In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.
Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships. DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.
DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.
Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family, attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.
The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.
They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.
Please find below a list of materials already published.
Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]
The Organisation for Economic Co-operation and Development (OECD)
As part of the OECD’s response to this crisis, they have launched a platformthat provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.
Alzheimer’s Disease International (ADI)
Alzheimer’s Disease International (ADI) is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.
Dementia Australia (DA)
In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19:
We recently had the pleasure of sitting down with one of our members, Theresa Montgomery, to find out more about her experiences as a woman living with younger-onset Alzheimer’s. This interview is part of a new series we are doing at Dementia Alliance International that explores the lived experience of people around the world who are living with Alzheimer’s and other forms of dementia.
This month, we are highlighting Theresa’s story in honor of International Women’s Day. For more than a century, International Women’s Day has been a day of celebration and gender equality. This year, the theme for International Women’s Day is #EachforEqual, which speaks to the vision of a world in which all people are equally enabled.
Dementia Alliance International’s vision is a world where all people are valued and included. We applaud Theresa and celebrate her as a woman living with dementia who challenges stereotypes, broadens perceptions and has worked for much of her life to improve situations and enable all people equally.
Tell us a little about yourself.
I live in Duluth, Georgia. My husband and I moved down here from Chicago to live with our daughter and son-in-law when I got sick. I was diagnosed with younger-onset Alzheimer’s in 2015. Then over the next two years, I was diagnosed twice with breast cancer. I’m going on my fifth year of my Alzheimer’s diagnosis and my second year of being cancer free.
Back in Chicago, I had quite a varied professional career. My last job was working with the public a lot in – more or less – the role of a social worker, empowering people in lower socio-economic situations to rise up and to be the best they could be, to be someone great. For some people that meant getting out of public housing, for others it was going back to school, buying a house. Whatever. We did lots of fundraising and networking with different businesses to create a network for these people to access and benefit from.
That was my last role. I’ve had so many jobs during my career because I would get bored. I would do something for so long, then I would go off to do something else. But that was my ending profession.
Things are different from then to now, but I don’t let it stop me.
You were a national advocate for the Alzheimer’s Association and now you are very involved with Dementia Alliance International. In your experience, what are some differences between the Alzheimer’s Association and DAI?
The Alzheimer’s Association is great for learning about your disease. The DAI side is more fun because we get to actually engage with other people who have dementia. At Dementia Alliance International, you’re empowered to live your life, to be who you want, and to say, “Hey, wait a minute! There’s still oil in the car!”.
We can still do a lot of things and we want to tell you and help you and still live our lives the best that we can, even though we’ve been diagnosed with dementia – in my case, with younger-onset Alzheimer’s.
Here, we get the chance to be a face that people can see. It’s important to show people that it [dementia] happens to regular people, younger than 65.
And at the same time, we are empowered to do a lot of things! We think about things and help each other in any way that we can. When we participate in support groups, we really support one another. We share what’s going on in our lives and what it’s like to live with dementia. We don’t just sit around discussing what stage we’re at now…we live!
It’s so much fun because you can be you! We share things that obviously we wouldn’t share with others. But we can talk that way with one another, and we understand what’s going on with one another, without feeling embarrassed about it.
What is it like to live with these diagnoses?
Living with two diagnoses, I don’t let it get me down because I don’t have time for that. When I got my first diagnosis [of dementia] the doctor told me there was no cure. At least I kind of lucked out on the breast cancer…I’m able to survive that one so far.
It’s just given me more energy to live life. Don’t feel sorry for yourself. I handled it, I came through it and I’m blessed to be cancer-free at this time. Whatever happens, you just live one day at a time.
Having Alzheimer’s, that was a big one. But when I got the cancer on top of that I was like, ‘Whew, that’s a big sandwich to eat’. But I got it down.
As we move through this disease, things are changing. Things happen – you have accidents and become incontinent – different things happen to us along the way. We have more ‘ums’ and more pauses when we talk and things like that. You have the embarrassing things that you do but for me, I’ve always tried to be very positive. Like you look in the mirror and instead of one pair of earrings, you have two different ones on and they’re totally different. But that’s what young people do now – one earring hanging and the other is a stud – do you think I worry about trivial things like that? No.
I’m spending all of my energy to remember other things, so this is not as important as it was before – when I remembered to be “perfect”. As long as I can still remember to go to the restroom, I’m good. Don’t dwell on, ‘oh, now I can’t do this’. So what? Do something else. As you slowly begin to miss things, it’s okay. It’s really okay. You’ve got to laugh with it.
