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.

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

Still Alice

still alice movieIn January 2015 a film version of the book Still Alice by Lisa Genova was released. This film has received critical acclaim and to date, has won multiple awards.

If you’ve read Still Alice or seen the film you already know that it is a story of a psychology professor Alice Howland (played by Julianne Moore) who is diagnosed with early onset Alzheimer’s disease. The story describes her life from early warning signs, through diagnosis and then follows her progress through the onset of symptoms. It eloquently illustrates the impact of Alzheimer’s disease for Alice and for her family.

This post includes articles prompted by the release of the film Still Alice—reviews, commentaries and a podcast. It is not an exhaustive list, but rather a small sampler of the discussions initiated by Still Alice’s cinematic interpretation.

Remember, we have copies of the novel version of Still Alice in the Alzheimer’s Australia VIC library. Here’s a link to a review of the book on this blog – scroll down a bit, the review of Still Alice is lower on the page. You can contact us or come and visit us if you’d like to borrow a copy.

Once the film is released on DVD you will also be able to borrow a copy of the film from our library.

Article: Still Alice is ‘shockingly accurate’ – people living with dementia give their verdict, Tom Seymour, 11 February 2015, The Guardian

Julianne Moore is an Oscar favourite for her portrayal of a woman with dementia in Still Alice. But what do people with the condition think of the film?

megaphonePodcast: A review of the film Still Alice, panel discussion by Alzheimer’s Australia Dementia Research Foundation, Episode 25.

On January 29, Still Alice was released in Australian cinemas, a movie based on fictional character Alice Howland from her dementia diagnosis through to onset of symptoms. Throughout the movie Alice slowly but inevitably loses memory and connection with reality. She gradually loses the ability to follow a conversational thread, the story line of a book, or to recall information she heard just moments before. All common dementia symptoms. Many film critics are raving about Julianne Moore’s portrayal of Alice, and she has already won a Golden Globe award for best actress and is number 1 pick to win a prestigious Oscar. So what do others think of the movie, particularly those who are close to the cause and is the movie sending the right messages about ‘what is dementia?’ While the overall view of the movie is positive, some critics do say the film is overly “pristine” and “shies away from taking risks”, while also not being plausibly representative of the typical experience of dementia in choosing to focus on an “almost perfect … privileged family.” Others ask if it focuses enough on the latter stages, along with the impact placed on families and carers. In this special extended episode of the Dementia News I am pleased to have joining with me, three expert panellists, Dr Siobhan O’Dwyer (Griffith University), Dr Andrew Watt (Florey Institute of Neuroscience and Mental Health) and Jill Brown (Alzheimer’s Australia ACT), to give their views of the movie and discuss just how close to real life it is.

Article: ‘Hollywood’ movie sparks dementia conversation, DPS News

It is expected that a new Hollywood movie, starring a lineup of well known actors, will lead to greater awareness of the ‘enormous’ dementia challenge facing Australia, particularly those experiencing younger onset dementia.

the conversationArticle: Still Alice, and the advocacy for Alzheimer’s in fiction, Matthew Wade, 29 January 2015, The Conversation

Still Alice – starring Julianne Moore – tells the story of Alice Howland, a linguistics professor diagnosed with a form of early-onset Alzheimer’s Disease. Moore has already netted a Golden Globe and is clear favourite for a well-deserved Best Actress Oscar next month.

The novel on which the film is based is one of a clutch of debuts in recent years to explore forms of neurodegenerative disease. So what role does fiction play in our understanding, and acceptance, of dementia?…

 

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

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

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

Still Alice coverFiction: Still Alice, Lisa Genova

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

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

YouTube: Dementia: My Story, Kate Swaffer

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

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

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

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

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

YouTube: What Dementia Is To Me, Dr Jennifer Bute

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

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

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

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

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

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

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

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

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

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

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

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

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

YouTube:Hello Dinner, Richard Taylor

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

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

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

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

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

1. About you… What is dementia?

2. About you… Early planning

3. About you… Looking after yourself

4. About you… Driving

5. About you… Living alone

6. About you… Feelings and adjusting to change

7. About you… Keeping involved

8. About you… Talking about the diagnosis

9. About you… Talking with your doctor

10. About you… Making employment decisions

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

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

Must-reads for carers and families of people with dementia

This is a library ‘fantasy’ list. If you were to walk into our lovely little library – and we would LOVE you to do just that! –  and commend yourself into our hands, this is what would we would send you home with. We know these books are of genuine use to those caring for people with dementia, please have a browse of the list and let us know if there are any you would like to borrow. Many are also likely to be offered through your local public library service as well.

