The dementia Australia NSW blog *Younger Onset Dementia and ME*

*The dementia Australia NSW blog *Younger Onset Dementia and ME* is a place for people to connect with others, to get information and helpful suggestions.

A diagnosis of younger onset dementia can be very isolating. You may have received a diagnosis, be someone who is caring for a family member, or you may have a mum or dad with younger onset dementia. You are not alone. The National Younger Onset Dementia Key Worker Program provides individualised information and support to improve the quality of life for people with younger onset dementia and also see NSW - Younger Onset Dementia . For more information contact the National Dementia Helpline on 1800 100 500.

Wednesday, 6 January 2016


These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on

Coping with early-onset dementia by Jill Eckersley (2011)
Younger people with dementia face a number of special challenges. Although they have a diagnosis of dementia, they may still be working and have dependent children and family commitments. Also, they may be physically fit and find it not only to deal with losing their mental faculties, but also the stigma attached to the condition. Consequently, this guide is designed to help them cope with their condition.
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

Tracy & Jess: living with Early Onset Alzheimer's DVD Directed by James Dreyer
Of the millions of people living with Alzheimer's disease, only 5 to 10 percent develop symptoms before age 65. Experts estimate that some 500,000 people in their 30's, 40's, and 50's have Alzheimer's disease or related dementia. "Tracy & Jess: Living with Early Onset Alzheimer's" is the amazing story of two women diagnosed with the disease at early ages. The film focuses on the challenges and triumphs of Tracy, Jess, and their families.

The long goodbye DVD (2010)
Our brain makes us who we are, it gives us our memories, our abilty to think, to understand the world around us and it gives us our sense of self. All this is slowly stripped away for a person living with dementia. The Long Goodbye follows three families as they struggle to maintain the identity and dignity of those we love. Filmed over a 3 year period, the documentary celebrates the capacity of the human spirit to search for meaning and hope when the end is known and inescapable.
The three families are at different stages of the condition and they offer their own unique perspective. Michael, a criminal barrister with four dependant children was diagnosed with early onset Alzheimer's disease at the age of 49. Michael retains insight and articulately shares his thoughts and feelings from within the disease.
Early onset memory loss : a conversation with Letty Tennis DVD
One thing that inspires me is my family and friends... it makes me feel good that they are my little cheerleaders."
Ms Tennis courageously and honestly presents her reactions to her progressive memory loss. This program represents her effort to reach out to others affected by memory loss and to break down public misconceptions about people with memory-impairing illnesses.

Jan's story : love lost to the long goodbye of Alzheimer's 2010 by Barry Petersen and Jan Chorlton Petersen
Jan 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.

Reflections : John & Yolanta : experiencing younger onset dementia DVD 2009
John was an elite air force pilot who was diagnosed with Alzheimer's disease at age 52 years. In this DVD John, his wife Yolanta and friend Dave chronicle the impact of John's diagnosis upon their relationships and lives.
This DVD 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. Such as denial and humour, carer stress and the inner man. Highlights the need for friends. This 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.

Younger onset dementia a practical guide by John R. Hodges
You’re too young for dementia” is often the reaction of health professionals, family and friends of people with dementia because society associates dementia with older adults. Advocacy on the many issues that impact on the lives of those with younger onset dementia has become an important part of the work of Alzheimer’s Australia in recent years.   The objective of this publication is to draw together information on younger onset dementia and provide practical information for those newly diagnosed as well as their families and carers.

In our own words : younger onset dementia : a collection of very personal stories (2008)
this collection of very personal stories contains insights into living with younger onset dementia

Still Alice (2009) by Lisa Genova
Alice Howland is proud of the life she worked so hard to build. 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.

