First person accounts : thoughts and experience of dementia from people living with dementia

With an estimated 46.8 million people worldwide living with dementia in 2015 it is sobering to consider how little information is available from the perspective of those people who actually have a diagnosis of dementia. However in recent years we have seen a considerable change in this space and in this blog we bring you a small selection of some of these powerful stories.

Website: Engage, enable, empower : Living well with dementia – personal storiespersonal-stories

A collection of more than a dozen  stories from people who are living with dementia and actively making the most of life.These short video stories are engaging and varied.




YouTube: Courageous Conversations

This short film series developed by Alzheimer’s Australia NSW, features people living with dementia talking candidly about what people should know about the condition, along with the good and bad that comes with living with dementia.

This includes loneliness as friends no longer visit, a misconception that dementia is contagious, and memory loss. They also talk about the unexpected positive things that have happened following their diagnosis including identifying their self-worth.



diagnosed-with-alzheimersDiagnosed with Alzheimers or another dementia  /  Kate Swaffer & Lee-Fay Low  (2016)

In a first we have a caregiving resource that is written from the viewpoint of a person that has been living successfully with dementia in partnership with a researcher interested in living well in later life and with dementia.

When Kate Swaffer was diagnosed with dementia before her 50th birthday she rejected the prevailing dogma of Prescribed Disengagement TM. She prescribed her own formula of engagement which includes writing – this book is just one of her contributions, studying for her PhD and advocating. And when Kate is not travelling to Geneva to talk to the United Nations or to a conference, she is a wife and a person who wants to enjoy life. In living with dementia, Kate has developed strategies on how to cope with her disAbility. We can all benefit by learning from her.



Step into the world of 65 year old EDIE who is living with dementia. Develop a greater understanding of dementia from the perspective of a person living with it through Alzheimer’s Australia Vic’s Educational Dementia Immersive Experience, EDIE.


dementia-activistDementia Activist: Fighting for Our Rights  /  Helga Rohra  (2016)

‘What’s happening to me?’ Successful translator and linguist Helga Rohra was understandably good with words – that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 – but she hasn’t let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

people-with-dementia-speak-out People with Dementia Speak Out  /  Edited by Lucy Whitman,  (2015)

Twenty-three people from diverse backgrounds share their experiences of living with dementia. The contributors are honest about the frustrations and fears they face, but overall there is remarkably little self-pity and a great deal of optimism. The personal accounts demonstrate that with the right support at the right time, and above all with opportunities to continue to contribute to society in a meaningful way, it is possible to live well with dementia. These fascinating stories bring to life the characters behind the collective term ‘people with dementia’, and show that each person with dementia is a unique individual with their own personality, history, beliefs, cultural affinities and sense of humour, and their own way of adapting to the disabilities and opportunities which this condition confers.

What the Hewhat-the-hell-happened-to-my-brainll Happened to My Brain? : Living with dementia  /  Kate Swaffer  (2016)

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

Before I Fbefore-i-forget-by-christine-bryden_smlorget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)

Some days all I want to do is give up the constant, exhausting struggle and stop trying to be normal. But I can’t. It’s not in me to walk away from a fight. I’ll keep fighting and telling my story. Before I forget.’
When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.
The unusually slow progress of her condition puts Christine in a unique position to describe the lived experience of dementia, a condition affecting tens of millions of people worldwide. In this revealing memoir, she looks back on her life in an effort to understand how her brain – once her greatest asset, now her greatest challenge – works now. She shares what it’s like to start grasping for words that used to come easily. To be exhausted from visiting a new place. To suddenly realise you don’t remember how to drive. To challenge, every day, the stereotype of the ’empty shell’.

nothing-about-us-without-us_smlNothing About Us, Without Us!: 20 Years of Dementia Advocacy  /  Christine Bryden (2016)

Along with her memoir,  Christine also recently published a collection of her hard-hitting and inspiring presentations. Provocative and insightful, the pieces included in this book address issues that demand attention, and should change the way dementia is perceived along with the lives of people with dementia and their families.

From tfrom-the-corner-officehe Corner Office to Alzheimer’s  /  Michael Ellenbogen  (2014)

“My name is Michael Ellenbogen. I am a writer, husband, and father. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways.

When I finally received my diagnosis, of Alzheimer’s, it was a relief to have an answer that explained the symptoms I was experiencing. I had heard of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.”

Website: Dementia alliance international

A myriad of  writings, advocacy and resources for people and by people living with dementia.



Past related posts that may be of interest

Richard Taylor – Collected works – August 2015

From the horses mouth – October 2014

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s