First person accounts

First-person accounts from people with dementia are a really valuable insight into the experience of those living with dementia. Can they be heart-wrenching to read? Oh yes. Is it ridiculously brave to document your own experience of living with dementia whilst living with dementia? Unarguably so. Is it illuminating to understand, from a first-person perspective, the very personal and life-changing impacts? My goodness, gracious yes! Whenever I read first-person works I am the richer for it. It allows you to experience the world from another perspective, and as a result understand in a unique way what it might be like for someone with dementia and how I might be able to better help them.

Now, enough from me! Here’s a bit about the books.

Alzheimer’s from the inside out, Richard Taylor

alzheimers_from_the_inside_out_webReceiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others.

With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

Richard Taylor has Younger Onset Dementia.

Who will I be when I die? Christine Boden

who_will_i_be_when_i_die_webFor many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then.

Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

For Christine, Alzheimer’s disease with all the changes it brings, is part of her on-going journey.

Christine Boden has Younger Onset Dementia.

Carer accounts

For many of us, the care of family is taxing enough, without even considering the all-consuming demands of caring for a person with dementia. Particularly if that person also happens to be a much-loved parent or partner. Carers accounts offer us the opportunity to plunge into the astounding physical and emotional demands of looking out for a person with dementia. These are not always easy and/or comfortable reads but their raw honesty and often unflinching assessment of their successes and failures makes for very compelling and wonderfully human stories.

Here’s a few of our favourites:

Alzheimer’s: a love story, Vivienne Ulman

alzheimersLoveStoryWhen Vivienne Ulman’s youngest child left home, she and her husband were poised to enjoy their freedom. Then her mother’s Alzheimer’s intervened. In Alzheimer’s: a love story, Vivienne records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustains them. Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he now amply returns this support. This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concerns for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Hazel’s Journey, Sue Pieters-Hawke

hazel's_journey_webIn November 2003, Hazel Hawke revealed that she was facing her greatest challenge – Alzheimer’s disease. Her courage and determination in the face of this cruel turn of fate touched millions. Now comes the full, inside story of Hazel’s journey with Alzheimer’s, told by her daughter Sue.

This is an intensely moving and personal story of an intelligent, independent woman struggling with the disease that is affecting an ever increasing number of Australians. From early denial to the awful anger that came after diagnosis and the acceptance that has developed since, Hazel’s Journey tell’s Hazel’s story – and shows what life is like for the hundreds of thousands of carers who are committed to helping their loved ones retain quality of life and to coping with the disease’s implacable progress. Inspiring, revealing and insightful, this is a journey you will never forget.

Losing Clive to younger onset dementia : One family’s story, Helen Beaumont

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

Guides to caring

Imagine if there was a way to have 24-7 access to a source of information and advice on caring for someone with dementia?  These could be it, we know they have been very useful on a practical level for many of our library patrons.

The 36-hour day, Nancy Mace and Peter Rabins

36hrdayThe 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Understanding difficult behaviors, Anne Robinson

The detailed information on environmental, physical, and emotional influences is very beneficial to both family and professional caregivers striving to make improvements that may avoid difficult behaviors. Practical coping strategies for responding to challenging situations such as agitation, wandering, incontinence and resistance to care are also offered. These practical strategies for making changes based on possible causes and guidance to problem-solve helps to avoid the behavior and address it when it occurs.

Activities for people with dementia

montessori_activities_vol2_blogMontessori based activities for persons with dementia: Volume 1 & 2, Cameron J. Camp (ed)

These books include intergenerational programming, group activities, ideas especially for men, and sensory stimulation exercises. Also, range-of-motion and self-care activities for enhancing restorative nursing and rehabilitation are described.

we_can_we_can_we_can_webWe can, we can, we can: purpose and pleasure for people living with dementia

Activity must meet our need for meaning and connection, as well as providing an outlet for creativity, spirituality, job, fun, and relaxation. Every one of us has leisure and recreation preferences. This collection of activities respects that diversity, as well as the need for a person-centred approach to activities.