World FTD Awareness Week – 25 September to 2 October 2016

Frontotemporal dementia (FTD) is an umbrella term used to describe a group of younger onset neurodegenerative conditions with a typical onset between the ages of 45 and 65 years. This diverse group of uncommon disorders primarily affects the frontal and temporal lobes of the brain — the areas generally associated with personality, behaviour and language.

FTD is life-altering for those affected as well as for their loved ones.  Yet this disease is little known and poorly understood.

This week marks the second annual World FTD Awareness Week.  In support of this, we are posting a small collection of resources on FTD that we hope will be of interest to our readers.

Alzheimer’s Australia Helpsheet Frontotemporal dementia (rev 2016)helpsheets-aa

This Help Sheet describes  frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.

 

Alzheimer’s Australia Video: What is  Frontotemporal dementia?

livingwithd_what-is-ftd

Book: What if it’s not Alzheimer’s : a caregiver’s guide to dementia
3rd ed /  edited by Lisa Radin & Gary Radin (2014)

what-if-its-not-alzheimers

This book is a comprehensive guide dealing with frontotemporal degeneration (FTD. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD.
Beginning with a focus on the medical facts, the first part defines and explores FTD as an illness distinct from Alzheimer s disease.
The next section on managing care examines the daily care routine including exercise, socialization, adapting the home environment, and behavioural issues.
The final section focuses on the caregiver, in particular the need for respite and the challenge of managing emotions.
This completely revised edition follows recent worldwide collaboration in research and provides the most current medical information available, a better understanding of the different classifications of FTD, and more clarity regarding the role of genetics.

where-the-light-gets-inBook: Where the Light Gets in : Losing My Mother Only to Find Her Again
by Kimberly Williams-Paisley , Foreword by Michael J Fox (2016)

Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. Where the Light Gets In tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, Where the Light Gets In is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.

green-vanilla-tea_smlBook: Green Vanilla Tea
by Marie Williams (2013)

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, was the winner of the 2013 Finch Memoir Prize.

In a compelling story that spans both joy and sadness, Marie Williams writes about the bonds in her family, her sons’ love for their father, the spirit that sustains them all during the most testing of experiences and about the struggle they faced in dealing with the inexplicable. Green Vanilla Tea is a story of compassion and courage in the face of a little understood illness. Above all, it is a love story.

ftd-toolkitWebsite: The FTD Toolkit by Eastern Cognitive Disorders Clinic

This website supports those wishing to better understand FTD. Information is divided into downloadable modules and also includes specific information on FTD as a younger onset dementia.

 

looks-like-lauryDVD: Looks like Laury sounds like Laury
by Pamela Hogan & Connie Shulman (2015)

What would you do if you started to disappear?
At the age of 45, Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Laury lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.
Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

Filming started during a hopeful period, with no idea of what lay ahead.
Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

aftda-websiteWebsite: The Australian Fronto-Temporal Dementia Association

A useful website for those looking to get more involved in supporting those with FTD and promoting awareness of FTD.

 

activities-for-the-family-caregiver-ftdBook: Activities for the Family Caregiver : Frontotemporal Dementia
by Scott Silknitter, Vanessa Emm and Robert Brennan

From the groundbreaking series written specifically for family caregivers, Activities for the Family Caregiver – Frontotemporal Dementia / Frontal Lobe Dementia / Pick’s Disease: How to Engage / How to Live offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure. Discover how to turn daily activities and routines into opportunities to start some joy. Written by nationally recognized leaders in activities for those with cognitive disabilities, Activities for the Family Caregiver – Frontotemporal Dementia / Frontal Lobe Dementia / Pick’s Disease: How to Engage / How to Live provides much-needed information to address the unique social needs of those with frontotemporal dementia and those who care for them.

green-nailsBook: Green Nails and Other Acts of Rebellion
by Elaine Soloway (2014)

Early in 2009, after more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor. Charming, frank, and ultimately uplifting, Soloway’s story reveals how rich with love and appreciation a life compromised by an incurable illness can be and how even widowhood can open a door to a new, invigorated life.

teepa-snow_understanding-frontotemporal-dementiasDVD: Understanding Frontotemporal Dementias
by Teepa Snow (2014)

Frontotemporal Dementias (FTDs) are particularly challenging for families and professional caregivers. Odd, often impulsive behaviors and potential loss of language are just a few symptoms causing frustration and anxiety.

