Caring for nursing home residents with dementia

Schenk: Hello out there and welcome to episode 72 of the Nursing Home Abuse Podcast. My name is Rob Schenk.

Smith: And I’m Schenk Firm.

Schenk: We are trial lawyers focusing in the areas of nursing home abuse and neglect in the state of Georgia. We are your co-host for this episode.

A very special and interesting topic for today. We have a very interesting guest coming to us all the way from Australia for a necessary topic for what we do. Will, who do we have on today?

Smith: Well, today’s topic is going to be about Dementia and Alzheimer’s. We have Kate Swafford, who is the Co-Founder, Chair, and CEO of Dementia Alliance International. Kate has been the recipient of many awards for her work in Dementia and Disability rights, including being named the 2017 South Australia Australian of the Year. Kate is the only Australian to be a member of the World Dementia Council, a board member of Alzheimer’s Disease International, and she is the Chair, CEO, and Co-Founder of Dementia Alliance International, a global advocacy group for people living with dementia. She is also, the first person living with a diagnosis of dementia herself, to be invited as the keynote speaker at the World Health Organization at the first Ministerial Conference on Dementia in March of 2015, where she demanded human rights, access to the convention on the rights of persons with disabilities for all people with dementia, and a balance in research between care and cure on the global stage. She is also a retired Chef, having run her own hospitality business for ten years, and before that, worked as a nurse in Dementia and aged care, and then she operated mini theaters on the other side of the world. So, we are very happy to have this special guest with us today, Ms. Kate Swafford.

Schenk: Welcome to the show, Kate.

Kate: Thanks for having me.

Schenk: Now Kate, as I mentioned before we went to air, a lot of our audience consists of family members, loved ones, of residents, who are newly diagnosed with Alzheimer’s or dementia and they’re going into a skilled nursing facility or a nursing home. You being–With your background, and your experience, and your education, can you just, from a broad stand point–What is Alzheimer’s? What is dementia? What’s the difference between them? What are some of the symptoms?

Kate: Well, I think one of the confusions globally is that people differentiate Alzheimer’s and dementia as if they’re two different diseases. In fact, dementia, the word itself, is simply an umbrella term for a group of diseases known as dementia of which Alzheimer’s Disease is one of those types of dementia that comes in under the umbrella term. The easy way that I find for men to understand the term, if I asked you–If you’d told me you bought a car and I asked you what sort of car you might tell me and say Benz, or I don’t know what the cars are in America, but we’ll stick with Mercedes, I’m sure you’ve got them in America.

Smith: Absolutely.

Kate: I would then say, what type of Mercedes Benz? You know, for women–To make it easy for women, who may be not so interested in cars, if someone asks me to go shopping for some fruit for them, I would ask them what sort of fruit and they may say apples. I would then say, well what sort of apples would you like? So, dementia’s the umbrella term. Alzheimer’s disease makes up fifty to seventy percent of all types of dementias. Then there’s another group of dementias in the frontotemporal dementia range, but Alzheimer’s is the most common type of dementia and, even then, there are sub-categories and different types of Alzheimer’s disease. The second leading cause of dementia is called vascular dementia and then I think Lewy body is the third highest type of dementia. It’s not a specific disease, it’s a group of symptoms that can affect memory, it can affect thinking, and social abilities. It has to affect those abilities enough to interfere with daily functioning, or if you’re younger like I was when I was diagnosed, to interfere with your working life. It can involve sensory changes. People lose their spatial awareness, their visual depth perception, sense of smell, sense of taste. There’s a lot more symptoms than just memory loss involved in dementia

Smith: In what type of dementia? You said more than just memory loss and then…

Schenk: Spatial awareness, you said.

Kate: Oh, there’s many many symptoms with dementia, so particularly, the sort of more general type of dementia, the kind of more basic Alzheimer’s where you have short term memory loss but still have pretty good long term. That is likely to be one of the most common features of Alzheimer’s disease. But, some of the frontotemporal dementias may have a behavioral variant, where it does affect your personality and your behavior. Or, you may have a semantic variant which is basically commonly known as primary progressive aphasia so it affects your ability to speak, your ability to understand words, to comprehend, ultimately to read, it can cause dyslexia, a whole range of disabilities that dementia can cause. The general community seems to think it’s just memory loss, but it is so much more than memory loss.

Schenk: When an individual is less symptomatic for dementia, whatever type, are there things at this point in time that can be done in terms of maybe mental exercises or medicines that reduce the likelihood of the symptoms or the onset of? …

Smith: lifestyle changes? Anything like that. Do we know of anything we can do at this stage?

