Travelling well with dementia

travelling banner_final2

‘I haven’t been everywhere, but it’s on my list.’ —  Susan Sontag

Travelling and going on holidays plays an important role in many of our lives. Although living with dementia may make holidays more complex, it doesn’t necessarily mean these plans need to be put aside.

 

travelling and holidays with dementiaBooklet : Travelling and holidays with dementia / Alzheimer’s Australia, 2016

This guide has been developed by Alzheimer’s Australia for people with dementia, their families, carers and friends, as well as for health professionals.
It provides a summary of the key issues surrounding travelling and holidaying when living with dementia and provides the reader with a number of tips for an enjoyable holiday.
Download

 

diagnosed-with-alzheimersBook chapter: Swaffer, Kate and Low, Lee-Fay (2016). Travel and dementia. In: Diagnosed with Alzheimer’s or another dementia. London: New Holland, p.191-195.

This chapter covers, planning, accommodation, packing and insurance as well as other wisdom learned by the author in her travels.

 

 

ajdc bannerArticle:Making air travel easier for people with dementia / Australian Journal of Dementia Care August 2016

Until now, there’s been very little research on the issue of air travel for people with dementia. Maria O’Reilly and Nicole Shepherd are exploring the issue from the perspective of people with dementia, their carers, airport staff and flight crews, to develop guidelines and resources that will make air travel easier. Read article

 

 

blog_travel_image_airportReport – ABC Radio National:Airlines unprepared for increasing number of travellers with dementia

With a record number of people over 65 flying domestically and internationally, the number of passengers with dementia is steadily on the rise— posing safety concerns and questions about the rights of people with disabilities. Full report

 

airport_checkinFlying with dementia or memory problems

Following on from the ABC report above this travel site gives specific details about various relevant airline policies as well as  other procedural items that go hand in hand with air travel. Read post

 

Oral health and dementia

oralbanner_3

We are aware that good oral hygiene and regular visits to the dentist plays an important role in the wellbeing of everyone.  Healthy teeth and gums make it easier to eat well and enjoy good food. Poor dental health can affect a person’s comfort, appearance, behaviour and general health. Every person with dementia needs an individualised preventive approach to dental care that should ideally begin as soon as dementia is diagnosed.

 

Alzheimer’s Australia Helpsheet – Dental Carehelpsheet_dentalcare

Read online or download and print the comprehensive information for maintaining good oral health at home from the Alzheimer’s Australia website.
This information will assist in planning an individualised preventive approach to dental care.

DVD – Dental care for people with dementia  /  with Teepa Snow  (2012)

This DVD comprehensively covers the following topics (140mins)  teepa snow_dental care_web

  • common dental care issues and how to overcome them
  • why people with dementia are likely to react negatively to common oral care procedures
  • changes in motor skills and sensation
  • how to create a more calming environment through changes to lighting, temperature, and more
  • about techniques and tools to adapt oral care techniques to increase cooperation and improve dental care results

Family Caregiving: How Do You Brush Someone Else’s Teeth?

Helping someone with brushing and flossing  isn’t always easy. This web page uses images to go through the steps you can take to make daily dental care a good experience.

teethbrushing

Youtube: Dementia and oral care

Watch the following video on the six step approach to assisting someone to brush their teeth.

Education tools for dental practitioners

Partnership in Care – a series of Continuing Professional Development videos  funded by Alzheimer’s Australia are designed to support dentists treating people living with dementia.

The videos were developed jointly by dentists, medical practitioners and people living with dementia and their carers. The series highlights the importance of continuity of care, using preventative dentistry and ensuring the person with dementia has access to appropriate dental care for the duration of their condition.

cpd_image

dentalblogpost_USOur Dental Care Blog – Improving Oral Health For Patients With Alzheimer’s Disease Or Related Disorders

This post aims to ensure that the dental visit for the person living with dementia is successful. This requires the awareness and cooperation of patients, caregivers and dental professionals

ajdc banner

Article: Don’t forget the teeth: how can the dental discipline improve the care and well-being of people with dementia? / Danica Zhan

This article attempts to deliver an overview of the essential role of dentists and dental auxiliaries (dental assistants, dental hygienists, dental technicians) in the maintenance of oral health in people compromised with dementia.

Australian Journal of Dementia Care (Posted on December 6, 2016)

JDC_MAR2017Article : The vital importance of oral health in dementia care

Poor oral health is often associated with dementia but skilled professional interventions can break the link. Authors Amanda Thompsell and Hannah Luff offer some practical advice.

