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The Global Voices of Dementia: Resources for self-advocacy

July 16, 2019

The global voices of dementia self-advocacy

Dementia Alliance International (DAI), the Alzheimer’s Society UK,  and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.

The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.

Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.  

As part of the project two resources were created:

Christine Thelker’s story

The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.

 After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.

Hilary Doxford’s story

Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.

I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.

5 Top Tips from self-advocates

 “Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia

“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada

“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA

“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.

“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.

For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:

The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are  people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.

With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.

By working together, the impact of self advocacy makes a much bigger difference.

Global self-advocates who feature in the film and supported the project (Left to Right): Amy Su, Dennis Frost, Kate Swaffer, Kris, Christine Thelker, Agnes Houston, Hilary Doxford, Petri Lampanen and Veda Meneghetti.




Brian Le Blanc: Into the fog

It’s wonderful to share a recent Vimeo produced sharing the story of Brian Le Blanc with our other DAI members. Brian is a past Board Member of DAI, and an active advocate and international speaker.

He was diagnosed with Younger Onset Alzheimer’s disease (Early onset is the term used in the video). Thanks for all you do Brian and for this insight into your life with dementia.

Two of the founders of DAI (the late Dr Richard Taylor and Kate Swaffer) almost always ended their emails with ‘Onwards and upwards in the ever increasing fog!’

Fog is a definitely a good way to describe it!

And it’s a heartwarming break from the COSP this week!

Civil Society forum at the COSP

Tamara, Kate and Christine

This week Dementia Alliance International (DAI) is representing its members, and indeed, all people with dementia globally in New York at the Conference Of the State Parties (COSP) on the Rights of Persons with Disabilities (CRPD).

Christine Thelker braved travelling alone from Canada, and arrived in spite of a complete lack of disability support from Westjet airlines. Kate Swaffer traveller”d from Australia, also alone thankfully with excellent disability support. Airlines and airports in particular have a long way to go!

DAI is very blessed to also have a volunteer attend to support them this year, Tamara Claunch from Houston, who’s also a member of our soon to be announced Professional Advisory Council.

Remarkably, she has self funded to support our organisation, and we thank her sincerely for this incredibly generous gift to us all.

Stay tuned here, as our next blog will provide the times and the link to the first ever Side Event at this Conference on dementia as a disability.

The link to the United Nations live tv can be accessed here to watch the proceedings.

It may not be obvious to all, but this week really is one of the most significant actions of advocacy to improve the lives of 50 million people currently living with dementia.

June Webinar: Living with dementia in New Zealand

Join us for the next DAI “A Meeting Of The Minds Webinar, Living with dementia in New Zealand, presented by Liz Smith.








Please note: this is one event, set in a number of different time zones.

About the Webinar: Alzheimers New Zealand asked Litmus to research what it is like to live with dementia. For the research, we talked to people with dementia, their care partners, and couples living with dementia. I want to share what I learned from listening to 49 New Zealanders living with dementia. These people generously shared the stories of their lives after receiving a dementia diagnosis, the support services they need, how they live meaningful lives, and the impact on their relationships.

In the webinar, Liz will share six findings from the research.She has chosen these findings as they made her reflect on my understanding of dementia and challenged my attitudes.

About our speaker: Liz is a co-founding partner of Litmus – a leading research, evaluation, and design agency in New Zealand. She says: I have a curious mind. I am a solution seeker. I never claim to know the ‘right’ answer, but I have the tools and expertise to find one. I am a champion for equitable health and disability services. I believe people’s stories matter. Understanding people’s lives are central to creating positive system and social change. I have led research into the lives of disabled people, people living with cancer, families with disabled children, people living remotely, and those living with addictions.

I am happiest when I step out of my comfort zone, and I am dealing with complex issues and working with multi-disciplinary teams. I have worked on some of the leading social issues facing New Zealand – bowel screening, cancer care, well child, and mental health and addictions.

Register here…

Wednesday, June 26, 2019 (USA/CA/UK/EU)

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, June 27, 2019 (AU/NZ/JP/SGP/TWN/CHN)

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Check your time if not listed above by using this link:


  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…




  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees


Dementia as a Disability

Announcing the DAI Side Event during 12thSession of the Conference of States Parties to the UN CRPD.

Dementia Alliance International is pleased to announce we have been accepted to host a Side Event at the upcoming 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York on June 13, 2019. We are honoured to have a number of co hosts supporting this event, and to be supported by the United Nations and World Health Organisation, as well as the Australian government.

