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.

Summer reading and viewing

Here in Melbourne, we are in the midst of a huge heatwave with temperatures in excess of 40 degrees Celsius for the past two days, with two more to go before a cool change this weekend. When it’s too hot to move, what better time is there to pick up a book/watch a movie and sit in front of a fan?  Here’s a selection of recent releases and popular titles on the topic of dementia for your consideration.

Remember: want anything? If you’re a member we can post it out to you. Many of these titles should be available from your local library as well. Don’t leave that position in front of the fan unless you are heading back to the fridge for more ice in that water!

Fiction: Hateship, friendship, courtship, loveship, marriage, Alice Munro

Hateship, friendship, courtship, loveship, marriage coverThis book includes 9 short stories by Nobel Prize in Literature winner, Alice Munro. One story describes the generosity and grace with which a husband accommodates the blossoming romance his wife, a person with dementia, enjoys with a fellow nursing-home resident. Each story is gripping, beautifully detailed and elegantly constructed. I dare you to set this book aside with anything but reluctance once you have opened it.

Teen fiction: Downeast Ledge: A novel, Norman Gilliland

Downeast Ledge book coverChanging times and personal failings have brought life to a standstill for the natives of Ashton, Maine. On the far side of the river that divides the coastal town, the prosperous summer residents come and go, seemingly complacent, without having much to do with the locals.

But when Amber Waits crosses the river to take a job as a caregiver to a person with dementia, Walter Sterling, all bets are off. She finds herself thrown into the troubled lives of Walt, his distracted wife Geneva, and their resentful and reckless daughter Karen.

Walt begins to exert a strange influence on Amber and her friends. Karen becomes determined to make a dream come true by taking up with Robin Dunning, a local seafarer with a shadowy past and questionable future. As Amber tries to fend off one catastrophe after another, she has to muster her courage and resourcefulness to save her friends and herself.

DVD: Away from her

away_from_herAfter forty years of marriage, Grant (Gordon Pinsent) and Fiona (Julie Christie) are still deeply in love and live an idyllic life of tenderness and serenity. It is only when Fiona begins to show signs of memory loss that cracks in their relationship show. Helplessly, Grant watches as he becomes a stranger to Fiona as her memory rapidly starts to deteriorate. Lyrical and heart-wrenching, Away From Her is a poignant love story about letting go of what you can’t live without.

Fiction: Still Alice, Lisa Genova

Still Alice coverThis is a very popular book in our library. The story is told from the perspective of the person with younger onset dementia, Alice Howland. It has been translated into 25 languages and this year will be made into a feature-length film starring Julieanne Moore (love!).  Here’s an excerpt from the précis:

Alice Howland is proud of the life she has worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When Alice begins to grow forgetful at first she just dismisses it, but when she gets lost in her own neighbourhood she realises that something is terribly wrong. Alice finds herself in the rapid downward spiral of Alzheimer’s disease. She is only 50 years old.

While Alice once placed her worth and identity in her celebrated and respected academic life, now she must re-evaulate her relationship with her husband, her expectations of her children and her ideas about herself and her place in the world. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Memoir: Losing Clive to Younger Onset Dementia, 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.

DVD: Iris

Iris DVD cover

Judi Dench and Kate Winslet bring to the screen one of the most extraordinary women of the 20th century, celebrated English author Iris Murdoch. As told by her unlikely soulmate, husband John Bayley, Iris first became known as a brilliant young scholar at Oxford whose boundless spirit dazzled those around her. Then, during a remarkable career as a novelist and philosopher, she continued to prove herself a women ahead of her time. Even in later life, as age and illness robbed Iris of her remarkable gifts, nothing could diminish her immense influence or weaken the bond with her devoted husband.

Fiction: Left Neglected, Lisa Genova

Left Neglected book coverWhilst not about dementia, this novel outlines acceptance of a dramatically changed life and provides wonderful detail on the cognitive and perceptual processing changes that accompany neurological change. Here’s the précis for more information:

Sarah Nickerson is like any other career-driven supermum in the affluent suburb where she leads a hectic but charmed life with her husband Bob and three children. Between excelling at work; shuttling the kids to football, day care, and piano lessons; convincing her son’s teacher that he may not, in fact, have ADD; and making it home in time for dinner, it’s a wonder this over-scheduled, high-flyer has time to breathe.

Sarah carefully manages every minute of her life, until one fateful day, while driving to work, she looks away from the road for one second too long. In an instant all the rapidly moving parts of her jam-packed life come to a screeching halt. A traumatic brain injury completely erases the left side of her world. For once, Sarah must relinquish control to those around her, including her formerly absent mother. As she wills herself to recover, Sarah must learn that a happiness greater than all the success in the world is close within reach, if only she slows down long enough to notice.