The Journal of Dementia Care  25(2) March/April 2017 p.28-29

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

Teens and young adults- dementia in fiction

blog_teen

Burying your head in a novel isn’t just a way to escape the world, fiction has the potential to improve a reader’s capacity to understand what others are thinking and feeling.
Last month we looked at dementia in fiction for adult readers. Today we take a look at some of the fiction available to our teen readers.

All of these titles are available for loan from Alzheimer’s Australia libraries or pop into your local public library and explore what they have.

 

Forgetting Foster  /  Dianne Touchell  (2016)forgetting-foster

He could no longer remember the first thing his father forgot.
Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories.
Forgetting Foster is a compassionate observation which exposes the heartbreak and collateral damage to a family after the father is diagnosed with Alzheimer’s disease.

 

Pop  /  Gordon Korman  (2009)pop

Lonely after a midsummer move to a new town, sixteen-year-old high-school quarterback Marcus Jordan becomes friends with a retired professional linebacker who is great at training him, but whose childish behavior keeps Marcus in hot water.
He can’t believe his good luck when he finds out that Charlie is actually Charlie Popovich, or “the King of Pop,” as he had been nicknamed during his career as an NFL linebacker. But that’s not all. There is a secret about Charlie that his own family is desperate to hide.

Unbecoming  /  by Jenny Downham  (2015)unbecoming

Three 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.

Downeast ledge: a novel  /  Norman Gilliland  (2013)downeast ledge_web

Changing 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 Walter Sterling who has dementia, 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. And although he seems unaware of his surroundings, Walt begins to exert a strange influence on Amber and her friends.

The whole stupid way we are  /  N. Griffin  (2013)the whole stupid way we are_web

During a cold winter in Maine, fifteen-year-old Dinah sets off a heart-wrenching chain of events when she tries to help best friend and fellow misfit Skint deal with problems at home, including a father who has early onset dementia.

 

 

 

Curveball : the year I lost my grip  /  Jordan Sonnenblick  (2012)Curveball book cover

After 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.

 

 

The story of forgetting : a novel  /  Stefan Merrill Block  (2008)story of forgetting_2

At seventy, Abel Haggard is a hermit, resigned to memories of the family he has lost, living in isolation on his family’s farm amid the encroaching suburban sprawl of Dallas. Hundreds of miles to the south in suburban Austin, fifteen year old Seth Waller is devastated when his mother’s increasingly eccentric behaviour is diagnosed as a rare, early-onset form of Alzheimer’s. He begins an ’empirical investigation’ to uncover the truth about her genetic history in order to understand the roots of this terrible disease. Though neither one knows of the other’s existence, Seth and Abel share a unique tradition: as children, both were told stories of Isadora, a fantastical land free from the sorrows of memory.

All That’s Missing  /  by Sarah Sullivan  (2013)all that's missing

Arlo’s grandfather travels in time. Not literally — he just mixes up the past with the present. Arlo holds on as best he can, fixing himself cornflakes for dinner and paying back the owner of the corner store for the sausages Poppo eats without remembering to pay. But how long before someone finds out that Arlo is taking care of the grandfather he lives with instead of the other way around? When Poppo lands in the hospital and a social worker comes to take charge, Arlo’s fear of foster care sends him alone across three hundred miles. Armed with a name and a town, Arlo finds his only other family member — the grandmother he doesn’t remember ever meeting. But just finding her isn’t enough to make them a family.

 

Click on the appropriate age group below to visit the Dementia in my family website for reading lists for all our younger readers.

preschool      5-8.JPG     9-12     13-15  16+

 

Earlier posts relating to children and young adults

Dementia resources for young people

Dementia resources for kids and teens

Dementia in fiction

fiction-banner

If fiction can be said to have some larger purpose than to entertain or enlighten, it is surely the creation of empathy. A play, a movie or a novel can place us directly in somebody else’s shoes.
Thoughtful and considered fiction can serve as a form of advocacy and insight into living with a diagnosis of dementia.

This post highlights some recently published fiction with a theme of dementia.

A full list of fiction  held in the Alzheimer’s Australia libraries can be found here.

forgetting-fosterForgetting Foster  /  Dianne Touchell  (2016)
‘Foster suddenly recognised the feeling that rolled over him and made him feel sick. It was this: Dad was going away somewhere all on his own. And Foster was already missing him.’
Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories. But then Foster’s dad starts forgetting things. No one is too worried at first. Foster and Dad giggle about it. But the forgetting gets worse. And suddenly no one is laughing anymore.

