Films about dementia

A growing collection of resources exists about dementia – extensive research articles, non-fiction, fiction, memoirs, poetry and film. Today’s post covers three films about dementia—or dementia-like symptoms—and the impact dementia has on the person with dementia, those caring for them and others in their life.

We have many more films available about dementia, so don’t hesitate to come in and see us if you’d like to find out more about our film collection. If you’re interested in any of these titles, you can request them here – remember, you have to be a member of Alzheimer’s Australia Vic.

Still mine, 2012still mine

This is an intimate portrait of Frank, a man in his late eighties who finds himself caring for his wife of 61 years. Whilst no formal diagnosis is ever made, it is apparent that Irene has dementia and requires more support to continue to live at home. Facing the realities of their changing circumstances, Frank decides to build a dwelling more suitable than their long-term family home and is thrust into the contemporary world of permits, plans, building codes and the consequences of not complying with these restrictions.

Whilst taking on more tasks within the home, to compensate for Irene’s changing abilities, Frank also contends with the concerns of his seven children and their preference to have Irene, or possibly both Frank and Irene, getting professional care or support.

Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.

fireflyFirefly dreams, 2004

A Japanese sub-titled film about a troubled teenage girl who forges an unlikely friendship with an older person with dementia, becoming her carer and companion. This coming of age story focuses on 17 year old Naomi, sent to spend the summer holidays with her aunt in a small Japanese village whilst her parents navigate their separation and increasing inability to cope with Naomi’s behaviour. Initially, Naomi is stifled by the slower pace and physical demands of working with her aunt’s family in the hotel they run. She misses the city and is frustrated by her cousin, Yumi. Naomi goes to visit Mrs Koide, whom she knows from her childhood and at first is baffled by the inconsistencies in her elderly relative’s behaviour. As the summer passes, Naomi grows closer to Mrs Koide and her aunt’s family and whilst sometimes puzzled by Mrs Koide’s abrupt changes of topic, she tolerates and supports Mrs Koide’s needs.

Dementia is not overtly referred to in this film and the carer role that Naomi occupies is quite lightweight – focused on companionship rather than the day-to-day requirements of caring. The representation of dementia in this film focuses on some fairly mild forgetfulness, the person with dementia revisiting and re-enacting key past life experiences and some hospitalisation scenes.

In this film, the person with dementia dies and the implication is that her death was directly linked to dementia.

finding-nemo-dvdFinding Nemo, 2003

Although not immediately a dementia film, in Finding Nemo the character of Dory exhibits dementia-like symptoms which may help a younger child understand and experience dementia in a film.

This film, about a fish called Marlin looking for his lost son, Nemo, with the help of an often-forgetful and distracted fish called Dory. Dementia is not directly referred to in the film. Instead, Dory describes her condition as ‘short term memory loss that runs in the family’. As a result, the short term memory issues that can be experienced as part of dementia are front-and-centre, however the film also showcases Dory as a real person, not a caricature and someone who is able to contribute in her own right to her friend’s predicament. It shows some of the challenges of dementia, where some very routine procedural activities remain perfectly intact whilst other newer memories are tenuous and readily forgotten.

Finding Nemo also deals with Dory’s own anxiety, frustration and sometimes sadness with the limitations of her short term memory issues.

Overall, for younger children this could be a good film as a discussion piece to expand on a child’s experience of dementia and perhaps through Dory, their feelings about dementia.

 

 Note: these reviews are the opinion of an individual, and do not represent the views of Alzheimer’s Australia, or Alzheimer’s Australia VIC.

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. It typically affects people at a younger age than Alzheimer’s disease, with symptoms beginning in the 50s or 60s, and sometimes younger. Almost a third of people with FTD have a family history of dementia.

The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.

Book: Frontotemporal dementia syndromes, John R Hodges. 2007.

frontotemporal dementia syndromesIn the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.

Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow  &  Gail Elliot. 2012.

frank and tess - detectives_webFrontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.

This is a free, downloadable resource you can access here.

Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014

ADOD28(1)Jan-Mar14Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.

Note: if you’re interested in this article please use this form to request it.

Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.

AnEvolutionOfLoveBob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50.  He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

Website: AFTD Kids and Teens

aftd kids and teens_webWhen a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.

YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.

An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).

Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens,  The Association for Frontotemporal Degeneration. c2012.

what about the kidsYou are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.

FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.

As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.

This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.

This book is available as a free download here.

Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.

Pick's Disease and Complex_webPick’s disease, a form of dementia often accompanied by aphasia has been know for over a century.  The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose.  This book presents the clinical and pathological manifestations of Pick’s disease.  It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease.  It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.

YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant.  2010.

Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

Note: this is an hour-long feature film.

Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014

dementia journalAtypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

Note: if you’re interested in this article please use this form to request it.

Help Sheet: Frontotemporal Dementia, Alzheimer’s Australia

This Help Sheet describes a type of dementia known as frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.
It’s a free download and might be a good resource for friends and family as it’s succinct.

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.

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.”

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.