The Sunflower Conversations

Giving a voice to people with Dementia

March 21, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Giving a voice to people with Dementia
Chapters
The Sunflower Conversations
Giving a voice to people with Dementia
Mar 21, 2021
Hidden Disabilities Sunflower

Sara Barsel is an advocate for people with dementia. The conversation focuses on how frightening the experiences can be when you start forgetting what it is you are trying to do or how to do it and how frustrations can be linked with violent behaviour. 

The Dementia Friendly Airports working group based in Minnesota that Sara heads up has influenced the Airline industry in the US to change their approach to the security process which can be overwhelming and not accessible.

In Sara’s view The Hidden Disabilities Sunflower gives people with dementia a dignified choice to be self-identified.

Hosted by Paul Shriever and Ruth Rabet, Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Show Notes Transcript

Sara Barsel is an advocate for people with dementia. The conversation focuses on how frightening the experiences can be when you start forgetting what it is you are trying to do or how to do it and how frustrations can be linked with violent behaviour. 

The Dementia Friendly Airports working group based in Minnesota that Sara heads up has influenced the Airline industry in the US to change their approach to the security process which can be overwhelming and not accessible.

In Sara’s view The Hidden Disabilities Sunflower gives people with dementia a dignified choice to be self-identified.

Hosted by Paul Shriever and Ruth Rabet, Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Paul Shriever:

My name's Paul Schriever. Also with me is Ruth Rabet from the Hidden Disabilities. Hi Ruth.

Ruth Rabet:

Hello. Good afternoon.

Paul Shriever:

Joining us today all the way from Minnesota in the US is Sara Barsel. Sara is currently the organiser of dementia friendly airports working group based in Minnesota. She is also the co-founder of the Roseville Alzheimer's & Dementia Community Action Team. Welcome, Sara. Can you please introduce yourself?

Sara Barsel:

Well, thank you for this opportunity. Yes, I'm Sara. I'm sitting in Minnesota. I'm a volunteer. I organised the two groups that you just identified.

Paul Shriever:

Welcome, welcome. How and when did you first hear about the Hidden Disabilities Sunflower?

Sara Barsel:

I heard about the Hidden Disabilities Sunflower at the end of 2018. We had a student who was assigned to me and I asked her to go through the CAP1629 spreadsheet, which identified all the UK airports that had some measures in place to address people with hidden disabilities. Out of that, we found out that Gatwick had the Hidden Disabilities Sunflower, and at that point we got in contact with Sarah Marchant, and it took off from there.

Paul Shriever:

What do you think of it?

Sara Barsel:

Oh, I think it's magnificent. I think that it is simple, it is easily recognizable and not mistaken for something else, because so many different groups have lanyards. I think that it represents a dignified choice for people who want to self-identify. I think it's a brilliant idea.

Paul Shriever:

I know that you work with people with dementia. Do you think that the Sunflower helps people ... Does it help someone living with dementia and in what way does it help them?

Sara Barsel:

Well, I think it can. Remember that dementia is just a collection of symptoms and that they can affect memory, thinking, and social ability, but they become an issue when they're severe enough to interfere with somebody's daily life. And at that point, you may have memory changes or difficulty communicating and speaking, you may have visual and spatial problems, you may have difficulty handling complex tasks or planning motor function problems, personality changes, depression, hallucinations, many, many things. Nobody, hopefully, has all of them, but I think what the Sunflower does is to allow somebody who's experiencing some of that, especially somebody in the early stages where they still can be out and about by themselves, functioning in society. It allows them the dignity of walking around by themselves, it suggests to people who know what the Sunflower is that they might need some additional time, or attention, or understanding, and it relieves them of the necessity of making that statement to somebody.

Paul Shriever:

Sara, you created the Dementia-Friendly Airports Working Group in 2018. Can I ask you what difference do you think the DFAWG has made in the last two years?

Sara Barsel:

The first thing we did was to launch a survey for people with dementia and their care partners or travel companions to find out what were their air travel experiences. And the information that's come from that has allowed us to start to develop protocols or tools that we can offer to either the security screeners, or to the airport, or such. Because remember, we don't have the advantage of the Civil Aviation Authority regulations that you have. We had the air travel survey and we had close to 260 people who responded to that. We've been analyzing the data and working off that. So that's one thing we accomplished and it added to the body of information about air travel experiences that people living with dementia have. The next thing we did was just establish a working definition of what is a dementia-friendly airport. What are we talking about when we say these words? The next thing we did, we established a website, and the website is accessible to anybody, any place. It has detailed information to assist travelers with dementia and their care partners.