i-like-you-just-fineI like you just fine when you’re not around  /  Ann Garvin  (2016)
Everything is falling apart in psychologist Tig Monahan’s life. Her mother’s dementia is wearing her out; her boyfriend takes off for Hawaii without her; and her sister inexplicably disappears, leaving her newborn behind. Tig finds herself unemployed and part of the sandwich generation trying to take care of everyone and failing miserably. Just when she thinks she can redefine herself on the radio as an arbiter of fairness, she discovers a family secret that nobody saw coming. 

an-absent-mindAn Absent Mind  /  Rill, Eric  (2015)
Seventy-one, and a man used to controlling those around him, Saul finds himself slipping into what he describes as his slow dance with death.His ramblings, humor, emotions, lucid moments, and confusion are laid bare, as well as the thoughts and feelings of his loved ones: his wife, Monique, conflicted and depressed caring, yet angry; his daughter, Florence, compassionate, yet proper and reserved; his son, Joey, self-centered and narcissistic, seemingly indifferent to his family s challenges; and his doctor, an Alzheimer s specialist, who cares for Saul until his final days.

the-things-we-keepThe things we keep  /  Sally Hepworth  (2016)
Anna Forster, in the early stages of Alzheimer’s disease at only thirty-eight years old, knows that her family is doing what they believe to be best when they take her to Rosalind House, an assisted living facility. She also knows there’s just one other resident her age, Luke. What she does not expect is the love that blossoms between her and Luke even as she resists her new life at Rosalind House. As her disease steals more and more of her memory, Anna fights to hold on to what she knows, including her relationship with Luke. 

inside-the-obriensInside the O’Briens  /  Genova, Lisa  (2015)
Joe O’Brien is a Boston cop; his physical stamina and methodical mind have seen him through decades policing the city streets, while raising a family with his wife Rosie. When he starts committing uncharacteristic errors – mislaying his police weapon, trouble writing up reports, slurred speech – he attributes them to stress. Finally, he agrees to see a doctor and is handed a terrifying, unexpected diagnosis: Huntington’s disease. Not only is Joe’s life set to change forever, but each of his four grown-up children has a fifty per cent chance of inheriting the disease.

the-woman-next-doorThe woman next door  /  Liz Byrski  (2016)
A story of neighbours, retirement and aging. The characters in this novel embody women taking charge of their lives and growing old creatively.

 

 

 

PLAYS

the-other-placeThe Other Place  /  White, Sharr  (2013)
Just as Juliana Smithton’s research leads to a potential breakthrough, her life takes a disorienting turn. During a lecture to colleagues at an exclusive beach resort, she glimpses an enigmatic young woman in a yellow bikini amidst the crowd of business suits. One step at a time, a mystery unravels as contradictory evidence, blurred truth and fragmented memories collide in a cottage on the windswept shores of Cape Cod.

 

the-mother-and-the-fatherThe Father  /  Florian Zeller, translated by Christopher Hampton  (2015)
The Father. “A wonderfully peculiar, quietly stunning depiction of dementia…A controlled, unforgettable portrait of losing your memory.” (Times). “One of the most acute, absorbing and confronting portraits of dementia I’ve ever seen.” (Daily Telegraph). “A play that constantly confounds expectations and works almost like a thriller, with a sinister Pinteresque edge.” (Guardian). The Father was awarded the Moliere Award for Best Play 2014.

 

GRAPHIC NOVELS

wrinklesWrinkles  /  Paco Roca , (author, artist)  (2015)
Admitted to a home for the elderly because he has Alzheimer’s disease, for Ernest community life feels like an ordeal. But soon he accepts his new environment and decides to fight to escape from giving in to his destiny. For the author, the human community is like a library where books are piled up in mountains populated by yellowing paper of dreams and fantasies. Where a life is covered in wrinkles, and some see the writing of their pages disappear, sheet after sheet, until they become completely blank. Despite this, the most intense emotions survive, preserved as a hidden treasure on a remote island.

 

roses-in-decemberRoses in December : A Story of Love and Alzheimer’s  /  Tom Batiuk and Chuck Ayers  (2015)
Through the deceptively simple medium of the daily comic strip, Tom Batiuk and Chuck Ayers address the profound effects of Alzheimer’s disease in a thoughtful and occasionally humorous way. Roses in December includes a resource guide for caregivers, patients, and practitioners

 

Fictional accounts of dementia – 2016 post

 

Australian of the year 2017 – National finalist – Kate Swaffer

kateswaffer

Kate Swaffer

As we wait for the announcement of  Australian of the year* this post looks at some of the writings of deserving nominee and South Australian of the Year,  Kate Swaffer.

A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia .

An accomplished author and poet, Kate has written blogs,  books and articles advocating for life beyond a diagnosis of dementia. Kate’s writings  provide an invaluable insight into one person’s journey and thoughts about living with dementia.