Learn with Teepa Snow
– Why proper screenings truly matter, and where to get them
– About causes and symptoms of different types of FTDs
– Which changes happen in the brain, and how they affect the person with FTD
– How to deal with challenging behaviors without sacrificing the relationship
– Which medications can help or potentially cause harm
– How to best manage the disease with current treatment options
– Why supportive communication and a positive physical approach are vital to offer the greatest quality of life, for the person with FTD and caregiver alike

jdc_septoct2016_intranetArticle: Living well with progressive non-fluent aphasia by Jane Twigg and Jenny La Fontaine, The Journal of Dementia Care, Vol. 24, No. 5, September/October 2016, p.16-18

Jane Twigg has a rare form of dementia but her battle to get a diagnosis was fraught with difficulties. Here, supported by Jenny La Fontaine, she offers some advice for professionals.

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

ajdc_aprmay2015Article: Creative support for complex needs: living with bvFTD by Jenny La Fontaine, Anna Buckell and Jan Oyebode, Australian Journal of Dementia Care, Vol. 4, No. 2, April/May 2015,p.23-26

In the first of two articles on behavioural variant frontotemporal dementia, Jenny LaFontaine, Anna Buckell and Jan Oyebode explain the distinguishing features of this rare type of dementia and suggest a range of ways of offering individualised support.

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

ajdc_junjul2015Article: Family experiences and needs: living with bvFTD by Jenny La Fontaine, Anna Buckell, Jan Oyebode and Jayne Ford, Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.24-27

In the second of two articles on behavioural variant frontotemporal dementia, the authors consider the families who live with the condition, and their support needs.

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

ajdc_dec14jan15Article: Semantic dementia: a long, sad, lonely journey by Myra Lamont, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.25-27

Myra Lamont shares the story of her husband Archie’s altered diagnosis – from Alzheimer’s disease to semantic dementia – and the lack of professional awareness and support they have encountered along the way.

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

Website:rare-dementia-support
Frontotemporal Dementia Support by Rare Dementia Support

A UK-based site that offers information and support to
people with FTD, their family and friends and health care professionals.

 

 Earlier Dementia Resources FTD blog (2014)

You may also be interested in viewing our previous blog post on FTD (2014) which includes many more resources about FTD.

 

Dementia Awareness Month: You Are Not Alone – communicating, socialising and friendships

For a person with dementia, their family and other carers, one of the hardest changes is a sense of isolation. Today’s post is about socialising, friendships and communicating with people with dementia. It includes feedback from people with dementia on what matters to them, and there’s no better source of information!

YouTube: You Are Not Alone, Alzheimer’s Australia

hwdeffectivecommnWebpage: Effective Communication, Alzheimer’s Australia Vic

Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia, their families and carers. In these short, helpful videos you will learn some practical communication tips.

communicating-across-dementiaBook: Communicating Across Dementia: How to Talk, Listen, Provide Stimulation and Give Comfort by Stephen Miller (2015)

Information and advice for making vital communication easier and more effective.

If someone close to you has dementia (Alzheimer’s Disease is the most common type) they need your help. You will know that communication has become more difficult and frustrating. This jargon-free book explains why this happens and how you can make important improvements by re-thinking your whole approach. Areas covered include:
– Creating the right conditions for good communication
– Making conversation easier
– Non-verbal communication
– Adaptations to the home
– Finding stimulating activities
– Dealing with difficult situations

Looking after a person with dementia involves many challenges. Good and effective communication can help to make these challenges more manageable and greatly reduce stress levels, both in the person with dementia and in his or her carer.

jdc_julyaug2016Article: Communication skills: emPoWereD Conversations, Sue Bellass, Phil McEvoy and Tracy Williamson, The Journal of Dementia Care, July-August 2016, p.16&18

Ordinary communication between people can be disrupted by dementia, but a new training programme offers a solution.

“Communication is a core aspect of human experience and has a profound effect on the quality of our lives. Being able to express ourselves, and to understand other people, shapes our sense of who we are and how we connect with our social world. The experience of dementia can disrupt interactions between people, potentially leading to frustration, misunderstandings and alienation (Snyder 2006). Here, we will report on a communication training programme designed to overcome some of these difficulties.” (p.16)

Note: should you be interested in this article please request it through our handy form.

Toolkit: Community Café Toolkit, Alzheimer’s Australia Vic

If you like getting involved, setting up a local Community Cafe may be right for you.

The toolkit contains:

  • A manual with instructions on ‘how to’ establish and run a community café in your region; and
  • Tools in the form of checklists, templates and resources to assist you in getting started and to assist in the day-to-day running of your café.

