are at risk of falls and you should ask your GP for an appointment to see them.

### **Incontinence**

As dementia progresses, people may have problems controlling their bladder and bowel (incontinence). There are many causes of incontinence that are not a result of dementia: infections, the medication a person is taking or constipation. Incontinence can also be caused by prostate problems in men or prolapse of the womb in women.

With dementia, some people have problems recognising the feeling of needing to use the toilet, or cannot get there quickly enough. They may no longer recognise the toilet.

Continence problems can make a person anxious and not want to leave the house. Their sleep may be disturbed and, if they get up because they are wet or soiled, they are at risk of falls. So it is important to talk with their GP or a specialist incontinence nurse to get advice.

When incontinence is caused by a bladder infection it must be treated by antibiotics. Infection is diagnosed by tests of urine samples, but these tests can sometimes be inaccurate. This may mean that someone is prescribed antibiotics unnecessarily. So if a person has had two courses of antibiotics in a short space of time, they may need further investigation to find out if there is another cause of incontinence that has been missed. A review by an incontinence nurse could also help. You can ask your GP to make a referral for a review.

### **Constipation**

Many older people suffer from constipation, particularly if they are less active than they used to be. Scar tissue from operations people may have had in the past can also make the bowel less efficient. Some conditions, like Parkinson's disease, can affect the bowel. Constipation can also be a side effect of some medication.

In people with dementia, loss of appetite may mean they are not eating enough fibre or drinking enough fluids to keep their bowel working regularly. They may not go to the toilet when they need to and this can cause constipation. You need to help the person you care for to follow a diet that will help reduce constipation. If it is possible, encourage gentle exercise, such as walking around the garden.

Severe constipation can cause bloating and pain and, sometimes, leakage from the bowel, which might be mistaken for incontinence. If the person you care for suffers from these symptoms, contact your GP or district nurse for advice on how to help them.

### **Frailty**

The person you care for may not be eating or have as much energy as before, and could be becoming more frail. Frailty can increase the risk of the physical problems described above. The following frailty checklist shows changes you need to look out for and discuss with your GP:

  * weight loss of more than 10 pounds in the last year
  * weakness and decreasing muscle strength
  * exhaustion or low endurance and energy levels
  * slowness
  * low physical activity levels.

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## Medicines and possible side effects

### Prescriptions

Some medicines to manage dementia symptoms may be prescribed, initially, by the pharmacy at the Memory Clinic. This is because the prescription may need adjustment over the first few weeks or longer. Once the clinic is sure the prescription is right, they will hand over repeat prescribing to your GP.

The GP will prescribe other medicines a person needs; for example, pills for blood pressure, or pain relief.

Make sure that the person you care for has an up-to-date supply of all their medications. This may mean contacting the clinic, pharmacy and GP for repeat prescriptions, at least initially.

### Possible side effects

All medicines have some side effects. This should not put someone off taking medicine that is essential. Some common side effects are listed in the table below. If you notice symptoms which you think might be medicines side effects, discuss them with your doctor.

**Medicine type** | **Medicine name** | **Common potential side effects**

---|---|---

pain killers: opiates | Codeine, Cocodamol, Codydramol, Tramadol | drowsiness, constipation, worsening confusion

pain killers: NSAIDs | Diclofenac, Brufen, Naproxen | heartburn (gastric irritation), gastric bleeding (black stools), kidney problems

water tablets/diuretics | Bendroflumethiazide, Furosemide | needing to urinate at night, reduced sodium levels resulting in confusion

antidepressants | Citalopram, Sertraline, Fluoxetine | reduced sodium levels resulting in confusion, loose stools

antidepressants | Amitriptyline, Dosulepin | drowsiness, worsening confusion, urinary retention, constipation

sleeping tablets | Lorazepam, Temazepam, Diazepam, Zopiclone, Zolpidem | drowsiness, increased risk of falls

blood thinners | Warfarin, Aspirin, Clopidogrel | increased risk of bleeding, bruises in case of falls
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## Hospital visits and stays

It is very likely that the person you care for will need to visit hospital, either as an outpatient or to stay. Hospital routines can be difficult for someone with dementia but you can help them by liaising with hospital staff.

### **Hospital appointments**

Taking the person you care for to hospital outpatients appointments can be stressful. Planning ahead can help. If an appointment is scheduled too early for you to get there comfortably, phone the clinic and ask for a later time. It may help to explain why.

Hospitals have reserved spaces for people with a Disabled Parking Scheme badge (Blue Badge). If you will need help getting from the hospital car park or public bus stop to the clinic, phone the hospital ahead of your appointment and let them know when you will be arriving. They should be able to send someone to help you.

If you contact hospitals they may also be able to arrange transport to the hospital but they may, alternatively, ask you to arrange transport via the GP.

### **Staying in hospital**

If the person you care for is admitted to hospital, staff may not be aware of their dementia. Please let them know.

Tell staff what things will make the person you care for comfortable and if there are other things that might upset them. You can ask to talk to the nurse responsible for them, or to the ward sister, to explain their usual routine. These details can be put in the person's notes.

It can be helpful if you write out key things that are important; for example:

  * whether a person likes to be called by their first name or not
  * the kinds of foods they like and how they take their tea or coffee
  * any allergies or reactions to specific medicines that they have
  * whether they need help with personal care, for example, brushing their teeth or taking out and putting in false teeth, and so on.

On some wards a booklet called 'Information about me' is provided for you to record details that are important. But even if you are not asked to fill in one of these booklets, nursing staff will still need the information you can provide to look after the person well.

There may be things someone with dementia will find difficult to do for themselves, such as choosing their meals from a hospital menu, asking for drinks and drinking itself, or getting to the toilet. Many hospitals have a Carer Passport scheme which allows you to be on the ward with the person you care for at any time. This means you will be able to reassure the person and help with their care (for example, washing, dressing and feeding them) if needed.

If you cannot be on the ward and you think the person's care needs are not being met, ask to talk with the ward sister to explain their needs and routine.

Some hospitals use a 'red tray scheme' to signal to staff that a person needs help with eating and drinking. If you have concerns, you could ask for a person to be included in the scheme. Many hospital wards also have volunteers to help patients at mealtimes.

### **If you have questions about hospital care**

Your first point of contact on the ward is the nursing staff. You can speak to them in person or phone the ward to talk to them.

Every hospital patient has a doctor who is responsible for their medical treatment and also for decisions about when they are well enough to leave. If you would like to talk to the doctor but cannot see them on the ward you can ask for their phone number to arrange a time to talk.

Larger hospitals have liaison psychiatry teams who work across all wards. Their specialists in dementia care can be consulted about problems.

If you notice changes in the person's condition (for example, if they are more confused than usual) mention it to the nurse responsible for them or the ward sister. You know the person and may be the first to pick up signs of change. A person's condition may change as a response to different or new medication. Again, you should tell hospital staff what you have noticed and ask for it to be investigated.

If you have concerns about how someone is being treated and you do not think ward staff are responding you may be able to get help from the hospital's **Patient Advice and Liaison Service (PALS)** , which you will be able to contact in person or by phone or email. They are not available at weekends.
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## Preparing for difficult decisions

As you become the key decision-maker for someone with dementia, you may face some difficult decisions about their care.

**Some are discussed in this section and also inLegal and money matters.**

If you are able to discuss future decision-making while the person is well enough it will help you to get a better understanding of their feelings and preferences. This can be upsetting for both of you. It may help to involve someone else, such as other family members, a doctor, Memory Clinic nurse or support worker with experience of dementia care.

There may be times when you need to make a decision that would not be the person's preference. This might be necessary to make sure they or other people (including you) are safe.

Below are some of the decisions that can be difficult for people. Everyone will face different decisions, depending on how the person they care for is affected by dementia and what their living arrangements are.

### **Decisions affecting where a person lives**

### Having someone else look after the person

The person you care for may want you to care for them all the time, but that isn't always possible. If you are working or need a break or are not able to do everything for them (for example, lifting them) you will need to get help, so they can stay longer in their own home. This can be a carer who stays with the person at home or takes them out. If this doesn't work well initially, you may need to try different approaches. It may be that the person simply didn't like the particular carer who came, or the place they visited if they went out.

### Making adjustments at home

Even small changes, such as installing grab rails in the bathroom and toilet (see Adaptations at home) can be upsetting for some people, as they are an outward sign of a person's illness and the change in their life. But they can be essential for safety. Some changes can be particularly upsetting; for example, moving someone's bedroom downstairs so they don't have to manage stairs; moving from a shared bedroom to separate rooms, if necessary.

### Moving someone from their current home

You may decide to move a relative to live with you, or to live in a house or flat that is easier for them to manage (such as sheltered accommodation) or, if they cannot be looked after at home, to a care home. All these decisions are difficult and likely to be upsetting for the person themselves. See 'Making a new home' in Family dynamics.

Occasionally, if a person's symptoms are impossible to manage at home or in a care home, they may have to be moved, at least for a while, to a specialist hospital ward. While this may be essential for safety it can be very upsetting. You should be able to talk with their psychiatrist about this decision and what it may mean for their long term care.

### Moving someone from hospital to a care home or nursing home

People who have been in hospital usually look forward to coming home. You may be able to build a package of home care, with the help of Social Services and care agencies, so that a person can return home. But it may be a better decision to allow them some time for recovery in a nursing home before making a further decision about whether they can return home. In this situation the hospital social work team will help to arrange a nursing or residential home for them to move to, at least initially.

### **Decisions about medical treatment**

A person may have made decisions about the kind of treatment they want or do not want towards the end of their life. They may have given legally-binding instructions in an Advance Decision. For example, they may have said that if they have a cardiac arrest, medical teams should not attempt to resuscitate them. Preparing Advance Decisions is discussed in the sections on End of life care and Legal and money matters.

Decisions about end of life care are difficult. You may have to weigh up the benefits of treatments against how they might affect the quality of life of the person; for example, if they need to go into hospital for major surgery, rather than stay at home. It is important to remember that, whether it is decided to have treatment or not, the medical team caring for them will still do their best to ensure they are comfortable and free from pain. Refusing further medical treatment does not mean they will not be cared for.

Hospitals have specialists in the care of the elderly. They have wide experience of the decisions that people may face at the end of their lives. GPs are also trained to help patients consider the benefits and consequences of treatment. You should be able to get advice from hospital specialists or your GP about the consequences of deciding whether to accept or refuse treatment for the person you care for.

It may be that you need to make decisions on a person's behalf about the treatment they receive. You are able to do this if they have given you Lasting Power of Attorney for Health and Welfare (see Legal and money matters).

If you do not have Lasting Power of Attorney for Health and Welfare for the person you care for, you may need a Mental Capacity Assessment to confirm whether or not they are able to make their own decisions about their treatment. The person's GP or solicitor can carry out the assessment for a fee.
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## End of life care

End of life care, or palliative care, is the term use for care of someone as they approach their death. The aim of end of life care is to ensure that the person dies with dignity and also that the people close to them are supported.

### **Ensuring a person's wishes are respected**

Most people, whether they have dementia or not, would like to die peacefully and free from pain, with the comfort of those they are close to. For the family and friends of someone who is dying it is a priority that the person's wishes are respected.

Good end of life care should ensure that

  * the person is physically comfortable
  * they are free from emotional distress
  * their religious or spiritual needs and other requests are listened to and met.

Discussing dying is difficult. The person you care for may have many active years ahead of them and their focus should be on living well. But some people may lose the ability to tell others their wishes for the end of their life. So, although it can be distressing, it can also bring some peace of mind to think and talk about their preferences. They may need to talk about this more than once if their feelings about their care change.

### **Guiding care professionals**

Memory clinics, GPs and hospitals have forms that people can use to plan their end of life care and guide doctors, nurses and other staff. Some of the forms are legally binding and others are not.

_Advance statements_ are statements of wishes and preferences for care. A person can use them to tell professionals who they would like to be consulted about their care, if they cannot make decisions themselves. Advance statements are not legally binding but professionals will try to follow them as far as possible.

_Advance Decisions_ (sometimes called _Advance Directives, Advance Decisions for Refusal of Treatment_ or _ADRTs_ ) are legally binding in England and Wales. Advance Decisions are documents where a person can say if there are certain kinds of treatments they do not want in order to prolong their life. These documents are only used if the person loses mental capacity to make decisions about their care. If an Advance Decision has been made it means that carers and families can make decisions on their behalf, knowing they are broadly following the person's wishes. Advance Decision forms can be completed with support from healthcare professionals, such as GPs or nurse specialists in palliative care. (Also refer to the section on decisions about medical treatment in Preparing for difficult decisions and on the meaning of mental capacity in Legal and money matters.)

