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

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- [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 wnpt.org/agingmatters. (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)
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Channel: NPT Reports
Views: 424,446
Rating: undefined out of 5
Keywords: npt, nashville public television, alzheimer's, dementia, Aging Matters, npt reports, aging matters
Id: q2tpIDKQ9JU
Channel Id: undefined
Length: 57min 37sec (3457 seconds)
Published: Fri Jul 01 2016
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