Category Archives: Dementia Alliance International

Extra support during COVID-19

 

 

 

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.

An updated list of the DAI peer to peer support groups

Note: If you are not already in a DAI support group and wish to join one, please contact us at [email protected]

Weekly peer to peer support groups:

  • Mondays 1:30 PM CSTNEW GROUP – co hosts Christine Thelker, Phyllis Fehr and Kate Swaffer, US/CA
  • Mondays 10:00 AM ACST – co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC – co-hosts James McKillop & Dennis Frost, UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST – co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor), AU/NZ/SG
  • Thursdays 1:00 PM CDT – co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT – co-hosts Sid Yidowitch, Dallas Dixon & Kate Swaffer, USA/CA/AU
  • Fridays 2pm ACST – NEW GROUP – co hosts Kate Swaffer and Eileen Taylor, AU/NZ/SG
  • Fridays 2:30 PM CDT – co-hosts Christine Thelker & Diane Blackwelder, USA/CA

Living Alone Social Support Groups

  • Sundays 5 PM GMC, co-hosts David Paulson & Julie Hayden, USA/CA/UK, weekly
  • Sundays 5 PM AEST, co hosts Bobby Redman & Jo Browne, AU/NZ,  NEW – now being hosted weekly

If you are not already in a DAI support group and wish to join, please contact us at [email protected]

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Tackling COVID-19: New Platforms and Resources

The World Health Organisation

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 platform that 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:

Tips for people living with dementia
Tips for carers, families and friends of people living with dementia
Tips for residential care providers
Tips for home care providers

LTC Responses to COVID-19: International Long Term Care Policy Network

Resources to support community and institutional Long-Term Care responses to COVID-19. This website has been assembled by a hopefully growing team of volunteers working on Long-Term Care research, to provide a space to bring together all those really useful resources we were spotting on Twitter. Please join if you can. Adelina Comas-Herrera (@adelinacohe).

Please feel free to contact us if you have other information or sites for us to consider sharing.

 

#Hello my name is Terry

Image source: Terrie Montgomery
Image source: Terrie Montgomery

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.

As individuals, we are responsible for our own thoughts and actions and have the choice each day to “challenge stereotypes, fight bias, broaden perceptions, improve situations, and celebrate women’s achievements”.

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. 

Please support Terrie and all people living with dementia by donating or partnering with us today.

Human Rights in Residential Aged Care

Image source: Devon Bunce. Procuded as part of the Summit: Human Rights for People Living with Dementia

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’.

Different countries seem to have approached the safety and welfare of vulnerable groups in varying ways. For example. in the UK, we have heard anecdotal evidence from colleagues and members that doctors are prioritising the health – and lives – of younger people over older people, and we have heard of many deaths of older people in the UK because of this inhumane approach. In Australia, care providers were advised the following: “We got a sector email yesterday to providers to say that keeping disabled ppl locked up wasn’t environmental restraint if it was for ‘therapeutic’ purposes and on medical advice. “

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.

Journal Article* – Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes (2019)
Authors: Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Anthology – Human Rights for People Living with Dementia: An Australian Anthology (2020)
Edited by Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Project Report – Safe and Just Futures for People Living with Dementia in Residential Aged Care (2020)

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:

  • Dennis Frost
  • Tamar Krebs (Group Homes Australia)
  • Lynda Henderson
  • Elaine Pearson (Human Rights Watch)
  • Bobby Redman
  • Dubhglas Taylor
  • Eileen Taylor
  • 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.

Managing the Coronavirus

 

 

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:

The World Health Organisation – COVID-19 – is providing updates for individuals and organisations almost dail; sign up for their  updates, and read more about what you can do to protect yourself and your family here…

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.

 

Watch our Webinar: Clowning and Dementia

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.

Donating or partnering with us will make a difference to the lives of people with dementia.

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI

Read our newsletters or regular blogs, by subscribing to them.

Dementia and Wayfinding, by Dr Neubauer

In August 2019, Dr Noelannah Neubauer presented a #DAI Webinar, “The changing face of dementia and missing person incidents: The International Consortium on Dementia and Wayfinding”. Watch her presentation here:

The number of lost and missing person incidents involving those living with dementia has been on a rapid incline in recent years. Despite the increasing number of available strategies to lessen this issue, research focusing on managing and preventing lost incidents among those living with dementia is limited and few key stakeholders, such as persons with dementia have been involved. International collaborations looking at this issue from a global scale has also yet to be explored. This has led to the formulation of an international consortium on dementia and wayfinding.

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.

Make a difference by Donating or Partnering with DAI

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI

Read our newsletters or regular blogs, by subscribing to DAI

Assistance dogs for people with dementia

Phil Hazell with his Assistance dog, Sarah

In our October 2019 “Meeting Of The Minds” Webinar our two speakers talk about the value of assistance dogs for people with dementia.

Professor Kevin McVilly presented on a project on Assistance Dogs for people with Young Onset Dementia; 3-year study. This project documented the experience of 14 people with Young Onset Dementia and their families, over a 3-year period, of having a trained assistance dog.

Phil Hazell shared his personal expeience of Living with Sarah: the value of assistance dogs for people with dementia, and his story of being diagnosed with younger onset dementia, and the value of having an assistance dog. His presentation considered the benefits such as increased Self Esteem, Purpose in Life, Independence, Freedom and importantly, increased quality of life and well-being. Phil also discussed some of the challenges, or what he calls a ‘reality check for those considering an assistance dog, and the joys.