My short term is getting shorter. You can tell me all day to remember to lock the door or remember to do this or that. I may remember and I may not. And those are liabilities that we have to let people know about. We sound great, we look great, we try. But at the same time, we are all less than perfect.
It’s just like playing the piano, you just keep going. If you hit a bad note, keep going and don’t beat up on yourself.
What about your diagnosis? What symptoms were you experiencing and what did the doctors say?
I was beginning to be kind of a slob at home. I was letting things go. At first, I thought it was kind of normal. You know, you get tired, it’s not all that serious. But I used to be really, really neat and my daughter – after the fact – found out that was kind of a signal then that I didn’t know. I was letting things accumulate.
Then one day I went off and left while I was cooking something on the stove. I had left it on, and I had to call the complex to let them know that I had left something cooking on the stove so they could go turn it off and not start a fire.
But the one red light for me happened when I was driving, and I just panicked at a railroad crossing. I didn’t know what to do for a moment. I just didn’t know what to do.
Before that, my doctor thought I was working too many hours or maybe it was my thyroid or maybe it was just life. That I had too much on me. That I wasn’t getting enough sleep, and things like that. But when I shared with him what happened at the railroad crossing, that’s when he really checked it out.
He said I was too young to have what he thought I might have [Alzheimer’s], but he would do the tests anyway. And that’s when they did the neuropsych, CT scan, MRI, and all of that.
When I got my diagnosis, I felt disbelief. I thought it couldn’t be true because I have a brother-in-law that was diagnosed when he was much older, in his late seventies. I didn’t really understand that there was such a thing as younger-onset Alzheimer’s. I had recently started volunteering at the Alzheimer’s Association in Chicago in order to better understand my brother-in-law’s disease. And ironically, now I had it.
When the doctor told me, it took me a few minutes to really ‘get it’. You feel like someone has shocked you. I was stunned. He told me there was no cure but there are medicines to help you get through it. He said he was sorry and to just enjoy your life.
I cried a tear, but I didn’t bust out into tears. And then I told the doctor that when I get to the point where my brother-in-law was – towards the end, where I don’t know who I am – that all I hope is that I think I am Richard Simmons on the Richard Simmons Show. I hope that I have some sparkling shoes that my kids would get me, with a purple tutu. And that I’m out there being that person telling everyone to come out and exercise.
He just burst out laughing.
I just think there has to be a positive ending here. If I’m not going to know who I am, then I hope I pick to be like Richard Simmons. I’ve always liked him.
The doctor thinks I’m going to be okay. That some people are mean, and some people are happy, and he thinks I’m going to be a happy one. I hope so but I’m not going to know it anyways, so what difference does it make?
Then I went to my car and I really boo-hooed. Then I had to tell my family.
I didn’t tell them right away. I sat on it for a couple of days and then I told my husband and my mother. They weren’t really accepting. They didn’t want to believe the diagnosis. And then I finally told the kids.
There was no advice to join a support group or to go out an advocate. All of those things, I did on my own.
The message was that I was on my own. This is your diagnosis and you need to get prepared for it. There wasn’t any motivation to live well with it. I wasn’t given any hope. The picture they paint is that you’re going to die and – because you don’t know about the disease – you think it’s going to be soon. You just get stuck on ‘I’m gonna die’ and ‘I’m not going to know what’s going on’.
I resigned from my job because my doctor told me to enjoy my life and that I didn’t know how long it would be until I “flipped over”. The other reason I resigned was because it was very embarrassing not to remember someone’s name.
I wasn’t on top of my game and I was always a perfectionist. I was forgetting my passwords and how to get into different computer applications. I would be standing there like, ‘Oh, I left that at the office’ and ‘Oh, I don’t know my password for that’. Those were too many Oh’s for me. I didn’t want all of that attention to be on me. Because after a while, it gets old. Being like, ‘Oh, what’s your name again?”. You don’t remember the mayor. Someone is saying hello and you have no idea what their name is.
In the beginning, you don’t know what to say. You can’t get your stories right.
How has your perspective of Alzheimer’s changed over the past five years?
During this journey, I’ve developed my own definition of what Alzheimer’s is. To me, it’s like all of us have a mansion when we are born. This beautiful mansion with fifty rooms or a hundred rooms.
