Category Archives: Dementia Awareness Month

Books by people with dementia

For our final day of Dementia Awareness Month, and to further celebrate the voices of people with dementia, two DAI members, Christine Thelker and Kate Swaffer have created a list of books written and published by people with dementia.

In contrast to the vast number of books written by family members or care partners, we could only find about 3 dozen written by people with dementia. However,  they are a unique and honest view into the real lives, of real people diagnosed with dementia.

If you know any that have been missed, please let us know!

Listed in chronological order, to highlight how long people with dementia have been speaking out:

My Journey into Alzheimer’s Disease, by Robert Davis, 1989

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowin, 1994

Losing my Mind: An Intimate Look at Life with Alzheimer’s, by Thomas DeBaggio, 2002

When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s, by Thomas DeBaggio, 2003

Just Love Me: My Life Turned Upside Down by Alzheimer’s, byJeanne Lee, 2003

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden, 2005

Alzheimer’s from the Inside Out, by Dr Richard Taylor, 2006

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowen, 2011

Silent Voices: My Battle With Alzheimers Rages on, by Norman McNamara, 2011

Who will I be when I die? , by Christine Bryden, 2012

From the Corner Office to Alzheimer’s, by Michael Ellenbogen, 2013

On Pluto: Inside the Mind of Alzheimer’s: 2nd Edition, by Greg O’Brien, (1st Edn 2014, 2nd Edn 2018)

Nothing About Us, Without Us!: 20 Years of Dementia Advocacy, by Christine Bryden, 2015

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46, Christine Bryden, 2015

What the hell happened to my brain?: Living Beyond Dementia, by Kate Swaffer, 2016

Diagnosed With Alzheimers Or Another Dementia: A practical guide to what’s next for people living with dementia, their families and care partners, by Kate Swaffer & Lee-Fay Low, 2016

Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia, by Kate Swaffer, 2016

Dementia Activist: Fighting for Our Rights, by Helga Rohra, 2016

Five minutes of amazing: mjourney through dementia, by Chris Graham, 2016

The Lewy Body Soldier: The Lewy Body Soldier, by Norman McNamara, 2016

Walk the walk, Talk the talk, by Keith Oliver, 2016

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, B. Smith, Dan Gasby, et al., 2016

The Dancing Dementia Dude: An Urgent Conversation Between Dementia Folks, Care Partners and God, Dallas Dixon, 2017

Memory’s Last Breath: Field Notes on My Dementia, by Gerda Saunders, 2017

“Was zum Teufel geschieht in meinem Hirn?”: Ein Leben jenseits der Demenz, by Kate Swaffer, 2017

Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain (How to Die Smiling Book 1), by Jarem Sawatsky, 2017

Somebody I Used to Know: A Memoir, by Wendy Mitchell, 2018

Will I Still Be Me?: Finding a Continuing Sense of Self in the Lived Experience of Dementia, Christine Bryden, 2018

A Doctor’s Personal Journey of Hope, by Dr Jennifer Bute, 2018

Talking Sense: Living with Sensory Changes and Dementia, by Agnes Houston, 2018

Dear Alzheimer’s: A Diary of Living with Dementia, by Keith Oliver, 2019

Dementia Strategies, Tips, and Personal Stories, by Myrna Norman, 2020

For this I am Grateful: Living well with dementia, by Christine Thelker, 2020

Slow Puncture: Living Well With Dementia, by Peter Berry, 2020

Sean’s Story: My five tips for living with frontotemporal dementia, by Sean Kelly, 2020

Dignity & Dementia: Carpe Diem: My journals of living with dementia, by Mary Beth Wighton, 2021

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There are now many books which include chapters authored by people with dementia, e.g.

Dementia Rehabilitation, 1st Edition: Evidence-Based Interventions and Clinical Recommendations, Edited by Lee-Fay Low & Kate Laver, chapter 1, Rehabilitation: a human right for everyone, by Kate Swaffer.

The Routley Handbook of Disbility Activism, Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, chapter 10, Dementia as a Disability, by DAI members, Kate Swaffer, Brian LeBlanc, Peter Mittler. This book was the 2019 Outstanding Handbook – Social Sciences – Award Winner.

 

 

 

 

 

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

View our Webinar “Living Life to the full”

Watch our recent webinar, the fist of four focused on rehabilitaiton for people with dementia,  Living Life to the full, by Associate Professor Michele Callisaya and Dr Morag Taylor.

