From the horse’s mouth: information about dementia from people with dementia

Today’s collection of resources focuses on what we refer to as ‘first person accounts’ — books, videos, DVDs and blogs created by people with dementia.

For people with dementia, these are valuable resources and the authors of these various works are keen to share their personal experiences and how they would like the world to respond to and interact with them. For others, such as carers, family, friends and health professionals these stories are a very important insight into the experience of dementia and how people with dementia would like us to ‘be’ when with them.

Still Alice coverFiction: Still Alice, Lisa Genova

This fictional account of dementia is meticulously researched and very accurately and honestly portrays a Harvard University professor’s experience of Alzheimer’s Disease. As well as the protagonist’s own perspective on her dementia, she also describes how she experiences interactions with her husband, children, students and co-workers as her disease progresses.

This is a wonderful book, with a well-crafted story which is both compelling and completely believable as well as factually correct.

YouTube: Dementia: My Story, Kate Swaffer

Kate Swaffer was diagnosed with dementia at age 49. This 2 minute clip describes her feelings when she was first diagnosed with dementia.

who_will_i_be_when_i_die_webFirst person account: Who will I be when I die?, Christine Boden

For many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then. Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Hebe_with_me_today_webr story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

DVD: Be with me today : a challenge to the Alzheimer’s outsider, Richard Taylor

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

YouTube: What Dementia Is To Me, Dr Jennifer Bute

Dr Bute is a doctor who has been diagnosed with dementia. In this short film she talks honestly but positively about the challenges of living with dementia and what is helpful to her in managing her day-to-day life.

can_I_tell_you_about_dementiaFiction: Can I tell you about Dementia?, Jude Welton

Meet Jack – an older man with dementia. Jack invites readers to learn about dementia from his perspective, helping them to

understand the challenges faced by someone with dementia and the changes it causes to memory, communication and behaviour. He also gives advice on how to help someone with dementia stay as mentally and physically active as possible, keep safe and continue to feel cared for and valued.

With illustrations throughout, this useful book will be an ideal introduction to dementia for anyone.

Blog: Creating life with words: Inspiration, love and truth, Kate Swafferkswaffer_blog

kateswaffer.com is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones.

while i still canFirst person account: While I still can…: one man’s journey through early onset Alzheimer’s disease, Rick Phelps [& Gary Joseph LeBlanc]

Rare is the opportunity to experience the nightmare of Early Onset Alzheimer’s Disease from the perspective of a patient. In his book, While I Still Can, Rick Phelps, the founder of “Memory People”, an online Alzheimer’s and memory impairment support and awareness group, changes that. Diagnosed at the age of 57 with this fatal disease, Phelps has decided it was time the veil was lifted. Throughout this book the reader is given a firsthand account of the early signs that Phelps experienced before being diagnosed with EOAD, the loneliness he felt during the denial period of family and friends and the terror that gripped his heart upon receiving the undeniable diagnosis. Phelps then describes how he and his loved ones have learned to cope since his diagnosis, finding the will to continue to live and love everyday, while he still can.

alzheimers_from_the_inside_out_webFirst person account: Alzheimer’s from the inside out, Richard Taylor

Receiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others. With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood, unwanted personality shifts, communication difficulties, changes in relationships with loved ones and friends, the declining ability to perform familiar tasks. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

dancing with dementiaFirst person account: Dancing with dementia : my story of living positively with dementia, Christine Bryden

Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences. This book is a vivid account of the author’s experiences living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband, Paul, she continues to lead an active life nevertheless, and explains how professionals and caregivers can help.

YouTube:Hello Dinner, Richard Taylor

In this brief video Richard Taylor talks about the benefits of connecting with people with dementia, in terms of a social network, as a person with dementia. It is an articulate and compelling perspective from someone who is living the experience of dementia.

understanding dementiaNon-fiction: Understanding Alzheimer’s: The complete Australian guide to the management and prevention of Alzheimer’s, Professor Ralph Martins

The book is aimed at those in the early stages of the disease, as well as the families, friends and professionals who take on the care of Alzheimer sufferers. There are chapters on diagnosis, research, prevention, treatment, legal issues, impact on loved ones and decision making to do with caring for patients. In addition to practical information and advice, each chapter contains a case study; these detailed accounts provide a personal and heartfelt perspective on the disease. An Australian book, it’s packed with information from Australian experts, and is a welcome addition to information in the field.

Help Sheets: Information for people with dementia, Alzheimer’s Australia

Alzheimer’s Australia have a series of Help Sheets for people with dementia. Our entire series is listed here:

1. About you… What is dementia?

2. About you… Early planning

3. About you… Looking after yourself

4. About you… Driving

5. About you… Living alone

6. About you… Feelings and adjusting to change

7. About you… Keeping involved

8. About you… Talking about the diagnosis

9. About you… Talking with your doctor

10. About you… Making employment decisions

11. About you… How Alzheimer’s Australia can help

You can access these Help Sheets here, please note that you will need to scroll down the page to the heading Information for people with dementia and click the heading to access the Help Sheets.