2 young 4 dementia : meeting the needs of people with younger onset dementia (2008)
The term younger onset dementia is used to describe any form of dementia diagnosed in people under the age of sixty-five. Dementia in younger people is much less common than dementia affecting people over the age of sixty-five and may be difficult to diagnose. However, correct diagnosis is important. The most common cause of younger onset dementia is Alzheimer’s disease. Other types of dementia such as frontotemporal dementia, vascular dementia, acquired brain injury, and alcohol related dementias are more common in younger onset dementia than in those with dementia who are over the age of sixty-five. Several types of younger onset dementia are hereditary. Genetic screening may therefore be considered by family members in certain situations. Provides care support which is responsive to the specific nature of dementia. Underpinning knowledge addressed in the competency is not repeated in this resource, it provides additional knowledge to meet the needs of a specific group of people with dementia whose needs are often different to those experienced by older people.

Losing Clive to younger onset dementia : one family's story (2009) by Helen Beaumont
Clive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before.
Clive's wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia.
Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.

Don't bury ain't over yet (2006) by Charles Schneider
Former Policeman and current Fireman, at the age of 52 learns that he is in the first stages of Early Onset Alzheimer's disease. In this book Charles shares how he prepared himself and his family for his impending decline. He takes the reader on a journey through his past as he dissects the build-up to this earth shattering moment He searches through pivotal moments in his past for insight to the first signs of his disease, possible contributions to his current illness, and how these events aided him in dealing with what he now must face-that he will lose control over his mind, and that the people he loves the most will witness it. This book offers inspiration to those living with AD, other various long-term ailments, caring for a challenging person, and humans who recognize and finds encouragement in knowing that everyone struggles in life-some even struggle with dialing a long-distance phone number. I have been reluctant to read books of doom and gloom and was glad to find that this is not one of those books. Reading this book made me more sensitive to all the other strugglers and uplifted by their determination. I did learn a lot about how Alzheimer's disease affects those with the disease. But it is not just a story about Alzheimer's it's a story about overcoming the many obstacles in life.

Larry's way : another look at Alzheimer's from the inside (2003) by Larry Rose
once a person has been diagnoses with Alzheimer's disease, they become discouraged, frustrated, depressed and angry. Larry is different. While obviously not welcoming his illness, he has turned his feeling and insights toward writing this book.

Young hope the broken road (2007) by Tracy Mobley
Top Secret Tips Unveiled Within! Journey inside the Authors world of what it is like to only be in your forties and have younger onset dementia. Includes Contents: PART I -- Young hope - four years later -- Our story -- Early onset Alzheimer’s Disease -- PART II -- Symptoms & stages -- What about a doctor? -- Can medications help? -- Loss of independence * coping strategies -- Accepting the disease -- Denial of loved ones -- Hazards in the home -- PART III -- Explaining Alzheimer’s Disease to children -- Laughter is the best medicine -- The challenges we face -- Those that we miss -- Living with Alzheimer’s Disease -- The caregiver’s perspective -- PART IV -- Safe return -- Where are we now?

Alzheimer's from the inside out (2007) By 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.

Remember me, Mrs V? : caring for my wife: her Alzheimer's and others' stories (2007) by Tom Valenta
A moving memoir of a husband caring for his wife, Marie, who was diagnosed with Alzheimer’s disease at age 54. Tom describes his struggle of looking after his wife, arranging professional and voluntary in-home support and continuing to work. Ultimately he is forced to seek permanent residential care for Marie. There are thirteen cameos of other carers and how they dealt with a family member who was stricken with Alzheimer’s or other form of dementia. This book will be of great assistance to all men and women caring for a loved one.  Tom Valenta is a public relations consultant, author and former journalist. He is currently a Principal of the large public relations firm, Porter Novelli. He sold the family business to Porter Novelli after Marie’s diagnosis. His wife, Marie, is a former primary school teacher. Their story has received extensive national publicity over the past three years including a double-page spread in TIME magazine.

Be with me today : a challenge to the Alzheimer's outsider DVD (2009)
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.

Who will I be when I die? (1998) by 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. Her 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.