To request your copy of the Community Café Toolkit please click this link and then follow the prompts. If you are in Victoria, Australia please use this link instead.

aja351coverArticle: Facing the times: A young onset dementia support group: FacebookTM style, Denise Craig and Edward Strivens, p.48-53, Australasian Journal on Ageing, Vol. 35, Iss. 1, March 2016

Young onset dementia accounts for up to 1 in 10 dementia diagnoses. Those diagnosed face premature transition into the realm of aged care services and adjustment to an illness of ageing prior to age 65. To help elicit communication of the perceived psychosocial needs of this group, provide a platform to gain peer support and advocate for increased awareness, the Young Onset Dementia Support Group was established on the social networking site, FacebookTM. Followers post comments, read educational or otherwise interesting news feeds, share inspirational quotes and access others living with dementia worldwide. Facebook provides a means of rapid global reach in a way that allows people with dementia to increase their communications and potentially reduce isolation. This paper was authored by the page administrators. We aim to highlight the promising utility of a social network platform just entering its stride amongst health communication initiatives.

Note: should you be interested in this article please request it through our handy form.

when-someone-you-know-has-dementiaBook Chapter: Chapter 5, What Are Friends For? from When someone you know has dementia : practical advice for families and caregivers by June Andrews, 2016

“Dementia presents a particular problem to friends if you are not part of the family. You might not know much about it yourself and the whole idea of it is terrifying. You want to help but you are afraid of being embarrassing or inappropriate and you just don’t know what would make a difference. Reading this chapter will provide guidance what often does make a difference, based on what people with dementia their family caregivers say.” (p.79)

For those living in Victoria

Socialise: Memory Lane Cafes, Alzheimer’s Australia Vicmemory-lane-cafe

The Memory Lane Café program is available for people with dementia and their family members.

The Australian and Victorian governments, under the Home and Community Care Program, have provided  funding for Café Style Support Programs that are offered throughout Victoria.

These cafés provide an opportunity for people with dementia and their family members to enjoy time together with some refreshments and entertainment, in the company of people in a similar situation to themselves.  Alzheimer’s Australia Vic counselling staff and trained volunteers also attend.

For more information, click here.

dam2016publectPublic Lecture: International action on dementia, Dr Ron Petersen, 22 September 2016

Dementia Awareness Month 2016 signature lecture in Melbourne will feature international dementia expert, Dr Ron Peterson (Mayo Clinic, USA). Dr Petersen will share his latest insights and research findings about dementia and the US and global experiences in establishing a national dementia strategy. Dr Petersen is a world leader in the field of Alzheimer’s disease and dementia. He is Director of the Mayo Clinic in the U.S. and was also Ronald Reagan’s personal physician and treated the former President of America’s Alzheimer’s disease.

Dr Petersen will discuss:

  • Latest insights and research findings about mild cognitive impairment and dementia
  • The US and global experiences in establishing a national dementia strategy

Who is this lecture for?

The general public, people with dementia, carers, service providers, health and aged care professionals, students, businesses and local government representatives are invited to attend this lecture.

Lewy body disease (Lewy body dementia)

You may already know that dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Lewy body disease is one of the diseases that causes dementia.

This post provides a set of resources specifically about Lewy body disease.

lewy body dis alzaust webpageWebsite: Lewy body disease, Alzheimer’s Australia website

This webpage gives a succinct, plain-English overview of Lewy body disease. It is useful as an introductory document and as a resource to share with family and friends who wish to learn more.

YouTube: Let’s Talk About Lewy Body Disease, Alzheimer’s Australia Vic, 2012

This series of online videos feature Robin Groves, who was diagnosed with Lewy body disease in 2006 and his wife Lis. They discuss how Lewy body disease has affected their lives, including some of the challenges they have faced. The resource is divided into three chapters.

Chapter 1: Robin and Lis

Robin and Lis talk frankly about the condition, and about the changing behaviours Robin experiences.

Chapter 2: A typical case?

Discusses signs and symptoms of the illness.

