Australian of the year 2017 – National finalist – Kate Swaffer

kateswaffer

Kate Swaffer

As we wait for the announcement of  Australian of the year* this post looks at some of the writings of deserving nominee and South Australian of the Year,  Kate Swaffer.

A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia .

An accomplished author and poet, Kate has written blogs,  books and articles advocating for life beyond a diagnosis of dementia. Kate’s writings  provide an invaluable insight into one person’s journey and thoughts about living with dementia.

*2017 Australian of the Year will be announced on the eve of Australia Day, Wednesday 25th January. Congratulations and all the best to all nominees.

Kate’s blog


kateswaffer_blog2017
A recent 2017 post is a great revisiting of some of the topics Kate has covered over the years.

Ramblings from the past, as I think about 2017…

 

 

 

 

Book: What the Hell Happened to My Brain? : Living beyond dementia  /  By Kate Swaffer  (2016)

what-the-hell-happened-to-my-brain

With chapter headings such as Why me, why this, why now?; The dementia train and not sweating the small stuff and Reactions to dementia: yours, mine, others Kate 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.

 

Editorial: Dementia and Prescribed Disengagement™  /  Kate Swaffer
Dementia: the international journal of social research and practice, Vol. 14, No. 1, January 2015, p.3-6

dementia journalFollowing a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?..  Access full text

Article: Not just a ‘challenging behaviour’  /  Kate Swaffer
Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.21-24

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Kate highlights her concerns that widespread use of the terms ‘challenging behaviours’ and ‘Behavioural and Psychological Symptoms of Dementia’ (BPSD), over-perscription of antipsychotic medications and the guidelines used to ‘manage’ BPSD are having a negative impact on care, whilst fuelling stigma and discrimination.

 

Article: Reinvesting in life is the best prescription  /  Kate Swaffer
Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.31-32

ajdc_dec14jan15When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’ as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.

 

Book: Diagnosed with Alzheimers or another dementia  /  Kate Swaffer & Lee-Fay Low  (2016)

diagnosed-with-alzheimers

This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (from introduction by Prof Henry Brodarty)

 

 

To find a full list of Kate’s books, articles, poetry and presentations go to her website

https://kateswaffer.com/cv/

 

 

How do I choose?

Alzheimer’s Australia libraries combined have a collection of over 14,000 resources related to dementia. This year there have been in excess of 8500 loans from our collections.

Undoubtedly a great resource available to the community…but where do you begin?

When visiting the local bookshop we all welcome the influence of an award sticker or a book that proudly boasts itself a staff recommended read.  Taking inspiration from this and to assist our users to navigate our collection we have developed the Alzheimer’s Australia staff recommend sticker.

recommended-read-sticker

Our key criteria

  • Well written/produced
  • Consistently good feedback from borrowers
  • Positive reviews from specialist clinicians
  • The library staff loved it!

So what have our users been borrowing this year? Below is a selection from the top 20 in no particular order.

As always we welcome your feedback and would love to learn what would be on the top of your list.

DVD: Alive inside: A story of music & memory  /  A film by MRossato-Bennett  (2014)

Alive Inside DVDAlive Inside is a joyous cinematic exploration of music’s capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.

 

Green vanilla tea  /  Marie Williams  (2013)

green-vanilla-tea_smlWhen Marie Williams’ husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time — when gradually Dominic’s behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world.

DVD:  Glen Campbell…I’ll Be Me  (2014)

glen-campbellIn 2011, music legend Glen Campbell set out on an unprecedented tour across America. He thought it would last 5 weeks; instead it went for 151 spectacular sold out shows over a triumphant year and a half. What made this tour extraordinary was that Glen had recently been diagnosed with Alzheimer’s disease. He was told to hang up his guitar and prepare for the inevitable. Instead, Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ The film documents this extraordinary journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.

Fiction: Still Alice  /  Lisa Genova  (2009)

still alice movieAlice 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.

 

Caring for a loved one with dementia : a mindfulness-based guide for reducing stress and making the best of your journey together  /  Marguerite Manteau-Rao  (2016)

caring-for-a-loved-oneAn approach to caring with calm, centered presence; responding  with compassion; and maintaining authentic communication, even in the absence of words. Most importantly,  discover ways to manage the grief, anger, depression, and other emotions often associated with dementia care.

 

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

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 36-hour day : a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life  /  Nancy L. Mace, Peter V. Rabins  (2011)

36hrdayInformation on diagnostic evaluation; resources for families who care for people with dementia; legal and financial information;  information on nursing homes and other communal living arrangements; research, medications, and the biological causes and effects of dementia.

 

What the Hell Happened to My Brain? : Living with dementia  /  By Kate Swaffer   (2016)

what-the-hell-happened-to-my-brainKate 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.

DVD: Filling the day with meaning  /  Teepa L Snow (2011)

Through learning about what makes an activity engaging and valuable, how to create a safe and inviting environment and more with early-onset dementia patients, this DVD helps professional caregivers to provide the best care for people with dementia.

Loving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (2011)

loving-someone-who-has-dementiaOffers approaches to understand and cope with the emotional strain of care-giving. Boss’s book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

 

 

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

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

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

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

 

 

 

YouTube: Courageous Conversations

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

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

 

 

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

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

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

 

App: EDIE

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

edie

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

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

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


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

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

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

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

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

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

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

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

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

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

Website: Dementia alliance international

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

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Past related posts that may be of interest

Richard Taylor – Collected works – August 2015

From the horses mouth – October 2014

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.

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

 

Richard Taylor – Collected works

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

alzheimers_from_the_inside_out_webBook: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

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

live outside the stigma DVD_webDVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.”  These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

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

be_with_me_today_webDVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 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.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

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

100answers20questions6pers_webDVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions.  The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

living w dementia R Taylor DVD_webDVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to

 

  • Redefine the disease to better understand those experiencing it
  • Stop making people with dementia look and act like we do
  • Recast “problem behaviors” as mechanisms for coping and communicating
  • Find new ways to make normal life experiences accessible to people with dementia
  • Create more opportunities for people to feel connected and find meaning day to day
  • Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

  • How to communicate a person’s preferences to care staff
  • Whether asking for opinions and responses from people with dementia is confusing for them
  • Ways to have better long-distance interchanges with a loved one by phone
  • Whether better care practices can be taught or are essentially innate
  • And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of      “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle