Living with Alzheimer’s and Dementia | Aging Matters | NPT

– [Voiceover] Coming up on Aging Matters, Living with Alzheimer’s and Dementia. (anxious piano music) – [Voiceover] Just have her hug you, okay? She is hugging you. She’s a sweet girl. – [Voiceover] It is no respecter
of socioeconomic status or lifestyle or achievement. All of us can be affected by dementia. – Good morning! It’s good to see you. – You look
so pretty, I love that. – [Voiceover] There’s
not a lot of resources to help you, especially when you
don’t have a lot of money. (anxious violin, piano music) [MELODY] Why are you crying? [MELODY] Nobody’s gonna take
you off. [PEGGY] Ok. As long as you’re with me. – [Voiceover] Dementia is
the most costly condition in America and the vast
majority of those costs are attributable to long
term care, not healthcare. And so families usually bear
the costs of dementia care. – [Voiceover] I want
them to understand that I have specific cognitive difficulties. But I have a whole lot of
cognitive abilities left. (anxious violin, piano music) – [Voiceover] Major
funding for NPT Reports Aging Matters is provided
by Cigna Health Spring, lead sponsor of NPT Reports Aging Matters. The West End Home Foundation,
support in the care of seniors through many
organizations in Middle Tennessee. The HCA Foundation on
behalf of Tri-Star Health. The Jeanette Travis Foundation, dedicated to improving
the health and well-being of the Middle Tennessee community. Addition funding provided
by the Community Foundation of Middle Tennessee and by
members of NPT, thank you. – Alzheimer’s, dementia,
for many Americans these words cause more anguish than
hearing a diagnosis of cancer. Hi I’m Kathy Mattea, for my family these words meant years of
watching my mother struggle. We witnessed the gradual
decline of her cognitive and physical abilities
and millions of Americans share our experience. As out population ages, we
are seeing the inevitable rise in the number of people
diagnosed with dementia. So what is dementia versus
normal aging and what’s the impact on individuals,
families and communities? How can you continue to live
fully even with that diagnosis? And how can we as a
community better support those living with dementia
and their care partners? Join me as we explore the
answers to these questions. – [Voiceover] My mother
was an amazing woman. She was one of the first
saleswomen for IBM. She was a teacher, she
was a college professor. She also did training and
development in hospitals. She had tons of hobbies ’cause she was blessed with a lot of talent. She could sow, she could knit,
she could make dollhouses, she could make dolls, costumes. She had an amazing sense of humor. (inspirational violin music) She was a very Irish woman who never ran away from adversity. I love this one, too. – [Voiceover] Rita
McCarthy began exhibiting signs of dementia in her early 80s, though her family didn’t
realize what it was. – She forgot things,
the thing that made her give up driving was she was
in the car with my daughter and she was fairly close to
our house and she got lost. So that was a big sign
and then the other sign was when she began to really hoard things. But it wasn’t anything that
was like, oh clearly there’s something very wrong with
you and we need to do things. And she mainly had really good days. (somber piano music) – [Voiceover] In 2009
after a serious infection left her hospitalized and delirious, McCarthy was diagnosed
with vascular dementia. – But at that point it was more like mild cognitive impairment. She still was able to drive, she had a computer, she had an iPod. She couldn’t necessarily
make them work without instruction and every day you
gave the same instruction. She still knew who
everybody was, she still was charming and had
repartee to the very end. – [Voiceover] Later that
year, McCarthy had to have her leg amputated and
was sent to a rehab facility. In the middle of the night, she woke up agitated and confused
after becoming overheated when her roommate raised
the heat to 90 degrees. – She rolled onto the floor and the nurse, I’m not saying anything
bad about the nurse, the nurse had 25 to 30 people
to take care of and was the only nurse on, gave
her a giant dose of Haldol, which is contraindicated
in people with dementia. But it’s effective. My mother didn’t try and get out of bed. My mother didn’t try and
get out of anywhere again. She pretty much didn’t
open her eyes for four or five days and then when
she did, she was confused. She didn’t know where she was. She was never my mother again. (somber piano music) I mean it was an entirely
different person. – We’re not building ramps
for people who live with dementia and in this case I’m
not talking about wheelchair ramps, I’m talking about
cognitive ramps, brain ramps. Whether you’re in your
home or whether you’re in a nursing home, we
take people who’s brains and experiences are
shifting and we put them in places based on our view of the world, our rhythms, our schedules,
our staffing models and we expect people with
a changing brain to fit. And if they can’t, we blame their dementia and we give them these
anti-psychotic medications. – I felt comfortable that the system understood how to care
for people with dementia. The system really, they
haven’t caught up yet. They’re not there. When all of this had
happened with her leg, at one point she looked
up at me and she said, “I don’t want to be a burden and I don’t “want to live and not have a life.” And I grabbed her hand and
I said, “Not on my watch.” And this happened on my watch. – This big issue right now
is families don’t even know what they’re facing until
they’re well into it and they’re being asked not only to care
for the person but create support structures and they
have no idea what’s involved. They misunderstand what the
government is gonna provide, what the resources out there are, what their alternatives and
options are gonna look like. And it’s devastating
because this is an expensive disease as far as money,
time, resources and yet there’s so little devoted to helping us get our heads around it in a timely way and there’s not much out there. – [Voiceover] There are
currently over 5,000,000 people living with Alzheimer’s
and other dementias, with another 8.5 million people providing unpaid care and support. If there are no medical breakthroughs in prevention or treatment,
the number of people afflicted with dementia
is expected to grow to nearly 14,000,000 by the year 2050. The need for paid and unpaid care partners will also rise astronomically. – As a society, this thing is changing us. It’s changing the very fabric
and the numbers are alarming. So if we don’t soon figure out how to take the one person who’s living with dementia and start to build a community around this person so that the family feels supported, the care partner feels
supported and we’re supporting one another, the numbers
are gonna devastate us. And we’re so scared of
this it’s like we’re avoiding this idea, we’re
gonna need to change. – [Voiceover] Understanding
dementia means understanding the most complex organ in
the human body, the brain. – The brain is a very dynamic organ. Develops over many, many years and then declines in some respects also over many, many years but not in a uniform fashion. – Some abilities actually
improve with age. So your ability to know information, your knowledge of the world, your wisdom, your vocabulary even
actually still improve all the way to your late 80s and 90s. What does seem to decline
is speed of processing and the ability to hold
information, online as it were, does seem to decline with normal aging. But is that pathological
or is that healthy? We’re not entirely sure
and new studies are beginning to change what we
thought was normal aging. – Dementia is a term that we use to describe a loss of cognitive function, usually memory and other thinking skills. And when they have declined to the point that it affects our daily function, then we call that dementia. Now Alzheimer’s disease
and dementia sometimes get used interchangeably
because they’re very close. It turns out that Alzheimer’s disease is one sub-type of dementia. – Dementia is incredibly different than all other chronic health
conditions because there’s all these different
forms of dementia. Each one progresses