Chapter 3: Visiting the doctor

Identifies strategies to ensure the doctor or medical professional gets the information they need to provide appropriate ongoing care.

emerging from the shadowsBook:  Emerging from the shadows by Helga Rohra (2016)

‘What’s happening to me?’ Successful translator and linguist Helga Rohra was understandably good with words – that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 – but she hasn’t let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

teepa snow_lewy body dementia_webDVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)

Learn:
– about common LBD symptoms
– how to get a good and complete diagnosis
– about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
– how to adapt your caregiving skills to the needs of a person with LBD
– how to utilize visual and verbal cues to increase understanding and cooperation
– about hands-on skills for LBD
Includes practical information on mid to late stage dementia, sleep problems, hallucinations, practical tips on daily care, activities of daily living, medication issues , and how to talk to doctors about medications – it is a very hands on approach . It also describes how Lewy bodies are more prevalent than previously thought.

a carers guide to Lewy body dementiaBook: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth  (2010)

Although Lewy Body Dementia is the second leading cause of degenerative dementia in the elderly, it is not well known or understood and is often confused with Alzheimer’ Disease or Parkinson’s. A Caregivers Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy Body Dementia really is.
A Caregivers Guide to Lewy Body Dementia is written in everyday language, and is filled with personal examples that connect to the readers’ own experiences. It includes quick fact and caregiving tips for easy reference, a comprehensive resource guide, and a glossary of terms and acronyms.

This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.

Dignifying Dementia a caregivers struggleBook: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)

A powerful, beautifully-written account of the author’s nine-year journey to care for her husband, who has Lewy Body Dementia. Elizabeth Tierney’s book is moving, harrowing, fascinating and instructive. It is also the story of one woman’s determination to honor her husband’s humanity and how she succeeded against all odds – a triumphant love story.

Helpsheets: Lewy body disease helpsheets, Alzheimer’s Australia

Alzheimer’s Australia has produced a collection of helpsheets about Lewy body disease, covering different aspects of this disease and targeted to different audiences.

LBDA websiteWebsite: Lewy Body Dementia Association, Inc.

This American association is specifically devoted to Lewy Body Dementia and may include useful information for people with Lewy body dementia, their families and carers.

living with lewy body dementiaBook: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings  (2014)

If you’re struggling to care for someone with Lewy Body Dementia, or any Parkinson related disease, and you are looking for some professional help in dealing with the many difficult or awkward situations that arise, then this book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.

The book is informative: Certainly it provides “meat and potatoes” suggestions for any caregiver, but it is much more than that. Anyone choosing to read this book will have a better understanding of the role of a caregiver, and how we have many positive moments sandwiched among the more challenging. It is a faith-based self help book. I expected God to show up every day and thankfully He always did. (the author)

Graphic Novel: Dad’s Not All There Any More : A Comic About Dementia by Alex Demetris (2015)

dad's not all there anymor“Louie what?” John’s dad, Pete, was already diagnosed with Parkinson’s disease when he began to have some very strange experiences, not least of which was the little red-haired girl who followed him around the house. Eventually diagnosed with Lewy Body Dementia (LBD), his hallucinations and other symptoms became more frequent and intense, and Pete moved into a care home. Based on his family’s experience of his father’s LBD, Alex Demetris’ comic explores with tenderness and humour one of the most common yet often unheard of types of dementia; what it is, its symptoms, living in a care home and the impact on people living with the condition and their families.

activities for the family caregiver LBDBook: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)

From the groundbreaking series written specifically for family caregivers, “Activities for the Family Caregiver – Lewy Body Dementia: How to Engage / How to Live” offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living tips, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure.

dementia with lewy bodiesBook: Dementia with Lewy bodies and Parkinson’s disease dementia  /  edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu  (2006)

Filling a noticeable gap in the market for a new text solely focused on Dementia with Lewy Bodies, this book discusses cutting-edge topics covering the condition from diagnosis to management, as well as what is known about the neurobiological changes involved.   With huge progress having been made over the last decade in terms of the disorder’s recognition as a common cause of cognitive impairment, its clinical features, its underlying neurobiology, investigative changes, and management, this is undoubtedly a much-needed work in what is an important and rapidly progressing field.  Written by leading figures in dementia research, this clearly presented, modern text is equally accessible to clinicians such as old-age psychiatrists, geriatricians and neurologists, as well as allied health professionals with a particular interest in the area.

Dementia resources for young people

Dementia is a complicated and emotional topic for everyone. Many resources are available for adults but only a few resources are specifically designed for the information needs of young adults, teenagers or children. This post features a selection of resources on dementia for young people.  All titles are available for loan through the Alzheimer’s Australia Vic library and may also be available via your local public library service.

Website: Dementia In My Family by Alzheimer’s Australia Vic

dementiainmyfamilywebsite_smallChildren and teens of all ages impacted by a diagnosis of dementia in their family can now find support and information at our newly launched website, dementiainmyfamily.org.au

Featuring videos, games and quizzes, this site is full of colourful, interactive, age-appropriate content about dementia. Kids and teens can read the shared experiences of others in similar circumstances and learn they are not alone. They will find ideas to make sense of what is happening in their families and how to take care of themselves, as well as information on how to get more help if they need it.

