Frontotemporal dementia

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Frontotemporal dementia (FTD), also referred to as frontotemporal degeneration, is a spectrum disorder  describing a range of conditions that affect the frontotemporal lobes. FTD typically affects younger people, with symptoms often beginning in people’s fifties or sixties or even younger.

The different frontotemporal dementias can be divided into three broad categories; behaviour, language (referred to collectively as primary progressive aphasia or PPA), and movement.

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Dementia Australia support and resources

Dementia Australia and the Australian Frontotemporal Dementia Association (AFTDA) have joined forces to increase access to support for people living with frontotemporal dementia, their families and carers.

Read the full media release

Visit the Dementia Australia web pages on frontotemporal dementia


 

greeennailsGreen Nails and Other Acts of Rebellion: Life After Loss by by Elaine Soloway (2012)

After more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change—exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration—a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor.

Available from the Dementia Australia library in hard copy or Ebook


greenvanillatea.jpgGreen Vanilla Tea: One Family’s Extraordinary Journey of Love, Hope, and Remembering by Marie Williams (2014)

 Marie Williams writes poignantly of her husband Dominic’s struggles with early onset dementia and amyotrophic lateral sclerosis (ALS) at the age of 40, and how their family found hope amidst the wreckage of a mysterious neurological condition.
 
As the condition develops and progresses, the normally devoted family man and loving partner seems to disappear beneath an expressionless facade, erratic behavior, and a relentless desire to wander that often leaves him lost. The road to diagnosis is long and confusing, and what starts off as perplexing for the family then becomes frightening. The man they love is changing, and no one seems to know why. He no longer turns up to his sons’ high school events. He falls and bumps into things. He becomes verbally disinhibited, emotionally disengaged, and, at times, belligerent. He doesn’t seem to be able to read the social cues of other people. He gets lost in familiar places, as well as on obsessive work trips overseas. He recklessly spends the family money, leaving them in near financial ruin. Despite this, Williams and her children strive to find new ways to keep him safe and to connect with the husband and father they love so dearly.

Available from the Dementia Australia library in hard copy or Ebook


 

where the light gets inWhere the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley 

Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on Nashville, or the wife of country megastar Brad Paisley. But in 2014, Williams-Paisley revealed a tragic secret: her mother had been diagnosed with a rare form of dementia called primary progressive aphasia at the age of sixty-one.In Where the Light Gets In, Williams-Paisley tells the full story of her mother’s illness, from diagnosis through the present day, drawing on her memories of her relationship with the fascinating, complicated, and successful woman who raised her so well. She describes educating herself on her mother’s condition, letting go of the shame and secrecy that surrounded it, and finding unexpected humor and grace in a terrible situation. Her book also chronicles the ways in which her family’s bond was strengthened by the experience, to becoming an awareness advocate, to accepting the woman her mother has become.

Available from the Dementia Australia library in hard copy or Ebook

 


hodges frontotemporal dementiaHodges’ Frontotemporal Dementia  /  Dickerson, Bradford C. [ed.]  (2016)

Clinical and scientific interest in FTD and related disorders continues to grow rapidly, with major advances having occurred since this book’s last publication. New clinical diagnostic criteria were published in 2011; new pathological discoveries have led to new diagnostic criteria; and major genetic discoveries have been made. This new edition covers these developments, providing the leading resource on FTD, PPA, PSP, CBD, FTD-ALS, and related disorders, now written by a more internationally representative group of authors than before. Providing an in-depth and expert synthesis of the status of our knowledge of FTD and related syndromes, the content includes chapters reviewing clinical, neuropsychiatric, neuropsychological, imaging, and other features of FTD and multidisciplinary approaches to patient management.

Available from the Dementia Australia library


frontotemporal-dementia_2014Frontotemporal dementia by Bruce L. Miller (2014)

Frontotemporal Dementia provides an in-depth look at the history, various types, genetics, neuropathology and psychosocial aspects of one of the most common but least understood causes of dementia, frontotemporal lobar degeneration, from one of the world’s leading centres for the study of dementia. Aided by the latest research in diagnosis, mechanism and treatment, this book captures the rich and quickly changing landscape of a devastating neurodegenerative disease, and offers up-to-date clinical advice for patient care. Frontotemporal dementia, in particular, raises psychological and philosophical questions about the nature of self, free will, emotion, art and behaviour – important topics for practitioners and families to appreciate as they care for the person with dementia. This book includes case studies, photographs and figures from the leaders in the field and personal communication from the researchers driving these developments.