differently and each individual experiences different
dementias in different ways and you can have more than one. – [Voiceover] Alzheimer’s disease accounts for 60 to 80 percent of all dementias but there are many different types. The next most common
include vascular dementia, Lewy Body dementia and
Fronto-Temporal dementia. Recent studies reveal many people have more than one type of dementia. The underlying cause of all types of dementia is damage to brain cells. This damage interferes with the ability of brain cells to
communicate with each other. When brain cells cannot
communicate normally, a person’s thinking, behavior
and feelings can be affected. The symptoms of each type
of dementia are directly related to damage happening
in specific brain areas. The temporal lobe controls
memory and language. The hippocampus, seated
within the temporal lobe, helps a person form new
memories and recall old ones. It is one of the first areas affected by Alzheimer’s disease, which is why memory loss is often one of the earliest symptoms. When language areas in the temporal lobe are affected by disease,
a person might have difficulty understanding conversations or will talk but not make any sense. The frontal lobe controls
executive functions such as thinking, planning and organizing. It also controls emotions and behaviors. People with frontal lobe
damage can have difficulty making decisions,
keeping track of plans or trouble doing more than
one thing at a time. Some people with frontal lobe damage undergo dramatic changes
in their personality. Often they will become
socially inappropriate, making rude comments or
they can become impulsive and make poor decisions
that are out-of-character. While others lose the ability to control their emotions and may
become easily angry. As the dementia progresses, more areas of the brain are affected
and symptoms increase. In the later stages of
disease, the brain damage causes physical
complications such as trouble swallowing food or problems
with being able to walk. When people start having these problems, they are at increased risk for falls, pneumonia and malnutrition
which eventually cause death. Paulan Gordon didn’t
realize she was having serious cognitive issues
until her daughter brought it to her attention. – One day my daughter
wrote down every time for a two-hour period I repeated myself or I went in a room and came back and didn’t know why I was in that room. And when she wrote all this
down on a piece of paper and I saw two sheets of paper
within the span of an hour, I started realizing maybe
there was a problem. – [Voiceover] After many
hours of testing with a psychiatrist, Gordon
received a diagnosis of mild to moderate dementia,
probably vascular type. She was 57 years old. Gordon is among the four percent of people diagnosed with dementia before age 65. The largest percentage develops dementia between 75 and 84 years old. By age 85 and older,
somewhere between 25 to 50 percent of people will
exhibit symptoms of dementia. – It is no respecter
of socioeconomic status or lifestyle or achievement. All of us can be affected by dementia. Aging of course is the primary risk factor and we used to kid around
when I teach students that the best way to prevent
dementia was to die young and that still is the case today. It is an age-associated illness, there’s no question about it. – [Voiceover] While age is
the primary risk factor, race and ethnicity play
an additional role. Nationwide, Hispanics
are one and a half times as likely as whites to have dementia. African Americans are twice as likely but they are much less
likely to have a diagnosis and when they do get a diagnosis, they are more likely than whites to be in the later stages of the disease. – Compared to white counterparts, Hispanics and African
Americans, it’s self-reported, make lower incomes and
have I guess less of a life satisfaction by
comparison and I think put together with a number of factors, poverty, disorganization in
the different communities, a healthy skepticism of health systems, all couple together for
African Americans and Hispanics to be disproportionately
affected by the disease. – Here’s some water. – [Voiceover] Despite the
millions of people currently living with dementia,
studies estimate that only 50 percent are ever formally
diagnosed by a physician. – To some extent I think there’s still the belief among physicians
and the lay public that this is just normal aging. That if you’re older, that
you’re getting confused, that that’s normal, right? I also think there’s
a therapeutic nihilism among some doctors in the sense that well, it’s degenerative, what’s the
point of making a diagnosis? There’s nothing you can do. And I think there’s a
lot of reluctance among many physicians to get
into more complicated brain diagnoses which are
admittedly hard to treat. – It’s difficult to find the time in a busy private practice. I did private practice
for several years and you constantly have a revolving
door of people coming in. And geriatrics in general
and caring for people living with cognitive
changes does take time. And if you’re going to do it effectively, you have got to push that schedule aside a little bit because there’s
no quick way through this. – We’ve never had enough geriatricians to take care of the geriatric population. That deficit is only growing because the baby boomers are now in the geriatric age group and people
are still living longer. We’re well behind where we need to be in finding enough providers
for that population. – It’s a pleasure, always good to see you. – [Voiceover] Finding a
specialist to diagnose and treat dementia can
also be a challenge. Nationwide there are fewer
geriatric psychiatrists and neurologists than can meet the current needs of those seeking care. A recent survey found
demand for neurologists exceeded supply by 11 percent in 2012. By 2025 that gap will
increase to 19 percent. After the initial shock of the diagnosis, Paulan Gordon had to deal with the implications of a long-term illness that would gradually change her abilities. – [Paulan] The first
thing of course is that I know that I could never work again. And there’s a double financial loss that I don’t think other people think about and it’s that the spouse usually has to stop working to take
care of the person. So there’s a big financial impact. There’s also a big loss of independence from not being able to
drive yourself around. If I want to get up and
go and get a milkshake down the street, I can’t
do it and it may seem silly but just in your
heart you know that you’re not able to do the things
you were able to do. – [Voiceover] Most of Gordon’s symptoms are not outwardly visible. She struggles with simple math, being able to retain information
she’s just read or heard and retrieving the right
word in conversations. – If I were out and about meeting someone, they would not know that I had dementia. And in fact the people I have
told that I have dementia, family members and so forth, they said “You can’t have dementia,
not you, are you sure?” And I said “I’m pretty sure.” The other thing that
happens is that everybody says “My mother does this
and my father does this “and I do this and do
you think it’s dementia?” People are very, very
much afraid of dementia. – [Voiceover] Research backs
up Gordon’s experience. A recent survey found that Americans fear Alzheimer’s more than cancer. Most feared being unable
to care for themselves or being a burden on others
as well as losing memories. – We value our memories and our cognitive functions very highly
and the thought of that changing or becoming
less acute than it is now is very scary to people I think. And I think the larger thing is just that all of our public
awareness really leans on stigma about how the person’s fading away, calling dementia the long goodbye. And that really actually exacerbates the fear rather than helps people to have a greater understanding of
the person’s experience. – [Voiceover] Gordon has felt the sting of that fear and stigma
within her own family. – People look at you as if you’re damaged. My mother had a really
tough reaction to it. She had this image of this
perfect daughter and she couldn’t accept that there
was anything wrong with me. She didn’t want to tell
her brother or sister, she didn’t want to tell family. She was in denial for up until