Even if someone has not made Advance Decisions, planning end of life care sometimes includes discussion of resuscitation; that is, whether medical teams should attempt to re-start someone's heart if it should stop. The person may decide to sign a _Do Not Attempt Cardiopulmonary Resuscitation_ (DNACPR) form. They may also decide not to sign this form and should not feel pressure to sign if they do not want to. A DNACPR only deals with restarting the heart. It does not affect any other medical treatments, such as giving antibiotics or feeding, which are an important part of ensuring quality of life, even at end of life. If possible, the person you care for should discuss their decisions with you and other people they feel are important to them. However, even if a DNACPR has been signed, it is the medical team's decision whether the circumstances are right to follow it.

The decisions make in advance statements and decisions may not always be possible to follow. Carers and families should not feel guilty if plans have to be changed in the best interest of the person they are caring for.

### **Approaching end-of-life with dementia**

Recognising when a person with dementia is approaching the end of their life can be difficult. Some symptoms that can indicate a person is reaching end of life include:

  * speech which is limited to single words
  * needing help with everyday activities,
  * reduced eating and difficulties swallowing
  * bowel and bladder incontinence
  * inability to walk or stand and becoming bed-bound.

However, some people with these symptoms may still be physically strong and the symptoms do not mean that their death is imminent.

#### **Caring for someone's physical needs**

Even in the final stages of dementia people can still experience pain, which may cause agitation and distress. Pain may be recognised by carers and families who know the person better than medical staff who are treating them. Signs of pain include agitation and bodily changes such as a high temperature, sweating or looking very pale. (There is more on recognising and treating pain in Caring for physical health).

In moderate or advanced dementia people can be physically aggressive, experience hallucinations, be agitated or anxious and have sleeping disorders. These symptoms can cause emotional and physical stress for the person and their carers.

People with dementia may struggle to eat and drink due to difficulties in swallowing, They may need help to eat and drink so that they are properly nourished and hydrated. However, for some people, in the very final stages of dementia, not eating or drinking can be part of the 'shutting down' dying process. Care for a person who is no longer eating or drinking normally should include:

  * keeping their lips moist and clean
  * providing sips of iced water or juice, or an ice cube
  * moistening their mouth and applying lip balm to keep them comfortable.

Sometimes when someone with dementia is struggling to eat and drink there may be other reversible causes, such as an infection that can be treated. Artificial nutrition and hydration through tube feeding might be suggested. Feeding by tubes can be distressing for the person if they cannot understand the treatment and equipment. It is usually only considered if it can bring an improvement for them.

#### **Caring for someone's emotional and spiritual needs**

It is important to keep up meaningful contact with the person you are caring for by talking to them, perhaps holding their hand, helping them drink if they are able, brushing their hair etc. Familiar aromas, music or rituals, including prayers or readings, may help provide calm and reassurance.

Advance care planning may have highlighted where the person would like to be cared for, for example at home or at a hospice. Responding to this wish will require coordination of all those involved in their care, and may involve their GP, district nurses or hospice staff.

Although, as a family member, you may be prepared for their death of the person you are caring for, it is still likely that you will experience grief and may need bereavement support after they have died. It can be a time of mixed emotions with some families feeling relief, and then feeling guilty at this response.

There are practical issues to deal with, such as registering the death, funeral plans and changes to financial and legal documents and benefits. Sometimes these processes occupy carers and they experience a 'delayed bereavement' when they have to adjust to no longer having to care for someone who has been so important to them. Emotional support can be found through talking to family and friends, but also speaking to your GP.

More information about end of life care can be found at Dying Matters which raises awareness of dying, death and bereavement. 
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# Finding the support you need

This section explains who does what in caring for people with dementia. And it tells you who you can contact for help and support.

It includes

  * A Who's who listing explaining what the different organisations involved in supporting people with dementia do – and helps you find the right people to talk to when you have a query or concern. Support organisations work closely with one another so if they are not able to help you themselves they may direct you to the right organisation for your enquiry.
  * A list of contact details for national organisations that offer support and services for people with dementia and their carers.

  * For some areas in the England you may be able to find details of local support from the NHS Dementia Roadmap. This is an information web site but is still in development and areas are being added one by one. If you cannot find information about your area on the Roadmap web site, national organisations such as Age UK or Alzheimer's Society may also be able to provide up-to-date, local information **.**

A key source of information for carers of people with dementia are courses run by Memory Clinics. Contact your local clinic for more information.

The Dementia Roadmap is available from <http://dementiaroadmap.info/> Remember that local information for your area may not yet be available on the Roadmap web site. 
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## Guide to who's who

Understanding the services and support that is available from different organisations, and how they connect, will help you find and manage support for the person you care for.

Contents

### Who to contact for healthcare, support and funding

The **NHS** provides medical care, referral and treatment. Its services include

  * Your GP
  * Hospital clinics and wards
  * Memory clinic and community  
mental health services
  * Accident and Emergency (A&E)

Your GP is the route to all NHS hospital and clinic services, apart from emergencies. Hospitals and clinics will feed back results of tests or decisions and recommendations about your care to your GP.

**Community organisations** provide community care support, and can give help to access funding. They include voluntary organisations such as:

  * Age UK
  * Alzheimer's Society
  * Carers UK
  * Crossroads

**Social Services** are run by your local authority and provide community care services and some funding. Social Services support includes

  * Parking and transport
  * Council Tax relief
  * Care Services
  * Home adaptations

**Department for Work and Pensions (DWP)** provides financial support depending on your situation and needs, including

  * Allowances
  * Benefits
  * Pensions

### **Who to contact for medical care, referral and treatment**

#### Your GP

A GP is responsible for the health of their patients at home and sees them for all health problems. A GP may refer patients to specialist doctors for diagnosis and treatment, and receives reports and advice about treatments from specialists.

#### District Nurses

District Nurses are an essential part of later stage home care. They visit patients at home to help treat physical symptoms, such as pressure sores and continence problems. They can help to access additional medical care and support. GPs or other medical professionals may refer you to your local District Nursing team.

#### NHS hospital clinics and wards

Hospitals provide specialist medical care that is not provided by a GP. A person may be referred to hospital by their GP, moved from Accident and Emergency (A&E) to hospital wards, or be given appointments by A&E to come back to a clinic. There is specialist mental health care in general hospitals to support people with dementia.

#### Accident and Emergency (A&E)

Hospital A&E departments give urgent and immediate care. A person may be referred to A&E by their GP, out-of-hours GP or other medical service; or they may call an ambulance, or come to the hospital independently.

#### NHS Memory Clinic and Community Mental Health Team

**Psychiatrists** Doctors based at Memory Clinics who may make home visits. Also available in general hospitals to support patients with dementia. They help with diagnosis and may prescribe medication.

**Clinic and community mental health nurses** Specialist dementia care nurses who support patients with complex needs. They advise on day-to-day care and comfort, and suggest other services that provide support.

**Nurse prescribers** Nurses who specialise in dementia medication. They may prescribe medicines (instead of the psychiatrist), adjusting medicine dosage at follow up appointments.

**Occupational therapists (OT)** Work with Memory Clinics and hospitals to assess needs of people with dementia at home and recommend equipment to help with memory and mobility. May carry out Community Care and Carers' Assessments for Social Services. May also give more general advice or suggest other services and support to help a patient.

**Speech and language therapists** Specialists in communication problems and difficulties with eating or swallowing. May also be involved in diagnosing type of dementia and give general advice.

**Clinical psychologists** Develop and run treatment courses for people with dementia, such as cognitive stimulation therapy (CST). They treat patients and carers with problems, such as anxiety and depression. May also be involved in diagnosing dementia.

### **Contacts for community care and help to access funding**

Voluntary organisations such as Age UK, Alzheimer's Society, Carers UK and Crossroads provide community care. They often work in partnership with the Community Mental Health Team and Social Services. Their support ranges from respite care at home to day centres and activities. They may help you apply for funding.

#### **Community care services and funding**

Social Services (local authority) carry out Community Care and Carers' Assessments to find out what support you need. They provide support, such as day centres, respite care, care homes and transport and parking schemes. They fund personal budgets to help pay for care, if you are eligible. They are obliged to provide advice about services whether or not you are eligible for funding.

**Allowances and benefits**

Department for Work and Pensions (DWP) may provide some funding, including Attendance Allowance and Carers' Allowance, pensions and other benefits. Some local community organisations can help you make your applications.

### Lasting Power of Attorney

Contact and conversations about care are easier if the person you care for has granted you Lasting Power of Attorney (LPA). See Legal and money matters for more information.
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## National support

Support organisations for dementia and carers.

Contents

### General support

**Age UK**

Information, advice and local services for people over 50. Information about local groups is available from

  * National Helpline: 0800 169 6565
  * Website: www.ageuk.org.uk

**British Red Cross – Home from hospital care**

Help following a stay in hospital to provide extra support and care at home.

  * Telephone: 0844 412 2750

  * Website: www.redcross.org.uk

**Carers Trust**

(Formerly Crossroads and Princess Royal Trust for Carers)

National organisation for information and advice to carers. They can point you to local support services.

  * Telephone: 0844 800 4361
  * Website: www.carers.org

**Carers UK**

Campaigning organisation that provides advice and support for a range of issues affecting carers, including legal and money matters.

  * Helpline: 0808 808 7777
  * Email: info@carersuk.org
  * Website: www.carersuk.org

**RVS** (formerly WRVS) **  
**

The RVS is a voluntary organisation that works alongside hospitals, local authorities and other organisations in order to support older people.

  * Telephone: 0845 608 0122
  * Website: http://www.royalvoluntaryservice.org.uk
  * Search page for services: <http://www.royalvoluntaryservice.org.uk/get-help>

**The Silver Line**

Confidential helpline which provides information, friendship and advice to older people. Open 24 hours throughout the year.

  * Telephone: 0800 470 8090
  * Website: www.thesilverline.org.uk

### **National care and advice groups – specialising in dementia  
**

**Alzheimer's Society**

Information and support for people with all forms of dementia, their carers, family and friends. Also provide local services including dementia support, befriending service and activity groups.

  * National helpline: 0300 222 1122
  * Website: www.alzheimers.org.uk

**Alzheimer's Society Talking Point**

An online discussion forum for anyone affected by dementia. People can use it to ask for advice, share information, join in discussions and feel supported.

  * Website: <http://forum.alzheimers.org.uk/forum.php>

**Dementia UK – Admiral Nursing Direct**

Admiral Nurses are specialist dementia nurses who support families affected by dementia.

  * Admiral Nurse Direct helpline: 0845 257 9406
  * Email: direct@dementiauk.org
  * Website: www.dementiauk.org

**Frontotemporal support group**

For carers of people with Frontotemporal dementia. The group meets several times a year.

  * Email: frontotemp@aol.com
  * Website: www.ftdsg.org

**Lewy Body Society**

Funds research into Dementia with Lewy Bodies (DLB). Their website provides information about the condition.

  * Telephone: 0131 473 2385
  * Website: lewybody.org

**Parkinson's UK**

Provide information and support through a national helpline and local support.

  * National helpline: 0808 800 0303
  * Website: www.parkinsons.org.uk

**Posterier Cortical Atrophy (PCA) support group**

Website provides information and support to people with PCA, and their families.

Website: www.ucl.ac.uk/drc/pcasupport

### **National care and advice groups for younger people with dementia  
**

**Familial Alzheimer's disease Support Group**

A national information and support group for families where a rare form of dementia (ADAD) is carried genetically, often developing in younger adults.

Website: www.fadsupportgroup.org.uk

**Young People with Dementia (Berkshire)**

Charity offering advice and activity workshops, and some one to one sessions, including a gardening group, choir, watersports, furniture restoration and dance workshops. Currently YPWD covers Wokingham, Reading and West Berkshire but is beginning to expand to other areas, initially in Berkshire.

  * Website: http://www.ypwd.info/ **  
**

**YoungDementia UK**

A national charity that provides information about early onset dementia and support for younger people with dementia and their carers. It runs social events and activities in Oxfordshire.

  * Telephone: 01993 776295
  * Email: mail@youngdementiauk.org
  * Website: www.youngdementiauk.org **  
**

Document Action
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## Activities

Activities to support people with dementia.