Dementia: the leading cause of disability

DAI Side-event during 12thSession of the Conference of States Parties to the UN CRPD

In 2019, the Dementia Alliance International (DAI) is celebrating 5 years of existence, and at this Side Event, we recognise the progress that has been made by people with dementia in the advancement of the rights of persons with dementia, as persons living with acquired cognitive disabilities.

Through the side-event, DAI aims to highlight the progress made towards claiming their rights as persons with cognitive disabilities over the past 5+ years, aiming to highlight dementia as a disability, and identify areas of further collaboration between the members of DAI and its international partners and all relevant stakeholders, including United Nations agencies.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries.

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care.


We are honoured to have Mrs. Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities to open the Side Event. Other speakers will discuss the relevance of their work to dementia as a disability; e.g. Bethany Browne from Human Rights Watch will discuss the abuse through chemical restraint of people with dementia living in USA nursing homes, from the Human Rights Watch report, “They Want Docile.”

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening the Side Event

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “QualityRights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

Background and history

Dementia Alliance International (DAI) is a 501(c)3 registered charity, and is the world’s leading organisation exclusively for people diagnosed with any type if dementia. It is an advocacy and support group of, by and for people with dementia, and the “theglobal voice of dementia”currently representing members in 49 countries. DAI’s vision is “A world where people with dementia are valued and included”. DAI represents the 50 million people currently living with dementia, and the projected 82 million in 2030 and 152 in 2050. Our membership is currently represented in 49 countries around the world, including many members living in the Low and Middle Income Countries.

From grassroots advocacy to global activism, DAI seeks to claim the human rights of people with dementia and ensure that our rights as disabled persons are secure. Dedicated to empowering all people to live a better life with dementia, DAI believes in the power of energy, creativity, human connections and joy as the shared inheritance of every human on earth. Our members advocate and educate locally, nationally and internationally. We speak at professional conferences and lead vast online communities of people. We work to reduce stigma and discrimination, bringing awareness to the truth that life can be well-lived beyond any diagnosis or disability, including dementia.

Concluded by the OECD in 2015, “people with dementia receive the worst care of any disease in the developed world” and indeed, DAI members report, anywhere in the world.

While it is challenging to fix serious problems that are global in scale, we have done it before. As a species, we have eradicated smallpox and polio. We have increased global life expectancy and we have reduced global childhood mortality rates.

The challenges we face are big, but this will not drive us to inaction and hopelessness, for we each carry the burden of making things better in our own chosen sphere.

We didn’t choose to have dementia, but we do choose to work towards a world where we have equal social inclusion as all others, and full and equal access to universal health care, including rehabilitation, and proactive disability assessment and support immediately after a diagnosis.

At Dementia Alliance International, we believe it is imperative to change misconceptions about dementia, address stigmas associated with it, discourage psychological and physical abuse of all disabled people, and demand that the voices of people with dementia be included in decisions directly affecting us. The stigma and discrimination experienced by people with dementia – and their families – is very real and incredibly disabling. Countering the myth that people with dementia go from the point of diagnosis, immediately to the end-stages of the disease, is extremely important.

At present, people with dementia are disenfranchised upon diagnosis. Our legal and social status is immediately reduced, and our human rights are stripped away.  We are excluded from equal and full inclusion in public spaces and activities and even viewed by some as “less than human”. Much of our work centers on reducing stigma and discrimination, bringing awareness to the truth that life can be well lived beyond any diagnosis – including dementia. Disability rights are another important arena. Like other disabled persons, we have the right to equal and full inclusion in public spaces and activities. And with appropriate disability support, we can continue to live meaningful and positive lives.

The misguided under-estimations of the potential of people with dementia continue to create oppressive and humiliating barriers to our full and equal engagement in society, and the continuing major breaches of our human rights through the systemic and endemic overuse of chemical and physical restraints, and though segregation and institutionalisation continue. Hence DAI members individually and collectively advocate for rights, and educate locally, nationally and internationally, at professional conferences, and in the vast online communities they have built, so that we are not reduced in legal or social status. DAI is dedicated to empowering all people live a better life with dementia.  It advocates for the right to equal and full inclusion in public spaces and activities.

DAI Chair, Kate Swaffer was an invited keynote speaker at the WHO First Ministerial Conference on Dementia in March 2015, and made rights and access to Universal Health Coverage the focus of her presentation. DAI’s global focus has been on human rights and disability rights, and we continue to work with organisations such as the World Health Organisation (WHO), the United Nations and others, to ensure that since the WHO Global action plan on the public health response to dementia 2017 – 2025, was adopted, national, regional or local dementia plans will include human rights, and people with dementia have full and equal access to the CRPD.