Show me the way to go home (1996) By Larry Rose
Larry Rose was a vital, gifted engineer in his forties when Alzheimer's struck. In this first-person account, Rose shares his heartbreaking and sometimes heartwarming skirmishes with a disease he has been battling since its diagnosis in 1992. His resilience, courage, and optimism are phenomenal as he copes with the anger, fear, and loneliness of an illness that is stealing his mind. With his friend and caregiver Stella providing support, Rose remains an independent man who drives alone to his cabin in the Ozark Mountains and volunteers to take experimental drugs. This remarkable work shows the disease's effects not only on its victim but on those who encounter him--from devoted café cronies to a supposed friend who cheats Rose out of a large sum of money. This is an inspiring account of a man of acceptance, wisdom, and faith who is fighting the good fight with the hallmark grace and humor of the truly brave.

Living in the labyrinth : a personal journey through the maze of Alzheimer's (1993) by Diana Friel McGowin
Living In The Labyrinth is the story of  how one woman found the strength and the courage  to cope with a devastating disease that has  afflicted five million Americans. Far from being an  exercise in self-pity or a standard autobiography,  this is an unflinching and ultimately uplifting look  at a debilitating illness from the inside  out.

Max: A younger person's journey with dementia DVD (2010) 
Max Sims was 54 years old when he was first diagnosed with Alzheimer's disease. In this short film Max and his wife Sandra talk honestly and openly about the imapct the disease has had on their lives, their experiences, and how they have coped with the journey so far.

Just love me : my life turned upside down by Alzheimer's by Jeanne L. Lee  (2003)
Just Love Me reveals the thoughts and emotions of a woman struggling with a suddenly unmanageable life; numerous hospitalizations, suicide attempts, everyday turmoil, and finally, the arduous search for an accurate diagnosis of the illness responsible for it all: Alzheimer's disease (AD). This account is unique in that most books on the subject of Alzheimer's are written by a carepartner or medical professional. Jeanne Lee's very personal, frank description of her life experiences before, approaching, and during the early stages of AD enables readers to better understand the disease from the inside out; a view not often seen by non-sufferers. By getting inside the mind of the author and experiencing with her the worries and frustrations that constantly torment her, the symptoms of AD become less enigmatic for the reader.

Swimming through treacle : living with Alzheimer's disease  by  Margaret Parnham  (2005)
People have asked me what it's like to have Alzheimer's. To me it is like swimming through treacle – almost everything is difficult.' Swimming through Treacle is Margaret Parnham's detailed account of her battle with Alzheimer's disease and her decline as the disease took hold. A trained Occupational Therapist and Rehabilitation Professional, Margaret felt the disease 'crept up on her like a slow, damp fog'. The book begins with Margaret's diagnosis and then goes on to describe her symptoms, her love of animals and her memories of long ago. Margaret's diary which she started writing upon being diagnosed with the disease is the last chapter in the book. Swimming through Treacle is a wonderful, if not sad, read and provides readers and co-suffers alike with an insight into Margaret's struggle and the demons of Alzheimer's disease.

Dancing with dementia : my story of living positively with dementia  by  Christine Bryden  (2005)
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.
A 'roller-coaster' journey since early 1998 -- 'Coming out' with dementia -- Let's talk about having dementia -- I know who I'll be when I die.

Dementia Advocacy and Support Network International (DASNI)
Abstract: DASN International is an internet based support network established to: Promote respect and dignity for persons with dementia; provide a forum for the exchange of information; encourage support mechanisms such as local groups, counseling groups and Internet linkages; advocate for services for people with dementia; and assist people to connect with their local Alzheimer’s association.
Since its founding in 2000, DASNI has evolved as an international group of people with dementia. Approximately one-third of members have dementia themselves.
DASNI activities currently include an Internet-based support group for people with various dementias and those involved with our well-being. DASNI has an email community. Twice-daily Internet chats in a chat room help ease the isolation of dementia and educates participants about living with their diseases.

Voices of Dementia Journal by Dr Richard Taylor
Dr Richard Taylor has been a powerful force since being diagnosed with memory loss.  He has written a book “Alzheimer’s from the Inside Out.”  He has been invited to speak around the world.  His newsletter is filled with wonderful resources and has a refreshingly honest voice of his personal thoughts and insights regarding Alzheimer’s disease.  Now Richard is rolling out one more innovative resource … Voices of Dementia