Sara Barsel:

We have information on everything about the flight process, what regulations are appropriate, what's involved with COVID-19 regulations, how to book your travel, and such, and this is framed for US travelers right now, but it still is information that was never available to people. So we've put that together. Then we did two other things that I think are really important, one is we lobbied the Minneapolis−Saint Paul International Airport to adopt the Hidden Disabilities Sunflower lanyard, and they did, and they did that in November 2020. So that was an accomplishment. And the other thing we did, and it was based partly on information we got out of our survey about security screening difficulties, we approached the Transportation Security Administration, the TSA, who are our equivalent of your border security. And they do all the screening at the airport. So we basically approached them and we said, "If we produce best management practices for your security screeners, detailing simply ways for you to interact with people with dementia and their care partners as they go through security screening at whatever airport, would you use them?" And the answer was absolutely.

Sara Barsel:

So we worked with the disabilities officer connected to the TSA, and in October of 2020, our best practices were distributed in what they call a national shift brief, which meant that for the first time ever the needs of people with dementia were put specifically in front of the security screening officers, and that included do not separate the people with dementia from whoever they're traveling with. The other thing that we had, which they've never seen, there's a member of our group, there are several, but this individual is a very articulate member who is living with dementia. He wrote a short essay about what it was like to go through security. This was incorporated with what was given to the national shift brief distributors, and so it is available to the TSA officers, which means again, for the first time ever, the voice of somebody living with dementia was shared with security screeners in the US. I think that's a pretty nice slate of things to accomplish in two years.

Paul Shriever:

What is the value of the Hidden Disabilities Sunflower to the DFAWG? Can I ask you what DFAWG stands for?

Sara Barsel:

Yeah. The Dementia-Friendly Airports Working Group. It becomes an absolutely unpronounceable acronym, so we call it DFAWG. The Sunflower is internationally recognised. It's a unique symbol. It has very simple training, very short training for sponsors. It's inexpensive for sponsors to participate in the mandatory giveaway of the lanyards, if they choose to, and I've learned that they also have the option of not distributing lanyards, and just training their staff and displaying signs saying that we recognize this. So I think that it's remarkable that way. Now, in addition, you've added this Make it your Own option, so if somebody wants to personalise the information that's on their card, they can do that. I just think it's fantastic. So having the Sunflower at least indicates that somebody on their staff thinks that this is important.

Paul Shriever:

Can I ask you how did you get into dealing with people with dementia?

Sara Barsel:

Almost by accident. When I had a birthday that put me into my 60s, I started looking to see what facilities were available within local communities for seniors. And in the course of doing that, I was asked to join an advisory group that our county, which is one level of our local government, has for suggesting programs for seniors that they might support. And in the course of doing that, I met some social workers, and this dementia-friendly initiative based on what you have in the UK was just starting in Minnesota, and it was called Act on Alzheimer's. And so there was a local group, another neighboring community, that was having a big kickoff event to say we are going to be an Act on Alzheimer's community and we will be dementia friendly. And so I went down to it to see what it was because I live in a community that has the highest number of people over 65 in a municipality in Minnesota. And so I thought well, if Saint Paul, the community next door, is bothering to do this, we probably should pay attention.

Sara Barsel:

And so I brought that back and the upshot was that eventually we had a community meeting with senior service providers, municipal employees, the fire department, the police department, to try and ascertain whether or not we thought it was a valuable exploration. And what came out of that was that many of the senior service workers who came said yes, and we have an increasing population of people living with dementia, we know from statistics that there are a certain large percentage who are living independently in the community, and we know that we have so many in residential care. Every time some government wants to cut the budget, social services get cut. And so we also knew that any kind of support for the unpaid carers was easily cut, there was very little of it. There certainly was nothing for people who were carers who were still employed. There was very little in the way of supportive services. There were no respite services that were widely known or activities for people specifically with dementia and such, and so we started looking at how do we get that information, and it just snowballed.

Ruth Rabet:

So is that how you then got involved with the Dementia-Friendly Airport Working Group?

Sara Barsel:

It is sideways how I got involved. While we were doing just the community dementia work, to get that started, we got connected to Joe Gaugler, who at the time was faculty in the School of Nursing at the University of Minnesota, now he's in the School of Public Health, but his specialty is research on dementia caregivers. And so he had gone to a meeting in Australia, I think he flew into Brisbane, and that again was June of 2018. And he sent me an email and he said, "Hey, Sara, the Brisbane airport has the designation of being dementia friendly. What's the status of the Minnesota Saint Paul airport, Minneapolis-Saint Paul? And if it's not dementia friendly, why doesn't your group make it happen?" So that's how that came about. The Alzheimer's Association, which is the US version of the Alzheimer's Society, puts out an annual report and they have statistics in it. And I truly can't tell you the accuracy or veracity of some of what they site. That's where the numbers come from when you talk about anything in the US.