DAI is working hard towards ensuring dementia is not left behind in the 2030 Agenda, and its Sustainable Development Goals’ are not only achieved, but that dementia is also realised as a condition causing cognitive disabilities in its own right.

Co-sponsors: the Australian Government, the International Disability Alliance, Human Rights Watch, Alzheimer’s Disease International, Worldwide Hospice Palliative Care Alliance, and the Global Rehabilitation Alliance.

Download the event flier here…

Report: Forgotten in a crisis

ADI, GADAA and Alzheimer’s Pakistan launch report on Dementia in Humanitarian Settings
Forgotten in a crisis: Addressing dementia in humanitarian response, published yesterday by the Global Alzheimer’s and Dementia Action Alliance (GADAA) with ADI and Alzheimer’s Pakistan, has revealed that people with dementia are being ignored in times of humanitarian crisis.
This report contributes to a growing awareness of the need to address disability in humanitarian settings and is the first report to specifically highlight dementia.  
While there are guidelines in place to mandate inclusive support for people at-risk, they are rarely being implemented and do not currently go far enough to meet the specific needs of people with dementia, according to the report.
Paola Barbarino, CEO of Alzheimer’s Disease International, said: 
There are 50 million people living with dementia globally, 60 per cent in low and middle income countries where diagnosis is low and humanitarian emergencies are widespread. These people are currently ignored in emergency response planning. We are calling on all agencies to increase awareness and to adapt strategies, to better recognise the needs of this often hidden group.”

Dementia Alliance International was pleased to contribute a small part to this very important report.

A new type of dementia identified?

A paper published in the journal Brain (30 April) has identified a brain disorder that appears to mimic the clinical features of Alzheimer’s disease. Known as LATE (Limbic-predominant Age-related TDP-43 Encephalopathy) it appears to be linked to the accumulation of a protein, TDP-43, in the brain, while Alzheimer’s disease is more commonly linked to two other brain proteins – amyloid and tau.
The authors of the report say that LATE appears to affect the “oldest old”, people over 80, based on work that looked at evidence from thousands of post-mortem results.
It raises interesting and challenging questions around diagnosis; how to test people non-invasively and cost effectively. It raises questions around clinical trials and ultimately it will pose questions around treatment options. It is not yet known how many people may have LATE.
Dr Alireza Atri, Co-Chair of ADI’s Medical & Scientific Advisory Panel, said “This timely consensus workgroup report supports an accumulating evidence-base regarding the importance of determining the independent and inter-related contributions of multiple disease pathways to late-life cognitive decline, impairment and dementia.
Future treatments are unlikely to be highly effective unless we learn to more accurately diagnose and use combinations of targeted and personalized approaches to impact all the factors relating to aging, Alzheimer’s disease, and non-Alzheimer’s disease that often combine to cause symptoms in an older individual.” 
Kate Swaffer, Chair and CEO, Dementia Alliance International said, “This latest research is of great interest to Dementia Alliance International members, as many are regularly challenged about the validity of their own diagnoses, especially those living with younger onset dementia.
Whilst it relates to older adults with cognitive decline, the more research that supports a more accurate diagnosis of AD, will not only lead to more targeted research and hopefully treatments, it will ultimately be reflected in increasing the accuracy of all diagnoses of dementias.”
Dr Atri offers a more detailed review of the report, Limbic-predominant age related TDP-43 encephalopathy(LATE): consensus working group report below:
“Never Too LATE to Improve Our Understanding of Conditions and Diseases that Cause Late-Life Cognitive Impairment and Dementia.
This report, a Workgroup diagnostic guideline paper (Nelson et al. Brain 2019) , provides an important pathway to advance understanding and research on conditions and diseases that impact late-life cognitive decline and dementia syndromes (changes in cognitive abilities sufficient to impact daily functions and behavior).
This important evidence- and expert-based research formalizes terminology and provides consensus guidelines for diagnostic and staging criteria for a protein-related disease (aka. proteinopathy) due to TDP-43 protein that has been, in the last 15-25 years, increasingly reported to produce Alzheimer’s disease (AD)-like dementia symptoms by causing conditions such as Hippocampal Sclerosis and Age-related TDP-proteinopathy.
The Workgroup coined the term LATE (Limbic-predominant Age-related TDP-43 Encephalopathy) for such TDP-43 proteinopathy conditions that cause cognitive impairment and dementia (CID) and provides evidence to support that LATE is a disease that may cause or contribute to CID in 15-20% of older-old individuals (those older than 80-85 years of age).
In the last two decades, multiple lines of evidence, particularly from long-term brain donation autopsy research studies, have made it increasing clear that cognitive and behavioral changes and symptoms in older-old individuals, that are sufficient to produce CID syndromes, are due to a confluence of multiple conditions that impact cognitive functions.
While brain changes due to AD, defined by the presence of amyloid-beta protein plaques and tau-protein tangles, are commonly observed in autopsy studies, there is likely more often an interaction of several conditions, such as vascular brain injury (VBI), and other proteinopathies such as those caused by alpha-synuclein proteinopathy (Lewy Body Disease) and TDP-43 proteinopathy (LATE), that combine to produce symptoms in the older-old.
Therefore, in a substantial number of older-old individuals, what can appear in the clinic to be very similar to CID symptoms due to Alzheimer’s can be caused by LATE or by the combined effects of LATE with AD and related conditions. As well as sharing common symptoms with typical dementia due to AD, particularly problems with learning and forming new memories, the report also outlines how LATE shares some common risks with AD (such as age and genetic features) and findings on brain imaging, such as shrinkage of hippocampus and medial temporal lobes.
The Workgroup’s formalized recommendations and diagnostic criteria are important to promote awareness in the medical, scientific, and patient communities and in the general public. The guidelines are also crucial to stimulate interdisciplinary research to better diagnosis and treat LATE during life, including by use of biomarkers to exclude AD (e.g. spinal fluid or PET scan signatures related to AD), and the development of specific LATE-related biomarkers, and prevention and treatment approaches.
It’s never too late to learn and be smarter and wiser about investigating multi-factorial approaches to combat the complex and inter-related conditions and diseases that causes CID.”