Kate: Well, in the early–If someone’s lucky enough to be diagnosed while in the early stage of dementia, one of the things I campaign globally for is that the symptoms of dementia need to be seen and managed as acquired disabilities, so in the same way as if I had had a stroke at the end of 49, I probably would have had some cognitive disabilities afterwards. I would have been given rehabilitation and speech pathology and possibly a whole range of other rehab and disability support. People in the early stages of dementia, and if you get to spend some time on google and actually read blogs and books written by people with dementia, you’ll find that their functional capacity seems normal, but they’re working harder than it seems to manage to function. So, to treat the symptoms of dementia as disabilities and then set up strategies to support them. But, in terms of medication to slow down, or to prevent dementia, currently to my knowledge there’s no cures or any types of prevention yet on the horizon. There’s been a goal with World Dementia Council that we’ll have a cure or a disease modifying drug at least by 2025. I’m not overly optimistic about that, but what I am optimistic about the research that’s being done to either prevent the risk or mitigate the risk of getting dementia in the first place, or to slow down the progression once somebody has been diagnosed, and the research in that area is very strong on lifestyle changes, in the same way that the evidence is very clear for example heart disease. You know, lose weight, get fit, change your diet, get rid of large amounts of sugar, reduce alcohol or other drug intake, give up smoking. Those types of things are huge risk factors for dementia.

Schenk: Oh, those are dementia risk factors. I thought you meant those are the heart disease risk factors. So, it’s almost hand in hand with just general overall health.

Kate: Almost hand in hand with overall health and I think that what governments and particularly policy makers are having to find out, our health systems are starting to realize if they don’t focus on risk production to reduce the incidents of dementia, then we’re just not going to be able to afford to treat people with dementia. The current number of people estimated to be living with Dementia globally at the moment is 50 million people, that’s expected to rise significantly by 2050 if we don’t some major changes.  So, yes, those same lifestyle changes we need to make for heart disease or, for example, if your suspected of having diabetes, to take on all the same lifestyles and good health modifications to try and prevent getting dementia in the first place. Dementia is a terminal, progressive, and chronic illness. There is still no cure and we still don’t have any disease modifying drugs. So, for example, with diabetes we have a disease modifying drug, people are given insulin. For heart disease, there are disease modifying drugs. We don’t have any disease modifying drugs yet for dementia.

Schenk: So, other than the lifestyle changes that you mentioned, such as going on a healthy diet that’s reduced sugar intake, possibly exercise, this type of thing, are there any other lifestyle changes in terms of maybe turn the TV off, or get off your phone, these types of things. What other things could be done?

Kate: I think there’s a couple of other things that the evidence is showing fairly good evidence for increasing isolation, so social isolation, is a risk factor for dementia and so for people to remain actively engaged and socialized in their communities can 1) reduce the risk and 2) can slow down progression of dementia. The other thing that evidence is starting to talk about is new learning is really important. Not so much just a braining app on your phone, but actual new learning. Learning a new instrument. Learning a new language. Learning to sing. Learning where you’re pushed to keep learning. So, you know, if I went to start learning the piano next week, once I’ve mastered the first three pieces, I wouldn’t stay playing those three pieces of music on the piano. I would then go to a harder piece. I would then go and start learning new and more difficult pieces of music on the piano, so new learning is becoming important in the evidence part as well.

Schenk: This is a good segue then. So, for those that have loved ones that are going into a nursing home, that are symptomatic or that are becoming more symptomatic for dementia, what are somethings that you would suggest to that family member to do in order to enrich the life of that resident that’s suffering from dementia?

Kate: I guess there’s a couple of things to mention just here. Number one: dementia’s not a normal part of aging. Even at the age of 85 years old, less than fifty percent of people will have dementia. There are about a hundred other conditions that can cause cognitive changes, including memory loss. We need to make sure that our family members don’t have some other medical conditions such as delirium, such as urine tract infection, such as a thyroid condition. Those are the types of things that could actually cause symptoms that make it look like dementia, but in fact can be managed or cured. So, I guess for someone who’s going to need to be in assisted living, my recommendation here, like me doing some work right here in regional Victoria in Australia, is that when a resident is newly admitted to a nursing home, that the family or friends in the community take the person back out to do the normal things they were doing before. So, someone might play ball, they might go to a bridge club, they might go sailing or fishing.  Keep going outside of the nursing home for as long as possible doing activities that are external to a nursing home. Because, once you get into a nursing home, often times it’s very institutionalized living. It does often times equate to really poor care. The activities are often quite meaningless and not anything that I would call in any way, shape, or form, new learning. People tend to deteriorate really quickly in a nursing home.