the day she died I think. – Being afraid of something
actually blocks us from better appreciating it and developing any kind of plan of
interaction because all we want to do is flight
from it or fight with it, and neither of those things
are gonna take us to a plan. So we’ve gotta find language and an openness to start discussions. – [Paulan] The wrong
assumption that people make about a person with
dementia is that they’re automatically in a stage
they have no mind left and they’re ready to go. And I think that people don’t realize that there’s a long span of
time where you’re not in that state, you’re still
functioning pretty well. There is a good quality
of life with dementia, I think you have to go out and find it. The doctors are not
gonna help you find it. – The physician is often the point person when it comes to the
diagnosis and the initial information sharing and
support but the reality of medical practice is such
that that person is not going to be the primary point
person for ongoing support. There really needs to be a lot of personal and social
support in the community. – [Voiceover] Frustrated by the lack of information coming from
her doctor and finding no local support groups for
those living with dementia, Gordon turned to her computer. She soon discovered online support groups, Facebook groups and organizations run by and for those living with dementia. – My family and my grandchildren are going to Disney World, end of this month. I would love to go along but I know I wouldn’t handle the crowds well. I wouldn’t handle all the lights and sounds and bells and whistles. – [Paulan] When I stumbled
upon these people who were living well with dementia,
I was very happy. I mean it was a very, very happy moment because I realized it
wasn’t all doom and gloom. – I’ll enjoy it from a
different point of view. – [Paulan] I wasn’t gonna
be dead or an invalid in six months and it
gave me a lot of hope. – [Voiceover] Gordon now
spends much of her time participating in webinars,
online chats or responding to questions on Facebook
as well as mentoring people who are recently diagnosed
with vascular dementia. – For me the school and my job, my career, that was my whole life
and then when you suddenly take that away, it’s a
very desperate feeling, a lonely feeling and these support groups have given me back a sense of purpose. I can help other people and by doing that, it’s very empowering. – [P.K.] You will be asked
to perform five simple tasks. You can find a list of
these tasks in the room. – [Voiceover] P.K. Beville
is trying to help families and caregivers see their
loved ones with new insights. – [P.K.] Put the glasses on. – [Voiceover] By taking
away some of their vision and sending them through
a unique experience. – I developed the Virtual Dementia Tour as a way to simulate what it might be like to have dementia so that we can learn how to serve those with dementia better. – [Voiceover] Beville carefully researched how to simulate the symptoms and behaviors that result from a brain
damaged by dementia. She developed components
for participants to wear that limit fine motor
skills, induce discomfort and balance problems and
interfere with peripheral vision. – The final piece de
resistance is when we put the headphones on and they’re
noise-canceling headphones. I developed a confusion tape. – Find the pants and put the pants– – Now listen, I’m not hearin’
you with all this jabber. – And now this normal person
is dealing with all of these things together and has
to negotiate the environment. Usually the light comes on about
five minutes into the tour. A normal person begins behaving exactly like a person who has
the disease, exactly. And then after the tour is
when the real work begins. So the startle responses specifically were geared so that you could
feel what it feels like to live in a world where
you’re not real sure when that next sound’s
gonna come from because your brain doesn’t tell
you it’s not important. – [Voiceover] The virtual
dementia tour ends with a debrief where
participants can learn how the experience compares to
someone living with dementia and share their own reactions. – I was completely shocked. I felt like I couldn’t function in there. I really just wanted… Wanted to sit down and cry. – I had no idea of the physical changes that they experience so
gradually and the sensory. For a minute I was like Susan, I just wanted to sit down and cry. The compassion thing of
going, I had no idea. – The most powerful thing that we get are the people, no matter how
they come out of the tour, to have that basic
understanding that these things actually are going on with a person with dementia and we have to help. – If I don’t take the time to figure out what you’re experiencing in the world, I can’t be very effective at guiding and directing you into a safer place, into a situation that I think
will better meet your needs. – [Voiceover] When Joyce Wisby’s husband was diagnosed with dementia in 2004, she found good use for her
academic research skills. – I dedicated 10 years of my life to learn everything I could about caring for him and about Alzheimer’s and
I went to every conference that was talking about
Alzheimer’s or dementia. I went to a caregiver’s conference. I just wanted us to
have the best life that we could have for as
long as we had together. – [Voiceover] For the
first time in their long marriage, Wisby could
not talk with her husband about an issue that would
deeply affect both of them. – Jim would sit there
and say, “There’s nothing “wrong with me, there’s
nothing wrong with me.” That frustrated me probably
more than anything else, the fact that he, I couldn’t
talk to him about this because he wouldn’t,
he wouldn’t accept it. Even until just before
he passed away he never, ever admitted that he had
dementia of Alzheimer’s type. – [Voiceover] An estimated
42 percent of those with Alzheimer’s do not
recognize they have the disease. For care partners like Joyce Wisby, this means working alone to create a support system and plan for the future. But for six years after the diagnosis, the Wisbys were able to
lead a mostly normal life, fulfilling their dreams of
traveling during retirement. In 2011, they pulled their motor home into a Virginia bluegrass festival. – We were sitting outside
just kinda watching the people and I went in to
fix dinner and I called him to come in to eat dinner
and he ran in the motor home and was so angry and he
started beating me up. And he threw our dog and
he would not settle down. – [Voiceover] Joyce
Wisby endured two hours of her husband’s rage, trying her best to calm him before calling the police. – That was when I knew that what we’d experienced was now over. From that time on, it was like walking on eggshells every day. – [Voiceover] Caring for
someone with dementia takes an emotional and
physical toll to the tune of 10.2 billion dollars
in additional healthcare costs for care partners in 2015. Nearly 60 percent of dementia caregivers rate their emotional
stress as high or very high and 40 percent suffer from depression. – This disease wears people out. As a person’s dementia is progressing, I’m gonna be providing
more support for them and it moves from just
trying to convince her to put her clothes on
or change her clothes or to take a shower to actually physically assisting her to do that thing. And as I’m doing that, I’m having to let go of the relationship we used to have in order to deal with
the current relationship. But so is she and
depending on her tolerance and her ability and my skill, that can be a really painful process for both of us. – It’s a beautiful coat.
– [Joyce] It is beautiful. – [Voiceover] The Wisby’s journey spanned 10 years before Jim died and Joyce found herself learning about
another process, grieving. – I was happy that his
journey was over because the last 10 months were
very, very difficult. I felt relief because I was
finally free as a caregiver. Then it started setting in, my sadness that you
know, I didn’t have Jim. – [Voiceover] Wisby now channels her energy into helping others
through the journey. – Well welcome, we’re so happy that you’re all here tonight and– – [Voiceover] She offers her 10 years of hard-won knowledge of dementia care to the members of her own support group. – We’ll go around and you can just tell us what your journey is. I find that people are really overwhelmed in many ways about what is happening and many times they’re still working and they don’t have the time to put in to the research that I did. I mean I dedicated my life to this. People don’t always have that knowledge. Also they’re not ready