Available from the Dementia Australia library


human frontal lobeThe human frontal lobes : functions and disorders edited by Bruce L. Miller and Jeffrey L. Cimmings.  (2017)

Leading experts from multiple disciplines address the anatomy and chemistry of the frontal cortex, neuropsychological assessments of capabilities unique to the frontal lobes, the nature of (and possible treatment avenues for) frontotemporal dementia and related conditions, and implications for understanding and treating neuropsychiatric disorders, such as schizophrenia, mania, and depression.

Available from the Dementia Australia library


Websites

FTD Toolkit – Eastern Region Cognitive Disorders Clinic

ER FTD toolkit

The toolkit is organised into a series of stand-alone modules. Accompanying power point presentations for the main modules will be due for release by the end of 2011. The modules are designed to provide accessible summary level information without overwhelming amounts of specialist detail. Presentations may be used to train health professionals or provide community information sessions. All modules include reference to scientific publications, websites, and other resources where indicated.


The Association for Frontotemporal Degeneration (America)

This site has  easy to read helpsheets about some of the FTD sub-types and information about the FTD Disorders Registry (FTDDR) an international contact registry for people living with FTD and their families who would like to receive information updates about FTD and current research.

Visit website

 


Video

What is frontotemporal dementia? – Alzheimer’s Society UK (2017)

 


 

teepa snow_understanding frontotemporal dementiasUnderstanding Frontotemporal Dementias  /  with Teepa Snow  (2014)

Learn with Teepa Snow – Why proper screenings truly matter, and where to get them – About causes and symptoms of different types of FTDs – Which changes happen in the brain, and how they affect the person with FTD – How to deal with challenging behaviors without sacrificing the relationship – Which medications can help or potentially cause harm – How to best manage the disease with current treatment options – Why supportive communication and a positive physical approach are vital to offer the greatest quality of life, for the person with FTD and caregiver alike.

Preview


looks-like-lauryLooks like Laury, sounds like Laury (2015)

At the age of 45,  Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.
This film captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.
The film came about when her friend Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!”
Preview


Recent articles

Frontotemporal dementia: the real lived experience  /  Reinhard Guss & colleagues  (2018)
Severe symptoms are to be expected in people with behavioural variant frontotemporal dementia, at lease according to the official diagnostic criteria. But is this always the lived experience? Interviews conducted which told a rather different story.
The Journal of Dementia Care Vol 26 No 5 September/October p. 28-30

Take the time to understand  /  Dennis Frost  (2018)
An excerpt of a speech at an event hosted by Dementia Australia, Parliamentary Friends of Dementia, at which presenters spoke about living with dementia. Dennis Frost was diagnosed with frontotemporal dementia shortly after his 59th birthday.
Australian Journal of Dementia Care Vol 7 No 4, Aug/Sep 2018, p10-11

 

Available from the Dementia Australia library

 

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Younger onset dementia

 

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In 2018, there is an estimated 26,443 people with younger onset dementia in Australia, expected to rise to 29,375 people by 2025 and 42,252 people by 2056

Younger onset dementia describes any form of dementia that has an onset of symptoms before age 65. 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.

This post looks at some recent resources around younger onset dementia as well as revisiting some older favourites.


Dementia Australia help sheets 


 Prescription for life (2016)

Lovell-ebook

The Lovell Foundation has teamed up with Edith Cowan University (ECU) and not-for-profit aged care and retirement living providers Bethanie and Mercy Health, to develop an  innovative educational toolkit to support carers of people living with Younger Onset Dementia (YOD).

The e-flipbook incorporates pre- and post-knowledge tests, which will allow anyone who completes the book to be credited with professional development.

Download the free E-Resource

 


somebodyIusedtoKnowSomebody I Used to Know  /   Wendy Mitchell and Anna Wharton  (2018)

When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run – the various shades of her independence – were suddenly gone.

Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.

 


young onset dementia_ 2018Young onset dementia : a guide to recognition, diagnosis, and supporting individuals with dementia and their families  /  Hilda Hayo, Alison Ward, and Jacqueline Parkes (2018)

The book explores the experiences of people living with a diagnosis of young onset dementia through detailed case studies, and gives learning points to implement in practice for the better provision of appropriate support and care. It explains the need for adapting services which are often designed for older people, and how the complicated diagnostic process can lead to misdiagnosis among younger people. Key issues are considered, including at-risk groups, work and dealing with potential loss of employment, changes in personal and family relationships, readjusting life expectations and plans, and social isolation.

 


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Supporting people with younger onset dementia in the National Disability Insurance Scheme (NDIS) / Dementia Australia (2017)

The National Disability Insurance Scheme (NDIS) is the new way supports will be provided to eligible Australians with a disability or disease such as younger onset dementia.

The purpose of the NDIS is to provide people with greater choice, individualised support and the flexibility to manage these supports.