### **Help with active lives**

**Active Minds**

Provide activity products to help people with dementia enjoy life.

  * Telephone: 0207 688 6636
  * Email: info@active-minds.co.uk
  * Website: www.active-minds.co.uk

**Age Exchange**

Activities and resources for older people based on reminiscences.

  * Telephone: 0208 318 9105
  * Email: administrator@age-exchange.org.uk
  * Website: www.age-exchange.org.uk

**Alzheimer's and dementia café directories**

Dementia cafés (sometimes called Alzheimer's cafés or memory cafés) are usually run by local Alzheimer's Society or Age UK groups but sometimes they are run by other organisations. The following web sites can be used to search for cafés in your area.

  * Alzheimer Café UK <http://www.alzheimercafe.co.uk/acloc.htm>
  * Memory and Alzheimer's Cafés UK Directory <http://www.memorycafes.org.uk/>**  
**This site also links to other useful websites

**Dementia empowerment groups**

Empowerment groups bring together people with dementia and their carers who seek to change policies and services that affect them. They are coordinated by the Dementia Engagement & Empowerment Project (DEEP).

  * DEEP website: dementiavoices.org.uk

**Robert Opie Collection**

Provide activities for reminiscence, based on a collection of British advertising imagery and nostalgia.

  * Telephone: 0800 018 8844
  * Website: www.robertopiecollection.com

### Specialist holiday providers

The following organisations and companies specialise in holidays for people with dementia and their carers. Other providers may also be able to help with holiday plans if you tell them about your requirements.

**British Legion**

Provide holiday breaks for ex-service personnel and their carers and families at special holiday centres. You need to apply and they will assess your needs before offering a holiday.

  * Telephone: 0845 725 725
  * Website: www.britishlegion.org.uk

**Buchanhaven Holidays**

Holidays in the Orkney Islands catered for the individual needs of people with dementia and their partner/carer.

  * Telephone: 01856 874 093 or 0775 933 0892
  * Email: mbuchan77@btinternet.com
  * Website: www.buchanhavenholidaysorkney.co.uk

**Vitalise**

A national charity providing short breaks and holidays for people with dementia and physical disabilities, and their carers.

  * Telephone: 0303 303 0145
  * Website: www.vitalise.org.uk

**Dementia Adventure**

Provide breaks for people with dementia and their carers.

  * Telephone: 01245 230 661
  * Email: info@dementiaadventure.co.uk
  * Website: www.dementiaadventure.co.uk

**The Mede**

A bungalow in Topsham, Devon, suitable for a person with dementia and their carer.

  * Email: sallie.rutledge@yahoo.co.uk
  * Telephone: 01392 421 189 or 07718 976 072
  * Website: www.themede.org

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## Money

Pensions, benefits, and advice

### Department for Work and Pensions (DWP)

**Pension Service**

General enquiries about state pension eligibility, claims and payments.

For enquiries

  * Telephone: 0800 731 7898

For a change of address, bank details etc.

  * Telephone: 0845 606 0265
  * Website: www.gov.uk/contact-pension-service

**Disability Benefits Centre**

Advice and information about current claims.

  * Disability Living Allowance (DLA)  
Helpline: 0845 712 3456
  * Email: dcpu.customer-services@dwp.gsi.gov.uk
  * Website: www.gov.uk/disability-benefits-helpline

**Attendance Allowance (AA)**

Provides help to people aged over 65 who have disabilities.

  * Helpline: 0845 712 3456
  * Email: attendance.allowanceenquiries@dwp.gsi.gov.uk

**Personal Independence Payment (PIP)**

Provides help with the cost of long-term ill-health or disability for people aged 16–64.

  * Helpline: 0845 850 3322

**Carer's Allowance**

Information on Carer's Allowance and how to make a claim.

  * Telephone: 0345 608 4321
  * Email: cau.customer-services@dwp.gsi.gov.uk
  * Website: www.gov.uk/carers-allowance-unit

### Money advice

**CareAware UK – Elderly Care Funding Advice**

Provide free information and advice, specialising in care funding advice for older people.

  * Telephone: 0161 707 1107
  * Email: enquiries@careaware.co.uk
  * Website: www.careaware.co.uk

**Carers UK**

Free advice and support for legal and money matters.

  * Helpline: 0808 808 7777
  * Email: info@carersuk.org
  * Website: www.carersuk.org

**Firststop**

Free advice to older people, their family and carers on housing, finance and all aspects of care.

  * Phone: 0800 377 7070
  * Email: info@firststopadvice.org.uk
  * Website: www.firststopcareadvice.org.uk

**Independent Age**

Free advice and information on social care, benefits, care options and funding issues associated with longer term care. They also provide a befriending scheme.

  * Advice line: 0800 319 6789
  * Email: advice@independentage.org
  * Website: www.independentage.org

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## Independent living

Support to help a person with dementia stay longer in their own home.

Contents

### Assistive technology

**AlzProducts**

Provide products that have been selected to help people living with dementia.

  * Telephone: 0247 642 2224
  * Website: www.alzproducts.co.uk

**Aster Living**

Personal alarms and sensors for safety.

  * Telephone: 0333 400 8299
  * Email: info@asterliving.co.uk
  * Website: www.asterliving.co.uk

**AT Dementia**

Assistive technology designed for people with dementia and their carers.

  * Telephone: 0116 257 5017
  * Email: info@trentdsdc.org.uk
  * Website: www.atdementia.org.uk

**The Keysafe Company**

Police approved keysafes.

  * Telephone: 01905 770 333
  * Email: sales@keysafe.co.uk
  * Website: keysafe.co.uk

**Living made easy**

Practical advice on daily living equipment.

  * Helpline: 0300 999 0004
  * Website: www.livingmadeeasy.org.uk

**Nottingham Rehab Supplies**

Provide a range of mobility products, disability aids and equipment. They also offer a product advisory service.

  * Telephone: 0845 805 2236
  * Email: customerservice@nrs-uk.co.uk

  * Website: www.nrs-uk.co.uk

**Pivotell**

Reminders and medication dispensers.

  * Telephone: 01799 550 979
  * Email: office@pivotell.co.uk
  * Website: www.pivotell.co.uk

**Tunstall**

Telecare products and services.

  * Telephone: 01977 661 234
  * Email: enquiries@tunstall.com
  * Website: www.tunstall.co.uk

### Meals delivery service

**Dining in @ home**

Provide a frozen meals delivery service.

  * Telephone: 01903 820 057
  * Email: niall@sussexfarmhousemeals.co.uk

**Oakhouse Foods**

Deliver ready meals and desserts; also a limited range of fresh dairy produce groceries and pet foods.

  * Telephone: 0845 643 2009
  * Email: enquiries@oakhousefoods.co.uk
  * Website: http://www.oakhousefoods.co.uk

**Wiltshire Farm Foods**

Frozen meals delivery service.

  * Telephone: 01635 298 044
  * National helpline: 0800 773 773 (24 hour)
  * Email: newbury@wiltshirefarmfoods.com
  * Website: www.wiltshirefarmfoods.com

### Public toilets

**Radar National Key Scheme**

A Radar key opens locked public toilets, for example in shopping centres, parks, bus and train stations. Radar keys can be bought on-line from Disability Rights UK.

  * Website: crm.disabilityrightsuk.org/radar-nks-key

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## Advice and complaints

Organisations that deal with regulating care quality and safety, and organisations that can help you with advice.

**Action on Elder Abuse**

Information, advice and support to people who have experienced or witnessed abuse.

  * Telephone: 0808 808 8141
  * Website: www.elderabuse.org.uk

**Care Choices**

Offer information and advice about arranging care and support services. Produce countywide care directories that include details of home care, residential and nursing care homes. These directories can be downloaded from their website or ordered by telephone.

  * Telephone: 0800 389 2077
  * Website: www.carechoices.co.uk

**Care Quality Commission**

Check whether the services you receive (e.g. hospitals, care homes, GPs, dentists and services in your home) meet national standards. You can read their inspection reports or report a concern.

If you need to report a concern:

  * Telephone: 0300 061 6161
  * Email: enquiries@cqc.org.uk
  * Website: www.cqc.org.uk

**Citizens Advice Bureau**

Free, independent and confidential advice to help people to resolve problems.

  * Website: www.adviceguide.org.uk

**Healthwatch**

Healthwatch is a national organisation that works as a consumer champion to improve health and social care. If you have a concern or query you can find your local Healthwatch by

  * Email: enquiries@healthwatch.co.uk
  * Website: www.healthwatch.co.uk

**The National Care Line**

Information about care and support for older people, their carers and families.

  * Helpline 0800 069 9784
  * Email: office@thenationalcareline.org
  * Website: www.thenationalcareline.org

**SEAP Complaints Advocacy Service  
**

Support and advice in case of health or social care service complaints.

  * Helpline 0330 440 9000 or text SEAP to 80800
  * Email: info@seap.org.uk
  * Website: www.seap.org.uk

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## Dementia research

Get involved with research into dementia

Research studies to help understand and treat dementia better often need volunteers (both people with dementia and their carers). They can be interesting to be involved with and, in the long term, may bring benefits for other people diagnosed with dementia.

### National research

You can register to be involved on the Join Dementia Research web site. Join Dementia Research is a national service that allows you to register your interest in taking part in dementia research studies across the UK. It is funded by the National Institute of Health Research in partnership with Alzheimer's Research UK, Alzheimer's Society and Alzheimer's Scotland.

Many other organisations (including universities, charities and companies) carry out research into dementia and its care, often working alongside the large dementia research organisations. You may be able to make contact with them directly if you wish to be involved in their research.

### **Local research organisations**

In the Thames Valley Region you can register to be involved in research though

**Berkshire Memory and Cognition Research Centre  
** University of Reading  
0118 378 5700  
research@berkshire.nhs.uk

**OxDARE (Oxford Dementia and Ageing Research)  
** Warneford Hospital Reading  
<http://www.oxdare.ox.ac.uk/home>[  
](http://www.oxdare.ox.ac.uk/home)oxdare@psych.ox.ac.uk
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# Legal and money

Many people who have been diagnosed with dementia will need to consider whether there are legal or financial arrangements they need to make for the future.

This section gives some guidance and sources of help on

Legal issues including wills, arrangements for people who aren't able to make decisions for themselves, and driving

Financial issues including sources of financial help and advice on money matters.
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# Legal issues

A diagnosis of dementia can bring with it some difficult decisions that have legal implications. This section sets out some of the most important decisions for the person you are caring for.

Contents

## **Driving**

Dementia can affect a person's ability to drive safely. Even if they feel they are a safe driver, their level of attention and ability to make quick decisions is likely to be reduced. This could put them, their passengers and other people on the road at risk. It is a legal requirement for a driver to tell the DVLA of a diagnosis of dementia. Failure to tell the DVLA may lead to a fine of £1,000.

If someone wants to continue driving they must tell the DVLA. The DVLA will then send them a questionnaire and will ask for their agreement to contact their doctor at the Memory Clinic. The DVLA may then ask the person to have a driving assessment at a special centre. The DVLA's decision will be based on the report of the Memory Clinic and the driving assessment.

If someone wants to check they are still safe to drive they can also book an independent driving assessment, for a fee, at a Regional Driving Assessment Centre.

Sometimes the doctor who gives the diagnosis of dementia will make a judgement that it isn't safe for the person to drive and will tell them to stop immediately. If the doctor has said this then it is illegal for the person to continue driving. They can ask for a second opinion from another doctor but they must not drive until that has been given. The second doctor may still advise that they do not drive.

If someone has a diagnosis of mild cognitive impairment they do not have to tell the DVLA unless they are advised to by their doctor. If they have any concerns about their driving they should inform the DVLA. If a person with mild cognitive impairment or dementia continues driving they must tell their insurance company, or their insurance may be invalid and they will not be covered if they have an accident.

While some people will readily agree to give up driving, others feel it as a great loss of independence and find it hard to admit they should give up. There is more information on coping with this kind of change in the section on Getting out and about.

For more information

  * contact the DVLA via the website or call 0300 790 6806.
  * visit the Regional Driving Assessment Centre website or call 0845 337 1540.

## **Making or updating a will**

### An up-to-date will

A will is an important legal document for everybody. It ensures that after someone dies, their money and possessions are passed on to the people they want them to go to. If the person you care for has no will, they should make one, if they can. While many people have made a will, it may be out of date. You may need to check it is up-to-date and whether they need to change it.

