>> I wanted to talk about or
at least go through the way
that technology is being
used now to address social
isolation because there is a
crossover you're going to see
between social isolation,
technology and technology that
can monitor people.
We have linking people
together online, online
support groups.
We move to a new office next
week and I'm really excited.
We have for the first time the
ability to teleconference and
we'll be able to do
online support groups.
Blogs and blogging, Facebook,
instant messaging,
email, Twitter.
All these different ways now
that we can bring people
together and have them
interacting and address
social isolation.
Now I want to get into
sort of the meat of this.
So, privacy and
advance directives.
The Health Care Power of
Attorney and Living Will, so
the Power of Attorney and the
Living Will, if you do these
in advance, you can address an
awful lot of these
conditions upfront.
For me, I use myself as an
example all the time, I have
this device on my phone.
I have a security camera
hooked up in my living room
and I can turn this on and
I'll click Caesar and it will
open up and in a second, I
will be, right now I can now
look at my dog and
see how she's doing.
Basically that's what it is.
I want to be able
to monitor my dog.
She's sleeping on the couch,
so there isn't a problem.
So, this is a security
device right now, right?
She isn't chewing anything up.
She's not destroying anything.
But as soon as I push this
button, it will bring up
a microphone.
Hi, Eva.
Hope you're doing well.
I'll see you in a few hours.
And now I just talked to my
dog and it's gone from a
security device to a
social isolation device.
Now, what is it?
What is the primary function?
The primary function is
security but it's fulfilling a
secondary role and I think you
have to look at what is the
primary function
of the device.
Is this really a social
interaction device?
It is for me and for my dog,
but primarily it's a security.
The way I look at it is they
can see me and I can see them,
then it's social interaction.
But if it's one-way, I view
that as more security.
But the Health Care Power of
Attorney can address all this.
I've told my family, you can
put monitors all over
my house.
You can alarm the doors.
Anything you want to do.
I don't care about my privacy.
I want to stay home with my
dogs as long as I can and if
you put me in a nursing home,
I'm going to try to get kicked
out and I've been in this
business long enough to know
how to do it.
So, you're not going to do
very well if you try to force
me in a nursing home.
>> You need to give
me some tips on that.
>> And when you do privacy
and advance directives, as I
mentioned earlier, the patient
can be involved in the
planning and decision-making
and that is really,
really important.
At any stage,
that's important.
But if they're doing this
before they have dementia, if
you go down to the bottom,
providing medical informed
consent requires capacity
to comprehend information.
So, if they've done their
advance directives, they can
avoid all of these problems.
And what ends up happening
is if you don't have those
advance directives, the
family's left trying to figure
out either what you wanted or
what's in your best interest.
>> It's more, it's very
important, I just wanted to
add this.
Can I just add that it's
really important to have
it in writing?
I mean, it's good to tell your
family what you want, but when
push comes to shove and
they're faced with an
emergency situation and
they're panicked, it's good to
have it in writing.
Bottom line.
So, just wanted to add that.
>> Yes.
And DHS has these
on their website.
They have a great link to
this, so there's a way to
access that.
And then types of wandering.
Basically we have two different
types of wandering, right?
You're going to either wander
away on foot or you're going
to wander away in a vehicle
and there's a big difference
between the two in terms of
how society is going to look
at that.
If you get, if you're on foot,
say, and it's 75 degrees out,
you walk out of your assisted
living facility, we have
some time, right?
We've got a window that we can
get you and bring you back.
What if it's five below zero?
Now suddenly
everything has changed.
And what if they get
in a car and they go?
And often they get in a car,
it's not just their safety and
welfare that we're concerned
about, it's the public safety
and welfare as well.
So, at that point privacy's
going out the window because
health and safety is
going to trump privacy.
So, that's why you'll see a
Silver Alert will go out.
HIPPA doesn't matter.
We're trying to protect the
public health, safety,
and welfare.
Warning signs for
people wandering.
If people are coming home and
they're coming home late and
they can't explain why they're
late, a lot of times they got
lost and they don't
want to tell you.