Associate Professor Michele Callisaya and Dr Morag Taylor recently presented to our members and audience a webinar titled, “Rehabilitation to maintain physical function”. Along with thinking and memory, physical function is often compromised in people with dementia. Physical functions include balance, strength and the ability to walk well. Good physical function is important for maintaining everyday activities, whereas poor physical function increases the risk of falls. This presentation outlined the common physical disabilities found in people living with dementia, how thinking and memory influence the ability to walk safely, as well as evidence for treatments to maintain or improve physical function and prevent falls.

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The DAI New Membership Criteria

Dementia Alliance International (DAI) continues with our series of blogs and news as part of our Dementia Awareness Month activities, and today, we are pleased to announce our newly adopted membership criteria.

When DAI launched on 1 January 2014, our membership criteria explicitly stated that to qualify for membership, the applicant needed to have a medically confirmed diagnosis of any type of dementia, which excluded members with a diagnosis of Mild Cognitive Impairment (MCI).

As with all health conditions, research changes things such as the diagostic criteria for a condition, as well as the clinical practice guidelines. Over a period of more than five years, the board and membership has discussed changing this criteria, and after much consideration, and years of reviewing it with dementia experts, academics and clinicians, we have finally moved to update a By Laws in line with the latest in terms of a diagnosis of dementa, as well as to  increase inclusion.

Many experts had previously advised DAI that MCI does not always lead to dementia (some still say, as few as 20%), and hence this group did not meet the original DAI membership criteria. However, others had recommended DAI should have allowed their membership regardless of this, as no-one else is providing support for people in the diagnostic process or with MCI.  We always wanteded DAI to be of, by and for people with dmentia, and also to ensure that people without dementia were not able to take over, as had happened to other self-advocacy groups.

Our motto is still, “Nothing about us, without us”.

On September 14/15, 2021, the DAI board unanimously voted to change ARTICLE II – MEMBERSHIP Section 1 of our By Laws to the following:

ARTICLE II – MEMBERSHIP Section 1 of the DAI By Laws now says:  

Section 1 – Eligibility for membership: Request for membership shall be open to any person living with dementia that supports the Vision and Mission of the organization.

Membership of Dementia Alliance International is free and is open and exclusive to anyone with a medical diagnosis of any type of dementia – Mild or Major Neurodegenerative Disorder.

Membership is granted after the completion and receipt of the electronically submitted on-line request or a written membership request provided to an active member.

Membership may be denied or revoked at any time if it is determined that an individual presents potential risk to others in the organization or to the overall health and wellbeing of the organization itself and the people it serves.

This includes but is not limited to breaches of the member Code of Conduct, and physical and mental hazards such as violence, anxiety and relived trauma [this may include revoking or denying membership of registered sex offenders]. A majority vote of the Board is required for denial or revocation of membership.

Read or download the updated By Laws here.

Bobby Redman, who has recently resigned as a board member and as the Vice Chair of DAI for various reasons, including to take on a national role in another organisation, recently provided the DAI board with the following background and some context to assist us to make this decision.

Background to proposed review

Dementia, as a diagnosis is no longer recognised in the DSM-5, which is the diagnostic manual generally used in the USA, Australia, and New Zealand (the UK use the ICD-10). The official term is now Major or Mild Neurocognitive Disorder (ND) and is therefore a stages approach which would previously have been called early-stage dementia / late-stage dementia.

The term mild cognitive impairment (MCI) that is thrown around by doctors is not a diagnosis, but rather a symptom, think of it like pain, which is a symptom rather than a condition. People may experience some cognitive loss (mild cognitive impairment), but it is only as further deterioration occurs, that it meets criteria for mild or major ND.  

The problem is many people sit with a diagnosis of MCI for years, because too many doctors fail to recognise the difference between MCI and Mild ND, often using the term interchangeably.

If cognition continues to slip, and functioning is declining, it meets the criteria for MILD Neurocognitive Disorder, which then naturally progresses to Major ND over variable lengths of time. There is no Moderate ND and the only difference between Mild and Major ND is the severity of symptoms and the level of impact on independence in everyday activities, which as we all know should be on a sliding scale. We all experience good and bad days – some foggy, some a bit clearer; some days when we can complete activities better than other. Only a few of our DAI members would meet the criteria for Major ND, which would mean that we would be unable to function independently. Most of us whilst not meeting these criteria still require some support or strategies to be able to complete some everyday tasks; we would at this stage be diagnosed with Mild ND, with a specifier such as Alzheimer’s Disease; Frontotemporal lobar degeneration (FTD), due to multiple aetiologies (what we know as Mixed Dementia); Unspecified (what too many people sit with) etc.

Join DAI for free here.

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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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