Relationships and dementia

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People  interact and engage with others on a daily basis whether they are family, friends, work colleagues, or even strangers.  We are social beings.

Our intimate and family relationships are complex. Living with dementia increases this complexity, so relationships need to be reframed and constantly renegotiated as the dementia progresses. (Relationships and dementia, 2017)

This blog looks at a variety of resources that illustrate the complexity of these relationships.

relationshipsandementia.JPGRelationships and dementia – Alzheimer’s Australia NSW Discussion Paper Number 19 (June 2017)
This discussion paper concludes that society needs to recognise, acknowledge and understand that people living with dementia, their carers and families face relationship difficulties and challenges, and more support is needed to enable people to work through complex feelings of grief and loss.
Download resource

Friends_matterFamily and friends matter : how to stay connected to a person living with dementia – Alzheimer’s Australia (2015)
The Family and Friends Matter booklet reinforces the importance of family, friendship and social connection for people with dementia and provides strategies and ideas to help an individual engage and maintain their relationship with a family member or friend who has developed dementia.
Download resource

loving-someone-who-has-dementiaLoving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (c2011)
This book is intended for partners, family members, friends, neighbours and caregivers of a person living with dementia.
The author discusses the meaning of relationships and offers approaches in a conversational style, suggesting ways to embrace rather than resist the ambiguity of a relationship with someone who has dementia.

 

Memoirs

bettyvilleBettyville : a memoir  /  George Hodgman  (2015)

A witty, tender memoir of a son’s journey home to care for his irascible mother–a tale of secrets, silences, and enduring love. When George Hodgman leaves Manhattan for his hometown of Paris, Missouri, he finds himself–an unlikely caretaker and near-lethal cook–in a head-on collision with his aging mother, Betty, a woman of wit and will.

 

alzheimersLoveStoryAlzheimer’s: a love story  /  Ulman, Vivienne  (2009)
The author records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief and the way in which her parents’ enduring love for each other sustains them.

 

green vanilla teaGreen vanilla tea  /  Marie Williams  (2013)
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.

 

ToLoveWhatIsTo love what is : a marriage transformed  /  Shulman, Alix Kates  (2008)
In this elegant memoir, Shulman describes the ongoing anxieties and risks–and surprising rewards–she experiences with her husband and discovers that what might have seemed a life sentence to some has evolved into something unexpectedly rich.

 

Fiction

goodbye vitaminGoodbye, vitamin  /  Rachel Khong.  (2017)

Ruth is thirty and her life is falling apart: she and her fiancé are moving house, but he’s moving out to live with another woman; her career is going nowhere; and then she learns that her father, a history professor beloved by his students, has Alzheimer’s. Goodbye, Vitamin is the wry, beautifully observed story of a woman at a crossroads, as Ruth and her friends attempt to shore up her father’s career; she and her mother obsess over the ambiguous health benefits – in the absence of a cure – of dried jellyfish supplements and vitamin pills; and they all try to forge a new relationship with the brilliant, childlike, irascible man her father has become.

the-woman-next-doorThe woman next door  /  Liz Byrski  (2016)

Over the years, the residents of Emerald Street have become more than just neighbours, they have built lasting friendships over a drink and chat on their back verandahs. This is a tale  of a group of friends and their reactions to growing older.

 

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.

memory bookThe memory book  /  by Rowan Coleman  (2014)

A gorgeous husband, two beautiful children, a job she loves—Claire’s got it all. And then some. But lately, her mother hovers more than a helicopter, her husband Greg seems like a stranger, and her two children are like characters in a movie. Things are changing.

 

Film

Iris DVD coverIris  /  Bayley, John  (2001)

Based on the book Elegy for Iris by John Bayley, this movie tells the true story of English novelist Iris Murdoch’s progression of Alzheimer’s disease and the enduring relationship with  Bayley, her partner of 40 years.
View trailer

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Gen silent : a documentary film about LGBT aging  /  written and directed by Stu Maddux.  (2011)
Many who won the first  civil rights victories for generations to come are now aging and may be  reluctant to ask for help.
Filmed in the Boston area over a one-year period, director Stu Maddux followed six LGBT seniors through their decision to either stay open about their sexuality or hide it to survive in the long-term health care system.
View Trailer

Still mine  (2012still mine)
Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.
View trailer

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.

Dance and dementia

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Dance has always been a part of cultural rituals and celebrations. But most dancing is about recreation and self-expression and is an enjoyable way to be more physically active. A diagnosis of dementia should not change this.