Vew the presentation below, and download their power point slides here…

 

Introducing the 2020 Board of Directors

DAI is very pleased to introduce the 2020 Board of Directors, and to inform you of DAI’s updated Governance structure.

This year, we have included two positions for people who are not DAI members, which is not different to other organisations who have staff, except that ours are not yet able to be paid. One day, we aspire to have paid roles, for staff, including members.

2020 Board of Directors:
Chair/CEO, Kate Swaffer, Australia
Vice Chair, Alister Robertson, New Zealand
Treasurer, John Sandblom, USA
Eileen Taylor, Australia
Wally Cox, USA
Christine Thelker, Canada
James McKillop, Scotland, UK
Bobby Redman, Australia
Bill Turner, Australia

Two new non member (volunteer) positions:
Secretary, Sarah Yeates, Australia
Finance Officer, Tamara Claunch, USA

Most other organisations usually have many staff in paid roles, but due to a lack of funding, DAI is still not in a position to  do so. We remain indebted to both Sarah and Tamara for their willingness to give of their time freely, for the benefit of members and supporters of DAI.

Three Working Committees:
Internal Affairs
External Affairs
Governance

Within these committees, there is a permanent Finance and Fundraising Sub committee, an Action group, a Membership sub committee, and other teams (or committees) as required.

Professional Advisory Council:
This new group consists of a number of global dementia experts, researchers, medical doctors, an attorney, a CPA and others, to be announced soon.

Please note, our updated By Laws will be added to our website as soon as they have been finalised.

Finally, our Annual General Meeting (AGM) is to be moved to June each year, and the new board positions elected at this meeting will be effective in the next fiscal year. All of these changes have been approved in ine with our By Laws, and to improve our governance.

Listen to Alister Robertson in our first VodCast on why he believes in the work and vision of Dementia Alliance International…

About our new Vice Chair: Alister is from Napier in New Zealand was diagnosed with younger onset Alzheimer’s in 2014. Soon after his diagnosis he was fortunate enough to attend a day programme run by Dementia Hawkes Bay, which he now attends three days a week. Alister has become an active member of DAI, having been involved in our Action Group and Board. This week, at our AGM, he accepted the nomination as Vice Chair in 2020.  He is also a very active advocate for raising awareness of dementia in NZ and globally.

DAI members also wish to thank our strategic partners and sponsors, and every single person who so generously makes a donation to DAI.  Without your donations and sponsorship, we could not continue to provide free membership and services to our members and supporters.

Thank you. 

Happy New Year & Happy 6th Birthday DAI lo

Welcome to 2020, and Happy 6th Birthday, and congratulations to everyone at Dementia Alliance International (DAI) for such a successful 2019.

Today we share some of our achievements for 2019, which include (but are not limited to) the following:

  • Celebrating our 5th birthday on this day last year! Special thanks to Graeme Atkins for his delightful song
  • Our continued strategic partnership with Alzheimer’s Disease International; we thank them for their continued sponsorship and support
  • Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
  • Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
  • The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
  • Collaboration with the Alzheimer’s Society UK and the 3 Nations Dementia Working Group on a Directory of Resources on advocacy, and a short video: The Many Voices of Dementia, released in July
  • DAI held its first Capacity Building Workshop in Las Angeles in July
  • DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
  • Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
  • A second volunteer, Tamara Claunch from Houston Texas joined  long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
  • Membership is increasing steadily
  • Increases to additional new free members services, including, for example two Living Alone Social peer to peer support groups
  • Updates to many of our Governance documents and By Laws, soon to be announced and shared
  • It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
  • We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
  • The WHO launched their new Quality Rights initiative and Toolkit. DAI members Professor Peter Mittler and Kate Swaffer both contributed significantly to this on behalf of DAI
  • Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
  • Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
  • We have two formal publication in progress, finally, to be released sometime in 2020
  • Finally, please find the time to complete the DAI Survey on Advocacy and involvement in Dementia Research and Policy; Responses are needed by January 15, 2020. Thank you.  

Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.

DAI thanks you all for your hard work.

DAI Survey on Advocacy & Involvement in Dementia Research & Policy

DAI wants to hear ALL of the voices of dementia, and invites YOU to have YOUR say. This includes, but is not limited to:

  • People with dementia
  • Care partners
  • Families
  • Researchers
  • Policy makers
  • Advocacy organisation staff
  • Health Care Professionals

Dementia Alliance International (DAI) wants to hear from you about your experience being involved in advocacy, research or policy.  If you are a person with dementia, a supporter or family member, a researcher, or dementia policy maker- please consider completing our short survey and help shape the future of dementia advocacy.

You can complete the survey here: https://www.surveymonkey.com/r/SurveyDAI

In many countries, policy makers, researchers and service planners are increasingly valuing the inclusion of lived experience advocates with dementia and care partners in projects. At the same time, there continues to be challenges in understanding what involvement should mean, who should be involved and how their involvement will be supported.

This research will help to identify the next steps in ensuring meaningful and valued participation and involvement of people with a lived experience of dementia. DAI will be releasing a publication mid-next year which will include recommendations about next steps.

Don’t miss your opportunity to have a say and be part of this important work.

Any questions about the Survey can be sent to [email protected].
Or complete the survey here: https://www.surveymonkey.com/r/SurveyDAI

The deadline to complete this survey has been extended to  February 7, 2020.