People living with younger onset dementia are now better equipped to understand and navigate the NDIS through the release of the NDIS Toolkit for People Living with Younger Onset Dementia and their Carers 

 


before I forget_lge.jpgBefore I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)

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’. Brave and inspiring, this is Christine’s legacy for people with dementia and those who care about them.


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Dementia Australia Quality Dementia Care Series

Quality Dementia Care 5 (2015)
Younger onset dementia: a practical guide
Quality Dementia Care 4 (2013)
Understanding younger onset dementia 

 


what-the-hell-happened-to-my-brainWhat the Hell Happened to My Brain? : Living beyond dementia  /  By 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. Kate’s powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis.


Fiction

rain birdsRain birds  /  Harriet McKnight.  (2017)

Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present.
Nearby, conservation biologist Arianna Brandt is involved in a project trying to reintroduce the threatened glossy black cockatoos into the wilds of Murrungowar National Park. Alone in the haunted bush, and with her birds failing to thrive, Arianna’s personal demons start to overwhelm her and risk undoing everything.
At first, when the two women’s paths cross, they appear at loggerheads but – in many ways – they are invested in the same outcome but for different reasons.
Ultimately, unexpected events will force them both to let go of their pasts and focus on the future.

beforeyouforgetBefore you forget  /  Julia Lawrinson (2017)

Year Twelve is not off to a good start for Amelia. Art is her world, but her art teacher hates everything she does ; her best friend has stopped talking to her ; her mother and father may as well be living in separate houses; and her father is slowly forgetting everything. Even Amelia.

 

 

forgetting-fosterForgetting Foster  /  Dianne Touchell  (2016)

‘Foster suddenly recognised the feeling that rolled over him and made him feel sick. It was this: Dad was going away somewhere all on his own. And Foster was already missing him.’ Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories. But then Foster’s dad starts forgetting things. No one is too worried at first. Foster and Dad giggle about it. But the forgetting gets worse. And suddenly no one is laughing anymore.


For more resources see our 2013 post on younger onset dementia

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Lewy body disease (Lewy body dementia)

You may already know that dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Lewy body disease is one of the diseases that causes dementia.

This post provides a set of resources specifically about Lewy body disease.

lewy body dis alzaust webpageWebsite: Lewy body disease, Alzheimer’s Australia website

This webpage gives a succinct, plain-English overview of Lewy body disease. It is useful as an introductory document and as a resource to share with family and friends who wish to learn more.

YouTube: Let’s Talk About Lewy Body Disease, Alzheimer’s Australia Vic, 2012

This series of online videos feature Robin Groves, who was diagnosed with Lewy body disease in 2006 and his wife Lis. They discuss how Lewy body disease has affected their lives, including some of the challenges they have faced. The resource is divided into three chapters.

Chapter 1: Robin and Lis

Robin and Lis talk frankly about the condition, and about the changing behaviours Robin experiences.

Chapter 2: A typical case?

Discusses signs and symptoms of the illness.

Chapter 3: Visiting the doctor

Identifies strategies to ensure the doctor or medical professional gets the information they need to provide appropriate ongoing care.

emerging from the shadowsBook:  Emerging from the shadows by 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.

teepa snow_lewy body dementia_webDVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)

Learn:
– about common LBD symptoms
– how to get a good and complete diagnosis
– about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
– how to adapt your caregiving skills to the needs of a person with LBD
– how to utilize visual and verbal cues to increase understanding and cooperation
– about hands-on skills for LBD
Includes practical information on mid to late stage dementia, sleep problems, hallucinations, practical tips on daily care, activities of daily living, medication issues , and how to talk to doctors about medications – it is a very hands on approach . It also describes how Lewy bodies are more prevalent than previously thought.

a carers guide to Lewy body dementiaBook: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth  (2010)

Although Lewy Body Dementia is the second leading cause of degenerative dementia in the elderly, it is not well known or understood and is often confused with Alzheimer’ Disease or Parkinson’s. A Caregivers Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy Body Dementia really is.
A Caregivers Guide to Lewy Body Dementia is written in everyday language, and is filled with personal examples that connect to the readers’ own experiences. It includes quick fact and caregiving tips for easy reference, a comprehensive resource guide, and a glossary of terms and acronyms.

This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.

Dignifying Dementia a caregivers struggleBook: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)

A powerful, beautifully-written account of the author’s nine-year journey to care for her husband, who has Lewy Body Dementia. Elizabeth Tierney’s book is moving, harrowing, fascinating and instructive. It is also the story of one woman’s determination to honor her husband’s humanity and how she succeeded against all odds – a triumphant love story.

