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.

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.”

Dementia resources for kids and teens

Explaining dementia is tough at any age, and when your children or grandchildren are feeling the effects of interacting with a person with dementia it can be difficult to know how to frame the discussion with them. Today we’ve focused on showing you items in our collection that can support those discussions and enable kids to investigate on their own terms.

We’ve divided up our resources based on age-ranges, but please use these as a guide only.  Choose the most relevant resources based on what you intuitively feel will appeal most to your audience!

Early Primary School kids (aged 5+)

Book: Wilfrid Gordon McDonald Partridge, M. Fox

WilfredGordonWilfrid Gordon McDonald Partridge, knows and likes all of the old folks in the home next door, but his favorite is Miss Nancy Alison Delacourt Cooper she has four names, too. Hearing that she has lost her memory, he asks the old folks what a memory is (“Something from long ago” ; “Something that makes you laugh;” “Something warm;” etc.), ponders the answers, then gathers up memories of his own (seashells collected long ago last summer, a feathered puppet with a goofy expression, a warm egg fresh from the hen) to give her. In handling Wilfrid’s memories, Nancy finds and shares her own.

Book: My Gran’s Different, S. Lawson

my_grans_diffCharlie’s gran doesn’t go to the footy, make cakes or work in the garden, because Charlie’s gran is different. A story of the love and complete acceptance that only a child can give.

Book: Let’s Talk About When Someone You Love has Alzheimer’s Disease, E. Weitzman

when_someone_you_love_has_ADKendra thought Grandma had forgotten about her.  This book explains Alzheimer’s from the perspective of an early to mid-primary school aged child.  It explains dementia, the stages of the disease, caring for someone with dementia and what that means, and normalises responses and emotions attached to seeing dementia affect a loved one.

For Mid Primary School kids (aged 6-8)

Book: Grandma Doesn’t Know Me Anymore, E. Gray

grandma_doesnt_know_meThis is the story of 11 year old Andrew, whose grandmother has dementia. Dementia and it’s impact on Andrew and his family is explained simply and thoughtfully.

Book: Grandpa’s Stories, R. Tonkin

grandpas_storiesPatrick’s grandpa loved to tell stories about his childhood – wonderful stories about pet foxes and fun pranks; life as it was when Grandpa was a boy. Patrick has heard these stories often and knows them very well. So when Grandpa struggles with the symptoms of Alzheimer’s disease and has trouble remembering, it is Patrick who must tell Grandpa’s stories.

Book: Sachiko Means Happiness, K. Sakai

sachikoA simply told, understated story of young Sachiko’s acceptance of her grandmother’s Alzheimer’s disease is illustrated in warm, sunset tones, with insets featuring traditional Japanese motifs. The story is touching without being sentimental, and the setting of this small drama makes the book useful for those looking for contemporary images of Asian-American children.

Book: The Smell of Chocolate, B. McGuire

smellofchocolateThis book incorporates a story of Ben and his grandfather, Pog, which captures what living with a person with dementia is like – the highs and the lows. It also contains a very accessible ‘fact file’ on Alzheimer’s, information on brain change, the difference between forgetting and memory loss, ways to connect with someone with dementia, and some messages of hope and insight to conclude the book.

Book: Mile-High Apple Pie, L. Langston and L. Gardiner

mile_high_apple_pieAgainst the background of family life, this picture-book tells the story of a young girl’s evolving relationship, including growing understanding and emotional adjustment, with her grandmother who comes to live with the family when she begins to lose her memory.

For Late Primary School kids (aged 8 – 10)

Booklet: The Milk’s in the Oven

milks-in-oven-rebrand-compI can’t say it better than the intro to this great little booklet, so without further ado…

“Some of you may know somebody who has dementia. Maybe they live with you and you help to take care of them. If so, you won’t need me or anyone else to tell you how difficult and upsetting it can be. You want to look after people you love, but it’s not easy to know what to do for the best when someone has dementia. Often people with dementia forget how to do things, so they might put the milk away in the oven, instead of the fridge. Sometimes you feel really angry because nothing you do seems to make any difference. The booklet tells you about how people with dementia behave and feel, and gives you a few ideas to try and help you understand more.” p. 2
This booklet contains some great exercises for giving kids some insight into what having dementia might be like and ways to connect with a person with dementia. It’s available online. Ah, the wonders of the internet!