Webinar: Staying engaged without driving

Please join us for this important presentation and conversation, our April 2019 “A Meeting Of The Minds Webinar”

Title: Staying engaged without driving

Presenters: Dr Jacki Liddle and Dr Theresa Scott

  • Tuesday April 23, 2019
  • Wednesday April 24, 2019

NOTE: This is one event in different time zones.

Register  here…

About the Webinar:
Some people say that stopping driving is the “hardest thing” they face in living with dementia. Our research has explored people’s experiences related to stopping driving, the involvement of health professionals and key times when support is needed. The talk will draw on this to cover ways to prepare, decide and adjust emotionally and practically to life without driving. It will highlight ways to stay engaged in the community and in meaningful activities. It will also show advice for health professionals and family members for ways they can assist people who are retiring from driving. The CarFreeMe program is an example of an education and support program helping people with stopping driving, and we will give an overview of this and ways people could get involved.

About our speakers:
Jacki: Dr Jacki Liddle is an Occupational Therapist and Research Fellow. She is involved in researching life transitions, ways of supporting community engagement and ways of measuring meaningful outcomes. Her research with people living with dementia includes codesigning technology and supporting community mobility, particularly after driving cessation.

Theresa: Dr Theresa Scott is an NHMRC-ARC Dementia Research Development Fellow and a Psychologist at The University of Queensland. Her fellowship research is focused on the complex issues around dementia and driving. She is particularly interested in how driving cessation might be better managed in primary care settings and in supporting people living with dementia who are transitioning to retirement from driving

Tuesday, April 23, 2019 (USA/CA/UK/EU):

11:00 am Honolulu
2:00 pm Oregon Portland/San Francisco USA/Vancouver CA
4:00 pm Des Moines/Chicago USA
5:00 pm New York USA/Toronto CA
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU

Wednesday, April 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):

6:30 am Adelaide AU
7:00 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
5:00 am Perth AU/Taipei TWN/Beijing
6:00 am Tokyo, JP
9:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time if not listed above by using this link:

See you there!


  • DAI Members or their care partners: FREE
  • Employed people: $50:00 USD
  • Full time Students: $25:00 USD



  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI

Become a DAI Associate or Strategic Partner today

Volunteer for DAI


Invisible, by Paul Hitchmough

Special thanks to Howard Gordon from the UK , for liasing with Paul Hitchmough who also lives with young onset dementia to be able to show the following performance at our ecent WRAD. The video also features dementia advocate Tommy Dunne who lives with dementia, diagnosed in 2009, and his lovely wife Joyce. It was produced by Crosstown Studios in 2018.

This really wonderful song and its message is for all people with dementia. We are not, and should not be forced to stay  invisible.

Invisible, by Paul Hitchmough

Getting in the mood for WRAD2019!

This video is of DAI member, Graeme Atkins from Australia, who wrote and performed this song especially for our 5th birthday this year.  Very special thanks to Graeme, and also to his wife who supports him to live so positvely with dementia.

We are posting it here today, to get us in the mood for our World Rocks Against Dementia online event, being held on March 22/23, 2019.  Register here now, if you haven’t already done so!

Happy 5th Birthday to DAI