Younger Onset Dementia

Younger Onset Dementia describes any form of dementia that has an onset of symptoms before age 65. It currently affects 24,000 Australians*.  Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

In our publication Younger Onset Dementia: A New Horizon? (2013) Alzheimer’s Australia make the observation that even with a diagnosis, there are few services designed to provide appropriate care and social support for younger people and their carers. Individuals with younger onset dementia face a unique set of challenges with changing financial circumstances, limited access to appropriate services, new social challenges and often too frequently fundamental changes to their relationships with family and friends**.

I think, dear readers, that one of the nicest things about the internet is that it gives us all the opportunity to share our experiences, thoughts and insights. Today we’ve pulled together resources on Younger Onset Dementia and hope that you find these as useful, thought-provoking and touching as we did.

YouTube short film: The Music in Hugh: A Look at Young Onset Dementia

In this completely gorgeous short documentary, son Max talks about the impact of younger onset dementia on his father, himself and his family.  Max shares his experience with touching candor and very importantly has found a way to reconnect with his father through music. Max’s thoughtful narrative on the importance of seeing his father as a person, not a patient or collection of symptoms is inspiring.

Fiction: Still Alice, L. Genova

Still AliceStill Alice is a fictional account of Alice Howland, a Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong. She finds herself in the rapidly downward spiral of Alzheimer’s Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Book cover Coping with Early-onset Dementia Guidebook: Coping with Early-onset Dementia, J. Eckersley

This is a helpful, no-nonsense guide Coping with Early-onset Dementia to confronting, accommodating and planning ahead for younger people with dementia. As well as acknowledging the special challenges facing people with younger onset dementia this guide also emphasises that there is still life to be lived, for both those with dementia and their carers. Topics covered include:

  • types of dementia, including Alzheimer’s disease
  • managing dementia on a day-to-day basis and dealing with common problems
  • obtaining support that is appropriate for younger people with the condition
  • treatments and new drugs in the pipeline
  • dealing with practical issues, such as work, driving and obtaining benefits
  • support for families, carers and children
  • care as the condition progresses – day centres, respite care and residential care
  • the relationship between dementia and genetics
  • complementary therapies
  • further resources

Memoir: Jan’s story : love lost to the long goodbye of Alzheimer’s, B Peterson

JansStoryJan Petersen was vibrant, active, healthy, and just 55 when she was diagnosed with Alzheimer’s. Barry was not even slightly prepared for what happened to her, and how it would impact his life when “forever” suddenly and terrifyingly has an expiration date. Jan’s Story is a very personal memoir on the impact of younger onset dementia.

DVD: Reflections: John & Yolanta : experiencing younger onset dementia

Reflections DVDJohn was an elite air force pilot who was diagnosed with Alzheimer’s disease at 52. In this DVD, John, his wife Yolanta and friend Dave chronicle the impact of John’s diagnosis upon their relationships and lives. Reflections: John & Yolanta: Experiencing Younger Onset Dementia is suitable for the families of people diagnosed with dementia at a younger age, and deals with many of the issues other families in a similar situation may face. The DVD is also relevant for health professions, as it highlights the complexity of life with younger onset dementia, and raises awareness about the particular issues affecting younger people.

Sign up: HOPE – Younger Onset Dementia newsletter, Alzheimer’s Australia

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.  Take a look at our website page for HOPE where you can access previous editions and/or sign up for the newsletter by emailing hope.news@alzheimers.org.au.

Other information on Younger Onset Dementia

Younger onset dementia factsheets, Alzheimer’s Australia

Younger onset dementia tip sheets, Alzheimer’s Australia

Younger onset dementia forum, Alzheimer’s Australia

In our own words : younger onset dementia : a collection of very personal stories, Alzheimer’s Australia

The Long and Lonely Road: Insights into living with Younger Onset Dementia, Alzheimer’s Australia

Garry’s Dream, The Lovell Foundation  – The Lovell Foundation and Alzheimer’s Australia Vic have set an objective to promote the development of a quality long term accommodation facility for people diagnosed with Younger Onset Dementia.

Younger Onset Dementia and Me blog, AANSW blog – a place for young people with parents with younger onset dementia to connect with others, to get information and helpful suggestions and a place to be listened to.

When Dementia is in the House website, Dr T Chow and K Nichols  – Dementia resources for parents and teenagers

Younger people with dementia factsheet, Alzheimer’s Society UK

* Australian Institute of Health and Welfare (2012) Dementia in Australia.

** Alzheimer’s Australia (2013) Younger Onset Dementia: A New Horizon?