This excellent site offers young people of all ages tailored information on dementia.

Books for readers aged 0 – 6

Book: When My Grammy Forgets, I Remember : A Child’s Perspective on Dementia By Toby Haberkorn, Illustrated by Heather Varkarotas (2015)

when my grammy forgets I rememberWhen My Grammy Forgets, I Remember: A Child’s Perspective on Dementia provides conversational openings and stimulates discussion between parents and children about compassion and this debilitating disease. Alzheimer’s and other types of dementia not only affect the person living with the disease, but the entire family, including the children. This story explores the difficult reality of dementia and the bittersweet changing relationship between a granddaughter and her grandmother. By including children in the family discussion, parents help them become resilient and empower them to provide comfort for the grandparent or loved one with Alzheimer’s.

Book: My Grandpa by Marta Altes (2013)

my grandpaMy grandpa is getting old but that’s how he is, and I love him. This unique look at old age through the eyes of a young bear is big-hearted, poignant, and beautifully observed. Whether they are boldly traveling the world in an armchair or quietly listening to the song of a hidden bird, the mutual adoration of grandfather and grandson is warmly evident.

Book: A day with grandpa by Fiona Rose (2014)

day with grandpaTake your child by the hand and enter grandpa’s enchanted world, where everything is possible for a day. Every page bursts forth with magical images that add extra meaning to the poetic story of a child and his grandad.

Books for readers aged 6 – 10

Book: Weeds in Nana’s Garden : A Heartfelt Story of Love That Helps Explain Alzheimer’s Disease and Other Dementias. By Kathryn Harrison (2016)

weedsA young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden. Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers. As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, and learns to take-over as the magical garden’s caregiver. Extending from the experience of caring for her mother, artist Kathryn Harrison has created this poignant story with rich illustrations to candidly explore dementia diseases, while demonstrating the power of love. It is a journey that will cultivate understanding and touch your heart. After the story, a Question and Answer section about Alzheimer’s Disease and dementia is included.

YouTube: Kids4Dementia, Alzheimer’s Australia NSW (2015)

Children and grandchildren of people with dementia speak frankly about what it is like having a relative with dementia.

Book: Always my grandpa : a story for children about Alzheimer’s disease by Linda Scacco, illustrated by Nicole Wong (2006)

always my grandpaThis heartwarming tale describes what it is like to be close to a grandparent who has been diagnosed with Alzheimer’s Disease. Daniel and his mom spend every summer with his Grandpa at a cottage by the sea. Daniel loves these summer visits: playing baseball, walking on the beach, watching the sunset, and hearing Grandpa’s stories of his fishing boat. As the summer passes, Grandpa begins to change. Daniel learns that since Grandpa has Alzheimer’s disease, he will have trouble remembering all the things that belong to him—his clothes, his words, his memories—and eventually, his own grandson.

Through gentle narration and easy-to-understand explanations, the book explains Alzheimer’s disease and how it affects children, and families.

A Note to Parents offers guidance for helping children with common emotions and reactions to Alzheimer’s disease.

YouTube: My Grandmum, My Papu, My Grandpa and Me by Alzheimer’s Australia NSW (2014)

My Grandmum, My Papu, My Grandpa and Me is an animated series produced by Alzheimer’s Australia NSW which features three children, Ezekiel, aged six, Bibi, aged nine, and Julia, aged 11, talking about their experiences of their grandparent with dementia, in their own words.

Book: Haven House : A Child’s Perspective of Alzheimer’s Disease by Rebecca Darling (2016)

haven houseGillian loves to spend time with her Nanny. They enjoy precious moments together, from long walks in the park to drawing beautiful pictures with special colored pencils. Gillian also loves to hear Nanny’s stories about their family. Gillian starts to notice changes in Nanny. She begins to lose interest in activities and becomes easily confused. As nanny’s health declines and dementia sets in, Gillian must accept her Nanny’s condition and find new ways to love and connect with her.

This story includes the person with dementia’s transition from family-based care to a specialised residential aged care setting and explains this with sensitivity and respect in an age-appropriate way.