If you have mirror wills with your husband or wife, you may need to seek advice from a solicitor about adjusting your will if one of you is diagnosed with dementia.

### Testamentary capacity

If a person needs to make or change a will they must have testamentary capacity. This means they have to be able to make decisions about their will independently. A good first step is to talk to a solicitor about what you need to arrange. Most solicitors have wide experience of dealing with wills but you can ask for a registered solicitor for the elderly. Solicitors often charge for this kind of advice so it is advisable to get quotes from two or three solicitors.

The solicitor will decide if they need to take advice about a person's testamentary capacity. This may involve asking a specialist doctor to fill out a form confirming the person's capacity. If a person does not have testamentary capacity there is still a process that can be used to help them make or change their will. This is through the Court of Protection. A solicitor will advise you on whether this is appropriate and what you need to do.

### Finding a solicitor

If you do not have a solicitor, you can ask the Citizens Advice Bureau, Age UK or Alzheimer's Society for lists of local solicitors. They will also have information about making a will that they can pass on to you. There is more information and a search tool to find solicitors who specialise in will making at The Law Society website.

For more information about making a will, the Law Society has advice on making a will and finding a solicitor.

## **Lasting Power of Attorney (LPA)**

### Putting arrangements in place

It is likely that in the later stages of dementia, the person you care for will find it hard to make decisions. They may not be able to manage their money or plan for their future. Decision-making may have to be taken over by you or someone else who the person trusts to carry out their wishes. This is done by granting a Lasting Power of Attorney that can be used if they can no longer make decisions.

Many people find it upsetting to think forward to this situation. As an interim you will be able to fill in forms together at their bank so that you can become a signatory to help them operate their account. However, for you to be able to act for them more widely the law requires paperwork to show that they have handed over decision-making responsibility to someone else.

Lasting Power of Attorney can only be set up while the person giving the power is well enough to understand what they are doing; that is, while they have the mental capacity to make the decision to grant a Lasting Power of Attorney. If a person with dementia has not granted a Lasting Power of Attorney before they lose mental capacity, it may require a lengthy (and often expensive) process to put arrangements in place. See the section below, 'Court of Protection'.

If the person is willing to set up a Lasting Power of Attorney early and knows they have appointed someone they trust to help with decisions it can help reduce their concerns about the future.

### There are two kinds of Lasting Power of Attorney:

**A Lasting Power of Attorney for Property and Financial Affairs** appoints someone to make decisions about a person's money; for example, paying bills and managing their bank account. It can even be used to sell the person's property, if needed. This Lasting Power of Attorney can be used while the person still has capacity to give instructions to the Attorney and when they are no longer able to do so.

**A Lasting Power of Attorney for Health and Welfare** appoints someone to make decisions about a person's everyday care and future planning. It gives responsibility for making decisions about a person's treatment if they are taken into hospital, but only if they cannot make those decisions themselves.

You can get forms, or advice about where to get a form, to set up both kinds of Lasting Power of Attorney from

  * your Memory Clinic
  * support agencies such as Age UK and the Alzheimer's Society
  * the government website www.lastingpowerofattorney.service.gov.uk

The forms have full instructions on them but if you have concerns about filling them out you can also ask advice from a solicitor. Ask if they have a specialist in Power of Attorney.

Once you have filled out the forms and signed them you need to send them to the Office of the Public Guardian to be registered. Forms for Lasting Power of Attorney are not valid until they have been registered and returned to you. There is a fee to register.

More information is given in the Alzheimer's Society fact sheet on the Mental Capacity Act

### Enduring Power of Attorney (EPA)

Lasting Power of Attorney has replaced Enduring Power of Attorney. Whilst an Enduring Power of Attorney can no longer be prepared by a solicitor, if you already have one, it is still valid and can be registered and used. EPA only covers decisions about finances and property.

## **Court of Protection**

If a person has not granted a Lasting Power of Attorney to someone to make decisions for them, but can no longer make decisions for themselves, the family or carer might need to apply to the Court of Protection. This process is more time consuming and expensive than a Lasting Power of Attorney.

Court of Protection is a specialist court that deals with people who lack the capacity to make specific decisions. Under the Mental Capacity Act, the court can make decisions about personal welfare and property and finances and appoint deputies to make decisions on behalf of the person.

You can get forms or advice about the Court of Protection from:

  * Memory Clinic
  * Support Agencies like Alzheimer's Society or Age UK
  * The government website.

For more information consult:

  * the NHS web site
  * the Alzheimers Society factsheet.
  * Carers Direct helpline on 0300 123 1053

## **Advance Decisions and statements**

Individuals differ in their feelings about how much they want to control the medical decisions that might be made for them if they need treatment but cannot make decisions for themselves.

These decisions might cover, for example, whether they would want to have resuscitation if they lose consciousness or whether they would want surgery that has a high level of risk or a long recovery time. Some people's wishes will be influenced strongly by their religious beliefs and they will want medical staff to be made aware of these.

If you are able to discuss these issues with the person you care for, they can make Advance Decisions about treatment, which will then be legally binding on doctors caring for them.

An Advance Decision is a signed, witnessed record of what a person wants. It is only valid if it is counter-signed by a witness who can verify that the person had mental capacity at the time they made it. And it will only be used if the person does not have mental capacity to make their own decisions at the time they are in hospital.

Advance statements are more general than instructions about specific, medical decisions. They deal with a range of aspects of care; for example, the kind of food a person would like to have, the people they would like to be consulted about their care. Unlike Advance Decisions, advance statements are not legally binding but medical and care staff will try to follow them.

For both Advance Decisions and statements it's important that the instructions the person gives are clear. The Memory Clinic can tell you where to get forms to record Advance Decisions and statements. It may help to ask the person's GP for help in writing them.

A person's Advance Decision could change their arrangements for Lasting Power of Attorney for Health and Welfare (described earlier in this section). Although this is unlikely, you should be aware of the possibility.

For more information see

  * End of life care
  * Alzheimer's Society Information and forms for Advance Decisions and statements

## **Deprivation of Liberty Safeguards ( DoLs)**

Dementia can affect people's ability to understand and retain information relating to their safety or care whilst they are in a care home or hospital setting. Consequently there may be occasions when staff feel they should restrict an someone's freedom (liberty) in order to keep them safe or to continue a specific course of treatment. Examples may include

  * stopping the person leaving an environment
  * giving them medication without their full knowledge (for example, sedatives or medication to treat a condition (known as covert medication)
  * restricting their social contacts.

Such actions should only be carried out if other options have failed and it is thought to be in the person's best interests.

In law, restricting someone's freedom may be described as Deprivation of Liberty if 'The person is under continuous supervision and control and is not free to leave, and the person lacks capacity to consent to these arrangements'.

Patients are protected by Deprivation of Liberty Safeguards (known as DoLs). These apply to care homes and hospitals. Recently these Safeguards have been considered for use in other settings, such as sheltered housing.

The law sets out a procedure for staff to obtain authorisation to restrict someone's freedom. The hospital or care home (known as the managing authority) must apply to their supervisory body for authorisation. The supervisory body will be a team within the County Council. A minimum of two assessors must review the circumstances and decide if authorization should be granted and for how long. The assessors will take into account the views of others including family.

For more information on Deprivation of Liberty Safeguards see

  * Advice from Age UK

  * Alzheimer's Society fact sheet on the Mental Capacity Act 2005

  * The UK government code of practice

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# Money matters

The costs of caring for someone with dementia can mount up. A lot of practical help and advice is provided directly by your health care team or Social Services. There may be other support that you will need to apply for and, if you are not eligible for funding, to pay for.

## **Finding out what is available**

The kinds of financial support change over time because of changes in local and national government policy. You will need to check details of what is available when you need it.

You can get advice from Social Services or from organisations such as Age UK or Alzheimer's Society. There are voluntary organisations that focus on giving advice about financial support (some are listed in the section on Money in 'Support').

## **Local Council support**

### Council Tax exemption

Following a diagnosis of dementia the person who is diagnosed may be eligible for a discount or exemption from Council Tax. If they are living with another adult this could reduce the Council Tax on their property or if they live alone could exempt their property from Council Tax. To apply for Council Tax Exemption you must be receiving one of the disability benefits, for example Attendance Allowance.

If you are looking after someone and living in the same home, you may be entitled to some further reductions in Council Tax if you also have a disability. If you did not claim Council Tax exemption when you were first eligible for it, your claim can be backdated.

Contact your local Council Tax office to find out more and for forms to apply for exemption.

The Alzheimer's Society has a fact sheet about Council Tax.

### Daily living equipment and adaptations at home

You may need to make changes at home so that it is easier and safer for the person you care for to move around. For example you may need to put grab rails in the bathroom or on the stairs. At some point you may need a stair lift.

Everyone has the right to a Community Care Assessment of the equipment and other support they may need at home. You can contact Social Services to arrange this, or your Memory Clinic team may make this arrangement for you. If the person's needs change you can ask Social Services to come back to reassess them.

Daily living equipment, such as walking frames or grab rails, should be provided free. Disability adaptations costing up to £1,000 (to buy and install) are currently free. If there is equipment that you need to pay for, Social Services will give you information about approved suppliers.

If a person is registered disabled because of their dementia, they do not have to pay VAT on any disability equipment they buy, or its maintenance. So remember to ask any supplier for a VAT exemption form.

Other personal equipment, such as hearing aids or magnifiers for reading, should be provided free but you will need a GP referral for an appointment to assess a person's hearing or vision.

### Support for care

A Community Care Assessment will recommend the kinds of social care that will make it easier for the person you are caring for to stay at home or the kind of care home that would be best, if they can no longer be cared for at home.

You can also ask for a Carers' Assessment which will look at the kind of support you might need to help you care for someone. These assessments are described in more detail in the section on Being a carer in 'Day-to-day living'. After assessment you will be given a care plan. The plan might include, for example, help with housework, personal care, meals, or recommendations for day centres that might suit the person you are caring for.

Some support is provided without charge. Other kinds of care are means tested and will take into account savings or income that you have, including state benefits (which are described below). The Government requires the Council to give you information and advice about support services. They must give this advice even if you aren't entitled to funding and are paying for services yourself.

### Personal budgets

If you or the person you care for are entitled to funding for care services you will be offered a personal budget (sometimes called a direct payment) to pay for them. You can then choose your own providers for those services. For example, if the plan includes day centre visits twice a week, the person can choose the day centre they want to attend; similarly, you can choose who provides personal care. If you don't want to manage your budget yourself, you can ask the Council to manage it for you.

Age UK offers more information about personal budgets.

## **State benefits that can support the cost of caring**

These are benefits from the Department of Work and Pensions (DWP). These benefits are backdated to the day that you started your application for them. Even if you don't have all the information the application forms ask for, it is worthwhile starting off your application to get the full benefit that you may be entitled to.

The application forms can be quite complicated, so ask for advice from your Memory Clinic, local Age UK or Alzheimer's Society support team or from Citizens Advice Bureau.

The UK government website has more information about Carers Allowance and disability benefits.

### Attendance Allowance and Personal Independence Payment

If the person you care for is over 65 and needs help with everyday activities such as washing, dressing and eating, they are likely to be eligible for Attendance Allowance. Attendance Allowance is paid at two levels (higher or lower) according to how much care the person needs. If the person is under 65 they may be eligible for Personal Independence Payment.

Attendance Allowance (over 65s) and Personal Independence Payment (under 65s) are not means tested and do not depend on how much a person has paid in National Insurance. The person applying for the allowance may have to have a medical examination.

### Carers' Allowance

If the person you care for receives Attendance Allowance or Personal Independence Payment and you are looking after them for 35 hours a week or more, then you may be entitled to Carers' Allowance. Unlike Attendance Allowance and Personal Independence Payment, Carers' Allowance is taxable and means tested. If you receive it as a carer it may affect some of the other allowances the person with dementia can claim. So it is worthwhile seeking advice before claiming it.

### Additional benefits

If you are of pensionable age and either do not have a pension or cannot live on your pension you may be entitled to Pension Credit, which provides additional income to support you. If you are below pensionable age you may be entitled to Income Support. If you are married or have a partner you must apply for these benefits as a couple.

If you are of pensionable age you should be entitled to Winter Fuel Allowance. If the temperature in your area falls below freezing for seven consecutive days, and you are on Pension Credit or Income Support, you will receive additional Cold Weather Payments.

As with Attendance and Carers' Allowances, applying for these benefits can be complex and it may be wise to ask for help from your Memory Clinic, local Age UK or Alzheimer's Society support team or Citizens Advice Bureau.