to accept it either. They ask a question, I give an
answer and they say “But…” And then you know they’re just not ready and they’re not there yet. – Put your hand around your open eye and I want you to look down and see
how close this floor looks. Doesn’t that kinda make you dizzy? – [Voiceover] Debbie Miller often gets the panicked calls when families realize they need help and have
no idea what to do. She opened a home care
agency in 2008 but quickly realized that professional
caregivers often did not receive any specialized
training in dementia care. – We’ll have people in our training class that have had 30 years
of experience and have never had any training, it’s amazing. Today for example, a lady
in there with 17 years of experience and didn’t
know some of these skills. I mean she was, really
had some ah-hah moments like wow I wish, she even said that to me. “I wish I knew this 15 years ago.” Why do you think we would
want the client on top? – Because it let’s ’em know
that they are in charge. – Exactly, exactly. – [Voiceover] Half of all
states including Tennessee have no regulations
requiring dementia training in the Certified Nurses Aid curriculum. These states follow the
minimum Federal mandates. Nationwide only six states require a specific number of hours
on dementia training. After watching her staff struggle to care for their clients, Miller educated herself and developed a training
program for the entire staff. – Knowledge leads to better care and when they know what to expect and how to respond to that when they see it, it makes for so much smoother and a much more comfortable situation
for everyone involved. – [Voiceover] Miller’s business is part of the large and growing
industry providing long-term care services to those
living with dementia. A recent study estimated
109,000,000,000 dollars is spent annually for dementia care in nursing homes and assisted living centers or home-based professional caregivers. By the year 2040 as the population ages, that number could rise to
259,000,000,000 dollars. – We don’t talk about what this disease looks like from its beginning to its end and how many people are
gonna make the entire journey and what the price tag of that is. I mean that’s one of
the crazy parts is we’re not dealing with this as
a country or as a state or anybody else dealing
with the reality of the financial implications
of this disease. There is no way to
deliver the amount of care you’re gonna need unless
there’s a huge price tag on it. – Dementia is the most
costly condition in America. More costly than cancer and heart disease and the vast majority of those costs are attributable to long-term
care, not healthcare and that means the
assistance with activities of daily living like eating, bathing, dressing and taking medications. Medicare does not cover long-term care except under very special
circumstances and so families usually bear the
costs of dementia care. – [Voiceover] People living with dementia incur an average of
10,500 dollars per year in out-of-pocket expenses for healthcare and long-term care, even with support from other payers such as Medicare or Medicaid. People of similar age without dementia incur only about 2,500 dollars per year in out-of-pocket expenses. A recent study found that on average, families caring for someone with dementia in the last five years of life spent about 32 percent of
their household wealth. These expenses hit African American families particularly hard. They spent nearly 84 percent of their household wealth on care expenses. – The biggest strain is
on middle class families. They are not wealthy enough to pay for their own long-term care in nursing homes and assisted living facilities
and for home healthcare. And they’re not low enough income to qualify for Medicaid either. With state Medicaid budgets under strain, there are still a lot of
problems with accessing the services even if you
are eligible for Medicaid. So you might find yourself on a waiting list to receive those waiver programs. – [Voiceover] The majority of people with dementia live at home which means spouses or their children carry the largest burden of the care responsibilities. 62 percent of caregivers are women, most often wives and daughters and 34 percent are over the age of 65. But many family caregivers also don’t have any training in how to best
care for their loved one. – [Regina] You can’t help but see the educational void out there. Families are really overwhelmed. They don’t understand what’s going on. It’s scary, it’s stressful. Their heart is in the right
place, they want to do the best for their loved one
but just don’t have the skills. – So tonight we’re going to get a little glimpse of the brain and why we’re seeing some of the behaviors that we’re seeing. We’re gonna talk about some techniques. – [Voiceover] Miller now spends anywhere from a third to half her
time offering dementia care education to churches, organizations, healthcare facilities and senior centers. – It’s really important for family caregivers to be educated. First of all, education
equals better care. When they get it, it changes everything. It absolutely changes everything and I’ve had so many people tell
me that, “Oh my gosh. “I am so, I get it now.” And they can be more
empathetic and more patient. If you expect this, you’ll
know how to react to it. – The reliance on family
caregiving is unsustainable. The ratio of caregivers
available to provide care to somebody 80 years and
older who’s most likely to need long-term care
is seven-to-one and that ratio is expected to drop to less than three-to-one by the year 2050. This places even more burden on the formal or paid long term services
and support system. Unfortunately that system
is already strained in terms of the number
of formal care workers who are available to provide that care. The country really needs to think about better ways and places in which to provide care for people who live with dementia. – All right, Lenore, straighten up sister. – [Voiceover] In a small
city north of Nashville, Tennessee, Mary Anne
Olgesby-Sutherly leveraged her small church’s space
and developed a three- day-a-week activity-based respite program to serve the needs of a
more rural population. – Here I’ve noticed there’s no resources to find out how you could
get help for dementia. There just isn’t any, you just
have to stumble upon them. – There are a number of challenges that rural areas face compared
to metropolitan areas. The difficulty with getting
grants and different programs out to rural
areas a lot of the times has to do with the fact
that the people with the big money are in
your metropolitan areas. So the money that’s needed
for respite programs and different things to
prevent caregiver burnout or caregiver stress are
typically not available in rural areas and when it is,
it’s usually pretty limited. – [Voiceover] With so few
options in their area, the Veranda’s clients have come
to rely on Olgesby-Sutherly beyond just the 12 hours
of respite offered. – The most important thing needed in rural communities is knowledge. Knowledge about the disease, knowledge of where to go to get that knowledge. The Veranda’s important to this community because we give them answers. – [Voiceover] With the help
of dedicated volunteers and free space from
the church, the Veranda can also offer a sliding scale fee. Melody Vaudrey brought her sister Peggy to the Veranda after
failing to find any other options that were affordable
on Peggy’s small income. – She comes three days
a week and she loves it. She feels like she’s got a
job, she’s helping people. It’s not just for me, it’s great for me but it’s for her brain,
she needs to socialize. She needs to be with other people. (clapping) Since I’ve started caring for Peggy, it’s just hard, it’s
like being a grandmother to a little baby that’s
living with you because I’m constantly having to care for Peggy. Look, let’s put it on right. She can still feed herself
and she’s using the bathroom. All those things are gonna happen though, they say they are. They’re tellin’ me I’m gonna