Smith: It’s interesting that you say it’s not a normal part of aging because here in America, especially, and maybe only in the South, Alzheimer’s is actually pronounced, and this always drove me crazy working in the health care industry, but Alzheimer’s is pronounced “old timer’s.”

Kate: I know.

Smith: And it’s done for a couple reasons. I don’t know if it’s done just for this, or it’s also just a by-product of it, but it’s come to the point where it’s seen as old person’s disease. Like, “well she’s just got old timers which happens to everybody.” The reality is that it doesn’t happen to everybody. Another reality is just because you’re diagnosed with it, doesn’t mean you go straight away to a nursing home or assisted living facility. Right?

Kate: No, absolutely not. If your diagnosed in the early stages of a clinical dementia, it’s very unlikely that you would go straight to a nursing home. You wouldn’t need to and I think the organization that I’m a Co-Founder of, Dementia Alliance International, have a very large cohort of members who have younger onset dementia, who often didn’t start out with memory loss as a salient symptom of dementia.  They are actively living positive and productive lives, particularly in the earlier and mid-stages of dementia. So, it’s definitely not an old person’s disease specifically.

I can’t remember the statistics in America. I think there are 35 million people currently diagnosed with dementia. In Australia, we’ve got roughly 440,000 people diagnosed with dementia. Of which, about 265,000 people, under the age of 65, have younger onset dementia. So, it’s definitely not exclusively an older person’s disease, but it is more common in older people. But, it’s not a normal part of aging, so just as our eyesight starts to change and our skin starts to change as we age, so does our memory and so does our speed of thinking.

There are some cognitive changes, in psychology it’s benign senescent memory loss, and that’s a normal part of aging. It’s when it starts to affect your everyday functioning, so for example, you might walk into the next room and wonder what you went there for, but in three or four minutes time you remembered what you’d gone there for. Or, you might put your keys in a place that you forgot for a little while, but then you find them. It’s when you look at a set of keys and don’t know what to do with them or you can’t remember how to drive a car. Or, you start to get lost, perhaps, in a familiar surrounding.

I was diagnosed with dementia at the age of 49. My first symptom was some acquired dyslexia, which I didn’t have as a child. Suddenly, I couldn’t spell simple words like that. I was seeing two syllable words as two separate worlds. I’d actually worked with dementia and I had no idea that might be a symptom of dementia–That I might end up being diagnosed with younger onset dementia.

Smith: Kate, that’s an interesting story in itself. How do you on a daily basis–How do you overcome some of these obstacles that you’ve had to face?

Kate: Well, I was a little bit lucky if you like. I didn’t go to university when I was young for various reason. I happened to be a university student at the time that I was diagnosed, which was when I was 49, but I started being tested when I was 46 or 47. Whilst the healthcare sector told me to give up work, to give up my university studies, and to get my end of life affairs in order and to think about an age care facility sooner rather than later. The university said to me, “well you’re clearly in the very early stages of your dementia. We have a whole disability support building and team full of qualified disability advisors. We can help you continue to study.”

I use a lot of strategy to maintain functioning. To, you know–There’s a lot of software now to help with spelling and you can very quickly look up the meaning of words with your online dictionary. At home, I have a lot of laminated help sheets, which is what you call soft technology. I use other technology to support me with reminders in my phone, reminders in my calendar.  Things like asking you to remind me yesterday that this was on today, it’s just a really simple way of supporting me. I do have some memory issues now, so there are lots of things that I’ve done.

One of the things that I have done, that probably most people don’t do, is from an early part of my dementia, in the earlier stages, I also implored to Speech Pathology because I probably have what’s known as a semantic variant of chronic progressive aphasia, which just doesn’t affect your ability to understand words and to find words, but ultimately to speak. Because I have had a Speech Pathologist on board for eight years, I have a lot of techniques that have helped me maintain speaking. When I get very tired, my chronic progressive aphasia actually kicks in quite badly and I do have sometimes when I can’t talk at all, I can’t get the words out.  But, for me it’s very early in the day so my speech is currently still very good.

Smith: Well, Kate, you’re certainly very inspirational and I think that your story is very inspirational to a lot of the families that listen to our podcast because it shows that just because you get this diagnosis, it doesn’t mean that you can’t continue to live a very productive and independent life.

Kate: I often say, “Don’t let the diagnoses be a death sentence.” Keep living after dementia and demand–You know I tell members of Dementia Alliance International to demand support for their disability so that they can stay functional. Younger people should be demanding to stay at work, if that’s their choice, for as long as their capable.

I’m not saying that any of the strategies, or even the lifestyle changes that I’ve made including exercise and diet changes and I’ve continued to stay on at university, which is clearly new learning, they may not be a cure, but they’ve certainly slowed down progression and allowed me to manage to keep living a positive life. Too often people take the advice of the health care professionals and they go home and get ready to die and that’s incredibly depressing.