*2017 Australian of the Year will be announced on the eve of Australia Day, Wednesday 25th January. Congratulations and all the best to all nominees.

Kate’s blog


kateswaffer_blog2017
A recent 2017 post is a great revisiting of some of the topics Kate has covered over the years.

Ramblings from the past, as I think about 2017…

 

 

 

 

Book: What the Hell Happened to My Brain? : Living beyond dementia  /  By Kate Swaffer  (2016)

what-the-hell-happened-to-my-brain

With chapter headings such as Why me, why this, why now?; The dementia train and not sweating the small stuff and Reactions to dementia: yours, mine, others Kate tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

 

Editorial: Dementia and Prescribed Disengagement™  /  Kate Swaffer
Dementia: the international journal of social research and practice, Vol. 14, No. 1, January 2015, p.3-6

dementia journalFollowing a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?..  Access full text

Article: Not just a ‘challenging behaviour’  /  Kate Swaffer
Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.21-24

ajdc_junjul2015

Kate highlights her concerns that widespread use of the terms ‘challenging behaviours’ and ‘Behavioural and Psychological Symptoms of Dementia’ (BPSD), over-perscription of antipsychotic medications and the guidelines used to ‘manage’ BPSD are having a negative impact on care, whilst fuelling stigma and discrimination.

 

Article: Reinvesting in life is the best prescription  /  Kate Swaffer
Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.31-32

ajdc_dec14jan15When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’ as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.

 

Book: Diagnosed with Alzheimers or another dementia  /  Kate Swaffer & Lee-Fay Low  (2016)

diagnosed-with-alzheimers

This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (from introduction by Prof Henry Brodarty)

 

 

To find a full list of Kate’s books, articles, poetry and presentations go to her website

https://kateswaffer.com/cv/

 

 

How do I choose?

recommended-read-sticker

Alzheimer’s Australia libraries combined have a collection of over 14,000 resources related to dementia. This year there have been in excess of 8500 loans from our collections.

Undoubtedly a great resource available to the community…but where do you begin?

When visiting the local bookshop we all welcome the influence of an award sticker or a book that proudly boasts itself a staff recommended read.  Taking inspiration from this and to assist our users to navigate our collection we have developed the Alzheimer’s Australia staff recommend sticker.

Our key criteria

  • Well written/produced
  • Consistently good feedback from borrowers
  • Positive reviews from specialist clinicians
  • The library staff loved it!

So what have our users been borrowing this year? Below is a selection from the top 20 in no particular order.

As always we welcome your feedback and would love to learn what would be on the top of your list.

DVD: Alive inside: A story of music & memory  /  A film by MRossato-Bennett  (2014)

Alive Inside DVDAlive Inside is a joyous cinematic exploration of music’s capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.

 

Green vanilla tea  /  Marie Williams  (2013)

green-vanilla-tea_smlWhen 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.

DVD:  Glen Campbell…I’ll Be Me  (2014)

glen-campbellIn 2011, music legend Glen Campbell set out on an unprecedented tour across America. He thought it would last 5 weeks; instead it went for 151 spectacular sold out shows over a triumphant year and a half. What made this tour extraordinary was that Glen had recently been diagnosed with Alzheimer’s disease. He was told to hang up his guitar and prepare for the inevitable. Instead, Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ The film documents this extraordinary journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.

Fiction: Still Alice  /  Lisa Genova  (2009)

still alice movieAlice Howland is proud of the life she worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong.

 

Caring for a loved one with dementia : a mindfulness-based guide for reducing stress and making the best of your journey together  /  Marguerite Manteau-Rao  (2016)

caring-for-a-loved-oneAn approach to caring with calm, centered presence; responding  with compassion; and maintaining authentic communication, even in the absence of words. Most importantly,  discover ways to manage the grief, anger, depression, and other emotions often associated with dementia care.

 

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)
before-i-forget-by-christine-bryden_sml

When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.

 

The 36-hour day : a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life  /  Nancy L. Mace, Peter V. Rabins  (2011)

36hrdayInformation on diagnostic evaluation; resources for families who care for people with dementia; legal and financial information;  information on nursing homes and other communal living arrangements; research, medications, and the biological causes and effects of dementia.

 

What the Hell Happened to My Brain? : Living with dementia  /  By Kate Swaffer   (2016)

what-the-hell-happened-to-my-brainKate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self.

DVD: Filling the day with meaning  /  Teepa L Snow (2011)

Through learning about what makes an activity engaging and valuable, how to create a safe and inviting environment and more with early-onset dementia patients, this DVD helps professional caregivers to provide the best care for people with dementia.