have to change diapers. That’s not what I plan on doing. I’m just telling you, I don’t
plan on changing diapers. – [Voiceover] But Vaudrey
does not yet have a plan to pay for that labor-intensive
and expensive care. – There’s not a lot of
resources to help you, especially when you don’t have
a lot of money and I don’t. I could never ask my
husband, should we pitch in? I mean I feel like I’m
doing the best job I can do caring for her, I would
never want him to feel like financially we have
to take care of her also. – [Voiceover] Vaudrey joins
many care contributors in facing the dilemma
of jeopardizing her own financial security to help
a loved one with dementia. A recent survey found
that 43 percent of care contributors had to cut
back on their own savings. 20 percent spent money
from their own retirement savings and 15 percent borrowed money. As long as her sister is
able to attend the Veranda, Vaudrey is grateful for the service. – The best part for me is just… I hate to say this but
being away from Peggy. I cannot do it every day all
day long, it’s just too much. The more help I get,
the saner I’m gonna be and the better I’m gonna
be at caretaking for Peggy. – Churches are gonna have to be on the forefront of dementia care. If you’re in some of
my families’ positions, four hours is a lifetime. So even if it’s just one
day a week, any church could have a program one day
a week for their seniors. With the cost of caregiving,
if the church doesn’t get on board, it’s gonna
be bad because they should. They have plenty of space to do it, million-dollar buildings
sitting vacant all week long. – [Voiceover] As the need and
demand for services increase, some organizations are finding they can have more of an impact by working across the boundaries of their
individual missions. In Knoxville, Tennessee,
three groups collaborated to better support families and
expand the resources available. At the University of
Tennessee Medical Center, the Cole Neuroscience Clinic
teamed up with a local nonprofit to better meet
the needs of their patients. Alzheimer’s Tennessee
now provides a licensed social worker who offers families help while sitting in the
corner of the waiting room. She coordinates her
efforts with the Clinic’s social worker and can provide
support beyond office hours. – Hi there, how you doin’? – When this program was
started it was because of a need that we saw
in terms of translating diagnoses into real life. Because the implication
that you have dementia is so broad and it doesn’t
give the family any sort of a support network
as to what do I do next? – They often get this
diagnosis and there’s, they don’t even know what to ask. So it’s a week or two
later when they’ve left the doctor’s office and
they’re like “What do we do?” So it gives them an opportunity
to use us as a resource on top of what Cole can do for them. Just support, someone to
talk to, finding resources. – I feel like the
collaboration is successful because we have so many patients that are networked into the Alzheimer’s Tennessee support groups and then vice versa. I think it’s an idea that
there is a partnership and families feel like everyone’s
working together for us. – [Voiceover] Across town, Mount Calvary Baptist Church hosts another
collaborative project. Howard Circle of Friends Adult Day Care. Alzheimer’s Tennessee
administers the program but uses space donated by the church. – When we started the program, there were some things that
they had in place already and there were some
opportunities that we had that they could take advantage
of without reinventing the wheel and so we decided to partner. – They felt like it was a part of their mission and their vision
for the community. They were in the middle of
remodeling of their church and so the pastor and
the deacons and the board decided that they would
incorporate whatever changes were needed for
the daycare at that time. And so they were ready for us
and I mean they embraced it. – [Leroy] We saw it as
an opportunity to present people with a way of maintaining dignity and having a great quality of life. – [Voiceover] The collaboration among organizations worked for Vicki Waters. She found out about the
Howard Circle of Friends Day Care services while taking
her mother to the doctor. Alzheimer’s Tennessee also connected her to resources to make it affordable. – Bringing her here, I get some rest and get caught up in the housework and bills and everything I need to do. She likes comin’ but at first she didn’t because I only brought her on certain days to Howard because I didn’t want her to feel like we was abandoning her. So we just had to ease her into it, tell her we goin’ to
church instead of daycare. – [Leroy] A lot of
people say that if their loved ones were not here, they would more than likely be in a nursing home. Point blank some would say, “I just can’t watch them
all day and all night.” – It takes a collaboration,
it took the church, it took Alzheimer’s Tennessee, it took some private funding, it took the Medicaid
waiver, Joyce’s program. All of that works within that. Referrals from pastors,
referrals from community members. It’s a collaboration and we were determined to make it work. – I think we need to develop
models for caregiving and those models need to work
at multiple levels, right? From home caregiving
to community caregiving and institutional caregiving. We’re not entirely clear that there’s any one answer to that. We need to learn from each
other about best practices. – [Voiceover] Tucked into a leafy suburban campus in Nashville,
Tennessee, an experiment in the best practices for
dementia care is taking root. 11 years in the making,
Abe’s Garden relied on leading experts across
disciplines to create a care model that would by
design continually evolve. – The vision for Abe’s
Garden is to create an environment where we can
provide really exceptional care. Where we bring together the best practices that we can find. – There have been very
few randomized controlled intervention studies to
determine best practices in dementia care, so there’s
still a tremendous amount that we don’t know about
how to do this the best way. What’s unique about Abe’s
Garden is their mission to continuously evaluate their
programs in a scientifically defensible way and also
to develop and evaluate new, innovative approaches
to dementia care. – [Voiceover] Abe’s Garden was born from the Shmerling family’s struggle to find good care for their father, Abe. In the 11 years he lived
with Alzheimer’s disease, his family tried every
possible care option for him. – One of the things
that we noticed is every time we changed the
care or the environment, we’d see a decline in
how he was functioning. We wanted to find a
place where he could stay and age and be able to
go through the changes without having an upheaval in his life. And that set us on a course,
especially my brother Michael, to identify what is it
we wished we did have? And he’s got the vision but he also knows how to pull partners
together to make this happen. – [Voiceover] One of
the first collaborators to sign on was Vanderbilt University, providing access to
physicians, dietitians, social workers and researchers. Anyone who could help define what best care practices might include. – That was part of the
initial planning process. Over the years we’ve talked
to other communities, we had charrettes with national leaders to look at our design and give feedback. We were able to show them
what we were thinking about and they were able
to look at it and say, “You might want to
consider these changes.” And a lot of what they shared with us helped shape what we ultimately see when you look at Abe’s Garden now. – [Voiceover] Abe’s Garden also designed its evaluation systems
with an eye toward research by Vanderbilt University as
well as other institutions. – Abe’s Garden is really committed to serving as a national
model for dementia care and part of that mission involves being actively engaged in research. The standardized assessments
that they’re doing with the residents and the
other information systems that they are putting in
place really sets the stage for investigators like me to do much more rigorous dementia care evaluation. – [Voiceover] The most visible result of the long design process is