This blog looks at some of the evidence around the benefits of this activity as well as some supporting resources for incorporating dance into the lives of people living with dementia.

comedancewithmeCome dance with me

Come Dance with Me is a two-hour long workshop  that uses dance to bring joy and stimulate the minds of people with dementia.
Read an interview with workshop facilitator and professional dance artist Tiina Alinen to learn more about creative dance and how it embraces inclusivity.

For more information on this program Beverley Giles showcases Come Dance With Me, and talks about the  failure-free fun where the motto is ‘there is no wrong way only your way’
in The Australian Journal of Dementia Care Vol 6 No 3 June/July 2017 p.19
Note: should you be interested in this article please request it through our handy form.

01AJDCJJ17cover_2The joy and freedom of dance

Gwen Korebrits, Amy Gajjar and Sarah Palmer introduce Dancewise, a movement program suitable for people at all stages of dementia living in care homes
in The Australian Journal of Dementia Care Vol 6 No 3 June/July 2017 p.15-18
available online

 

danceforlifeDance for life : an evaluation of the pilot program (2016)

At the start of this project, the Dance for
Life team was aware of the growing body of
evidence showing the benefits of creative
arts for people living with dementia, but
had no fixed idea of how the project would
take shape. Early questions centered on the stage of
dementia that they might target in selecting
potential participants. Would they aim to
recruit those in early stages of dementia who might be able to learn routines and
follow instructions? Or would they work with those in the later stages with more limited
ability to understand, those who may struggle to communicate verbally and have
limited mobility?  Read the full evaluation

bestofsittingdancesBest of Sitting Dances Kit  (2008)

Best of Sitting Dances is a ‘Life. Be in it’ program encouraging gentle movement to music from a chair sitting position. It is a fun program for people with limited mobility, encouraging participation at all levels from the basic to the flamboyant!
The 13 dances range from slow and rhythmic to faster, more exuberant.
Each dance starts with a visual backdrop to stimulate interest and create the potential for stories, themes, reminiscing and jollity! Also included is a little background information on each dance and tips for leaders.

invitation to the danceInvitation to the dance  /  Heather Hill, Gary King and Ian Cullen  (2009)

This book provides guidance for anyone who would like to help people with dementia move expressively to music. It gives suggestions for approaches, props and music and provides vivid descriptions of the difference that dance can make to people’s wellbeing.
Includes a 6-track CD of music used by the author in her dance therapy sessions with people with dementia.

dance and movement sessionsDance and movement sessions for older people : a handbook for activity organisers and carers  /  Delia Silvester with Susan Frampton.  (2014)

The authors describe the many benefits of dance and movement for older people, and address important practical considerations such as carrying out risk assessments, safety issues, adaptations for specific health conditions and disabilities and how to select appropriate props and music. Step-by-step instructions for 20 dances and movements drawn from a wide range of eras, cultures and traditions are then provided. Ranging from Can Can and Charleston to hand jive, morris dancing, sea shanties and traditional hymns with movements, there is something to suit every mood and occasion.

AJDC_FebMar15Everyone can dance  /  John Killick  (2015)

John Killick is a poet and author who has been exploring the world as seen by people with dementia for two decades. This article is one of a series in which he looks at the role of art, in all its forms, in releasing the creative potential of people with dementia
in Australian Journal of Dementia Care, Vol. 4, No. 1, February/March 2015, p.7-8
Note: should you be interested in this article please request it through our handy form.

SmileandSway_DVDSmile & sway: seated movement program  /  Gina Buber and Ella Charles for the SMILE Program  (2014)

Smile and sway is a fun, low impact seated workout based on the music and style of ballroom and latin dancing. You’ll move to easy to follow choreographed routines to rhythms of Foxtrot, Cha Cha Cha, Tango and more.
more information 

Like to borrow a book or access an article from our library? Information on how

Travelling well with dementia

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‘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.

 

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

travelling and holidays with dementia
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

 

Ensuring a smooth journey_coverEnsuring a Smooth Journey: A Guide to Brisbane Airport for People Living with Dementia and their Travel Companions (2017)

Australia has its first dementia-friendly airport, Brisbane Airport, thanks to collaboration between airport staff, researchers and dementia advocates. This guide  aims to make the experience of navigating through Brisbane Airport’s domestic and international terminals as simple, stress free and enjoyable as possible.
Importantly the guide also provides information about other airports around the world and general information applicable to all air travel.    Download the guide

travelblogpost_nswBlog post: Tips for travelling with a person with dementia

Imelda Gilmore shares her reflections of travelling with her partner Graham

Read post

 

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

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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.

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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.

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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

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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

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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

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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/