Loving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (2011)

loving-someone-who-has-dementiaOffers approaches to understand and cope with the emotional strain of care-giving. Boss’s book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

 

 

First person accounts : thoughts and experience of dementia from people living with dementia

With an estimated 46.8 million people worldwide living with dementia in 2015 it is sobering to consider how little information is available from the perspective of those people who actually have a diagnosis of dementia. However in recent years we have seen a considerable change in this space and in this blog we bring you a small selection of some of these powerful stories.

Website: Engage, enable, empower : Living well with dementia – personal storiespersonal-stories

A collection of more than a dozen  stories from people who are living with dementia and actively making the most of life.These short video stories are engaging and varied.

 

 

 

YouTube: Courageous Conversations

This short film series developed by Alzheimer’s Australia NSW, features people living with dementia talking candidly about what people should know about the condition, along with the good and bad that comes with living with dementia.

This includes loneliness as friends no longer visit, a misconception that dementia is contagious, and memory loss. They also talk about the unexpected positive things that have happened following their diagnosis including identifying their self-worth.

 

 

diagnosed-with-alzheimersDiagnosed with Alzheimers or another dementia  /  Kate Swaffer & Lee-Fay Low  (2016)

In a first we have a caregiving resource that is written from the viewpoint of a person that has been living successfully with dementia in partnership with a researcher interested in living well in later life and with dementia.

When Kate Swaffer was diagnosed with dementia before her 50th birthday she rejected the prevailing dogma of Prescribed Disengagement TM. She prescribed her own formula of engagement which includes writing – this book is just one of her contributions, studying for her PhD and advocating. And when Kate is not travelling to Geneva to talk to the United Nations or to a conference, she is a wife and a person who wants to enjoy life. In living with dementia, Kate has developed strategies on how to cope with her disAbility. We can all benefit by learning from her.

 

App: EDIE

Step into the world of 65 year old EDIE who is living with dementia. Develop a greater understanding of dementia from the perspective of a person living with it through Alzheimer’s Australia Vic’s Educational Dementia Immersive Experience, EDIE.

edie

dementia-activistDementia Activist: Fighting for Our Rights  /  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.

people-with-dementia-speak-out People with Dementia Speak Out  /  Edited by Lucy Whitman,  (2015)


Twenty-three people from diverse backgrounds share their experiences of living with dementia. The contributors are honest about the frustrations and fears they face, but overall there is remarkably little self-pity and a great deal of optimism. The personal accounts demonstrate that with the right support at the right time, and above all with opportunities to continue to contribute to society in a meaningful way, it is possible to live well with dementia. These fascinating stories bring to life the characters behind the collective term ‘people with dementia’, and show that each person with dementia is a unique individual with their own personality, history, beliefs, cultural affinities and sense of humour, and their own way of adapting to the disabilities and opportunities which this condition confers.

What the Hewhat-the-hell-happened-to-my-brainll Happened to My Brain? : Living with dementia  /  Kate Swaffer  (2016)

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

Before I Fbefore-i-forget-by-christine-bryden_smlorget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)

Some days all I want to do is give up the constant, exhausting struggle and stop trying to be normal. But I can’t. It’s not in me to walk away from a fight. I’ll keep fighting and telling my story. Before I forget.’
When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.
The unusually slow progress of her condition puts Christine in a unique position to describe the lived experience of dementia, a condition affecting tens of millions of people worldwide. In this revealing memoir, she looks back on her life in an effort to understand how her brain – once her greatest asset, now her greatest challenge – works now. She shares what it’s like to start grasping for words that used to come easily. To be exhausted from visiting a new place. To suddenly realise you don’t remember how to drive. To challenge, every day, the stereotype of the ’empty shell’.

nothing-about-us-without-us_smlNothing About Us, Without Us!: 20 Years of Dementia Advocacy  /  Christine Bryden (2016)

Along with her memoir,  Christine also recently published a collection of her hard-hitting and inspiring presentations. Provocative and insightful, the pieces included in this book address issues that demand attention, and should change the way dementia is perceived along with the lives of people with dementia and their families.

From tfrom-the-corner-officehe Corner Office to Alzheimer’s  /  Michael Ellenbogen  (2014)

“My name is Michael Ellenbogen. I am a writer, husband, and father. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways.

When I finally received my diagnosis, of Alzheimer’s, it was a relief to have an answer that explained the symptoms I was experiencing. I had heard of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.”

Website: Dementia alliance international

A myriad of  writings, advocacy and resources for people and by people living with dementia.

dai

 

Past related posts that may be of interest

Richard Taylor – Collected works – August 2015

From the horses mouth – October 2014