Category Archives: Dementia Awareness Month

Read the DAI 2021 Global Report

NEWSFLASH: DAI GLOBAL REPORT 2021

Valuing the advocacy of people with dementia: moving dementia out of the shadows

DAI is pleased to launch a new 2021 Global Report on World Alzheimer’s Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.

“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research.  However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.

Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some  of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued.”

We have added the Table of Contents as a way of quickly highlighting what is inside our publication.

Table of Contents

About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
– Involvement as a right
– Involvement which leads to better outcomes
– Involvement which brings personal benefits
Examples of International Leadership in Involvement
– UK- DEEP
– Australia- Cognitive Decline Partnership Centre (CDPC)  
– Ireland- Irish Dementia Working Group
– Scottish Dementia Working Group
– United States- Early-Stage Advisory Group
– Japan- JapanDementia Working Group
– Ontario Dementia Advisory Group (ODAG)
– European Dementia Working Group
– Alzheimers New Zealand and Alzheimers NZ Advisory Group
– Dementia Advocacy Canada (DAC)
– Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
– Appendix 1: Additional resources and practical guides on involvement
References
Endorsements

Also available to download on our website publication page.

About the author:

Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development.  This paper was completed as independent work separate to her other roles.

Ellen is currently the CEO of Down Syndrome Australia and  is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer’s Australia).  She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.

Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer’s Australia when this committee was founded.

Suggested citation:

Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.

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Christine Thelker wins the 2021 recipient of the Richard Taylor Advocates Award

It is World Alzheimer’s Day, and DAI is thrilled to announce one of our Alumni Board Members, Christine Thelker from Canada is the recipient of the prestigious 2021 Richard Taylor Advocates Award.

We congratulate Christine, and also want to share some of her story, including this interview with Kate Swaffer about winning this award.

Christine Thelker receives the 2021 Richard Taylor Award

 

Finally, read why Christine was nominated by DAI member, Debbie Kaey.

Please explain why you believe Christine Thelker is a worthy candidate for the Richard Taylor Advocates Award:

First, Christine Thelker has opened a door for living with dementia that is “real”, not trying to paint an unrealistic picture of what living with dementia is like. Her relationship with the dementia community is vast and respected. She is\was an active board member, active in membership committees, action committees, host and co host, for support groups, webinars, cafe’s and special events with many dementia based and other community groups. She brings speakers to DAI for webinars, and puts together things like World Rocks Against Dementia.

Recruiting new members, she has developed one on one relationships with people living with dementia. She is not only a major promoter of DAI, she is an active Board member of DAI. Within the dementia community she is a liaison with other groups such as Dementia Advocacy Canada. Currently she works with people waiting for diagnosis until such time they are able to become members of DAI. Part of the Ed-Sig group (an environmental Dementia Special Interest Group out of Singapore) which is under the DAI umbrella. She also works with the Canadian Consortium of Neurodegenerative, Age well Canada, TREC ( Translating Research into Elder Care.

She writes for the Dementia Connections Magazine, along with several others like the Vernon Seniors Action Network ( VSAN). There are many more groups she is involved with but her love of and belief in DAI is well documented (eg: many interviews, articles as well as having written a book (eg: second one in the works).

Her support of so many has gained her much respect. She is a caring, sensitive and encouraging person, never dismissive, an empathic listener and is honest, “real” and has a gentle personality that invites you into her world, whether you have dementia or not.

Wise and discerning, she really does listen to a person’s narrative, reflecting back what they are feeling and thinking and not trying to offer personal opinion, but sage suggestions, allowing a person to walk the journey in their time.

I am honoured to know her. Her work speaks for itself and opens many doors for others, giving and not holding back anything she knows. She is very humble and I was so pleased she accepted this nomination. I hope you find in favour of this nomination.

Sincerely, Debra Anne Keay

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Quotes, from one of Christine’s presentation, at the ADI conference in Chicago in 2018:

A song by James McKillop

James McKillop, Scotland

We are thrilled to highlight this wonderful collaboration during Dementia Awareness Month 2021, a song written by of one of our past board members, and a long time pioneer dementia advocate, James McKillop, with a musician, Gus Harrower.

James has written many songs, poems and stories since being diagnosed, and was delighted that Gus worked to produce it as a song.  #WAM2021

Thank you James and Gus!

This song was featured on the 31st August 2021, as part of the Life Changes Trust online conference ‘Community & Dementia: Creating Better Lives in Greater Glasgow and Clyde’. They started the conference with this song, written bys James McKillop, who lives with a diagnosis of dementia in Glasgow.

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