Having difficulty navigating
new environments.
Having trouble finding
familiar places.
I talked about my grandpa
earlier and how he was having
difficulty driving.
Well, the police got involved
and said, you have to come in
and be re-tested.
And he went out, and he had
lived in Madison for probably
50 years at that point.
He had come from Monroe,
Wisconsin, and always gone to
the same Motor Vehicle
Department building and
renewed his license.
He went out to renew it
and he couldn't find it.
And he came back, and he
had been having some small
strokes, but he was cognizant
enough to know that he
couldn't find the place.
He said, I'm not going
to drive anymore.
And he recognized that because
he couldn't find a familiar
location, that he wasn't
going to drive anymore.
So, if you're lucky, it will
happen with someone who is
aware enough to make the
decision themselves.
Unfortunately, a lot of
times that's not the case.
So, wandering prevention
and technology.
We have security cameras, but
then where are they going to
be located?
Do you want a security
camera in the bathroom?
Where are these security
cameras going to be?
Who's going to have
access to them?
My security camera
has a password.
Only I have access to it.
Alarm systems.
Who's going to monitor
the alarm systems?
Text alerts.
Who's going to be receiving
those text alerts?
Mobile phone apps.
If you're using a mobile phone
app to track Mom's phone, who
has the ability to
track Mom's phone?
And how is that
going to be used?
Talk with the person
with dementia.
Find out who they're
comfortable having as the
person that does these
things and see what they're
comfortable with.
What are they willing to have
in terms of what's going to be
monitoring them?
And part of the difficulty,
one of the things that we
haven't talked about yet is
at what point in the disease
process is this person?
Is this someone like me who is
50 years old and maybe if I
had just been diagnosed with
young onset or early onset
dementia and I'm still
competent, I'm still with it,
or is this someone who's
towards the late stage of the
disease or middle stage of the
disease and they're not really
with it at all?
I mean, there's a spectrum of
dementia that has to play into
all of this and that's what
makes a lot of this
really difficult.
You are on a big spectrum.
You're on a spectrum from
basically where we are to the
point where people are not
feeding themselves anymore.
That's the spectrum
of Alzheimer's.
And so we say prevention
methods first.
Identify the most likely time
they're going to wander.
Keep things like car
keys out of sight.
Use devices to let you know
if egress is happening.
There's no downside to alarms.
I mean, alarms are your friend
and there's no substitute
for supervision.
Technology is not
your babysitter.
You still need to have a
human element involved.
And then we say before
someone wanders, make a plan.
Keep a current photo that can
be transmitted electronically.
A recent photo of the car
they drive if they're
still driving.
And then make note of and take
photos of identifying marks,
bumper stickers, dents, vanity
plates, anything that will
help identify that vehicle.
And I've mentioned before at
what stage is the person
with dementia.
That's a really
important and key piece.
And then tracking devices.
We get into this now.
GPS versus radio-based.
So, there's the GPS, the
eye-in-the-sky working off
satellites, and then there's
radio-based, which is some of
these wearable.
You wear a device on your
bracelet and then there's
usually three different
antennas available.
One can be mounted on air
plane, two on the ground.
They can triangulate
your position.
If you had someone that was,
say they lived at home next to
a big forest and they wandered
on foot, I would want radio
telemetry to read because
it's very good at that.
GPS would be if you think the
person's going to go in a
vehicle, if you think they're
going to go long distances.
What we find is that the GPS
is not very good in really
built-up areas, like if
they're in a dense city
with skyscrapers.
If they're in a building, GPS
is not as likely to find
them there.
Or in forested areas where you
have heavy canopy and they're
going to be below that canopy.
GPS is not good at
finding them there.
When we first trialed this in
La Crosse, we had a Vietnam
veteran go out into
the woods and hide.
And the Sheriff's Department
went out with the radio
telemetry to find him, and we
found him, but he had
buried himself.
I mean, you could stand right
there and look at him,
you'd have no idea the
guy was there.
He was an expert
in camouflage.