Sara Barsel:

And so they put out a report, and at the time that we were starting to do this, they had this percentage of people in this age group would have dementia, and of that, this percentage would ... and they had all these demographic breakdowns. When we started the dementia group, which was in 2013, it was difficult for people to get a dementia diagnosis, especially if they just went to their primary care provider. Now, that has changed dramatically. It still is not perfect, but it has changed. Again, there are many causes of dementia. And so you might have somebody who had a stroke and they have vascular dementia, and that's a very different presentation, and it's recognized differently by medical professionals than if you have somebody who has Lewy body dementia or Alzheimer's disease. So I think what's happening is that the medical profession is developing its cognizance and its skill, and that has accompanied everything. So whether or not it's because people are living longer-

Paul Shriever:

That development, has that happened, in your opinion, in just the last 10 years?

Sara Barsel:

That's what I'm seeing. But again, I'm not a professional in the field and I don't track it on any basis, actually. I mean I will hear comments from members of our group who are professionals in the field, who will say this is what we're seeing, we're getting better responses. We had people who used to come to some of the public events that we ran, and they were dementia general information events, and we would have speakers. And we would invariably have somebody say, "I can't get an appointment with a neurologist. I have to wait," and they'd have some long amount of time. I haven't heard that kind of statement recently, but again, between the pandemic and changes in the frequency of appointments or how many people are able to do diagnostic work, I think it all goes together, but I can't sort it out for you.

Paul Shriever:

I was talking to a friend only the other day who said he lost his mom. I've been speaking to him for years. He was a friend of mine. And he said he lost his mum to dementia. And it's quite a broad term, as is cancer. You can get cancer in so many different ways. In the same way, dementia can manifest in a number of ways. And it's just interesting to hear your points around that, your thoughts around that.

Sara Barsel:

And remember that just as all the different types of cancer have different prognosis, different treatments, the same thing is true for dementia. And we are just at the tip of the iceberg, I think, in terms of any understanding. The majority of dementia cases are seniors. You have the incidents of comorbidities. So you have people who start to lose their thinking capacities or their functional capacities, but at the same time they are losing their hearing. Well, we have statistics that will tell you that hearing loss is correlated with dementia-related behaviors. Which comes first? It probably depends on the individual.

Paul Shriever:

Is it a disease or a condition? How it should it be described? A condition?

Sara Barsel:

Yes, I would think a condition. I looked it up today just for this on the Mayo Clinic site. And again, it says dementia describes a group of symptoms. So the symptoms may be caused by different diseases, but it's not a specific disease.

Paul Shriever:

It's one, I have to say, I find quite frightening. I can get my head around a pain, or losing something, or having problems with my mobility, but it's you, isn't it? And that's what I saw when my mother got it, she lost herself, and didn't know who she was or who we were. And that's terrifying, because at the end of the day, that's what we've got, isn't it? We've got ourselves. And if we don't have that, then we have nothing, really.

Sara Barsel:

I would agree. Again, I'm going to be 73. So I experience memory loss occasionally, I will have an experience where I know I need a key to open the door, but I have two keys in my hand, and I've stood there with the car key wondering why I can't fit it in the house lock. Well, imagine that happening all the time. You understand that you need something or you know that you want a certain word or phrase to describe something, you can hear it in your head, but you cannot articulate it. How absolutely terrifying.

Paul Shriever:

I can't even begin to imagine.

Ruth Rabet:

No, and it's very difficult. And the dementia friends training that I received, it's very much you don't realize or understand the detail. For example, we were asked to list down how you make a cup of tea. What points do you have to do to make a cup of tea? And I thought long and hard, and I had eight or nine points, and I thought I had done really well. And then the other people in the team, they had about 20, 25 points. And it was about how to switch the tap on. I thought I'd done really well by opening the kettle lid, et cetera, but it goes down to that detail that people can forget how to turn the tap on, how to switch the kettle on, to open the cupboard to get a mug or cup out. And oh, it broke my heart. It's awful. It really is.

Paul Shriever:

Yeah, I have to say it's one of the things that really does scare me because it's what we are, isn't it? I don't know.

Sara Barsel:

It's you.