Smith: Can you tell us more about the Dementia Alliance International? We’re going to put an image of the website and the location of the website up for our viewers to see, but can you tell us more about it?

Kate: Dementia Alliance International started out really as a grass roots movement. There were eight people with dementia who–I guess when you’re first diagnosed with dementia, people stop talking to you and start talking to either your husband or your wife or the other person in the room if you happen to be lucky enough to have someone with you. You suddenly start being treated as if you’re not a real person anymore and you can’t hear.

Because of the internet and because of attending conferences, I met a group of people with dementia from different countries and we talked about setting up an organization for people with dementia that’s run by people with dementia. We can have our voice because we do get sick of being talked over and about. We borrowed from the disability community the “Nothing about us without us” motto.

So, eight people with dementia in 2013 worked hard, and on the first of January, set up what was initially just a website and started advocating for members to join that group. We had eight people with dementia from four different countries. Now two of our founding members have now died, interestingly not from dementia, but from other diseases, one from cancer and one from another illness. Our membership is free. We run online support groups for people with dementia from all around the world and lots of time zones. We have a monthly educational webinar with very eminent speakers.

We’ve got a professor presenting next week on how to increase your cognitive reserve and speaking to that topic from a very academic perspective. There are ways to maintain or to increase your cognitive reserve, so for people who have already been diagnosed with dementia that’s a very interesting topic.

We now have members that are from 44 countries around the world, our youngest member is an 18-year-old lad from Kenya and our oldest members are 93 and do live in a nursing home, but they’re so lonely and bored in their nursing home that they come to our online group for comfort.

Smith: That’s amazing.

Kate: Yeah. It’s been a very interesting grassroots movement. I think in my early days as an advocate, I sometimes felt like Rosa Parks going to sit on the white person’s part of the bus, but there’s now so many of us speaking up publicly. We have a lot of dementia advocates in America, there’s a lot in the UK, there’s a lot Europe now. I have been doing my work in my role as a board member and mentor for Southeast Asia. I have been helping those countries such as Singapore and Taiwan to engage people with dementia to get them to have a voice in their own countries.

Schenk: Fantastic Kate, you’re doing fantastic work and we appreciate the work that you are do. We appreciate you and we appreciate the fact that you could take some time and come on and educate our audience.

Smith: Us as well about this issue.

Schenk: Absolutely.

Smith: And the work that you do with Dementia Alliance International.

Kate: One of the things that happened last year is the World Health Organization launched a global action plan for dementia, which does include human rights. For anyone who’s listening to this, either with dementia or supporting someone with dementia, it’s definitely worth looking up a publication we have on our website for human rights, “Human Rights of People with Dementia from Rhetoric to Reality.” If anyone who is working in government or health care policy is listening, then I do recommend they read the World Health Organization’s publication on dementia because our national dementia strategies or national action plans do need to start including human rights and the access to the conviction on the rights of persons with disabilities in the same way any other person with an acquired disability would expect.

Smith: Absolutely. Absolutely, Kate. Well, we want to thank you again for coming on. You’re doing great work and we look forward to what you ‘re going to accomplish in the future.

Kate: Fantastic. Thank you so much for having me on your program.

Schenk: Thanks, Kate.

Smith: Alright.

Kate: Thank you. Bye now.

Schenk: Bye. Well, That’s very inspirational.

Smith: That was a very inspirational story about what she’s gone through, what she continues to do in her work.

Schenk: It’s amazing.

Smith: Yeah.

Schenk: Some of the–If you have a loved one in a nursing home, if it’s possible, I mean I know there’s a lot of things that people do like, you know I bring her 7-Up or Mellow Yellow, or whatever it is, but I mean like, if at all possible, when your socially isolated it worsens their symptoms so the more that you can bring family. The more that you can take them out of that nursing home is better. The new learning, I didn’t realize that. It’s not just doing Sudoku all day.

Smith: Yeah.

Schenk: It’s learning a new skill. That’s something that’s helpful. We’re social creatures, we want to be around people.

Smith: It engages the brain.

Schenk: Yeah, it’s important. Well, alright, I guess that does it for today. We really appreciate you sticking around. If you enjoyed this episode, we have plenty more of them. We actually have 71 other episodes that you can check out. You can download them on Stitcher, iTunes, Spotify, or any other location that you get your podcasts from. Or, you can watch each and every single episode on our website which is nursinghomeabusepodcast.com or at our website–No that was our website. Or, on our YouTube channel. That would be the other means in which you could watch the episodes. We thank you again and with that we’ll see you next time.

Smith: See you next time.

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