For more information about benefits

  * Pension service 0800 731 7898
  * Attendance Allowance 0845 712 3456

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# A–Z of symptoms and behaviours

Look-up guide

  * Aggression
  * Anxiety
  * Aphasia/dysphasia
  * Balance
  * Bladder or Bowel problems
  * Choking
  * Co-ordination
  * Communication
  * Concentration
  * Confusion
  * Constipation
  * Decision making
  * Delirium
  * Denial
  * Depression
  * Disorientation
  * Dysphasia
  * Eating and drinking
  * Emotions
  * Falls
  * Hallucinations
  * Hearing
  * Hygiene
  * Incontinence
  * Infections
  * Lack of inhibition
  * Lack of insight (denial)
  * Language
  * Memory
  * Misperceptions
  * Mobility
  * Mood swings
  * Night walking
  * Nutrition
  * Pain
  * Passiveness (lack of interest)
  * Personality changes
  * Pressure sores
  * Repetitiveness
  * Restlessness
  * Sexual behaviour
  * Sleep disturbance
  * Suspicion of others
  * Swallowing
  * Vision
  * Wandering

## Dementia look-up guide

It's important to remember that there are different types of dementia, each with different symptoms, so not everything in this list will be relevant to the person you care for. Even for one type of dementia, not everyone will experience the same symptoms; or symptoms that are very mild for one person may be more severe for another. As you will hear many times, everyone with dementia is different.

The A–Z is intended as a quick guide to help you consider what might be underlying the symptom or behaviour, what you might be able to do to help the person you care for and where you can find more information, advice and support.

The behaviour of someone with dementia is often driven by emotion. It can be easier to understand if you can try to put yourself in their shoes to find out what they may be feeling. Many of the tips recommended here are aimed at trying to help the person cope with what they are feeling. Often this can lead to positive changes.

**This list includes**

**Tips** for things you can try that may improve the person's comfort.

**Signposts** to further information, some of which is available on the web, in printed leaflets, or from organisations that support people with dementia and their carers.
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## Aggression

Aggressive behaviour can be frightening and upsetting for you as a carer.

It has many causes including:

  * fear or suspicion
  * frustration with a situation or environment
  * low mood
  * being in pain
  * no other way of sharing feelings
  * loss of judgement
  * loss of inhibitions and self-control.

When a person with dementia behaves aggressively, it's important not to make the situation worse by arguing with them as this may make them lash out. It may help to leave the room for a short time. Remember that even if the aggression seems personal or intentional, it is usually the result of the condition.

When the person is calm, act normally towards them. They may forget the incident quickly, or feel awkward about it. Acting normally can help you both move on.

### Tips and advice

Keep a note of anything that triggers aggressive behaviour. It may take some trial and error, but if you identify the triggers, you can avoid them.

If you think the aggression is linked to pain, contact your GP.

If a person is agitated and shouts out at night, try putting a night light in their room to make them feel less anxious.

If they are calling for someone from their past, try talking to them about this period in their life.

The Alzheimer's Society has a factsheet on dealing with aggressive behaviour.
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## Anxiety

Dementia can make a person anxious because the changes they are experiencing make them feel out of control.

They may be particularly anxious in new places or situations. Some medication can increase anxiety.

Anxiety has many symptoms. Not everybody experiences them all. Some of the more common symptoms are:

  * worrying a lot
  * feeling afraid that something bad might happen
  * avoiding situations that feel difficult to cope with
  * feeling tense or uptight
  * sweating – not caused by heat
  * dry mouth
  * pounding or racing heart
  * churning or 'butterflies' in the stomach
  * trembling or shaking
  * feeling dizzy.

You may be able to reduce a person's anxiety by having a routine which is easy for them to follow. It may help to do things on specific days of the week and to tell the person what the plan is for each day; for example, 'It's Monday, so I'll be going out for the afternoon and Jane will be here with you'.

### Tips and advice

Look for patterns that trigger anxiety so you can avoid them; for example, large groups of people or loud noises.

Help the person control mild anxiety through slow, steady breathing.

Try to reduce their coffee and alcohol intake; encourage regular exercise.

If you can, create distractions, for example, gardening or listening to music they enjoy.

Show them that you are concerned for them and reassure them.

For more information see:

  * Depression
  * Alzheimer's Society factsheet on depression and anxiety

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## Aphasia/dysphasia

Problems with speech and language.

Many people with dementia have difficulties with speech and language. These may develop earlier in someone with Fronto-temporal dementia than other dementias but not everyone with Fronto-temporal dementia is affected. People with Alzheimer's and Vascular dementia may also have speech and language problems.

People may have different kinds of difficulties, including:

  * problems recalling names or words
  * hesitant, effortful speech
  * stuttering
  * sound errors in speech (e.g. "gat" for "cat")
  * using the wrong word order or tense
  * understanding conversation; reading and writing may also be affected.

Speech and language therapists who specialise in dementia can give advice on these problems and how to help the person communicate. Contact your Memory Clinic for an appointment.

Language changes may also be a side-effect of medication so you should check with your GP, especially if medication has been changed recently.

In the later stages of dementia, a person may stop speaking altogether but this doesn't mean their wishes and preferences can be ignored. Try to keep talking with them and, when you are doing things for them, ask for their preferences.

### Tips and advice

To help someone communicate

  * help them by saying a word they are trying to say
  * ask simple yes/no questions based on what you think they might be trying to say
  * give them time to respond to you rather than talking over them
  * point to things you think they are talking about
  * show you're listening by keeping eye contact.

Check that the person's dentures are comfortable.

If someone's ability to speak changes suddenly it could mean they have had a stroke. Use the FAST method to check

  * **F** is the person's Face drooping at one side or their smile uneven?
  * **A** is their Arm drooping?
  * **S** is their Speech slurred? Can they repeat simple sentences?
  * **T** Telephone 999 if they have these symptoms.

For more information see:

  * Communication
  * Alzheimer's Society fact sheet on communication
  * NHS introduction to frontotemporal dementia
  * Alzheimer's Society factsheet on [frontotemporal dementia  
](http://www.alzheimers.org.uk/factsheet/404)

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## Balance

See Falls
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## Bladder or Bowel problems

See Constipation, Incontinence
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## Choking

Some people have problems with swallowing as their dementia progresses. This may be because they forget to swallow, have poorly fitted dentures that make eating uncomfortable or have sore gums due to poor oral hygiene. It may also be due to a decline in function of the parts of the brain and nervous system that coordinate the swallowing process.

When people have swallowing problems there is a risk of them choking on their food. A speech and language therapist can be asked to carry out a swallow assessment and can then advise on the type of food most suitable to help prevent choking; for example, pureed food.

When a person chokes there is a risk of food entering their lungs, which can lead to the development of pneumonia, often referred to as aspiration pneumonia.

See Eating and drinking
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## Communication

Dementia gradually affects the way a person communicates.

Their ability to present ideas and reason clearly can change. Getting communication right is one of the most challenging parts of caring for someone with dementia and can have a big impact on their quality of life.

As a person's dementia progresses, they may find it hard to start conversations. You may have to get the conversation going.

The person may find it hard to say what they want. Avoid asking them to make complicated choices; keeping it simple will help. Try to rephrase what you say to make it easy for the person to respond, for example, rather than ask 'would you like a drink?', try asking 'I am having a cup of tea, would you like one too?' Remember to speak calmly and always make eye contact.

Try to look out for patterns or situations that seem to make understanding more difficult for the person; for example, in a noisy or busy environment, when rushing or trying to do several things at the same time, having a conversation whilst the television or radio is on in the background.

Having other people around, such as family or friends, can help get conversation going and the person you care for may enjoy listening even if they can't join in. It may help to have some photographs or a memory album nearby so that visitors have something to talk about. Joining Dementia Cafés or other activities can provide a friendly environment with people to talk to.

### Tips and advice

Remember to arrange regular hearing checks. If a person is struggling to hear they are unlikely to make conversation or reply to questions.

Contact your local Alzheimer's Society representative about joining Dementia Café meetings and other groups in your area.

For more information see:

  * Aphasia/dysphasia, Decision making, Hearing
  * NHS Choices briefing on communicating with people dementia.
  * Alzheimer's Society fact sheet on communicating

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## Concentration

People with dementia often find it difficult to carry out tasks and activities that require concentration and planning.

They may find it hard to follow instructions. It is good to keep active and independent for as long as possible so try to encourage them to do things for themselves, even if it takes more time than you doing things for them.

### Tips and advice

Try to be patient and help them get started on an activity, giving gentle reminders about next steps as they progress.

Focus on what the person can do rather than what they can't.

See Everyday activities
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## Confusion

There are many signs of confusion, such as getting lost in familiar environments, not knowing how to get out of a familiar room or not knowing whether it is night or day.

Confusion can cause anxiety for a person with dementia and their carer. Try to be patient with them. It may help to avoid introducing too many new or different things.

Look out for patterns that make the person more confused, such as visiting new places or noisy environments. You may be able to avoid these situations or prepare the person for them. However there may not always be a particular cause.

Confusion can be due to a bladder or chest infection, which can be treated with medication. If a person's confusion suddenly increases, is severe or if they are hallucinating or suspicious, contact your GP.

### Tips and advice

Showing pictures, memorabilia or talking about fond memories may help a person remember people or places they have forgotten.

Confusion can be due to an infection. If you think this might be the cause, contact your GP.

See Delirium, Memory
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## Constipation

Constipation can be common in people with dementia. It may be caused by not drinking enough fluids, or reducing or changing the kind of food they eat (particularly eating less fibre), or becoming less mobile.

It can cause discomfort, distress and, in extreme cases, can lead to incontinence.

Try to prevent constipation by ensuring the person you care for drinks plenty of fluids and has some fibre in their diet, such as wholemeal bread, fruit and vegetables.

A person may try to reduce the amount they drink if they suffer from bladder incontinence: they may worry that they may not be able to control their bladder. You may need to explain to them why it is important for them to drink and give them drinks during the morning so they are less likely to need the toilet at night.

If you think someone is constipated, and fluids and diet don't improve things, consult your GP as laxatives may be required.

### Tips and advice

If a person seems to be avoiding fluids, remember that soups, fruit salads, vegetables, jelly and many other foods contain fluids, which can boost their intake (and can be a good source of fibre, too).

See Incontinence
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## Co-ordination

Some types of dementia may lead to co-ordination problems. This means a person cannot manage controlled movements, for example, when eating meals or dressing.

A Community Care Assessment from your Social Services will be helpful for advice and to see if aids can be put in place to help with specific tasks. See information about Community Care Assessments in the section on Being a carer in 'Day-to-day living'.

### Tips and advice

Help make eating and drinking simple: serve meat and fish without bones, cut food into small pieces if the person can't do it themselves, don't over fill cups, to reduce spills. The person may prefer just a fork or a spoon rather than a knife and fork.

To help with dressing ensure clothes are not inside out and have buttons and zips already undone. Think about getting shoes without laces or buckles.

Alzheimer's Society has fact sheets on dressing and eating and drinking.
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## Decision making

Making decisions can become increasingly difficult for people with dementia. They may become anxious if they are faced with too many decisions to make or questions to answer.

It is good for someone to make their own decisions for as long as possible so try to be patient and repeat the choices they have.

If a person is beginning to struggle with important decisions check they have all their legal arrangements in place; for example, that they have an up-to-date will and have made arrangements for Lasting Power of Attorney. See the section on Legal and money issues.

### Tips and advice

Try to state the outcome of a decision, to give context, for example, 'Would you like to wear a jumper today as it's cold?'. It may help to show the person the options; for example, showing them two outfits.

Limiting choices can prevent overwhelming a person; for example, 'Would you like ice cream or cake?' rather than 'What would you like to eat?'.

See Communication
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## Delirium

Delirium is sometimes called an 'acute confusional state'.

Delirium can prevent a person from concentrating or thinking clearly, and may make them unaware of their surroundings. People with delirium can often see or hear things that are not actually there, but which seem very real to them (hallucinations). Delirium symptoms are usually temporary and stop when treated.

Delirium develops very quickly, it may be as a result of infection, constipation or medication. It often happens in hospital due to change in environment or after surgery, sometimes due to the effects of anaesthetics, or infection or pain.

If you suspect signs of delirium tell hospital staff immediately, as delaying treatment can increase the risk of other complications. If the person you care for is at home contact their GP immediately.