Books for readers aged 10 – 15

Book: The Memory Cage by Ruth Eastman (2011)

memory cageAlex’s grandfather keeps forgetting things, and Alex has overheard his adoptive parents say that they’re going to put granddad in a home. His grandfather begs Alex to save him from that, and it’s a promise Alex is desperate to keep. But Alex once promised his little brother that he would save him, and in the terror of the Bosnian war, he failed. As Alex struggles to protect his grandfather, he uncovers secrets that his family and the village have kept for two generations. Unravelling them will cause grief, but will they save grandfather, and perhaps help Alex come to terms with his own private war?

Book: Sundae Girl by Cathy Cassidy

sundae girlJude’s family are crazy, quirky, bizarre …her mum brings her nothing but trouble and her dad thinks he’s Elvis! All she wants is a hassle-free life – but it’s not easy when she’s chasing a trail of broken promises. To add to the complications, Jude’s grandmother has Alzheimer’s disease and her grandfather is very busy caring for her.  Things go from bad to worse, but could the floppy-haired boy from school be her knight on shining rollerblades …?

Books for readers aged 15+

Book: Hour of the Bees by Lindsay Eagar (2016)

hour of beesWhen Carol and her family move to her grandfather’s deserted ranch in order to transfer him to a care home, Carol struggles to cope with the suffocating heat and the effects of her grandfather’s dementia. Bees seem to be following her around, but the drought means this is impossible. She must be imagining things. Yet when her grandfather chooses her as the subject for his stories – tales of a magical healing tree, a lake, and the grandmother she never knew – Carol sees glimmers of something special in what her parents dismiss as Serge’s madness. As she rethinks her roots and what she thought she knew about her family, Carol comes to the realization that Serge’s past is quickly catching up with her present. A stunning coming-of-age story.

Book: Unbecoming by Jenny Downham (2015)

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

You can find more dementia stories and resources for children, tweens and teenagers here, in a previous post on this topic.

Remember: All titles are available for loan through the Alzheimer’s Australia Vic library and may also be available via your local public library service.

 

 

 

Recent dementia publications

This post identifies some recent publications on dementia. These books are all available from the library – if you can’t make it to our Hawthorn location we encourage you to call us on 03 9815 7800 and we can organise to send books to you. Remember, we do need you to be an Alzheimer’s Australia Vic member to provide this service.

Book: Where the Light Gets in : Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley, Foreword by Michael J Fox, 2016

where the light gets inMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. “Where the Light Gets In” tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, “Where the Light Gets In” is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.”

DVD: Looks like Laury, Sounds like Laury, Pamela Hogan & Connie Shulman, 2015

looks like lauryWhat would you do if you started to disappear? At the age of 45, our friend Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.

The film came about when Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!” Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns. Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

We started filming during a hopeful period, with no idea of what lay ahead.

Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

Book: A caregiver’s guide to dementia : using activities and other strategies to prevent, reduce and manage behavioral symptoms, Laura N. Gitlin, Catherine Verrier Piersol, 2014

a caregiver's guide“Mom has nothing to do—I’m concerned about her quality of life.”
“My husband gets agitated when I need to leave the house—I don’t know what to do.”
“My father keeps asking the same questions over and over.”

These are some of the common challenges encountered by individuals and families who are caring for a parent, spouse or close relative with dementia. This easy-to-use, practical guide is designed to help at-home caregivers navigate these daily challenges. Although there is no cure for dementia or its many behavioral symptoms, there are clear and proven strategies that can be used to enhance the quality of life for persons with dementia—strategies that can make a real difference for their families.
A Caregiver’s Guide to Dementia explores the use of activities and other techniques to prevent, reduce and manage the behavioral symptoms of dementia. Separate sections cover daily activities, effective communication, home safety and difficult behaviors, with explicit strategies to handle] agitation, repetitive questions, acting-out, wandering, restlessness, hoarding, resistance to care, incontinence, destructiveness, sexually and socially inappropriate acts at home and in public, aggressiveness, depression. Worksheets are provided to help caregivers customize the strategies that work best for them.
The strategies featured in this guide have been used by the authors in their research and reflect approaches and techniques that families have found to be most helpful.

Book: Dementia: pathways to hope : spiritual insights and practical advice, Louise Morse, 2015

dementia pathways to hopeTo be diagnosed with dementia is “like being blindfolded and let loose in a maze”. There is no clear treatment to follow, because each case is unique. But once thickets of misunderstanding and misinformation are brushed aside, there are pathways to hope.

“Secular models of support don’t adequately reflect Christian values of compassion, love and service,” explains Louise Morse. “Neither do they describe the power of spiritual support. This is key to the wellbeing of the caregiver, as well as the person with dementia.”

This book is packed with examples of what works, as well as practical advice and accessible medical information.