Covered himself in leaves
and twigs and everything, so
unless you had dug up, you
would have had no idea
he was there.
He couldn't hide from that
radio telemetry, so that's how
good that can be at
pinpointing in a smaller area,
but radio telemetry doesn't
have the range that GPS has.
So, if I were worried that my
mom was wandering, I would
talk to her about, hey Mom,
I'd really like you to have
both of these.
My mom doesn't have dementia
and she would want me to tell
you that, but if she did have
dementia, that would be what
I'd be looking at, both of
those areas of technology.
And best practices just from
the powers that be that study
these things.
The best practice is to make
the decision at the time of
diagnosis with the person with
dementia, the family,
and the caregiver.
What do people think?
What do people think
about tracking devices?
Well, studies show cognitively
intact older adults favor the
idea of tracking
people with dementia.
So, before they get dementia,
at least they favor that idea,
so it gives you a good
baseline and it makes you feel
a little bit better about
using some of this stuff.
They also say they want
structured meetings with
family caregivers are
preferred for decision-making.
They want to be part of the
decision-making, if they get
to the point where they need
to have a tracking device.
Caregivers give preference to
safety over autonomy when the
caregiver is responsible
for the patient.
What do you think's going
to happen when they're not
responsible for the patient?
When the caregivers are not
responsible for the patient,
they give autonomy to safety
when the patient is under the
care of others.
And the same holds
true with families.
If you're caring for the
person, safety is
your priority.
That's what your
focus tends to be.
My focus, my task is, we're
very task-oriented as human
beings, my task is to keep
this person safe and that's
what you tend to focus on.
Guiding principles.
The Universal Declaration of
Human Rights enshrines both
privacy and freedom of
movement as fundamental rights.
I think that's one of the
things to consider when you're
using these things.
Remember that we have freedom
of movement and we have
privacy, so we have to balance
those two rights and that
should be at the center
of decision-making.
And remember
cognitively-impaired people
need their rights protected
along with their safety.
A lot of times I think we
focus so much on safety and we
forget sometimes, or we don't
forget but I think the right
side gets maybe short shift.
And sometimes it's out of
necessity but something you
have to keep in mind.
Questions to consider.
Do the safety benefits of the
technology outweigh the risks
to personal liberty?
And what was mentioned
earlier, what is the intention
of the technology?
What is the idea behind it?
Does a tracking device,
does it enhance or
restrict autonomy?
And going back to the car and
putting that device in the
car, is the idea behind it
that we want to take Mom's
keys from her?
That's the decision we've
already made without any
evidence, without knowing how
she's doing, or is it that we
want to assess this.
We're going to put this in and
try to figure out how to give
Mom as much autonomy
as possible.
And obviously I would suggest
that you should be looking at
it from the perspective of how
we give Mom the most autonomy
while balancing her safety.
And then are interests coming
up against each other?
And there are all sorts
of interests that you can
probably think of yourself,
but one I pulled out was
patient privacy versus
caregiver convenience.
I think you'll see in one of
the upcoming slides or maybe
it was one of the past slides,
I mentioned that wandering is
very stressful
for the caregiver.
I mean, that's
the reality of it.
When the person wanders,
they're at risk, but the
caregiver's also going
through a lot of stress, too.
Are caregivers sometimes doing
things that's not so much in
the interest of the person
with dementia, but it's more
in their interests?
And sometimes I know
that that does happen.
I had a guy in a support group
say, whose wife was on a
sleeping pill and the doctor
said, I'm going to tell you,
I'm not giving the sleeping
pill to her because she needs
it; I'm giving it
to her for you.
And the deal was she was up
all night, he wasn't getting
any sleep.
And he said, I can't be up all
night and then taking care of
her all day.
And that's a legitimate
case of that.
I'm not saying that these
are never legitimate cases.
I'm just saying that these
are things that we need
to consider.
Using technology to find
a person with dementia.
A whole lot we can do today to
find someone when they're lost
with dementia that we weren't
able to do before and an awful
lot of this, people don't know
about, so please get
the word out.
We have this great
Silver Alert program.