### Tips and advice

Certain kinds of infections, such as a bladder or chest infection, can cause delirium. Contact your GP if you suspect signs of infection. For suspected bladder infection, collect a urine sample if possible.

If the person has had two or more infections one after the other, the GP may refer them for further investigation.

See Hallucinations, Infections.

Alzheimer's Society has fact sheets on

  * Changes in behaviour
  * Sight, perception and hallucinations in dementia
  * Urinary tract infections (UTI) and dementia

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## Denial

See Lack of insight
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## Depression

Depression may occur along with the development of dementia or as a result of receiving a dementia diagnosis. It can show itself in many different ways.

Psychological symptoms include:

  * continuous low mood or sadness, feeling hopeless and helpless
  * having no motivation or interest in things
  * finding it difficult to make decisions
  * feeling anxious or worried
  * having suicidal thoughts or thoughts of self-harm.

Physical symptoms include:

  * moving or speaking more slowly than usual
  * change in appetite or weight
  * unexplained aches and pains
  * disturbed sleep.

Social symptoms include:

  * taking part in fewer social activities and avoiding contact with friends
  * having difficulties in home and family life.

If a person has some of these symptoms every day for more than two weeks, ask for help from their GP or Memory Clinic.

### Tips and advice

Make it clear to the person that you care for them and are concerned for them. Suggest simple activities together that may relieve their symptoms, such as a gentle walk or watching a film together.

Caring for someone with dementia can also lead you to become depressed. It is important to keep yourself as well as you can, both mentally and physically. So if you experience persistent symptoms, you should consult your GP.

For more information see:

  * Anxiety, Emotions, Mood swings
  * Alzheimer's Society fact sheet on depression and anxiety

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## Disorientation

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## Dysphasia

See Aphasia
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## Eating and drinking

A person with dementia may find eating and drinking difficult for a range of reasons. They may not recognise the food in front of them, they may find it hard to use a knife and fork or to chew or swallow food.

Helping someone with dementia eat and drink well can take time and patience. You may be anxious that they are not getting the nutrition they need but this anxiety needs to be balanced with remembering that food is a source of pleasure and comfort. Taking time can help prevent the experience becoming tense.

While it's common for people with dementia to have difficulty eating, others may overeat or not eat a balanced diet. They may not know when they are satisfied or may not remember what they have eaten or having eaten at all. It may be up to you to ensure they eat a healthy range of foods.

Ensuring a person drinks enough fluid is as important as making sure they eat well. If they don't drink enough dehydration can increase the chance of constipation and bladder or urinary tract infections. Make sure they have a regular supply of non-alcoholic drinks (water, fruit juices).

Some people may be at risk of choking because they have difficulty swallowing. However they may also refuse help with eating and drinking.

Speech and language therapists specialise in helping people who have difficulty swallowing so if you are concerned you should contact your Memory Clinic for help.

### Tips and advice

Make things easier by serving food you know the person enjoys. Serve small, manageable portions with cutlery they find easy to use.

Using crockery which is plain and contrasts with the tablecloth can help to define the edge of the plate.

If the person lives on their own you can try preparing food in packs labelled according to days of the week and times of day.

Regular exercise and fresh air help to increase the appetite.

Remember to arrange regular dentist and optician check-ups. Toothache, uncomfortable dentures or impaired vision could detract from eating.

For more information see:

  * Choking
  * Co-ordination

  * Alzheimer's Society fact sheet on eating and drinking
  * NHS Choices guide to eating a balanced diet.

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## Emotions

There are many reasons why a person with dementia may become more emotional than they have been previously.

The initial diagnosis of dementia is likely to upset them and may make them feel low or frightened. They may feel angry that they have been affected or that their life will become limited.

They may also respond emotionally to situations they would have previously found easy to deal with; for example, if they find they cannot do things they used to be able to do independently. If they rely heavily on you as their carer they may become upset if you are not there; if you go out they may forget where you are.

Usually these emotions will pass but if a person's mood stays continuously low, or they remain very agitated, you will need to consult their GP or Memory Clinic.

Sometimes dementia can also limit the emotions people express, so they seem to become cold and detached, and may say hurtful things. All these can be upsetting for you as a carer but try to remember that the person is not being hurtful intentionally.

### Tips and advice

Sharing your experience with others may help you deal with strong emotional demands from the person you care for. Memory Clinic teams and people from support organisations may be able to help you deal with your reaction to difficult and emotional situations.

See also Anxiety, Depression, Lack of Insight, Mood swings
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## Falls

People with dementia are at risk of falls because their sense of balance and ability to react quickly may be reduced, along with their memory and judgement. Changes to medication or having an infection can be linked to falls.

Stress and confusion can also increase the chances of a fall, as can problems with vision.

It's worth taking simple steps to help the person navigate their home more easily and safely. This may involve having a Community Care Assessment; see section on Being a carer in 'Day-to-day living'. If you change the layout of their home to make it safer, try not to make major changes rapidly as this can be upsetting; see Adaptations at home in 'Day-to-day living'.

### Tips and advice

Don't forget to make sure the person has regular eye tests and is wearing the correct glasses.

Encourage them to wear fitted, supportive shoes rather than slippers.

If you are concerned about falls, speak to your GP, Social Services or Memory Clinic to organise a visit from an Occupational Therapist.

For more information see:

  * Mobility, Vision
  * Alzheimer's Society fact sheets on Safety in the home and equipment, adaptations and improvements to the home
  * NHS Choices guidance on dementia and the home environment

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## Hallucinations

A hallucination is the experience of perceiving something that isn't there; for example, seeing people who are not there.

Hallucinations can occur with some types of dementia, particularly Dementia with Lewy bodies, Parkinson's disease dementia, and sometimes with Alzheimer's disease.

Hallucinations may occur if someone has delirium or they may be a response to some medications. Hallucinations can be visual but a person may also hear sounds or feel sensations that are not there. They will believe that what they are experiencing is real and, in some cases, may be frightened by it.

Hallucinations differ from everyday misperceptions, which some people with dementia experience, where they misinterpret everyday objects. For example, they may think that a curtain, a coat on a peg or a shape in a hedge is a person, or that people on TV are real. Everyday misinterpretations are not hallucinations.

If full hallucinations last a long time and upset the person you care for, and particularly it they include sound and touch as well as vision, tell your GP. It may be that altering their medication can help them.

### Tips and advice

Rather than cause conflict by contradicting someone who is hallucinating, reassure them that you are there with them. Listen to what they are experiencing and try to talk with them about it and, if they are upset, ask what is worrying them.

Check whether the person needs glasses, or whether the glasses they have are the right prescription.

Some visual difficulties can be caused by eye problems associated with age, such as cataracts, glaucoma or macular degeneration. If you think they may have eye problems arrange an opticians appointment for them.

For more information see:

  * Misperceptions
  * Alzheimer's Society fact sheet on sight, perception and hallucinations in dementia

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## Hearing

Communication problems caused by dementia will be made worse if a person cannot hear well.

They may be more likely to 'turn off' from conversations, so they miss the stimulation of other people's company.

If you think the person you care for has difficulty in hearing, contact your GP for a hearing test. It may be that a simple build up of ear wax is affecting them or they may need a hearing aid.

If they already wear a hearing aid you may need to remind them to wear it and help them use it properly.

### Tips and advice

Remember to arrange regular hearing checks.

To get the most out of a hearing aid:

  * clean it and keep it in good working order
  * check the battery regularly
  * adjust it for different situations.

See Communication
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## Hygiene

Some people with dementia may neglect hygiene and may need persuasion to wash and bathe.

They may have difficulties with washing and bathing because they are at risk of falls in the bathroom or shower.

Helping someone wash or bath can be difficult since these are usually a private activities. It can be hard for a person to adjust to having help. Try to approach it in a practical and sensitive way so that it does not become an uncomfortable experience.

If the person you care for has limited mobility or has problems balancing, make sure that:

  * the floor is dry and not slippery
  * locks are removed from the door
  * you are aware of your own safety when you are bending and helping with lifting.

### Tips and advice

Use visual cues before you start, for example, carry a towel and let the person see and smell the soap. They may be less likely to refuse to bathe if it's clear what is expected.

To help make the experience of bathing or showering positive:

  * explain what's happening as you go along
  * check the water temperature
  * make sure the bathroom is warm on cool days
  * use pleasant-smelling shampoo and bubble bath.

Alzheimer's Society has a fact sheet on washing and bathing
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# Incontinence

Incontinence can be difficult to deal with, and upsetting both for the person you care for and for you.

There are a range of different causes of incontinence in people with dementia. They may lose control over their bowel or bladder, or may not be able to empty their bladder properly or have an infection. Prostate problems in men, prolapse of the womb in women, or constipation could contribute to problems with continence.

Alternatively the person may simply forget to go to the toilet, or where the toilet is. They may also have lost the ability to tell when they need the toilet.

When someone is incontinent it's important to be understanding, retain a sense of humour and remember that it's not their fault. You may also want to try the following:

  * put a sign on the toilet door, such as a photo of the toilet
  * keep the toilet door open, with a light on and make sure that the person you care for can get to it easily
  * make sure they can remove their clothes – some people with dementia can struggle with buttons and zips
  * look out for signs that they need to go to the toilet, such as fidgeting and standing up/sitting down
  * get adaptations to the toilet, such as grab rails or a raised seat to make using the toilet easier. Social Services may supply these if you ask for a Community Care assessment
  * have a routine and remind them to follow it; for example, visiting the toilet at regular intervals and before going to bed
  * avoid caffeinated drinks particularly in the evenings.

### Tips and advice

If the person you care for is having problems with incontinence, ask your GP to refer them to a continence advisor who can advise on things like waterproof bedding or incontinence pads.

Remember that incontinence could also be due to bladder or urinary tract infection or a side effect of medication and should be checked by your GP.

Alzheimer's Society has a fact sheet on managing toilet problems and incontinence
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## Infections

A person with dementia may not recognise the early signs of an infection; for example, that they need to pass water more frequently or that it is painful, or that their chest feels tight. So you may need to monitor them carefully.

A first sign of infection in a person with dementia can be a fall, a sudden, increased level of confusion, or a sudden lack of interest in what is going on around them. It's easy to think these are connected with their dementia rather than caused by infection. If you notice these symptoms you should ask their GP to check that they don't have an infection.

An infection that goes unnoticed could quickly become serious and result in the person needing to go to hospital which can be very disorienting for someone with dementia.

### Tips and advice

If the person you care for suffers from frequent bladder infections, keep a supply of urine sample bottles so that you can get a sample to their GP quickly for testing.

If a person has had two or more courses of antibiotics they might need further investigation.

See Confusion, Delirium, Falls, Hallucinations
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## Lack of inhibition

The changes to the brain that come with dementia can mean that some people lose their inhibitions and say or do things they would not have done in the past.

They may, for example, make personal comments about other people, or strike up conversations with strangers.

Lack of inhibition can cause difficulties. A person may become too trusting of strangers and so, especially if they live alone, be vulnerable. They may not realise that if they talk with children they don't know, other adults may become concerned for the children's safety.

Lack of inhibition can also lead to other changes; for example, a person may take other people's property or shoplift. There may be changes in their sexual behaviour, or they may say things that are very sexual in conversation.

Many people with dementia will not have any of these changes, but if the person you care for does you may need help and advice, both to protect the person and, sometimes, for your own and others' protection, too. You do need to get advice from your GP or Memory Clinic.

Lack of inhibition can be an early sign of Fronto-temporal dementia.

### Tips and advice

Remember that when a person's behaviour changes, it is not within their control. So rather than blame them, try to get help to manage the situation.

Try not to be too embarrassed to get help. Most professionals will have experience of others with similar problems.

If the behaviour of the person has changed it is a good idea to mention this to visitors, so that they are not upset by the changes.

See Sexual behaviour
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## Lack of insight (denial)

Some people with dementia do not have insight into their own condition and will not admit that they have any health problem or, more specifically, that they have dementia.

This is particularly common with Fronto-temporal dementia but can also occur with other dementias.

Lack of insight can be difficult to deal with. It may have made it difficult to get a diagnosis in the first place. Even after diagnosis a person may not accept that there is anything wrong and may get angry if you suggest there is.

If someone lacks insight into their condition it may lead to difficult or dangerous situations, if they will not accept help or use aids such as walking frames, or believe they are still safe to drive.