Louise Morse is a cognitive behavioural therapist and works with a national charity whose clients include people with dementia. Her MA dissertation, based on hundreds of interviews, examined the effects on families of caring for a loved one with dementia.

Fiction: Unbecoming, Jenny Downham, 2015

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

YouTube: Living with Dementia, Alzheimer’s Australia, 2016

This is also available as a DVD from our library.

Dementia information sites, social media and apps from Alzheimer’s Australia

Alzheimer’s Australia provides a range of websites that specialise in different aspects of dementia or dementia-related issues. This post has collected all our information sources in a central location for your convenience.

Website: Engage Enable Empower, Alzheimer’s Australia

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This website is for people living with dementia

It is possible to live a good quality life with dementia. It is surprising how small changes to lifestyle can lead to better health and well being!

Website: You are not alone: online dementia support and counselling, Alzheimer’s Australia VIC

helpingwdementiawebsite2Alzheimer’s Australia Vic’s online dementia support for people living with dementia, their families and carers

If you or a loved one has dementia and you need information, counselling, support and to connect with others in your situation then this website can help you.

Through this website you can:

  • arrange free online counselling (email or videoconference)
  • learn about dementia
  • connect with others in the same situation as you
  • discover where and how to get help

At Alzheimer’s Australia Vic we know that dementia can affect every area of life for you and your loved ones and that it can be difficult to know what to do. We have staff ready to help. So click, explore and connect to find a better way to live with dementia.

App: Dementia-friendly home, Alzheimer’s Australia Vic

appdemfriendlyThe Dementia-Friendly Home App in now available. Using interactive 3D game technology Unreal Engine, the tablet app provides carers with ideas to make their home more accessible for people living with dementia.

With 70 per cent of people with dementia living in the community, the app enables the home to be made more dementia-friendly. This can allow the person to stay in their own home, enjoy their regular lifestyle activities and remain engaged with their community for longer.

The Dementia-Friendly Home App is now available for iPad from the App Store and Android tablets from the Google Play Store for AU$2.99.

Website: Dementia Research Foundation, Alzheimer’s Australia

dementiaresearchfoundationThe Alzheimer’s Australia Dementia Research Foundation is the research arm of Alzheimer’s Australia and funds talented new and early career Australian dementia researchers. It has information on the latest research on dementia – including studies looking for participants. Those wanting funding for studies can find out more about research grants on offer.

Website: Is It Dementia, Alzheimer’s Australia SA

is_it_dementiaThis educational site includes information relevant to a range of different industries to support identification of possible dementia-related behaviours and assisting people who may have dementia.

Industries covered include: Public Transport; Emergency Services; Retail; Fire; Banking; Correctional Services; Community.

Website: Start2Talk, Alzheimer’s Australia

start2talk_webThis site provides advice on how to plan for the future. It includes advice on planning for different stages of dementia, estate planning, powers of attorney, information for healthcare professionals on how to assist patients with this planning, finances and mechanisms to review plans as things progress.

Website: Dementia Enabling Environments, Alzheimer’s Australia WA

dementia_enabling_environmentsDeveloping an enabling environment for a person living with dementia can make a significant difference to independence, quality of life and wellbeing.

A well designed garden, or an interior planned with cognitive impairment in mind can provide essential prompts, accessibility and reduce risks to support a person with dementia to maintain abilities and take part in meaningful engagement. A poorly designed environment can be at best confusing and disorienting, and at worst disabling and even dangerous for those with dementia.

This Virtual Information Centre provides practical tips, guides and resources to help make the places in which we live more dementia enabling: from simple modifications that anybody can make to their home, to landscaping suggestions and architectural design for dementia care environments.

Website: Detect Early – A resource for healthcare professionals, Alzheimer’s Australia

detectearly1Healthcare professionals – whether in the community or in specialist care settings – are crucial in the early detection of dementia, helping to facilitate early intervention and better patient outcomes.

This site provides a wide range of resources and tools to help detect and manage dementia at the early stages.

For GPs, there’s the GPCOG, a screening tool specially designed for use in general practice,1 as well as educational resources targeted at community healthcare.

For pharmacists, there are tailored educational resources to assist with early intervention, as well as patient-focused materials in our Managing Dementia section.

By detecting dementia early, we can assist people with dementia – and their carers – to plan ahead and make crucial decisions about the future.

Website: Younger Onset Dementia forum: Talk Dementia, Alzheimer’s Australia

talk_dementia_YOD_webThis forum provides a place where younger people with dementia, their families, carers and friends can gather and share information. It provides a place to share your stories, connect with others in a similar situation, ask questions and share information.