We have all these ways to get
things out, but people don't
know that tracking a cell
phone requires a court order,
unless you have someone
else's name on it.
So, if I was worried about Mom
wandering again, I would get
my name on Mom's cell phone
account, so that if Mom
wandered, I could immediately
tell the Department of
Justice, hey you're authorized
to track that phone right now.
Don't get a court order.
Don't worry about that.
You can track it right now.
And you can track cell phones
yourself now with those
applications, as we
mentioned before.
Same thing with banks
and credit cards.
You can have someone put on a
bank or credit card account,
not authorized to withdraw any
money, but they're able to
monitor the account.
That can be beneficial for
a whole lot of reasons.
I have a grandmother who gave
away $20,000 in one year to
people calling up saying,
you've won something; just
send a few hundred
dollars for the shipping.
And she would do
it again and again.
She wasn't remembering that
she had just done this.
It was over $20,000
in one year.
Then we got on
her bank account.
Told the bank no checks were
to be authorized that didn't
have a second person signing
that were over $25 and that
ended it.
But if the person is wandering
in a car, where are they going
to stop?
What do you run out of?
I had a stop on the way down.
I had to stop for gas.
Are you going to stop for gas?
And once they stop for gas and
use the bank card, you now
have a direction of travel.
You know where, and you can
frequently, a family will be
able to tell where Mom or Dad
is going from where they have
used that bank card.
Oh, they're on their way to
Indiana because they used
to live there.
And that Safe Return program.
We've recovered people as far
away, the farthest that I've
found so far was South Dakota,
but the guy was
recovered safely.
Tracking their vehicle.
Nowadays most vehicles
have GPS embedded in them.
BMW has BMW Direct.
GM has, and I took this right
off the GM website, just to be
a full disclosure there.
GM-Family Link.
It's an add-on service that
allows OnStar members to stay
connected to their loved ones
who are traveling without you.
Using the OnStar Family Link
website, you can locate an
enrolled vehicle at any time.
You can also choose to receive
vehicle location alerts at any
time in the form of
email or text message.
You select the day, time
and frequency of alerts.
There are other things
you can do with this.
If you think the car shouldn't
be leaving at night, you can
get an alert.
If you want an alert if the
car moves within, between
9:00 pm and 9:00 am, you'll get
an alert that the car moved.
If the car has gone more than
a certain distance away from
the home, one of the things
DOT does really well is
restricting driver's license
rather than pulling them when
people get dementia.
They may say you can only
drive during daylight hours or
you can only drive within
so many miles of home.
This would tell you someone's
gotten on the interstate and
they haven't figured out how
to get off and you'd get
that alert.
Really neat things you can do
with that that you couldn't do
in the past.
So this is, and I'm not trying
to sales pitch this at all.
I've never used OnStar, but
everyone seems to have a
different version of this, is
the message I'm trying
to get out.
So Family Link, it's $3.99
a month in addition to an
existing OnStar membership.
I don't know what an existing
OnStar membership costs.
I don't have a GM product, but
my car I got four years of
Concierge and internet and
GPS, so that came with
the vehicle.
I think a lot of vehicles just
when you buy a new vehicle,
you get so many years
of that service.
So, for that, in that case you
would only pay $3.99 a month
for the extra.
And then Silver Alert.
I would be remiss if I didn't
say a little bit about
Silver Alert.
The Silver Alert program, it
can be issued for anyone over
60 if they are believed to
have Alzheimer's, dementia, or
another permanent cognitive
impairment that poses a threat
to the individual's
health and safety.
And health and safety again.
Silver Alert has a recovery
rate in the high
90 percentiles.
I don't know what it is.
It was like 98 I think the
last time that I looked.
Incredibly successful program.
And the idea was behind Silver
Alert was before we had this,
if someone was missing, we'd
put something out on the Crime
Alert Network and police were
looking for them, but you and
I weren't.
And the idea behind this
program was to get lots and
lots of eyes looking for them,
so that if someone's on the
interstate and you see that
alert come out, that you would
maybe call in.