If the person you care for lacks insight you will often need diplomacy and persuasion skills to help them. Try to avoid confrontation. There may be situations where you have to take action to keep someone safe. For example, making sure they cannot get access to car keys, or go out on their own.

If a person's lack of insight becomes very difficult to deal with you will need to seek help from your Memory Clinic.

### Tips and advice

If you have a confrontation with the person because they lack insight, try to move on and get back to normal quickly afterwards. They will not be able to recognise that they are wrong and proving it will only distress them.

Try to reassure someone after a confrontation by showing that you care for them.
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## Language

See Aphasia/Dysphasia, Communication
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## Memory

Loss of memory is one of the early signs of some forms of dementia.

It is often mistaken for the forgetfulness that can develop as people age. For a person with dementia it is more extreme, and they may not realise how forgetful they are.

People with dementia find it difficult to learn new things, so may not remember arrangements or new people or places. As dementia advances, some people may seem to be living in the past. They may focus on things they can remember rather than new events that are happening around them. So, for example, if the person you care for has moved home, they may forget where they are and refer to the home they had before moving. In advanced dementia they may not recognise even familiar environments, including their own home.

Memory loss is particularly evident in Alzheimer's and Vascular dementia. It may not be a problem for people with Fronto-temporal dementia or Dementia with Lewy bodies, at least in the early stages of the condition.

Your Memory Clinic may run cognitive stimulation courses to help people with early stage dementia by stimulating their memory, problem-solving skills and language ability. This does not cure or slow down dementia, but can bring some improvements in symptoms.

Using prompts or memory aids can help supplement a person's failing memory.

### Tips and advice

Memory loss can lead to repetitive behaviours (such as asking the same question, or repeatedly checking the same thing). The person may have no memory of having done the same before. Rather than reminding them, it is better to try to distract them by moving on to a new conversation or changing activity.

If distraction doesn't work try to focus on how they feel, for example asking, 'Is that worrying you?', or turn the conversation to talking about whatever they are focussing on.

For more information see:

  * Confusion, Repetitiveness
  * 'Memory aids' in Adaptations at home.
  * Alzheimer's Society fact sheet on coping with memory loss.

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## Misperceptions

Some people with dementia may misinterpret everyday objects; for example, they may think that a curtain or a coat on a peg is a person or that people on TV are real.

Everyday misinterpretations can usually be reduced by moving the object that the person is misinterpreting, or having more light in a room.

### Tips and advice

Check whether the person needs glasses, or whether the glasses they have are the right prescription. Some visual difficulties can be caused by eye problems associated with old age, such as macular degeneration, glaucoma or cataracts.

For more information see

  * Hallucinations
  * Alzheimer's Society fact sheet on sight, perception and hallucinations in dementia

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## Mobility

There are many conditions associated with ageing that can either restrict mobility or affect balance; for example, arthritis, strokes, heart conditions, infections. Mobility may also be affected by the side effects of medication.

Keeping mobile is important, as it helps to maintain muscle strength.

If the person you care for develops mobility problems, contact their GP to discuss possible causes.

They may need a walking stick or frame. A Community Care Assessment will suggest what sort of aid may be helpful (for more on Community Assessments, see Being a carer in 'Day-to-day living'). An assessment may also recommend physiotherapy to improve mobility. If you need help to move a person (for example, so that they can shower or have a bath) an assessment may make recommendations for what help is needed.

Remember that if someone is using a walking stick or frame you may need to rearrange furniture to give them space to move safely.

### Tips and advice

Try to keep the person you care for mobile for as long as you can but allow plenty of time for activities. Do not hurry them as feeling stressed can increase the chances of a fall.

For more information see:

  * Co-ordination, Falls
  * Alzheimer's Society fact sheet on moving and walking about
  * DLF fact sheet on walking aids.

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## Mood swings

People with dementia can experience mood swings. Their mood may dip as they think about their diagnosis and what it means for their future.

They may feel scared and frustrated as they find they cannot do things they had been able to do previously or cannot understand what is going on around them. Changes in their ability to control their feelings and in their ability to say what is wrong, may mean they express their feelings much more strongly than in the past.

If a person expresses their feelings violently, and you feel you are at risk, you must tell their GP or Memory Clinic.

Looking after a person with dementia can be demanding and carers and other family members may also experience strong mood changes. These feelings are normal and it is better not to bottle them up but to talk to someone about worries. This could be a family member or friend, someone from your local dementia support group or your GP, who can refer you to a counsellor in your area. Or you can talk to advisors at the Memory Clinic.

### Tips and advice

If you notice the person you care for gets frustrated by not being able to do something in particular, try to help them with it, without making a fuss. So, for example, help them to get dressed as though it was normal routine.

For more information see:

  * Anxiety, Depression, Emotions, Lack of inhibition
  * NHS Choices information about stress, anxiety and depression.

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## Night walking

Getting up and walking either around the house or the neighbourhood at night can be hazardous for a person with dementia, exhausting for a carer living with them, and a worry if the person lives alone.

A person with dementia may wake for many reasons but then not realise that it is night rather than day and so not consider the risks of either walking around a dark house, or going out.

Night walking can be a result of a person waking from a vivid dream. This could have been caused by medication taken in the evenings, or they may be in pain (for example, caused by arthritis). Talk to their GP or Memory Clinic to see if it is possible to change the time of day for medication that might be causing dreams or to check if the person might need pain relief.

Some types of assistive technology (for example, pressure mats with alarms that are triggered if a person has got out of bed) may help a carer sleep, knowing they will be woken if the person gets up.

### Tips and advice

If a person is struggling to sleep at night, stop caffeine or alcoholic drinks in the evening. Stopping daytime napping may also help.

You may also need to monitor what television programmes a person watches before bedtime in case they are watching things that keep them awake.

Try to ensure the person has some form of exercise during the day so that they are more physically tired and relaxed at night.

For more information see

  * Pain, Sleep disturbance, Wandering
  * DLF fact sheet on assistive technology, including alarms.

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## Nutrition

See Eating and drinking
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## Pain

A person with dementia may be in pain but may not be able to tell you about it. Or they may be able to say they are in pain but not where it is. This can lead to irritability and difficulty sleeping, which can increase their confusion.

They may have conditions that are causing them pain, such as arthritis, poor circulation or leg ulcers. They may have had falls that they have not mentioned. In some cases it is possible they have fallen and cracked or broken a bone. They may be in pain because they have an infection, or are suffering from constipation or indigestion.

It is important to look out for signs of pain. If you notice cuts, bruises or inflammation, have them checked by their GP and possibly at your hospital Accident and Emergency department. If a person seems to be in pain when eating, ask their GP to check whether they have any problems with their mouth or digestion.

Some medication can cause indigestion or stomach cramps so talk to the GP if you think this might be a cause.

Continuous pain can lead to people becoming less mobile. Talk with the GP about whether they might be helped by regular pain relief.

### Tips and advice

Look out for signs of pain, such as moving in a new and awkward way, wincing when touched in a particular place, trying to protect a part of their body when washing or dressing.

If the GP prescribes pain relief, ensure it is given at regular intervals to prevent pain, rather than waiting until the person seems to be feeling pain.

See 'Pain' in Caring for physical health.
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## Passiveness (lack of interest)

Sometimes people with dementia can appear withdrawn or uninterested in people and events around them.

This behaviour could be a result of not being able to recognise people or places, or of not being able to plan and initiate tasks or conversation independently.

Some people may stop activities they were skilled at in the past, such as music or art, because they realise they can't achieve the same standards they used to. Try to encourage them to continue or keep their interest; for example, by going to a concert, listening to music or visiting a gallery or looking through art books.

Low mood can also cause a person to become less responsive. If you think that the person you care for might be depressed, it is important to ask for advice from your GP or Memory Clinic.

### Tips and advice

Check that the person has not become withdrawn because they cannot hear or see properly. Regular hearing and eye tests will help eliminate these problems.

You may be able to help a person get involved in hobbies or tasks if you break them down into simple steps and prompt any steps that may have been forgotten.

See Depression, Everyday activities
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## Personality changes

Dementia can make people feel anxious, lost, confused and frustrated.

Although each person with dementia handles these kinds of feelings in their own way certain changes in personality and/or behaviour are common, for example:

  * repeating questions or doing something repeatedly
  * walking and pacing up and down
  * aggression, irritability, shouting, using foul language or saying things that are not appropriate. This is called 'verbal disinhibition'.
  * losing inhibitions in their behaviour, including sexual behaviour
  * becoming very withdrawn
  * becoming suspicious of other people.

It can be distressing for carers to see such changes in a person they know well. When these behaviours are stressful to deal with it's important to remember that the person is not being difficult deliberately.

### Tips and advice

Occasionally a change in behaviour can be due to a change in medication. This could be starting a new medication or changing the dose or stopping a current one. If you see a change following a new prescription, contact the person's GP or Memory Clinic.

For more information see:

  * Aggression, Depression, Emotions, Lack of inhibition
  * Alzheimer's Society has a fact sheet on changes in behaviour.

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## Pressure sores

Anyone who has limited mobility is liable to pressure sores (sometimes called bed sores or pressure ulcers). Pressure sores develop because specific skin areas are placed under pressure, reducing blood circulation to them. Pressure sores can also develop in people with dementia due to – incontinence, as moisture damages the skin – agitation or restlessness if the person repeatedly pulls at their clothes causing friction damage to the skin.

In older people, who may have thinner skin and poor circulation, pressure sores can develop very quickly, so take care to prevent sores from developing.

For someone who is in bed all or most of the time, pressure sores can develop on their shoulders or shoulder blades, elbows, back of their head, rims of their ears, their knees, ankles, heels or toes, their spine or tail bone (the small bone at the bottom of their spine).

For someone who spends a lot of time sitting in a chair, pressure sores can develop on their buttocks, backs of their arms and legs, back of their hip bone.

To prevent pressure sores, make sure the person you are caring for moves regularly. You may need to help them turn and lie in a different position, or help them stand (if possible) or move to a different chair if they spend a lot of time sitting. You may be able to use cushions or pillows to support the person comfortably in a different position.

If you are caring for a person at home, who is not very mobile, contact your nurse or GP to ask about supportive pressure relieving aids, such as cushions or mattresses.

You will need to check a person's skin carefully to pick up the first signs of sores. An easy way to check someone's skin without causing distress is when you are helping them wash or dress. If there are any changes to their skin colour in pressure areas it may signal the beginning of a sore. However small the change, you need to take extra care to help them move and to check that area. If the skin has hardened, blistered or broken this signals the beginning of a sore, which could become infected. The sore may need dressing and the person may need antibiotics. You need to consult your nurse or GP for advice. You will need to keep moving the person to ensure the sore will heal and is not under any more pressure.

Pressure sores may seem a minor problem initially but they can develop into deep, painful sores and become infected if not treated properly, so do not delay in responding to any signs you see.

### Tips and advice

Keep a timesheet of the times you reposition the person you are caring for to make sure that you prevent pressure sores from developing. For someone who is prone to sores, this may need to be as often as every 15 minutes.

For more information see:

  * Alzheimer's Society fact sheet on pressure ulcers
  * NHS Choices on pressure ulcers

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## Repetitiveness

People with dementia can repeat questions or carry out certain actions over and over again.

A common behaviour is repeated phone calls to the same relative or friend. Or they may want to investigate something to see how it works, even if they knew this in the past. This repetitiveness may be due to memory loss or boredom, anxiety or side effects of medication.

Carers can find this repetitiveness hard to deal with but need to remember that the person may have no recollection of saying or doing something before and that it can be upsetting to be told they are being repetitive.

As far as possible it is best to try to distract the person, moving them on to a new topic or activity. Involving other people in caring for the person can be particularly helpful if they are repetitive.

### Tips and advice

It can be useful to have a range of activities in mind that could help prevent boredom; for example, helping with something round the house, looking at a favourite magazine, book or photographs, listening to music.

Alzheimer's Society has a fact sheet on changes in behaviour
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## Restlessness

Restlessness could be a response to something that is irritating a person; for example, they are too hot, or they don't like the TV or radio being on.

They may seem to be irritated by things that haven't upset them in the past, or that do not bother others. Restlessness may also be a response to boredom, hunger or thirst, needing to go to the toilet, feeling unwell, being in pain or a need for exercise.

If the person can tell you what is bothering them, try to remove the cause. If you can't find a cause try reassuring them and introducing different activities to distract them.

### Tips and advice

If there are activities a person can do with you (for example, helping in the house or garden) it may reduce their restlessness.