Helpsheets: Lewy body disease helpsheets, Alzheimer’s Australia

Alzheimer’s Australia has produced a collection of helpsheets about Lewy body disease, covering different aspects of this disease and targeted to different audiences.

LBDA websiteWebsite: Lewy Body Dementia Association, Inc.

This American association is specifically devoted to Lewy Body Dementia and may include useful information for people with Lewy body dementia, their families and carers.

living with lewy body dementiaBook: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings  (2014)

If you’re struggling to care for someone with Lewy Body Dementia, or any Parkinson related disease, and you are looking for some professional help in dealing with the many difficult or awkward situations that arise, then this book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.

The book is informative: Certainly it provides “meat and potatoes” suggestions for any caregiver, but it is much more than that. Anyone choosing to read this book will have a better understanding of the role of a caregiver, and how we have many positive moments sandwiched among the more challenging. It is a faith-based self help book. I expected God to show up every day and thankfully He always did. (the author)

Graphic Novel: Dad’s Not All There Any More : A Comic About Dementia by Alex Demetris (2015)

dad's not all there anymor“Louie what?” John’s dad, Pete, was already diagnosed with Parkinson’s disease when he began to have some very strange experiences, not least of which was the little red-haired girl who followed him around the house. Eventually diagnosed with Lewy Body Dementia (LBD), his hallucinations and other symptoms became more frequent and intense, and Pete moved into a care home. Based on his family’s experience of his father’s LBD, Alex Demetris’ comic explores with tenderness and humour one of the most common yet often unheard of types of dementia; what it is, its symptoms, living in a care home and the impact on people living with the condition and their families.

activities for the family caregiver LBDBook: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)

From the groundbreaking series written specifically for family caregivers, “Activities for the Family Caregiver – Lewy Body Dementia: How to Engage / How to Live” offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living tips, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure.

dementia with lewy bodiesBook: Dementia with Lewy bodies and Parkinson’s disease dementia  /  edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu  (2006)

Filling a noticeable gap in the market for a new text solely focused on Dementia with Lewy Bodies, this book discusses cutting-edge topics covering the condition from diagnosis to management, as well as what is known about the neurobiological changes involved.   With huge progress having been made over the last decade in terms of the disorder’s recognition as a common cause of cognitive impairment, its clinical features, its underlying neurobiology, investigative changes, and management, this is undoubtedly a much-needed work in what is an important and rapidly progressing field.  Written by leading figures in dementia research, this clearly presented, modern text is equally accessible to clinicians such as old-age psychiatrists, geriatricians and neurologists, as well as allied health professionals with a particular interest in the area.

Recent dementia publications

This post identifies some recent publications on dementia. These books are all available from the library – if you can’t make it to our Hawthorn location we encourage you to call us on 03 9815 7800 and we can organise to send books to you. Remember, we do need you to be an Alzheimer’s Australia Vic member to provide this service.

Book: Where the Light Gets in : Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley, Foreword by Michael J Fox, 2016

where the light gets inMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. “Where the Light Gets In” tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, “Where the Light Gets In” is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.”

DVD: Looks like Laury, Sounds like Laury, Pamela Hogan & Connie Shulman, 2015

looks like lauryWhat would you do if you started to disappear? At the age of 45, our friend Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.

The film came about when Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!” Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns. Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

We started filming during a hopeful period, with no idea of what lay ahead.

Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

Book: A caregiver’s guide to dementia : using activities and other strategies to prevent, reduce and manage behavioral symptoms, Laura N. Gitlin, Catherine Verrier Piersol, 2014

a caregiver's guide“Mom has nothing to do—I’m concerned about her quality of life.”
“My husband gets agitated when I need to leave the house—I don’t know what to do.”
“My father keeps asking the same questions over and over.”

These are some of the common challenges encountered by individuals and families who are caring for a parent, spouse or close relative with dementia. This easy-to-use, practical guide is designed to help at-home caregivers navigate these daily challenges. Although there is no cure for dementia or its many behavioral symptoms, there are clear and proven strategies that can be used to enhance the quality of life for persons with dementia—strategies that can make a real difference for their families.
A Caregiver’s Guide to Dementia explores the use of activities and other techniques to prevent, reduce and manage the behavioral symptoms of dementia. Separate sections cover daily activities, effective communication, home safety and difficult behaviors, with explicit strategies to handle] agitation, repetitive questions, acting-out, wandering, restlessness, hoarding, resistance to care, incontinence, destructiveness, sexually and socially inappropriate acts at home and in public, aggressiveness, depression. Worksheets are provided to help caregivers customize the strategies that work best for them.
The strategies featured in this guide have been used by the authors in their research and reflect approaches and techniques that families have found to be most helpful.