When we first get this mansion, we’re on the upper decks. We’re entertaining and we have everything in the whole mansion: the living room, the kitchen, dining room, formal dining room – everything. But as we progress through this disease, doors of our mansion begin to close. We can’t get to the top floor of the penthouse anymore. It’s closed because we might fall off.
As we go through our disease, we begin to lose different things that we can do. Those doors start to close. We can never go back through there. The kitchen and the office, I don’t have that anymore. But I do have the dancing room and the music room!
You’re going to go through these processes but along the way there are going to be these things that are symbolic of what we can and can’t do. Some of those rooms, the doors have been closed for me. And as we continue through this disease, eventually other doors are closed except for the basement. No lights and a room with no key. Just a bed. And finally, death.
That’s my own vision of Alzheimer’s and I find that it’s a good way to explain it to people who don’t understand. They say I look normal, I sound normal. Yes, I can still do those things but remember the mansion. All those rooms – plenty of rooms – but I can’t live in all of them anymore.
We all have flashes of good days and then days that are not so good. You have to accept it and do the best you can. Don’t beat yourself up when you can’t do what you want or when you’re not at the top of your game. Create a game! Create who you want to be.
When we’re in a support group call, we share what’s going on but at some point, we will stop each other and get back on the joyful things in life. We’re not going to have a pity party. Cry a little bit and then suck it up.
At DAI, the support groups and the people you meet are so enriching. You can say ‘you’re just like me!’. Nobody tells you that you don’t look like you have dementia or that you don’t talk like you have dementia. And that is what makes Dementia Alliance International so good. Because you’re looking at the next person and they look just as normal as you. It makes you feel like it’s okay.
Thank you Terrie for sharing your story with us all.
In this time of COVID-19, when everyone is being asked to keep a distance from each other, and to remain isolated, some groups in our community who already experience social isolation and confinement. This especially includes older people, and those living in nursing homes (residential aged care), as those providing care being encouraged to become more risk averse, benevolent and paternalistic in their approaches to ‘care’.
In part due to these types of responses to the Coronavirus pandemic, DAI Chair, Kate Swaffer felt it timely to report on the current outcomes of a research project she was involved in at the University of Technology Sydney and the University of Wollongong.
The project is called ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’.
The aims of the project were to explore:
current barriers to liberty and community access for people living with dementia in RACFs; and
the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.
The three project outcomes of the project so far include a published article (open access online), an anthology and the project report, as attached below.
Safe and Just Futures was funded by a Dementia Australia Research Foundation Victoria Project Grant, with additional funding support from Law Health Justice Research Centre, University of Technology Sydney.
The research team was led by Dr Linda Steele (UTS), with associate investigators: Kate Swaffer (DAI, UOW and UniSA), A/Prof Lyn Phillipson (UOW), Professor Richard Fleming (UOW), and , and research assistant Ray Carr (UTS).
The research team thank the presenters at the Summit who enriched what was learnt through the data. The project would not have been possible without all of their informed input and enthusiasm. They also thank the advisory group, including:
Tamar Krebs (Group Homes Australia)
Elaine Pearson (Human Rights Watch)
Karen Williams (ADA).
*Reference in Chicago Style:
Steele, Linda; Swaffer, Kate; Phillipson, Lyn; Fleming, Richard. 2019. “Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes.” Laws 8, no. 3: 18.
ATTENTION:DAI members, family, friends, advocates, supporters, and anyone interested in having fun are welcome to join our online event! Join us for soon DAI’s 2020 ANNUAL WORLD ROCKS AGAINST DEMENTIA (WRAD) & CAFE LE BRAIN
Wednesday, March 25, 2020 (USA/CA/UK/EU)
Thursday, March 26, 2020 (AU/NZ/ASIA)
This is one event, set in a number of different time zones, as listed below.
Your hosts are Wally Cox and Alister Robertson
DAI ‘s vision is that all people are valued and included. We also have a strong philosophy that working together makes us all stronger. We believe by doing so, we will achieve more tangible change for all people with dementia and our families.
It is also a chance to destress if you are feeling concerned about COVID-19. Due to the virus, most live events have been cancelled. Thankfully, DAI members are used to online events, so everyone is safe…
Our 2020 WRAD program is almost finalised, and as always, it will be a lot of fun. It incudes some new original performances, written and performed especially for the DAI.
As we have combined it with our montly Cafe Le Brain, there will also be an update about DAI, and lots of time to chat.