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## Sexual behaviour

As with other aspects of personality, a person's sexual feelings can change when they have dementia.

Depending on how they have been affected, a person may experience:

  * more, less, or no interest in sex
  * their ability to perform sexually may change
  * a change in inhibitions – they may be less sensitive to other people's feelings and to what behaviour is acceptable to others.

Some couples find it easy to adapt to these changes. But sometimes the changes can bring feelings of loss, anger or embarrassment. This is often the case if the person becomes more interested in sex than they have been in the past and is very demanding of their partner, makes advances to other people, or masturbates in public.

It is important to ask for advice if the behaviour of the person has changed in a way that may put them at risk if their interest in sex is very public or if they are putting pressure on you through demands for sex.

### Tips and advice

Talk to the GP or Memory Clinic if you are worried about a person's sexual behaviour.

The Alzheimer's Society also have a helpline for confidential advice 0300 222 11 22.

For more information see:

  * Lack of inhibition
  * Alzheimer's Society fact sheet on sex and dementia

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## Sleep disturbance

People with dementia often experience disturbed sleep. They may wake during the night or be restless. When they wake they may not know whether it's night or day and so may want to get up.

Sleep disturbance is a result of the brain losing the control it usually has over how alert or drowsy people are at different times of day. It may also be a result of the person being in pain with arthritis or other problems. Some medication can also cause drowsiness during the day, interfering with sleep at night; other medication can make people more alert at night.

It is worth talking with the GP about whether the person's medication could be affecting their sleep patterns, or whether they need pain relief that will help them sleep better. Some sleep medication increases the risk of falls so caution is advised.

### Tips and advice

If getting to sleep seems to be the problem it may help to avoid naps during the day by keeping busy, so that the person is tired at bed time.

Keep to regular bedtimes and avoid alcohol or caffeine at night.

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## Suspicion of others

Dementia can make people become suspicious of others. This can be a result of their difficulty understanding what is going on around them.

Their assumption may be that other people are conspiring against them and holding information back. They may not recognise familiar faces and so believe that people they know should not be in their home. This behaviour may seem delusional but these feelings will seem very real to the person with dementia.

They may not remember where they have put things and may accuse other people of taking their possessions. If they lose items, they may panic and convince themselves that they have been burgled. They may start hunting for things in a very frenzied way. It may be difficult to reassure them unless you can find the thing they have lost.

If possible, try to reassure them. Check with them, to make sure that their anxieties do not have any foundation. Keep lighting bright to help improve the person's ability to recognise people and things.

### Tips and advice

Keep things in predictable places to help the person you care for find them.

Check that a person's difficulty recognising people isn't being made worse by poor eye sight. Make sure they have regular check ups.

See Anxiety, Depression, Personality changes
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## Swallowing

See Eating and drinking
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## Vision

Some people with dementia can have problems interpreting what they see.

For example, they might interpret a folded blanket as someone lying on a bed, or people on television as real, small people in their room. They may misinterpret patterns and reflections or shadows as holes to fall into or as things to trip over.

### Tips and advice

Make sure that rooms are well lit. Avoid patterned carpets and rugs, especially on stairs.

Make sure the person has regular eye tests and wears the correct glasses.

For more information see:

  * Falls, Hallucinations, Misperceptions
  * Alzheimer's Society fact sheet on sight, perception and hallucinations in dementia

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## Wandering

Walking or pacing is a common behaviour in people with dementia.

They may pace up and down or leave their home for long walks. They may set out to go somewhere but then forget where they're going and become disorientated and lost. This is distressing and potentially risky for the person, and can cause their carer anxiety.

If the person you care for is likely to wander, try to stay aware of where they are. You may be able to use assistive technology to alert you if the door of the house has been opened; similarly there are devices that can alert you if the person moves beyond a certain distance from their house. If it is safe to do so, try engaging them in activities that include walking.

Make sure a person who is likely to wander has a contact phone number for a carer or neighbour with them. Put contact information on a plastic key fob or wallet attached to keys and place within a handbag or coat pocket. Do not put the person's own address on their key fob or wallet as this could make them vulnerable if they were to lose them.

### Tips and advice

If you are concerned that the person you care for will be unable to find their way home you can let trusted, local shopkeepers and neighbours know. Ask them to contact you if they're concerned about the person's behaviour.

See Night walking
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# Medical terms

The list of terms below might be used in letters from the Memory Clinic or hospital to the GP. Patients, or their carers, usually receive copies of these letters.

If you are not sure about any of these terms ask your doctor.

**Affect** Expression of emotion or feelings

**Ataxia** Lack of muscle co-ordination (e.g. problems with walking)

**Atrophy** Decrease in size or wasting of a body organ (e.g. brain in dementia )

**B12** Type of water soluble vitamin essential for brain and nerve function

**BADLS or BADLS+ (sometimes ADLS)** Measure of person's ability to look after themselves (Bristol Activities of Daily Living scale)

**bd** To be taken twice daily (medicine)

**BP** Blood pressure

**BPSD** Behavioural and psychological symptoms of dementia (e.g. agitation, low mood, hallucinations in dementia)

**CDT** Clock drawing test used in diagnosis of dementia

**Cerebrovascular** Relating to blood vessels within the brain

**Cognition** Mental processes including thinking, concentrating, remembering

**CST** Cognitive Stimulation Therapy – structured sessions of activities for people with dementia

**Delirium** Severe confusion that can develop over hours or days, due to physical illness such as urine infection. May cause hallucinations

**Dysphagia** Swallowing difficulties

**Dysphasia/aphasia** Impaired communication due to problems in the brain

**ECG** Heart tracing test that records heart activity (printed out on pink paper)

**Euthymic** Person's mood is normal (not depressed)

**Executive function** Ability to plan and complete a sequence of events

**FBC** Full blood count – blood test which includes check for anaemia

**Folate** Type of water soluble vitamin essential for brain and nerve function

**Frontal** Relating to the front part of the brain

**Glu** Glucose – blood test checking sugar level

**Hallucination** Experience of perceiving something that is not there (e.g. seeing animals that are not there, hearing voices when no one is talking)

**Involutional change** Decrease in size (similar to atrophy)

**Ischaemic** Inadequate blood supply to an organ

**LFTs** Liver function tests – blood test checking how well the liver is working

**mane** Morning (e.g. medicine to be given in morning)

**Mild cognitive impairment (MCI)** Mild cognitive problems that aren't severe enough to be dementia

**MMSE** Mini Mental State Examination – a standard test of cognition

**MOCA** Montreal Cognitive Assessment – a test of cognition

**Neuropsychological or neuropsychometric assessment** Detailed cognitive testing that can help with making a diagnosis. Carried out by a psychologist or specialist speech therapist

**nocte** Night-time (e.g. medicine to be given at night)

**Occipital** Relating to the lobe at the back of the brain

**od** Once daily (medicine)

**Parietal** Relating to the lobe at the top of the brain

**Psychosis** Set of experiences including hallucinations or delusions that make the person struggle to understand reality

**QOF dementia register** Quality and Outcomes Framework (QOF) – a system where GP surgeries keep registers of patients with conditions such as dementia to ensure follow up

**REM sleep behaviour disorder** Sleep disturbance where person has vivid dreams and may shout out or be physically active

**Renal** Relating to the kidneys

**Respite** Time out for the carer (e.g. by arranging for the person with dementia to go to a day centre or into a care home for a short period)

**Small vessel disease** Changes to very small blood vessels in the brain resulting in brain tissue damage from lack of oxygen

**Temporal** Relating to the lobes on the sides of the brain

**tds** Three times per day (medicine)

**TFTs** Thyroid function tests – blood test checking how well the thyroid gland is working

**TIA** Transient ischaemic attack. Sometimes called a mini-stroke. When blood supply to part of the brain is temporarily disrupted

**qds** Four times per day (medicine)

**U+Es** Urea and electrolytes – blood test checking how well the kidney is working

**URT** **I** Upper respiratory tract infection

**UTI** Urinary tract infection
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# About this guide

Background and credits

Contents

## About this guide

### Introduction by Jacqueline Fairbairn Platt

This guide offers practical information for anyone caring for a person with dementia, and has been developed in collaboration with healthcare professionals, educators and carers. The guide aims to support an understanding of the progressive nature of dementia and the challenges a person caring for someone with dementia may experience. Its focus is on _living_ _well_ with dementia.

The guide:

  * Shares information that will help support the journeys of those with dementia, once they have been diagnosed.
  * Acts as a tool for carers and care providers, working together and using the guide, to establish greater knowledge and understanding of what is required when a person is diagnosed with dementia.
  * Answers questions from carers and care providers about services that will be required to support them and the person they are caring for.
  * Provides information in a language that is understandable to all, highlighting that dementia is everyone's business, emphaising that the person with dementia is central and that they should receive the advice and support they need to live well.

We are delighted that this guide has developed from a local carer resource and adapted to become a regional and national guide for carers and care providers.

_– Jacqueline Fairbairn Platt_ Associate Dean Quality Improvement, Health Education England Thames Valley

### Introduction by Carol Munt

A friend and I, who both had mums with dementia, realised that although there were lots of leaflets giving help and information about caring for someone with dementia we wanted it all in one 'file'. We were delighted when, two years later, after contributions from both health professionals and carers, the hugely successful _Dementia Handbook for Carers (Berkshire West)_ was launched in 2014 as a paper version.

Although the original handbook was aimed at family carers it was found to be useful as a teaching aid for non-family carers (NHS and social care staff). Therefore, this follow up electronic guide has been developed for carers and care providers, to reach a wider audience.

The content of the e-guide encompasses the majority of the original handbook, with some updating and with the addition of material for non-family carers. As with the original handbook this version keeps the person living with dementia at the heart of everything carers do.

I am extremely proud to have been associated with this project. I know from experience that carers can have a tough time. I really hope that having all the information in one easy to access version will be a help.

My advice is to look through the contents then select the topic that you need and it will take you to specific, detailed information.

Please remember that everyone with dementia has a life story to tell and try to make time to listen to them as part of your caring.

_– Carol Munt_ Patient leader and former carer

## Acknowledgements

The 'Dementia Guide for Carers and Care Providers', has been developed by Health Education England Thames Valley, in partnership with the Centre for Information Design Research, University of Reading. The guide builds on the excellent work of Berkshire Healthcare NHS Foundation Trust and the University of Reading, who jointly developed the 'Dementia handbook for carers'. These organisations worked closely with a group of people who had first hand experience of caring for someone living with dementia. The original handbook was developed as part of a research project, funded by the 2012 Prime Minister's Dementia Challenge, to improve delivery of information to carers and to give them better access to local health, social and voluntary support and services.

In developing this guide, we would particularly like to thank

Health Education England Thames Valley. Particular thanks to

  * Zoe Scullard, Health Dean, Health Education England Thames Valley, for her continued support throughout the project
  * Jacqueline Fairbairn Platt, Associate Dean Quality Improvement
  * Dr Joanne Brooke, Associate Professor in Dementia Care,
  * Rosemary Martin, End of Life Project Fellow

Professor Alison Black, Centre for Information Design Research, University of Reading

Mark Barratt, Text Matters

Thanks also to:

Berkshire Healthcare NHS Foundation Trust, who provided the foundations for the guide to be developed

  * Dr Jacqui Hussey, Consultant Old Age Psychiatrist (lead on Younger People with Dementia)
  * Vicki Matthews, Service Development Manager

Health Education England Thames Valley Dementia Leads Collaborative Forum

Jo Birrell, Buckinghamshire Healthcare Trust

Maureen Cundell, Oxford AHSN Dementia Clinical Network and Oxford Health NHS Foundation Trust

Karen Rudman, Royal Berkshire NHS Foundation Trust

Dr Luke Solomons, Consultant Psychiatrist, Psychological Medicine, Oxford University Hospitals NHS Foundation Trust

Finally and above all, thanks to all the dementia carers and patient leaders who provided a very passionate, sincere and practical contribution, including

  * Carol Munt, patient leader and former carer
  * Douglas Findlay, board member Reading Healthwatch

  * Faith Newell, carer
  * Rebecca Day, carer

  * Thames Valley Healthwatch

## Copyright

This work is jointly owned by Health Education England Thames Valley and Berkshire Healthcare NHS Foundation Trust. All rights reserved.

Health Education England Thames Valley  
Thames Valley House, 4630 Kingsgate, Oxford Business Park South, Oxford, OX4 2SU

HEE Thames Valley website