Teen fiction: Curveball: The Year I Lost My Grip, Jordan Sonnenblick

Curveball book coverAfter an injury ends former star pitcher Peter Friedman’s athletic dreams, he concentrates on photography which leads him to a girlfriend, new fame as a high school sports photographer, and a deeper relationship with the beloved grandfather who, when he realizes he has dementia, gives Pete all of his professional camera gear. Here’s some more from the précis to whet your appetite:

Pete’s freshman year doesn’t turn out as planned. A pitching accident over the summer ruins his arm. If he can’t play baseball, what is he supposed to do? If he isn’t the star pitcher, then who is he? Pete’s best friend and pitching partner, AJ, doesn’t believe Pete—he tells him he’ll be back to his normal self by spring training. To make matters more complicated, there’s something going on with Pete’s grampa—he’s acting weird and keeps forgetting important things, and Pete’s mother doesn’t want to talk about it.

Person-centred dementia care: helping carers provide the best support possible

As I learn more about dementia I am awe-struck by the love and commitment that shines through the everyday challenges faced by both carers and people with dementia. It takes grace and courage to navigate the labyrinthine paths of dementia, with unexpected rays of warmth and sunshine, prolonged patches of shade and the odd storm.  The devastation that reverberates for the person with dementia, their family and their friends is not to be understated. Keeping the person, not the diagnosis, on the centre stage is diabolically difficult.

The collection we have for you today weaves a picture of the challenges, the triumphs and the love intertwined in person-centred dementia care.

Book: I’m Still Here, J. Zeisel

Im_Still_hereJohn Zeisel is an innovator in the nonpharmacological treatment of Alzheimer’s. He argues that to maintain a quality life, it is essential to recognise which parts of the brain remain intact throughout the course of the disease. He shows how it’s possible to connect with those living with Alzheimer’s by engaging with abilities that don’t diminish over time, such as understanding music, art, facial expressions, touch and the deep need we all have to care for others. In this book John Zeisel outlines his groundbreaking approach and demonstrates how we can offer people with dementia a better quality of life and a connection to others and the world.

Journal: The Journal of Dementia Care, Vol. 21, No. 4, July/August 2013

jdc214The Journal of Dementia Care is a multidisciplinary, bi-monthly journal aimed at all professionals working with people with dementia. It recognises that professional carers working with people with dementia have their own special demands which deserve a specialist publication.

Here’s the contents page from the latest edition, take a look and if you’re interested in any of the articles, check the bottom of the post.

Unlocking diagnosis, p. 12, Jeremy Hughes, chief executive of the Alzheimer’s Society, writes in response to Martin Brunet’s recent article in JDC, and argues that case finding will open the door to treatment and support. A response from Martin Brunet follows.

Creative spaces: a growing project, p. 13, Wendy Brewin enthuses about the many benefits arising from a project which began to develop a new garden in a care home – but grew into something so much more.

Developing a CST service in Norfolk, p. 15, Sarah Purdy and Gemma Ridel describe efforts to develop a consistent provision of Cognitive Stimulation Therapy programmes across one NHS Trust.

A bright future for innovative day support, p. 16, Angela Downing tells the inspiring story of the work involved in developing innovative day activities in Cornwall.

Tom’s Clubs: time together, p. 18, Kayleigh Orr, Julia Botsford and Kaye Efstathiou explain how this joint service for people with dementia and carers has developed.

Improving environments: new tools for the job, p. 20, Abigial Masterson, Sarah Waller and Maxine Grisley explain how a new set of tools to improve care environments has been developed, tested and put to good use.

Good prescribing in dementia: a brief guide, p. 23, Daniel Harwood explains how certain medications prescrived for older people are especially likely to cause troubling side effects for people with dementia.

Religious communities: what can they offer? p. 26, Peter Kevern and Mandy Walker report on the results of a small study which explored the role that the Anglican church community can play in supporting people with dementia.

Eden: how to bring meaning and freedom back into life, p. 29, Care staff tell Rachael Doeg what the Eden Alternative means to them, and UK co-ordinator Jane Burgess explains more.

Counselling in dementia: eliciting memories, p. 32, Mike Fox explains how counsellors can play an important role in helping people with dementia to remember their past.

Short reports, p. 34

  1. Attachment styles and attachment needs in people with dementia and family carers
  2. Predictive validity of the ACE-R and RBANs for the diagnosis of dementia

How do I access these articles?

Journal: The Australian Journal of Dementia Care, Vol 2 No 3, June/July 2013

AJDC_coverThe Australian Journal of Dementia Care is a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The journal is committed to improving the quality of care provided for people with dementia, by keeping readers abreast of news and views, research, developments, practice and training issues.

Again, I’ve included the contents page for your review.