Paul Shriever:

It's you, that's it. Absolutely right.

Sara Barsel:

And you have no control what do you do. And then you see things happening around you and who knows how you're processing that inside if you cannot express that. There are lots of discussions that I hear about people who have dementia and who have violent or aggressive behaviors. The people who are describing this will often say, "Oh, my husband," and then they'll describe something violent or aggressive, "And he never was that. He was the gentlest person." And so if you think about that, it may be the frustration of not being able to express what it is or to express are you experiencing pain or discomfort? At some point, depending on how severe it is, you may become violent because you can't make it clear to somebody. It is truly terrifying, yes.

Paul Shriever:

I totally agree, Sara. In the same way that a child cries because he can't express himself, that's the only way you can ... You can't get out what you're trying to communicate, and that must be just horrendous.

Sara Barsel:

Awful.

Paul Shriever:

How have you found daily life in general since the pandemic started?

Sara Barsel:

I've been very lucky. First of all, I have health, healthcare, stable housing, stable food source. We haven't had weather that we can't contend with. I live with my husband. We have animals in the house, so there's always something going on. We have been forming what they call a pod. So my daughter and her husband live a few miles away. We have sequestered ourselves so that we can get together, but I think the last time I saw them in the house was Christmas, and now we see them outdoors because we might take a walk together, or they bring their dog over to try and be friends with our dog, or something, but everybody has a mask on and stuff. We're not immediately impacted by this. We are impacted in terms of being susceptible because of age and physical conditions. We are impacted by the difficulty of getting vaccinations, but everybody else is too.

Paul Shriever:

Have you been vaccinated yet?

Sara Barsel:

I have not. And in my state, there is a lottery and they have a limited number of vaccinations. And then we don't have national healthcare. We all pay for private insurance, and private care, and such. And so the care provider that I have right now is restricting their vaccinations to people who are 75 and older, I have to wait for them to drop the barrier, and then they still have a lottery within that. Now, my husband was called by the state lottery, and so this coming Friday he is scheduled to have a vaccination. However, he was scheduled to have it a week ago Friday, and because of the severe weather, there was a restriction on the number of vaccines that were available, and therefore everything was postponed. So I'll believe it when it happens.

Paul Shriever:

Sara, do you know anybody who has had COVID? Is it something that's impacted you in any way?

Sara Barsel:

Yes. There are several people in our dementia group and also, because there's overlap, in the airport's group who are frontline workers. So they are nurses or residential care workers in whatever site, and at least four of them have had COVID. Two of them appear to have what we're calling the long haul COVID, one of them who has never had the strongest health to start with has had lots of repeated severe symptoms, and recently had the vaccinations. And when she had her second vaccination, she evidently had a repeat of some of the severe symptoms, but they did not last more than a few days.

Paul Shriever:

I'm going to ask you about your career, Sara. Can you explain and where you have worked?

Sara Barsel:

Well, basically I've had two different careers. The first one was as a special education teacher, and I taught an assortment of special education populations in public schools, and I taught in elementary and secondary schools. My responsibilities, because of my training, were to develop programs for these children. The politics of education here keeps shifting, so special education populations, sometimes we're integrated with all of the "normal" students, and sometimes we're isolated or there were resource rooms and they would pop in and out. And so I taught through lots of these different shifts. At some point during my teaching career with the elementary schools, I decided, again, I was very unhappy with the approach that administrators took towards children with disabilities and their parents. And I finally decided that, for my own health and to stay out of jail, I would have to switch careers.

Sara Barsel:

And so I started supplementing my studies with science classes and eventually got into graduate school, and the culmination of that was that I became a scientific researcher. And the general field was plant pathology and botany, and then, beyond that, genetics. And so I worked as a researcher for a while in that field also. As a side shoot, I would teach at the community college, they wanted basic chemistry, or they wanted environmental science, or something like that. And teaching at one of the local community colleges was great fun because half of the population were immigrants from East Africa. And many of them were students who were in the basic chemistry class because they needed it in order to qualify to be in respiratory therapy training. And these people who were magnificent. We had more discussions about chemistry and politics, and how do you interact with different people? And it was wonderful.

Paul Shriever:

Just briefly, tell me what is pre Velcro special education.

Sara Barsel:

Okay, you know what Velcro is?

Paul Shriever:

Yes.