Book: Dementia: pathways to hope : spiritual insights and practical advice, Louise Morse, 2015

dementia pathways to hopeTo be diagnosed with dementia is “like being blindfolded and let loose in a maze”. There is no clear treatment to follow, because each case is unique. But once thickets of misunderstanding and misinformation are brushed aside, there are pathways to hope.

“Secular models of support don’t adequately reflect Christian values of compassion, love and service,” explains Louise Morse. “Neither do they describe the power of spiritual support. This is key to the wellbeing of the caregiver, as well as the person with dementia.”

This book is packed with examples of what works, as well as practical advice and accessible medical information.

Louise Morse is a cognitive behavioural therapist and works with a national charity whose clients include people with dementia. Her MA dissertation, based on hundreds of interviews, examined the effects on families of caring for a loved one with dementia.

Fiction: Unbecoming, Jenny Downham, 2015

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

YouTube: Living with Dementia, Alzheimer’s Australia, 2016

This is also available as a DVD from our library.

Dementia information sites, social media and apps from Alzheimer’s Australia

Alzheimer’s Australia provides a range of websites that specialise in different aspects of dementia or dementia-related issues. This post has collected all our information sources in a central location for your convenience.

Website: Engage Enable Empower, Alzheimer’s Australia

engageenableempower_website

This website is for people living with dementia

It is possible to live a good quality life with dementia. It is surprising how small changes to lifestyle can lead to better health and well being!

Website: You are not alone: online dementia support and counselling, Alzheimer’s Australia VIC

helpingwdementiawebsite2Alzheimer’s Australia Vic’s online dementia support for people living with dementia, their families and carers

If you or a loved one has dementia and you need information, counselling, support and to connect with others in your situation then this website can help you.

Through this website you can:

  • arrange free online counselling (email or videoconference)
  • learn about dementia
  • connect with others in the same situation as you
  • discover where and how to get help

At Alzheimer’s Australia Vic we know that dementia can affect every area of life for you and your loved ones and that it can be difficult to know what to do. We have staff ready to help. So click, explore and connect to find a better way to live with dementia.

App: Dementia-friendly home, Alzheimer’s Australia Vic

appdemfriendlyThe Dementia-Friendly Home App in now available. Using interactive 3D game technology Unreal Engine, the tablet app provides carers with ideas to make their home more accessible for people living with dementia.

With 70 per cent of people with dementia living in the community, the app enables the home to be made more dementia-friendly. This can allow the person to stay in their own home, enjoy their regular lifestyle activities and remain engaged with their community for longer.

The Dementia-Friendly Home App is now available for iPad from the App Store and Android tablets from the Google Play Store for AU$2.99.

Website: Dementia Research Foundation, Alzheimer’s Australia

dementiaresearchfoundationThe Alzheimer’s Australia Dementia Research Foundation is the research arm of Alzheimer’s Australia and funds talented new and early career Australian dementia researchers. It has information on the latest research on dementia – including studies looking for participants. Those wanting funding for studies can find out more about research grants on offer.

Website: Is It Dementia, Alzheimer’s Australia SA

is_it_dementiaThis educational site includes information relevant to a range of different industries to support identification of possible dementia-related behaviours and assisting people who may have dementia.

Industries covered include: Public Transport; Emergency Services; Retail; Fire; Banking; Correctional Services; Community.

Website: Start2Talk, Alzheimer’s Australia

start2talk_webThis site provides advice on how to plan for the future. It includes advice on planning for different stages of dementia, estate planning, powers of attorney, information for healthcare professionals on how to assist patients with this planning, finances and mechanisms to review plans as things progress.

Website: Dementia Enabling Environments, Alzheimer’s Australia WA

dementia_enabling_environmentsDeveloping an enabling environment for a person living with dementia can make a significant difference to independence, quality of life and wellbeing.

A well designed garden, or an interior planned with cognitive impairment in mind can provide essential prompts, accessibility and reduce risks to support a person with dementia to maintain abilities and take part in meaningful engagement. A poorly designed environment can be at best confusing and disorienting, and at worst disabling and even dangerous for those with dementia.

This Virtual Information Centre provides practical tips, guides and resources to help make the places in which we live more dementia enabling: from simple modifications that anybody can make to their home, to landscaping suggestions and architectural design for dementia care environments.

Website: Detect Early – A resource for healthcare professionals, Alzheimer’s Australia

detectearly1Healthcare professionals – whether in the community or in specialist care settings – are crucial in the early detection of dementia, helping to facilitate early intervention and better patient outcomes.

This site provides a wide range of resources and tools to help detect and manage dementia at the early stages.

For GPs, there’s the GPCOG, a screening tool specially designed for use in general practice,1 as well as educational resources targeted at community healthcare.