And one of the neat ways that
we've recovered people, this
was, after we had passed the
bill, we discovered that in
Florida they had added
lottery outlets to the
Silver Alert program.
And at the bill signing with
Governor Walker, I said, you
know, Florida's added Silver
Alerts to the lottery outlets.
And where are lottery outlets?
All of those gas stations.
And the way it happens is the
person's face comes up on the
screen, so the
tellers see that.
And he said, consider it done.
Added it that quickly, added
it to the program, and we've
recovered several people now
who have stopped at a gas
station, walked in, and the
clerk said, I just saw him on
the thing, then called police
and was able to recover them.
That's really important.
This all started with the
Babes who went missing.
They were gone for 36 hours.
Mr. Babe, 90-something years
old, he was a machine gunner
at the Battle of the Bulge,
served the country, and then
he dies of dehydration
after having been gone.
It was dehydration
and exposure.
After three days of enduring
that, then a couple days later
he passed away.
So, avoiding that is really
important to me personally and
I think probably to
everyone else in this room.
Silver Alert is probably the
most successful program that
I've ever worked with.
I can't think of another
program that has such
a high rate.
To issue a Silver Alert, these
are the criteria that have
to be met.
There has to be a reasonable
belief that the missing
person's disappearance is due
to the individual's impaired
cognitive condition.
If we think the guy was
murdered, we're not putting a
Silver Alert out basically.
That's what you're getting at.
It has to be connected.
The Silver Alert request has
to be made within 72 hours of
the missing person.
The idea is we're trying to
catch them while they're
moving, not when they've
already gone someplace and
we're not going to find, or
your eyes aren't going
to spot them.
And then there's sufficient
information available to
disseminate to the public that
could assist in locating the
missing person.
That's why I said before how
important it is to have that
picture, recent picture of the
individual, and pictures of
the vehicle.
If you don't have actual
pictures of the vehicle, what
they will send out with the
alert is a generic, it may be
a black Chevy Tahoe and
it's a red version of this.
It's much better if you
have the actual vehicle.
It triggers something in
your mind when you've seen
something and then you
see it on the road.
It's a much clearer
picture for you.
The information has to be
able to help you, right?
I mean, if you don't have any
photos, you don't have any
information, John Smith is
missing and we think he's
driving up the interstate,
doesn't do any of us a lot of
good, does it?
We need the identifying
markers to be able to identify
John Smith.
How do you access
Silver Alert?
Silver Alert is accessed
through your local law
enforcement agency.
That is by design.
We didn't want, we saw in
other people sometimes people
would police department
shop, if their local police
department would say, no we're
not issuing a Silver Alert,
then they'd go to the county
or if the county said no,
they'd go to the local.
And if it's a family that has
a really big family, sometimes
they would have the police
department just say, look
we're just going to do it.
We don't want all
of them mad at us.
So, that's why your local
police department is the one
that has to submit the request
to the Department of Justice.
And then the Department
of Justice is the
final gatekeeper.
They decide yes or no.
We think not only does this
meet the criteria, but it's
legitimate and that we're
going to have some potential
benefit from doing that.
And with that, this is us with
the Alzheimer's and Dementia
Alliance of Wisconsin.
We provide services and
programs primarily in south
central Wisconsin.
We do public policy
for the whole state.
That's what I do.
We'll probably have some
changes coming now.
Our Executive Director and I
started 20 years ago together.
I started two months before he
did, and he just retired, so
I'm the last long-timer
with the Alliance.
But if you have any
information you need,
anything, contact
the main office.
And if you're not getting
what you need, contact me.
I'm Rob Gundermann and I'll
make sure you get whatever it
is you're looking for.
If you have any questions,
we still have a few minutes.
I was told to leave ten
minutes for questions.
Let's see, we have five.
>> You talked about the, you
mentioned online telephone
support groups.
Would that be something
statewide that we would tell
a family member about
and then they call in?
Could you tell us a
little bit about that?
>> That is the idea.
We want to be able to do
support groups in a much
broader sense.