Opening and closing live performances are once again by the incredible Graeme Atkins, who supported by his wife, is a wonderful example of living positively, alongside the very real and daily challenges of a diagnosis of dementia. His songs are original, and DAI is grateful to have his friendship and support.
Over the last few months, the impact of the Coronavirus (COVID-19)has taken its toll on many of us. We would therefore like to acknowledge the significant impact the coronavirus (Covid-19) is having on communities and individuals across the world, especially older people and those who are vulnerable.
Our thoughts go out to those who have been directly impacted by this crisis. Our concerns for the wellbeing of our members and their families, and of all others is paramount and we recognise that the indirect elements like self-isolation in response to Covid-19 will also have impacts on many advocacy activities.
The negative impact on people with dementia and our care partners and families has been significant. People with dementia are worried about contractng it, as out immune systems are often lower.
Care partners with a family member in a nursing home, many who are now not allowed to visit, or can only visit with strict entrance protocol, are rightlfully fearful of the potential for the person they love, to die alone, and that they will never see them again.
The necessary social distancing is something many people with dementia already live with on an almost daily basis, but it is definitely worse when the whole world has to do this.
Simple measures such as thorough handwashing, using hand sanitiser if in public places, as well as when you get back home, are sensible. If you do have to meet face to face, stay at least 1.5 metres apart, wash hands before & afterwards.
DAI sent an email to its members, and the full data base today, with various updates as well as notice of a couple of webinarsabout managing COVID-19 on later this week.
It may also be helpful to know that art galleries and other organisations around the world have started promoting virtual tours:
Finally, you may want to watch this update from Professor Huali Wang, who is the Vice President Alzheimer’s China Association, and a member of the World Dementia Council. Professor Wang explains how China has addressed the specific challenges of people living with dementia during these unprecedented circumstances.
In this Dementia Alliance International “Meeting Of The Minds” Webinar, Professor Brandão talks about her journey as a Speech-Language Therapist in becoming a clown facilitator for promoting communication and wellbeing.
She tells the story of the clowning group of older adults living with aphasia with whom she works with in Brazil.
Professor Brandão’s presentation explains the value of nonverbal communication. Additionally, she outlined the key elements that made her choose active clowning as a medium to promote the experience and expression of communicative empowerment. Finally, Lenisa provides an overview of her professional plans in working with clowning and older adults who live with aphasia and/or dementia.
Thank you Lenisa for such an inspiring and informative Webinar.
Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positilvey than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.
Every three seconds someone in the world develops dementia. Globally, more than 50 million people have dementia, with almost 10 million new cases every year. Throughout the world, women are experiencing higher dementia prevalence rates than men and face gender-specific barriers to a high quality of life with the condition.
The impact of dementia is much greater for women than men the world over, as reported by the Global Alzheimer’s & Dementia Action Alliance (GADAA) in 2017. Although this alliance is no longer active, but the website is still available and continues to host information and reports.
Women & Dementia: A Global Challenge reported that dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide. It is now the leading cause of death for women in the UK, and it is the leading cause of death in women in Australia.
However, only twelve countries offer gender-sensitive responses to the disease.
The report found that women provide the majority of both unpaid and formal care to people living with dementia. Two thirds of primary carers worldwide are female, rising to more than 70% in lower and middle income countries. Carers of people living with the condition often have to make changes to their employment situation and women are more likely than men to reduce their hours to part-time, or stop work completely, to provide care to those living with dementia.
Some key facts about Women and Dementia
Dementia is listed by the World Health Organisation in the top five causes of death for women worldwide and is now the biggest cause of death for women in the UK.
Throughout the world, women experience higher dementia prevalence rates than men and face gender-specific barriers to living well with the condition.
Women provide the vast majority of both unpaid and formal care to people living with dementia, with around two thirds of primary caregivers around the globe being women, rising to more than 70% in lower and middle income countries.
The stigma surrounding dementia exists universally and extreme forms of discrimination can lead to the abuse of women. Older women affected by conditions such as dementia are exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition.
A recent UK study identified that women living with dementia are more likely than men to be prescribed psychotropic medication that can negatively affect their physical health.
In the US, 20% of female care partners have gone from working full-time to part-time, compared with only 3% of working male caregivers. 19% of working women care partners had to leave work to provide dementia care in the US.
Yet of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.
Hidden Voices: Women Speak Out on Dementia
On Thursday 19 October international civil society members and policy-makers from around the world came together to learn more about one of the 21st century’s biggest global health priorities and its effect on women worldwide.