For pharmacists, there are tailored educational resources to assist with early intervention, as well as patient-focused materials in our Managing Dementia section.

By detecting dementia early, we can assist people with dementia – and their carers – to plan ahead and make crucial decisions about the future.

Website: Younger Onset Dementia forum: Talk Dementia, Alzheimer’s Australia

talk_dementia_YOD_webThis forum provides a place where younger people with dementia, their families, carers and friends can gather and share information. It provides a place to share your stories, connect with others in a similar situation, ask questions and share information.

Website: Your Brain Matters, Alzheimer’s Australia

YBMwebsite3Research shows you can reduce your risk of developing dementia through Five Simple Steps to maximise brain health. Your Brain Matters™ is Alzheimer’s Australia’s evidence-based dementia risk reduction program. You will learn about the five simple steps to maximise your brain health and get tips on living a brain healthy life to potentially reduce your risk of developing dementia.

Website: Dementia Daily, Alzheimer’s Australia NSW

dementiadaily2 Dementia Daily has up to date research and news, videos for adults and kids on dementia, connects people to online dementia communities and blogs, Help Sheets and more.

Video resources: Alzheimer’s Australia YouTube channel

Video resources: Alzheimer’s Australia Vic YouTube channel

Social Media: Alzheimer’s Australia VIC Facebook page

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Social Media: Alzheimer’s Australia Vic Twitter

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Website: FightDementia.org.au, Alzheimer’s Australia

fightdementiawebsiteOur organisational website includes a range of state-specific and national information about dementia-related events, education opportunities, publications and news. Find out about the services available in each Australian state or territory as well as how you can access them. Browse our extensive collection of help sheets to find out more about dementia, watch videos or read a publication. This rich website caters to a range of information needs. Materials such as help sheets are also frequently available in languages other than English.

App: Brainy app, Alzheimer’s Australia

brainyappBrainyApp was developed in 2011 by Alzheimer’s Australia in partnership with Bupa Health Foundation to raise awareness of the risk factors for Alzheimer’s disease and other types of dementia, and to help you be brain healthy.

There are more than 353,800 Australians currently living with dementia, with this number set to increase to 900,000 by 2010.

There is something you can do to reduce your risk. Scientific evidence tells us that certain lifestyle and health behaviours, particularly around midlife, are associated with reduced risk of developing dementia in late life. So, look after your brain health to reduce your risk of dementia. It’s never too early or late to start, as brain health can be improved and protected at any age.

BrainyApp is available internationally for Apple and Android devices for FREE. You can download BrainyApp from the Apple and Google app stores.

Or you can use BrainyApp on your computer, at BrainyApp.com.au

HIV and HIV-associated neurocognitive disorders (HAND)

HIV stands for human immunodeficiency virus. This post is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND).

YouTube: Understanding HIV-Associated Neurocognitive Disorders (HAND), Alzheimer’s Australia Vic

YouTube: Supporting someone who is living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

Toolkit: HIV-Associated Neurocognitive Disorders (HAND): Toolkit for community care workers, Alzheimer’s Australia Vic, 2014

HIVHANDCommCareThis toolkit is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND). HAND affects cognitive (thinking) abilities such as memory, language, attention, concentration, planning, judgement and organisation.

This toolkit is for paid and volunteer workers in community care settings who support people with HIV. The toolkit provides information to increase knowledge and understanding of the cognitive issues of HIV and their impact on self-care. It helps workers identify and address these issues to support better health outcomes for people with HIV and HAND.

Service providers can use this toolkit as a standalone resource. Although this toolkit is mainly about community care, it may help in other settings, such as residential care.

YouTube: Living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

 

HIVHANDFamilyFriendsToolkit: Living with HIV-Associated Neurocognitive Disorders (HAND): Information for people living with HIV and HAND, their partners, families and friends, Alzheimer’s Australia Vic, 2014

This booklet has been produced by Alzheimer’s Australia Vic for people living with HIV and HAND, and their partners, families and friends. It is part of the Dementia and Chronic Conditions Series: HIV-Associated Neurocognitive Disorders Toolkit, which has been developed primarily for community care workers. The information and recommendations it contains are based on independent research, expert opinion and scientific evidence available at the time of writing. The information was acquired and developed from a variety of sources, including but not limited to collaborations with the Burnet Institute and Living Positive Victoria.

Article: Understanding HIV and dementia by Denise Cummins, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.28-30

AJDC_Dec14Jan15As the lifespan of people with HIV has increased, so too has the risk of developing HIV-associated dementia. Denise Cummins explains the importance of diagnosis, education and effective management to help people with the condition maintain their independence and quality of life.