the physical environment. – So the physical environment can be considered a treatment for dementia because if you can create
an environment where those disabilities, of
not being able to find your way for example, do
not become a handicap, it can help you function better. – [Voiceover] The facility is divided into three houses, each with
different colors, flooring and decorations to help cue
residents to where they are. The houses all open to a central courtyard that allows easy access to the outdoors as well as an abundance of natural light. – [Judy] The courtyard
is very important to us. There’s raised flower
gardens and flowerbeds where they can plant
vegetables and herbs and see that cycle of life happening
in their own garden. – One of the problems with dementia is that you lose a sense of time. If you’re in a dark room, you don’t know how much time has passed so you don’t know whether it’s night or day
and it can be confusing. If you have the sun to
tell you that it’s daytime, if you have the cold
to tell you it’s winter and the warmth to tell you it’s summer, you then know the seasons and that overcomes one of those disabilities. – [Voiceover] The open
floor plan of the main living areas encourages
residents to join in community activities and limit time alone in their furnished bedroom suites. – Every piece was really
though out to meet the needs of folks that maybe need to be more organized with
their access to clothing. They might need light that shows them the way to the bathroom at night, a bed that’s designed so that they don’t fall out but assists them in getting up. We want to encourage independence but also to provide support. – [Voiceover] To meet
the emotional needs of its residents, Abe’s Garden
adopted the Hearthstone Institute’s model of
programming and engagement. It aims to prevent the
challenging behaviors often seen in those living with dementia. – What they brought to
us was a way of looking at any challenging
behavior as an unmet need. There’s a reason for it and if we can figure out, we can have an impact on it. – [John] The antidote to
a lot of these symptoms of agitation, anxiety, aggression
and apathy is engagement. So what can we do to engage people and thus get rid of the
symptoms of dementia? And that is engage them
in something that we know their brain can accept and
appreciate, and that’s the arts. (clapping, singing) Whether it be music,
whether it be visual art. Whether it be dance, all of those are ways to engage people and that’s why we’ll have it here at Abe’s Garden as well. – [Voiceover] All staff, not just direct care workers participate
in specialized training, including maintenance personnel
and dining services crew. Trainers also work alongside
Abe’s Garden employees to ensure they are
learning the techniques. To evaluate what is working
and what needs modification, Abe’s Garden created a
unique position called the Continuous Quality
Improvement Coordinator. – There’s constantly gonna be change and that’s probably at
the heart of the model. We’re not going to say, “This is the program, hope you like it.” Our job is to identify
best practices and if we discover something’s
not a best practice, then it’s on us to change it. – [Voiceover] Joanne Aron
moved into Abe’s Garden after a traumatic year of
multiple falls and surgery that forced her to
leave independent living for a long-term care facility where she spent most of her time in her room. – After 30 or 60 days, she was starting to get
depressed being in that room and asked us is there something out there for her that would be better? And so when we searched
around we found Abe’s, listened to the ideas of
community and engagement and realized that this was a
step up from where she was. – [Voiceover] Aron’s
medical issues and need for pain medicine contributed
to a significant decline in her functioning before
she arrived at Abe’s Garden. – She was having trouble
finding the I in bingo. She was having trouble in that square seeing that one and three was 13. What we’re seeing is the engagement is actually refreshing
her cognitive ability. Just last week I was in watching her speak with her book club
and reading out loud. So community and engagement are really at the cornerstone of what’s
working for my mother. – [Judy] When we envisioned
Abe’s Garden and realizing that we would have 42 families at a time, we knew we were not gonna make a big dent in this illness in the local community. Our broader picture for Abe’s Garden is to identify what are the best practices, have evidence behind them
and to disseminate that. To see other communities picking up some or all of what we’re doing. And then if we can move
it into the communities and help families that are
dealing with this at home, and to be able to provide
support to families who won’t be able to afford Abe’s Garden but need some kind of help. – I didn’t do this in the operating room. (anxious piano music) – [Sandra] The most important
element of the Abe’s Garden mission is to share what
they’ve learned with others. There are so many more
people who need this type of care than what any one
place is able to provide. If we can improve our
knowledge of what it means to provide better dementia
care regardless of where people live, then we will
have done a remarkable thing. – The first thing we need
to do to improve the life of people with dementia
is to educate the public. That’s the number one thing. I want them to understand that I have specific cognitive difficulties but I have a whole lot of cognitive abilities left. – This isn’t hopeless, it’s just another way to
live life until you die and living well is really
what it’s all about. I can have a good quality of life if you know how to have life with me and you feel comfortable and confident or know who to call on and
how to get the support you need to help you
through the tough places. – [Paul] We are a youth-oriented culture. We’re about to become an
aging-oriented culture because there will be more
older people than there will be younger people
and we need to own that. And part of the community’s responsibility is to say Alzheimer’s disease and dementia and cognitive aging is part of all of us and we need to help each other with that. – You wanna feel the land here? – There are not going to be
the governmental programs. There are not gonna be the housing, not everyone can afford home care or assisted living facilities. So this is going to
take a community to help the number of people that
we’re gonna be seeing. – We need to retool
our communities through community education so that police forces and store owners and bus
drivers and everybody has a greater understanding
of how to support people so that people
can live successfully in the community with the diagnosis. – You may have dementia, but you still deserve
quality, quality care and I think we owe that to them, to ourselves and to God. – And people with dementia
still have a heart. You just have to get to it and the more you’re around ’em, the more you love ’em. They’ve taught me more about love than I’ve ever known from anyone. – I know from my own experience that living with or caring for someone with dementia can be excruciating at times. But in the middle of all that pain, there are unexpected gifts. Like the afternoon I sang with my mother. She was tone-deaf and would never sing in front of anyone for
her whole life and that day I saw a joy in her
that I never saw before. It gave me a glimpse into
the innocence in all of us and that for me was the
gift of Alzheimer’s. While no one welcomes a
diagnosis of dementia, more and more of us will
have to face this reality. We can’t afford to ignore the future but to do that, we must
face our fears and find better ways to support those
living with the disease. Thank you for joining me. To learn more about this program go to (anxious piano music) – [Voiceover] Major
funding for NPT Reports Aging Matters is provided
by Cigna HealthSpring, lead sponsor of NPT Reports Aging Matters. The West End Home Foundation, support in the care of seniors through many organizations in Middle Tennessee. The HCA Foundation on
behalf of Tri-Star Health. The Jeanette Travis Foundation, dedicated to improving
the health and well-being of the Middle Tennessee community. Additional funding provided
by the Community Foundation of Middle Tennessee and by
members of NPT, thank you. (upbeat piano jingle)