Website: Your Brain Matters, Alzheimer’s Australia

YBMwebsite3Research shows you can reduce your risk of developing dementia through Five Simple Steps to maximise brain health. Your Brain Matters™ is Alzheimer’s Australia’s evidence-based dementia risk reduction program. You will learn about the five simple steps to maximise your brain health and get tips on living a brain healthy life to potentially reduce your risk of developing dementia.

Website: Dementia Daily, Alzheimer’s Australia NSW

dementiadaily2 Dementia Daily has up to date research and news, videos for adults and kids on dementia, connects people to online dementia communities and blogs, Help Sheets and more.

Video resources: Alzheimer’s Australia YouTube channel

Video resources: Alzheimer’s Australia Vic YouTube channel

Social Media: Alzheimer’s Australia VIC Facebook page

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Social Media: Alzheimer’s Australia Vic Twitter

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Website: FightDementia.org.au, Alzheimer’s Australia

fightdementiawebsiteOur organisational website includes a range of state-specific and national information about dementia-related events, education opportunities, publications and news. Find out about the services available in each Australian state or territory as well as how you can access them. Browse our extensive collection of help sheets to find out more about dementia, watch videos or read a publication. This rich website caters to a range of information needs. Materials such as help sheets are also frequently available in languages other than English.

App: Brainy app, Alzheimer’s Australia

brainyappBrainyApp was developed in 2011 by Alzheimer’s Australia in partnership with Bupa Health Foundation to raise awareness of the risk factors for Alzheimer’s disease and other types of dementia, and to help you be brain healthy.

There are more than 353,800 Australians currently living with dementia, with this number set to increase to 900,000 by 2010.

There is something you can do to reduce your risk. Scientific evidence tells us that certain lifestyle and health behaviours, particularly around midlife, are associated with reduced risk of developing dementia in late life. So, look after your brain health to reduce your risk of dementia. It’s never too early or late to start, as brain health can be improved and protected at any age.

BrainyApp is available internationally for Apple and Android devices for FREE. You can download BrainyApp from the Apple and Google app stores.

Or you can use BrainyApp on your computer, at BrainyApp.com.au

HIV and HIV-associated neurocognitive disorders (HAND)

HIV stands for human immunodeficiency virus. This post is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND).

YouTube: Understanding HIV-Associated Neurocognitive Disorders (HAND), Alzheimer’s Australia Vic

YouTube: Supporting someone who is living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

Toolkit: HIV-Associated Neurocognitive Disorders (HAND): Toolkit for community care workers, Alzheimer’s Australia Vic, 2014

HIVHANDCommCareThis toolkit is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND). HAND affects cognitive (thinking) abilities such as memory, language, attention, concentration, planning, judgement and organisation.

This toolkit is for paid and volunteer workers in community care settings who support people with HIV. The toolkit provides information to increase knowledge and understanding of the cognitive issues of HIV and their impact on self-care. It helps workers identify and address these issues to support better health outcomes for people with HIV and HAND.

Service providers can use this toolkit as a standalone resource. Although this toolkit is mainly about community care, it may help in other settings, such as residential care.

YouTube: Living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

 

HIVHANDFamilyFriendsToolkit: Living with HIV-Associated Neurocognitive Disorders (HAND): Information for people living with HIV and HAND, their partners, families and friends, Alzheimer’s Australia Vic, 2014

This booklet has been produced by Alzheimer’s Australia Vic for people living with HIV and HAND, and their partners, families and friends. It is part of the Dementia and Chronic Conditions Series: HIV-Associated Neurocognitive Disorders Toolkit, which has been developed primarily for community care workers. The information and recommendations it contains are based on independent research, expert opinion and scientific evidence available at the time of writing. The information was acquired and developed from a variety of sources, including but not limited to collaborations with the Burnet Institute and Living Positive Victoria.

Article: Understanding HIV and dementia by Denise Cummins, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.28-30

AJDC_Dec14Jan15As the lifespan of people with HIV has increased, so too has the risk of developing HIV-associated dementia. Denise Cummins explains the importance of diagnosis, education and effective management to help people with the condition maintain their independence and quality of life.

Note: should you be interested in this article please request it through our handy form.

This page includes more resources which may be of use in supporting people with HIV and HAND.

webpageHIVDemWebpage: HIV Associated Dementia, Alzheimer’s Australia Vic

This page describes what HIV associated dementia is, it’s causes, the symptoms and how it is diagnosed and treated.