There are people who can't get
into a support group meeting
and it's just, if you're
living in rural Wisconsin,
that's really hard for you.
If you're caregiving for a
spouse, you may not be able to
leave your spouse.
So, that is our goal.
We want to be able to
put this out statewide.
We want to be able to bring
in people from all over.
We're moving into our new
office in a week, so we are at
the very infancy of this.
I had the TV installed and
hooked up two days ago, so
that's where we're
at at this point.
We now have the technical
capability to do these support
groups and we'll see where
we can take it from there.
Any other questions?
>> Rob, I do have a question
for you, so I'm going to
challenge you a little bit.
You talked a little bit
about technology and people
wandering and monitoring.
To what extent, you know we
talk about people having
liberties and the right to
explore their environment and
have a good quality of life.
To what extent do we tolerate
them exploring their
environment and allow them
to take walks and hike and
explore the woods like they
did back in Vietnam or go
fishing or just
pace in their house?
>> That's a really good
question and how is it
addressed now?
It's the spectrum, right?
It depends on who the family
is and what the family is
determined that they think Mom
or Dad would have wanted or
what's in their
best interests.
And that's why I say it's
so important to get those
advanced directives, so that
you're making that decision as
to how much freedom you want
to be able to do these things.
It's a tough call and it
depends on so many factors.
How stable is Mom?
How good is Mom at walking?
Does Mom have a
history of falling?
How frail is Mom?
There's so many things that go
into the decision-making, but
it goes back to the balance.
You're balancing safety and
liberty and autonomy and as
long as you're recognizing
that they have the right to
that liberty and that autonomy
and that they have a right to
take risks if they want to
take those risks, then you
just have to balance out how
much you need to protect the
safety end.
I tend to be more physically
a risk taker that, you know I
grew up with a Mom who said,
you will heal; that will not.
So she, when things broke she
wasn't concerned about me.
She was concerned about
the thing that broke.
She had several kids and I was
the last one, so by the time
I came along,
everything heals up.
So, I've just
grown up that way.
I would much rather err on the
side of maybe I break a hip.
Maybe I break a leg.
Maybe something happens.
I also have a pretty high pain
threshold, so that doesn't
bother me so much, but other
people are going to have a
very different
position on that.
I'm absolutely, I do not
want to break my hip.
I've seen what happens to my
friends when they've broken
their hip and
it's been a slide.
Or I don't handle pain well.
I don't want any injury and
some people are really fearful
of that for good reason.
So, you've got to, it's all
individual and
[audio scratched]
on what the
prescriptive solution is.
If you had one solution for
everyone, it would
be easy, right?
We wouldn't need to be sitting
here talking about it, but
it's about coming up with
those decisions and it's the
criteria you're using
for those decisions.
>> I have a question.
What if the person has a Do
Not Resuscitate and they have
dementia and they have a
stroke and you are the
Power of Attorney for health.
And they're at the hospital
choking and they're looking at
you saying, I
don't want to die.
So, what would you do?
>> Now you're getting
into a legal question.
Like I say, I am not a
lawyer, so I preface that.
But as I understand, you can
have, you can set up any
powers that you, any orders
that you want,
advance directives
that you want.
You can withdraw those advance
directives at any time.
So, if I were the person who
was attending that individual
and they said to me, I don't
want to die, I would interpret
that as a withdrawal of that
Do Not Resuscitate order and
I would treat them because there
would be potential liability
for me if I didn't do that.
>> And then would they go back
to the nursing home, when they
recover you have to put the
Do Not Resuscitate back in.
>> And they would have to
agree to that and be competent
to do that again.
So, it may be permanently
revoked at that time.
They might not have the
ability to do it again.
And that's why when I get,
every time I do presentations,
at least once a year someone
says something to me about how
either they would like to be
tattooed or they would like
someone else to be tattooed.
I say, we don't do that.
There are connotations going
back to World War II, number
one, for why we don't tattoo
people, but the other thing
is, is it's irreversible.
Once you tattoo someone,
you can't make that change.
Anything else?
>> Thank you.
>> Thanks.
[applause]