Note: should you be interested in this article please request it through our handy form.

This page includes more resources which may be of use in supporting people with HIV and HAND.

webpageHIVDemWebpage: HIV Associated Dementia, Alzheimer’s Australia Vic

This page describes what HIV associated dementia is, it’s causes, the symptoms and how it is diagnosed and treated.

 

Recent fiction with people with dementia

2017 Update

As you may know, it can feel like it’s entirely possible to read about dementia all day, every day and still only cover a fraction of the resources available.  At the Alzheimer’s Australia Vic library we’ve found that many people enjoy learning more about dementia in a fictional setting.  Fortunately, there are some amazing stories which provide both a gripping read and valuable information on how dementia can impact and change both the person with dementia and those around them.

This post covers books released over the last two years – 2014 and 2015. Links to previous posts about fictional accounts of dementia are also included at the conclusion of this post.  We hope that some of these resources are also available through your local library. If not, you can contact us or perhaps put in a request for these via your local library.

spool of blue threadA Spool of Blue Thread by Anne Tyler, 2015

“It was a beautiful, breezy, yellow-and-green afternoon…” This is how Abby Whitshank always begins the story of how she fell in love with Red that day in July 1959. The Whitshanks are one of those families that radiate togetherness: an indefinable, enviable kind of specialness. But they are also like all families, in that the stories they tell themselves reveal only part of the picture. Abby and Red and their four grown children have accumulated not only tender moments, laughter, and celebrations, but also jealousies, disappointments, and carefully guarded secrets. From Red’s father and mother, newly arrived in Baltimore in the 1920s, to Abby and Red’s grandchildren carrying the family legacy boisterously into the twenty-first century, here are four generations of Whitshanks, their lives unfolding in and around the sprawling, lovingly worn Baltimore house that has always been their achor.

Brimming with all the insight, humor, and generosity of spirit that are the hallmarks of Anne Tyler’s work, A Spool of Blue Thread tells a poignant yet unsentimental story in praise of family in all its emotional complexity. It is a novel to cherish.

we are not ourselvesWe are not ourselves by Matthew Thomas, 2014

This novel is light on racy subplots and heavy on the messy, claustrophobic fog of family life. It is by turns wrenching in its portrait of a family battling illness and plodding in its depiction of the sociological realities of mid-century middle-class American life. At its centre is Eileen Tumulty, who grows up in a working-class Irish enclave of Queens, New York. When she meets her husband, Ed, a young neuroscientist, she believes she is finally climbing the ladder into the respectable upper-middle-class. But then in midlife, just as the couple’s son is entering his teens, Ed is diagnosed with young onset Alzheimer’s disease.

Note: this is also available as an audiobook from our library.

memory bookThe memory book  by Rowan Coleman, 2014

The name of your first-born. The face of your lover. Your age. Your address…

What would happen if your memory of these began to fade?

Is it possible to rebuild your life? Raise a family? Fall in love again?

When time is running out, every moment is precious…

When Claire starts to write her Memory Book, she already knows that this scrapbook of mementoes will soon be all her daughters and husband have of her. But how can she hold onto the past when her future is slipping through her fingers…?

A Sunday Times bestseller and Richard & Judy Autumn Book Club pick, The Memory Book is a critically acclaimed, beautiful novel of mothers and daughters, and what we will do for love.

This is a story about younger onset dementia.

Note: this is also available as an audiobook from our library.

arsonistThe Arsonist by Sue Miller, 2014

From the best-selling author of While I Was Gone and The Senator’s Wife, a superb new novel about a family and a community tested when an arsonist begins setting fire to the homes of the summer people in a small New England town.

Troubled by the feeling that she belongs nowhere after working in East Africa for 15 years, Frankie Rowley has come home-home to the small New Hampshire town of Pomeroy and the farmhouse where her family has always summered. On her first night back, a house up the road burns to the ground. Is it an accident, or arson? Over the weeks that follow, as Frankie comes to recognize her father’s slow failing and her mother’s desperation, another house burns, and then another, always the homes of summer people. These frightening events, and the deep social fault lines that open in the town as a result, are observed and reported on by Bud Jacobs, a former political journalist, who has bought the local paper and moved to Pomeroy in an attempt to find a kind of home himself. As this compelling book unfolds, as Bud and Frankie begin an unexpected, passionate affair, arson upends a trusting small community where people have never before bothered to lock their doors; and Frankie and Bud bring wholly different perspectives to the questions of who truly owns the land, who belongs in the town, and how, or even whether, newcomers can make a real home there.