Summit highlights needs of younger people with dementia, p. 9, Alzheimer’s Australia CEO Glenn Rees reports on the outcome of the Younger Onset Dementia Summit and what younger people identified as priority areas for action

Photo boards create picture of life, p. 10, An easy-to-make biographical tool to share stories of people with dementia, by Paula Bain

Alive to new possibilities, p.12, Tim Lloyd-Yeates from Alive! in the UK explains how to make best use of iPad technology when facilitating reminiscence sessions with people with dementia

Dementia as a roller-coaster, p.14, In the second of a series of books that have influenced his understanding of dementia, John Killick explains the impact of Christine Bryden’s book Who will I be when I die?

Sensory towels give mealtimes a lift, p.15, Jo Bozin explains how a simple award-winning aromatherapy program has improved the mealtime experience for residents and staff in one Melbourne facility

Strategies to improve the hospital journey, p.16, Geriatrician Clair Langford describes the complexities and challenges of providing hospital care for people with dementia and some of the strategies that can be used to reduce the length of hospital stays, improve the patient journey and, in some cases, avoid admission altogether

Bringing dementia design to acute hospital planning, p.20, Leanne Morton and Carol Callaghan report on the experience of bringing the principles of environmental design for people with dementia to the planning of an acute public hospital in NSW

Home alone with dementia, p.22, Living alone with dementia is not impossible, but carries with it the need for specialised services to support a potentially vulnerable but fiercely independent community. James Baldwin, Kylie Sait and Brendan Moore explain

‘Once you start writing, you remember more’, p.25, Liz Young, Jo Howard and Kate Keetch enthuse about ‘life writing’ work with people with dementia

The use of doll therapy to help improve well-being, p.25, Leah Bisiani and Jocelyn Angus discuss the role of doll therapy in working with people with dementia, and how it can be incorporated into a person’s present reality with dignity and respect

How to achieve effective, intuitive communication, p.31, Trevor Mumby outlines the ways in which we commonly miscommunicate, and shows effective communication methods for working with people with dementia

Sexualities and dementia: resources for professionals, p.34, Based on national and international literature and research by Dr Cindy Jones form Griffith University’s Centre for Health Practice Innovation, the Sexualities and Dementia – Education Resource for Health Professionals guide in the first of it’s kind in Australia.

The view from here: creating momentum for positive change, p.36, Kate Nayton, Elaine Fielding and Elizabeth Beattie describe how they developed a successful program to educate hospital staff about dementia care.

Research news section, p. 38, Includes articles on Montessori-based intervention for people with dementia. Italian-Australians’ experience of dementia caregiving. Carer beliefs about day centres and respite programs. Humour therapy found to reduce agitation in nursing homes. Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence.

How do I access these articles?

Book: Alzheimer’s: A Love Story, V. Ulman

I’m reading this book at the moment and it is an utterly truthful personal account of a daughter and sometimes-carer’s experience with Alzheimer’s.  When the last of Vivienne Ulman’s four children left home, she and her husband were poised to enjoy their freedom. Then, her mother’s Alzheimer’s intervened.

alzheimersLoveStoryIn Alzheimer’s: A Love Story, Ulman 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 sustained 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 amply returned this support.

This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concern 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.

Book: Connecting Through Music with People with Dementia: A Guide for Caregivers, R. Rio

ConnectingThruMusicFor people with dementia, the world can become a lonely and isolated place. Music has long been a vital instrument in transcending cognitive issues; bringing people together, and allowing a person to live in the moment. This user-friendly book demonstrates how even simple sounds and movements can engage people with dementia, promoting relaxation and enjoyment. All that’s needed to succeed is a love of music, and a desire to gain greater communication and more meaningful interaction with people with dementia. Even those who have lost many social and intellectual capabilities will still enjoy connecting with others through voice and rhythm, and be able to involve themselves in musical dialogue. Suitable for students or entry level professionals in music therapy, nursing, therapeutic recreation and care-related fields, Connecting Through Music with People with Dementia will also appeal to volunteers and family members caring for a person with dementia.

Website: Alzheimer’s Australia Vic Services

Alzheimer’s Australia Vic has a range of services which can be really useful for carers seeking for new ways to connect with a person with dementia.  As well as our National Dementia Helpline, we offer Counselling and Support, Telephone Outreach Programs, Support Groups, Living with Memory Loss Programs, Services for People with Younger Onset Dementia, Memory Lane Cafe’s, Multicultural Services, Education and Training for Families and Carers, Dementia Behavior Management Advisory Service. Check out the webpage for more information on each service.

Book: The 36-hour Day, N. L. Mace and P. V. 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.

Remember Me, Mrs V?: Caring for my wife: her Alzheimer’s and others’ stories, T. Valenta

MrsVBigA moving memoir of a husband caring for his wife, Marie, who was diagnosed with Alzheimer’s disease at age 54. Tom describes his struggle of looking after his wife, arranging professional and voluntary in-home support and continuing to work. Ultimately he is forced to seek permanent residential care for Marie. There are thirteen cameos of other carers and how they dealt with a family member who was stricken with Alzheimer’s or other form of dementia. This book will be of great assistance to all men and women caring for a loved one.