30 thoughts on “Living with Alzheimer’s and Dementia | Aging Matters | NPT”

  1. yes you are blaming the nurse if she gave the Haldol it was ordered by the doctor and we do give it to demented behavior patients you just can't face reality and got to find someone to blame those are same statements I've been hearing for 30 years out of family's mouth I'm done watching this now

  2. Dementia is an end time plague. God is warning us to repent! Also seening tons of autism. And cancer is spreading like wildfire! Jesus is the only way! 😔 So sad to see sick loved ones.
    <<I apologize because I failed to mention in this comment that not all who get sick are sick because of sin, sometimes that's not the case:
    JOHN 9:3
    “Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.” 

    But sometimes sin is the reason for sickness:
    JOHN 5:14
    “Afterward Jesus findeth him in the temple, and said unto him, Behold, thou art made whole: sin no more, lest a worse thing come unto thee.”

  3. my mother passed away march 2017 from alzheimers disease she'd had for over 12 yrs. its simple heartbreaking what it does to the individual & those among them

  4. Once being a dementia nurse it’s truly heartbreaking on both care givers and families, it’s a disease that slowly takes your loved ones right in front of you, it’s a disease that slowly takes the life of the person drip by drip, i had to give up care because it kept breaking my heart every time a service user died it felt like family it was painful

  5. This film angers me to no end. The twisted state of the American healthcare system as a whole disgusts me. We as wealthy country have absolutely no moral compass, and only focus on lining the pockets of politicians and the wealthy. I am seriously considering moving to Oregon where assisted suicide is perfectly legal because nobody in this government cares enough to make real change in the dire situation of healthcare. The people in the Netherlands have actual communities that function just like normal society but only for people who have dementia to maintain the most normal, dignified life as possible for these people. It was the most beautiful documentary of all on this subject broadcast by CNN…this country makes me sick.

  6. It truly is mind blowing the state of America's health care system . If you choose to look after your family member yourself from home does the government give you any help financially. I live in Australia and my father looks after my 86 year old grandmother full time our heath care system financially helps my father in a multitude of ways it works out to be about $3500 a month plus all medications no matter the over the counter price is $6.40

  7. The most populist people in the world and not a single one in this video. It is not a race problem because it effects Hispanics and Blacks along with Whites is the most unscientific statement of this entire video if Asians are not factored into the equation. Lets tug at people's heart strings and use a million band aids rather then finding a solution. Not to be a cynic but politics, public policies and pure stupidity has stifled medical and scientific developments for decades.