Sara Barsel:

Yes, okay. When I taught special education, initially they had not invented or marketed Velcro, which meant that when you needed to manufacture something on the spot for a child with some limitations to use, you had to do it with whatever tools were available, and that tool was not available. And Velcro has made it so ... Think about just closing shoes. If you put your foot into a shoe and you have a Velcro closure that you can use, the shoe stays on. If you're trying to dress yourself, you can use Velcro. If you drop things, you can make a string and attach Velcro at the end, and then use it as hooks to connect you to whatever the object is, if it doesn't weigh too much. But none of that was available, and so we had to invent things using hooks, and eyes, and whatever. I abused my sewing machine terribly. It's kind of an in joke, people who have been special education teachers for a long time get it because they also were pre Velcro. The other tool that was just in development when I was studying was the computer.

Ruth Rabet:

Yes, of course.

Sara Barsel:

And think about what you can do. Not only has it evolved so that you've got search engines, and you have all kinds of software, and you're not using carbon paper to type something. I mean you have all of that, but you can do computer modeling, you can do simulations that were never available when I was studying. So I mean if I could go back and do it again, it would be a radically different set of information. It's just magnificent.

Paul Shriever:

You know what's amazing, Sara? Is that all of this has happened in your lifetime. I just find that mind boggling. A lot of things, when you look back at them, can take generations, and generations, and generations. For that to have all happened in just your lifetime is incredible, isn't it? It just shows you how quickly humanity's changing and developing.

Ruth Rabet:

And that's a really good point about dementia, and certainly in the UK, discussing people with hidden disabilities, mental health wasn't really discussed ... I'm 53, mental health wasn't discussed for 10-

Sara Barsel:

Never.

Ruth Rabet:

... 15 years ago. It was a taboo subject. It was bad to discuss, "That person's got mental health issue. Don't speak to them." Now, it's embraced. Dementia, and autism, and the other hundreds of hidden disabilities. I think we've come so far in 5, 10 years to now it's good to talk about it. The more we can talk about and raise awareness about people or any hidden disability surely is a good thing.

Paul Shriever:

Absolutely. You've mentioned here that everyone needs to be treated with dignity and have access to advocates. Can you just explain just a little bit about that sentence?

Sara Barsel:

Yes. I think everybody, regardless of their intellectual or physical capacity, has something that's unique about them that they can offer. And I think we need to respect that and we need to try and enable that. It may not produce a product that everybody will recognize and say, "Oh, that's magnificent," but that's not the point. The point is to provide the opportunity, to provide the tools in as helpful but non-judgemental a way as possible. When I talk about some of the fights that I had when I was teaching special education-

Paul Shriever:

Have you found social distancing, Sara, in relationship to what you're doing and to others?

Sara Barsel:

Well, I can only speak about it personally and within my household. And when we go out to walk the dog, or if I go to the grocery to pick up whatever we need, I think that it's critical we put on masks, at this point we put on two masks because that's what's been recommended here. I try very hard to keep a minimum of six feet between myself and whoever is there. I think it's very important not only to try to protect myself, but more importantly to protect other people. And I get very angry when I see people who do not have masks, who do not social distance, who think that it's okay to still behave as though there is nothing transmissible, because they are willfully endangering other people.

Paul Shriever:

If you could ask for one thing as a result of this conversation we've had today, is there something that you want people who are listening to this to take away?

Sara Barsel:

In the US, what I would ask is that, as a population, that any way what you do in the UK with respect to the dignity that you afford people by having universal healthcare, by having universal recognition of the hidden disabilities lanyard, by having policies that your Civil Aviation Authority puts into place which say it is illegal to separate the carer from the person requiring care. If we could emulate any or all of that in the US, it would just be fantastic.

Paul Shriever:

Sara, that's absolutely brilliant. And thanks ever so much for your time today, you've been brilliant. And it's been lovely talking to you.

Sara Barsel:

I have to tell you how magnificent we find it, I find it, but the people I share it with in the working group find it, A, that you've got the regulations you do, B, that you have Ruth, and that you have Sarah Marchant, and that you have Ian Sherriff, and that you are all working individually, and collectively to make things move forward, and that you're willing to share this. I mean this is just magnificent, and I don't know how long it's going to take for people in the US to understand the value of what you're doing and find some way to implement pieces of it. So you can be thinking about how does society view this general sector of the population and what does it cost you to be civil? I mean that's a basic question. And so, again, interacting with you, Ruth, with you, Paul, with Sarah, with Ian, has just been magnificent because otherwise we would be sitting completely in a desert.

Ruth Rabet:

Well, thank you so much, Sara. Thank you again so much for today. I've loved it. It's been a real natural conversation, hasn't it?

Paul Shriever:

It's been a pleasure talking with you, Sara. Thank you for your time.