Tag Archives: World Alzheimer’s 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.

 

 

 

 

 

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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Bill Corrigan on why he is glad he found DAI

On day 3 of Dementia Awareness Month 2020, DAI member Bil Corrigan shares with us why he is glad he found DAI. Bill lives in Canada. Huntsville, Ontario, and was orignally from Caledon, Ontario. Bill joins the Friday peer to peer support group, joins our cafes and webinars, and participates on many of our Facebook pages and chats as well.

Thank you Bill, for joining us here. We are also glad you joined DAI.

#DAIisLifeChanging

Help people with dementia like Bill by donating to DAI…

Dementia: Language and the media #DAM2015 Day 25

Source: googleimages.com
Source: googleimages.com

Yet again, during another World Alzheimer’s Month, we have been blitzed by articles and stories in the print, radio and print media about dementia, many of them negative, stigmatising and demeaning, and focused on our deficits.

Yet again, many of the stories in the media have been of or by family care partners, researchers or health care professionals, taking about people with dementia, when the people who should be interviewed, are the people living with dementia themselves.

On World Alzheimer’s Day, the media should have been flooded with people with dementia, not people without dementia.

Sadly, it continues, far too often, to be “about us, without us”?

Yet again, people with dementia have been offended and insulted by the continuing use of terms like ‘dementia sufferer’, ‘suffering from dementia’, or being called ‘demented”. They would not call us retarded, we are 100% sure of that!

Yes, this happens even when the person being interviewed or who has set up the interview, has specifically asked the journalist NOT to use those terms.

I attended an event this week, where the journalist who was the MC, was given the dementia language guidelines ahead of the event, but still called us sufferers. When I spoke to her afterwards, she claimed she didn’t know about the guidelines. This is an all too common experience!

The journalists I know personally or have had online discussions with, all proclaim they are professional, yet far too many simply refuse to do the research about, and then actually bother to use, respectful dementia language.

As our advocacy organisations are pushing globally for dementia friendly communities, and using the media in part to promote these campaigns, the time is NOW, that everyone starts using respectful language.

These organisations must also insist the dementia language guidelines are referred to including in-house, if they really are advocating for people with dementia…

No-one can claim to be dementia friendly, if they continue to use language that disrespects the majority of us.

DAI wrote a blog about dementia and the media last year and other people with dementia have been writing about language this month as well.

One of our members who also blogs regularly, Wendy Mitchell in the UK wrote about the importance of language recently, worth reading.

Advocacy organisations all over the world are publishing their own dementia language guidelines. Let’s hope they use them…

Oddly, Dementia language guidelines have been in existence since as far back as 2008, and yet, the media, the public, the health care sector, researchers, and the organisations who say they advocate for us, are still mostly, not using them…

The most comprehensive guidelines are downloadable here:

Alzheimers Australia Language Guidelines 2014

 

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2015