Eliz_Is_MissingElizabeth Is Missing: A Novel by Emma Healey, 2014

In this darkly riveting debut novel—a sophisticated psychological mystery that is also an heartbreakingly honest meditation on memory, identity, and aging—an elderly woman descending into dementia embarks on a desperate quest to find the best friend she believes has disappeared, and her search for the truth will go back decades and have shattering consequences.

Maud, an aging grandmother, is slowly losing her memory—and her grip on everyday life. Yet she refuses to forget her best friend Elizabeth, whom she is convinced is missing and in terrible danger.

But no one will listen to Maud—not her frustrated daughter, Helen, not her caretakers, not the police, and especially not Elizabeth’s mercurial son, Peter. Armed with handwritten notes she leaves for herself and an overwhelming feeling that Elizabeth needs her help, Maud resolves to discover the truth and save her beloved friend.

This singular obsession forms a cornerstone of Maud’s rapidly dissolving present. But the clues she discovers seem only to lead her deeper into her past, to another unsolved disappearance: her sister, Sukey, who vanished shortly after World War II.

As vivid memories of a tragedy that occurred more fifty years ago come flooding back, Maud discovers new momentum in her search for her friend. Could the mystery of Sukey’s disappearance hold the key to finding Elizabeth?

Note: this is also available as an audiobook from our library.

Stars Go BlueStars go blue : a novel by Laura Pritchett, 2014

We first met hardscrabble ranchers Renny and Ben Cross in Laura’s debut collection, and now in Stars Go Blue, they are estranged, elderly spouses living on opposite ends of their sprawling ranch, faced with the particular decline of a fading farm and Ben’s struggle with Alzheimer’s disease. He is just on the cusp of dementia, able to recognize he is sick but unable to do anything about it -the notes he leaves in his pockets and around the house to remind him of himself, his family, and his responsibilities are no longer as helpful as they used to be. Watching his estranged wife forced into care-taking and brought to her breaking point, Ben decides to leave his life with whatever dignity and grace remains.

As Ben makes his decision, a new horrible truth comes to light: Ray, the abusive husband of their late daughter is being released from prison early. This opens old wounds in Ben, his wife, his surviving daughter, and four grandchildren. Branded with a need for justice, Ben must act before his mind leaves him, and sets off during a brutal snowstorm to confront the man who murdered his daughter. Renny, realizing he is missing, sets off to either stop or witness her husband’s act of vengeance.

missing stepsMissing Steps by Paul Cavanagh, 2015

Dean Lajeunesse doesn’t want to follow in his father’s footsteps. He’s not yet fifty, but his memory is starting to fail him. He vividly recalls how dementia whittled away at his dad and doesn’t want his own teenaged son, Aidan, to see him suffer the same fate. Of course, he could just be overreacting. Maybe it’s the stress of his on-again, off-again relationship with Valerie, his long-time live-in girlfriend, or the feeling that he’s not measuring up as a father that’s making him absent-minded. But before he can understand what’s happening to him, he’s dragged home to the sickbed of his estranged mother. There, he butts heads with his older brother, Perry, who’s remained loyal to their mother and has succeeded in almost every way that Dean hasn’t. As old family tensions bubble to the surface, Dean must try to hold on to Aidan’s respect as he relives his difficult relationship with his own father.

unbecomingUnbecoming by Jenny Downham, 2015

Three women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

This is a book that will be enjoyed by young adults and adults alike.

Half a ChanceHalf a Chance by Cynthia Lord, 2014

For late primary or early secondary school-aged readers.

When Lucy’s family moves to an old house on a lake, Lucy tries to see her new home through her camera’s lens, as her father has taught her — he’s a famous photographer, away on a shoot. Will her photos ever meet his high standards? When she discovers that he’s judging a photo contest, Lucy decides to enter anonymously. She wants to find out if her eye for photography is really special — or only good enough. As she seeks out subjects for her photos, Lucy gets to know Nate, the boy next door. But slowly the camera reveals what Nate doesn’t want to see: his grandmother’s memory is slipping away, and with it much of what he cherishes about his summers on the lake. This summer, Nate will learn about the power of art to show truth. And Lucy will learn how beauty can change lives . . . including her own.

GrandmaGrandma by Jessica Shepherd, 2014

Oscar loves Grandma, and their time together is always lots of fun. As she becomes less able to look after herself, she has to go into a care home. More and more children are encountering dementia and its effects on their families. This touching story, told in Oscar’s own words, is a positive and practical tale about the experience. The factual page about dementia helps children talk about their feelings and find new ways to enjoy the changing relationship. Jessica Shepherd’s sensitive first picture book has grown out of her experiences in a variety of caring roles. This book includes many wonderful illustrations, including a childlike map of a residential care facility.

Fictional accounts of dementia – Post 1

Fictional accounts of dementia – Post 2

Kids and teens resources