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?

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