  8. Quite depressing, usually this disease is genetically inherited by family. So if your mother, father, or even grandparents had it, you most likely will get it as well. it's upsetting but this disease shows early diagnoses without you even knowing it. This is truly a horrible disease that is extremely hard to cure.

  9. At 46 my heart enlarged and shot a clot to my brain killing the left side leaving me paralyzed on the right side its giving me Parkinson's disease and Vascular Dementia I'm 53 years old now have to use my G.P.S. to get around but I live in the country nothing but hill & mountain I woke up not knowing where I was sat at the end of the bed lost then it all started coming back to me I forgot my Niece & Didn't know who she was I live by myself it's scary you just take it Day by Day

  10. The Australian Government solution is to cull dementia patients. Once your labelled with Alzheimers your as good as dead. There are no services for people with dementia .

    The governement is just an information service = they take no responsibility for anything.

    The hospital geriatric doctors ( killer) do the culling for the Australian government ( spinless cowards) They won't help dementia patients with anything. They dont even feed them – their too expensive – "their taking up valuable bed space", "this is not important case"

    You have to eat your own bed sheets as the doctors couldnt be fucked.

    They even fabricate evidence to get you killed – telling bald faced lies about to " legally"put you on the "liverpool care plan" – starve you to death – It makes the Nazis gas chambers look like child's play.

    They get away with it because they they make the rules and hide the evidence

    There is no human rights in this country

    The wont even spend money on a proper diagnosis – too bad if you've collapsed from a hematoma on the brain from getting haldol 'ed and getting bashed in your nursing home.

    The doctors just thought it was just a progression of the disease – one day you can walk and the next day you cant and they couldnt be fucked checking anythings wrongs. youve "just got an attitude problem and decided that you dont like walking anymore" = It easier for them to kill u. They wont even give you a CT brain scan after youve collapsed – they give it to you instead when its too late. Theyre plan to kill you worked a treat. They cover the whole thing up with the blessing of the Australian Government.

    The saddest thing about the disease is the government and communities response the care. Its all a business – care comes last.

    Australia looks much worse than the USA

  11. Gosh my mom just passed
    10-24-18 at 64 unexpected and it’s been very hard. I could not imagine what this would be like? Sorry for everyone going thru this🙏

  12. My mom was diagnosed with early onset dementia in her 60’s she is now 74. She moved in with me and my family because a home nurse said she can’t live alone anymore. I was her caregiver for 3 hours everyday for the last 10 yrs because she was also disabled from a car accident in her late 40’s. Once she moved in with me the state cut my hours to 1 hour and 15 mins a day. It’s a joke. My mom is below the poverty line so it’s hard. I have to do everything for her because on top of her not knowing how to do her finances, cooking and working the simplest things she lives with chronic daily never ending pain from nerve damage in her lower back that affects her legs and feet. She has fibromyalgia and diverticulitis. We live in a small town and her doctor is clueless with how to help her, plus the doctor has her hands tied by the DEA and can’t give her even a lower dose hyrocodon. My mom’s daily quality of life is horrible. I get no help. But I have my mom’s back because she was the best mom who was smart, hard working and so beautiful. This video is me. I get no help but worse my mom gets no help.

  13. I spent many years working with elderly in nursing homes and senior living . But back then you either had your mind but we needed a nice place to live do you have stuff to help you if you need it or not. Or on the other side they called and said it was being Senile. So I feel like they’ve just given it new names and with each group there’s a difference in each part of being diagnosed. I learned so much in those years. I totally enjoyed it. It was sad when family members would come in and get upset or not understand why their parent is saying. Things that they would never say, or cursing, hitting, wondering off and not remembering their children or names when they visited their parent . But I have to say to those families who had to place their parents were always involved in their parents lives. I admire that. Caregiving is very difficult but satisfying.If this happens to me all I’ve ever wanted was quality not so much quantity. But if you can get both, that’s a huge blessing. And that I hope I would be in a place like Abel.

  14. s This is a wonderful program. I learned new things. I love the Abe’s Garden. And the one at the Calvary Church.

  15. Very informative love the idea of utilizing empty church facilities for respite day care. Abe’s Garden wonderful concept along with continuing research on best practices.

  16. These services like the verandah are fantastic, I live in Australia and take some of these services for granted,how lucky I am for the Medicare system here, I just wished that other countries were as lucky 💕

  17. Thank you for this video.i wish that I had found it,back when i was taking care of my mother. I will pass it on to my husbands
    s family now that my mother in law now has been diagnosed with dementia.

  18. Dementia because of Autoimmune Encephalitis? My wife has dementia from AE at 64. I am the caregiver and I am 70 and she is 66 now. My health in itself is not stellar. Money matters keeps me sleepless many a nights. The most important thing is to me my wife is not the person I have known for the last over 25 years. Very sad it is.

  19. I am blessed. My loved one with dementia is a retired Veteran. That served in Vietnam. Due to his service connected disabilities, he was admitted into a State Veterans Home. It is covered at 100%. Unlike Medicaid, he got to keep his Social Security, retirement and VA compensation. The State want be putting a lien against his estate, when he passes away.

    If your loved one is a Veteran that served during war time. I encourage you to collect their service records and file a claim at your local VA office. In doing so, you must apply for long-term care. To get your Veteran on the waiting list for facilitative care. As you await the claims process to be approved. A Veteran only qualifies for VA compensation if their disability is service connected. You may be surprised what health conditions are already pre-approved as service connected disabilities related to service. VA Reprensatives can help you navigate the process.

    The standard of care is much better than the average run of the mill nursing homes. My loved one is well taken care of.

  20. Why does everything in us defined by race. Everyone gets old. You can judge a society by how they treat their young women & the elderly 🤔

  21. Well presented, informative and helpful programme. The longer we live the more chance we have of developing dementia, which can affect anyone. More help and provisions must be made available to help those poor souls who develop this horrible disease.

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