Book: Captain Mack, J Roy

captain_mackThis book describes the unlikely friendship between a boy and a man with dementia. Told from Danny, a late primary school-aged boy’s perspective its a unique story about relating to a person with dementia, focusing on the person and not the illness and finding the joy in the connection.

Book: The Memory Box, M. Bahr

When Gramps realizes he has Alzheimer’s disease, he starts a memory box with his grandson, Zach, to keep memories of all the times they have shared.The_memory_box

For Late Primary – Early Secondary

Book: Pearl Verses the World, S. Murphy

pearl_vs_worldA moving illustrated verse novel about a girl dealing with isolation at school, and with her grandma’s illness at home.
At school, Pearl feels as though she is in a group of one. Her teacher wants her to write poems that rhyme but Pearl’s poems don’t. At home, however, Pearl feels safe and loved, but her grandmother is slowly fading, and so are Mum and Pearl. When her grandmother eventually passes away, Pearl wants life to go back to the way it was and refuses to talk at the funeral. But she finds the courage to deliver a poem for her grandmother that defies her teacher’s idea of poetry – her poem doesn’t rhyme; it comes from the heart. A powerful and moving story about loss, grief and isolation. Deals with sensitive issues of dementia from the child’s perspective.

Book: What’s Wrong with Grandma?: A Family’s Experience with Alzheimer’s, M. Shawyer

whats_wrongWhat’s Wrong with Grandma? follows one family’s journey through the early stages of Alzheimer’s disease, as told by the youngest child, Ellen. Along with her family, Ellen tries to fit together all the scattered pieces of puzzle concerning her grandmother’s behavior. Young Ellen expresses, as only a child can, the frustration, sadness, and even anger felt toward Grandma’s peculiar behavior, her lapses of memory, and her unexplained fears. But she also captures the warmth and humor of special moments the family shares with Grandma. Readers will learn, as Ellen does, that there are no simple answers, and that with understanding and love families can embrace their elders with Alzheimer’s and cherish their time together.

Book: Back to Blackbrick, S. 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?

For Teens

Website: When Dementia is in the House

when_dementiaThis website is a truly fantastic thing.  Plain-speaking and to the point, it describes the experience of living with a person with dementia, advice from others in the same situation, pitfalls and how to avoid them and useful information from medical professionals.

Short film: My Name is Lisa, Ben Shelton Films

This utterly brilliant short film illustrates in heart-rending detail what it’s like to live with a parent with dementia. I highly recommend you watch it, although it may be wise to have a tissue or two handy!

Book: Understanding Dementia: A guide for young people

understanding_demAside from a slightly naff name, I mean who exactly are ‘young people’? It’s a confusing term to say the least! This book is pretty great. It identifies common questions, answers them and gives some great suggestions on how to cope and what resources you have to assist you. Also, as well as coming in to grab our copy, you can access it online.

Book: The Long and Winding Road, J Gillard

long_and_winding_roadThe Long and Winding Road describes the different forms of dementia and what happens to people with dementia and to their families. It outlines how young people may be affected and how they may feel, and offers practical suggestions to help overcome some of the difficulties. The book also aims to dispel the fear and loneliness experienced by young people encountering dementia in someone they love. Written in 1995, it’s a piece from our ‘way back collection’ but worth a look.

Book: Fading Memories: An Adolescent’s Guide to Alzheimer’s Disease

fading_memoriesWhen a loved one is diagnosed with Alzheimer’s Disease, the whole family is affected. Fading Memories is written by young people who are coping with Alzheimer’s Disease in their lives. This book outlines what Alzheimer’s Disease is and what happens to a person who has Alzheimer’s. You will find out how you can help care for your loved one with Alzheimer’s, and how you can maintain a positive relationship with the Alzheimer’s patient, your family and friends. In addition to practical information, Fading Memories includes personal essays from adolescents who have experience living with Alzheimer’s first-hand.