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.

Recent additions to our collection

Hot pies! Cold drinks! Lovely new resources!

Nothing ignites a librarian’s interest like a padded envelope stuffed with new materials for our collection. Seriously, nothing.  Note to self: get out more.

Below is a curated list of the latest and greatest resources for you. There’s YouTube, there are books, there are journal articles.  Remember, if you are interested in borrowing anything you can, in fact, we encourage you to.  Of course, you’ll need to be a member, which you can find out more about here. For the cost of a cafe meal or two, you can get a whole year’s worth of brain food.  So very worthwhile!

YouTube: Love, Loss and Laughter – Living with Dementia, Fire Films Australia

A filmmaker’s devotion to her grandmother, who has been living with dementia for 15 years, has been the inspiration behind a film that shares the story of the international photographic exhibition, Love, Loss and Laughter: Seeing Dementia Differently.

Corinne Maunder, Producer, Fire Films Australia, said the Love, Loss and Laughter exhibition presented an ideal opportunity to create a meaningful piece about dementia. As an entry in the inaugural Reel Health International Health Short Film Festival, the film explores the messages behind the photos that comprised a six month tour in Australia.

“While making the film I learnt that even though dementia is a condition that people live with, it doesn’t mean a person should be isolated from the everyday activities that they can still enjoy in so many ways.

“The project made me appreciate even more, the time that I have with my grandmother and my mother and aunt’s unswerving dedication as carers,” Ms Maunder said.

American sociologist and social photographer, Cathy Greenblat took the photographs in the United States, France, India, Japan, the Dominican Republic, Canada, Monaco and more recently, in Australia. The exhibition has already touched the hearts of thousands of people as it has travelled throughout the America, Asia and Europe. A book of the same title was published in 2012.

Teen fiction book: Back to Blackbrick, Sarah Moore Fitzgerald

BackBlackbrickPitched at late primary school kids and early secondary students.  This is a well-written, insightful and modern story of a young care-giver’s struggles to accept the many changes and responsibilities being forced upon him and still connect with the grandfather he knows and loves. It elegantly identifies and articulates the multi-layered strands of grief and loss and day-to-day coping that families experiencing dementia know all too well.

‘The ghosts in your life don’t ever really go away. Every so often they will whisper to you, and they will brush past you and maybe you will even feel their misty sweet breath on your skin. It’s fine. Don’t worry about it too much.’

Lost memories, lost times, lost lives – a stunning new debut novel. Cosmo’s brother Brian died when he was ten years old. His mum hides her grief by working all the hours God sends and Cosmo lives with his grandparents. They’ve been carefree days as Granddad buys him a horse called John and teaches him all he knows about horses. But the good times have to come to an end and although he doesn’t want to admit it, Cosmo knows his Granddad is losing his mind. So on one of the rare occasions when Granddad seems to recognise him, Cosmo is bemused that he gives him a key to Blackbrick Abbey and urges him to go there. Cosmo shrugs it off, but gradually Blackbrick draws him in . . . Cosmo arrives there, scared and lonely, and is dropped off at the crumbling gates of a huge house. As he goes in, the gates close, and when he turns to look, they’re rusty and padlocked as if they haven’t been opened in years. Cosmo finds himself face to face with his grandfather as a young man, and questions begin to form in his mind: can Cosmo change the course of his family’s future?

Fiction: Green Vanilla Tea, Marie Williams

green vanilla tea

This story describes the impact of dementia on the whole family but in a positive light. It outlines the ways in which the boys find the personhood of their father amongst the diagnosis. The man who was their father is not lost. It also touches on the profound and ongoing impact living with someone with dementia and motor neurone disease has on a family. This is a story of human connection, of love and of grace.

When 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. Her book, Green Vanilla Tea, has just been named winner of the 2013 Finch Memoir Prize.

Families and Carers: Living with Dementia: A Practical Guide for families and personal carers, edited by Esther Chang and Amanda Johnson

living with dfementiaLiving with Dementia: A practical guide for families and personal carers provides a sensitive, direct and highly accessible account of the complexities and challenges that a diagnosis of dementia presents. Written by aged care experts, including academics, nurses, medical practitioners and family advocates, Living with Dementia offers evidence-based research, supported by clear chapter outcomes, key terms and real-world vignettes. Practical strategies are integrated throughout to support caregivers, paid and unpaid, in the home environment and in residential care settings.

The book offers advice on how to manage everyday activities such as feeding, toileting, personal hygiene and grooming, and coping with challenging behaviour. In recognising the needs of the whole person, mental stimulation and spirituality are also addressed. An introduction to commonly used medications, complementary therapies and effective communication strategies are provided, as well as information about caring for the dying, and most importantly, looking after you – the carer.

Whether you are an Assistant in Nursing, an Enrolled Nurse, a family member or a friend caring for a loved one, Living with Dementia will assist you to move beyond the negative perceptions, and enable a meaningful life for the person with dementia, within the limitations of the disease.

Fiction: Angela and the Cherry Tree, Raphaele Frier and Teresa Lima

angela_and_the_cherry_tree_webThis lovely picture book can be enjoyed by all ages.  Don’t be deceived into thinking it’s only for kids, the lyrical story has aspects that can be explored and understood in different ways depending on your age and personal experience.  This is a story that I would happily read with my four year old and he would think it was a lovely tale about a grandmother and her (imaginary) grandchild.  I would interpret it as an attempt to imagine and explain what it might be like to experience dementia. Whatever your take on the story is, its gorgeous, heart-warming with beautiful illustrations.

“Angela wakes up full of hope. She is expecting a visitor. She prepares her hair, puts on perfume and bakes her speciality, shortbread cookies. She waits, impatiently at times, and finally the little girl arrives.

Angela and the Cherry Tree provides a touching insight into the mind of a person suffering from dementia. It is a rare and poignant picture book, handling a sensitive subject with respect and dignity. Its insights and beauty are derived from perceptive, lyrical detail and stunning illustrations.”

DVD: You’re looking at me like I live here but I don’t, Scott Kirschenbaum

you are looking at me_webPersonally, I greatly enjoyed this unique, warts-and-all but incredibly respectful and dignified film about Lee Gorewitz, a person with dementia. Lee is an engaging, entertaining and likeable protagonist who effortlessly brings you into her world and you leave the richer for the time you have spent there with her.

This film may be confronting for some, with it’s clear-sightedness on the realities of day-to-day living with dementia, however as an example of person-centred thinking, Scott Kirschenbaum manages to capture and convey Lee’s essential personality above and beyond her diagnosis of dementia.

“In Danville, California, Lee Gorewitz wanders on a personal odyssey through her Alzheimer’s & Dementia care unit. From the moment she wakes up, Lee is on a quest – for reminders of her past, and her identity. A total immersion into the fragmented day-to-day experience of mental illness, YOU’RE LOOKING AT ME LIKE I LIVE HERE AND I DON’T is filled with charismatic vitality and penetrating ruminations that challenge our preconceptions of illness and aging. Here is one extraordinary woman who will not let us forget her, even as she struggles to remember herself.”