Dementia and Driving

driving_picDriving is something most adults take for granted.  It gives us freedom, flexibility and independence. In a vast land like Australia, with our luxury of space, driving is also a necessity for many of us. We need to drive for practical purposes, like grocery shopping and also for social purposes, to see friends and family.

Now. Imagine receiving a diagnosis of dementia. Then in the days and weeks that follow, as you struggle to adjust to this new reality, imagine the people who care for you, or medical professionals, suggesting to you that you can no longer drive. Another body blow at an already fraught and devastating time.

The decision about when to stop driving is a difficult one and needs to be approached with sensitivity and the involvement of the driver with dementia. Today, we offer you a range of resources which may help you have this discussion with someone with dementia as well as providing you with more information on driving with dementia. This post is a guest blog by Alzheimer’s Australia Vic resident Driving and Dementia specialist, Lucy Foley. You can read more about Lucy’s professional background and Alzheimer’s Australia Vic’s Driving and Dementia project at the end of this post.

YouTube: Driving with Dementia, Professor Joseph Ibrahim

This utterly compelling animated short film explores the myriad practical, emotional and social implications of asking a person with dementia to stop driving.  Professor Joseph Ibrahim provides great insight to medical professionals, carers and concerned family members about what surrendering driving privileges really means.

Discussion paper: Dementia and Driving in Victoria, Alzheimer’s Australia Vic

AAV_Dem_DriveWith the increasing age of the population, and the subsequent increase in prevalence of dementia, there will be a growing number of older drivers who will experience impaired driving ability. However, although there is evidence that dementia increases crash risk(1), it is also internationally accepted that not all people with dementia are incompetent drivers, particularly in the early stages of the condition.(2)

The ability to drive safely relies on memory, attention, decision-making, planning, reactions,vision and other sensory processing and these will be affected to various degrees.(3) Each person’s experience of dementia is individual.

This paper presents the results of a survey with 139 family carers and friends of people with dementia, and 19 people with dementia. It describes their awareness of VicRoads regulations in relation to dementia, experience with on road driver testing, impact of ceasing driving, and on alternative mobility options.

Footnotes 1, 2, 3 refer to page 1 – Executive Summary of Dementia and Driving in Victoria, April 2013.

Article: Dementia and the impact of not driving, Kate Swaffer

kswaffer

Kate Swaffer, image source: Australian Journal of Dementia Care

Kate Swaffer, a person living with Younger Onset Dementia discusses one of the key issues around driving and dementia. Everyone agrees that there is a need to stop driving at some point after diagnosis of dementia, the harder question to answer is, when?

Kate’s honest and engaging piece offers real insight into the stresses and regret of giving up driving, whilst retaining a clear-eyed perspective on the impacts driving and dementia can have for the broader community.

This article is sourced from the Australian Journal of Dementia Care website.

Booklet: Driving, Dementia and Mobility, RACV

RACVDriving_DementiaA comprehensive and clearly written booklet for people with dementia, carers and health professionals in Victoria.  This helpful guide covers all the basics including legal and licensing requirements, what do after a diagnosis, strategies for staying mobile and connected after stopping driving. It also includes contact information for different services and support available for people with dementia who are still driving, and those who are no longer driving.

You can order up to 10 copies of the print version of this booklet by contacting Alzheimer’s Australia Vic Helpline on 1800 100 500, if you require more than 10 copies, please contact RACV directly.

YouTube: RACV Dementia, Driving and Mobility Guide

This 2 minute video is a great introduction to the booklet listed directly above.

Website: VicRoads

VicRoadsPeople with dementia, particularly in the early stages of dementia, can be capable drivers, however, because of the nature of the condition, at some stage they will need to stop.  The VicRoads website includes information about what you need to do after a diagnosis of dementia, specifically, the legal and licensing requirements.

The website also outlines the medical review process, which is how VicRoads determine a person’s fitness and ability to keep driving.

Finally, you can also access information about Occupational Therapy Driver Assessments, and contact details for Occupational Therapists via VicRoads.

Resource: At The Crossroads, The Hartford

crossroads

A great guide for people with dementia and carers.  This publication is written sensitively and thoughtfully and encourages early planning and a person-centered approach to decision-making on when to stop driving.  At the Crossroads focuses on the emotional challenges of license loss and mobility loss and provides excellent resources for people to work out individualised strategies and solutions for dealing with these challenges.

About the Project

Alzheimer’s Australia Vic are working in partnership with RACV on a 2 year driving and dementia community education and awareness-raising project. The project aims to support people living with dementia and their families and carers to make informed decisions about the current and future driving ability of a person living with dementia, and make a successful transition to non-driving.  The project is launching a kit in February 2014, which will have a range of resources for people with dementia, carers, families and health workers. The project will also be delivering community information sessions on driving and dementia throughout metro and regional Victoria from March 2014 onwards. We will release information about how to obtain the kit, or attend an information session closer to our launch date so keep an eye on the website.

About our guest blogger

Lucy Foley, Alzheimer’s Australia Vic’s Project Officer for Driving and Dementia, is a social worker with a background in community development, who is interested in transport and mobility. Lucy can be contacted about the project via our main phone number 03 9816 5799. If anyone wants to talk about driving and dementia issues they are currently experiencing themselves or with a loved one please phone the National Helpline on 1800 100 500.

Dementia in Aboriginal and Torres Strait Islander Communities

Artist Shane PilotDementia affects all communities. And our responses to dementia and people with dementia are undoubtedly shaped by  perspective and cultural values. This post focuses on dementia resources  in Aboriginal and Torres Strait Islander communities. In addition to resources for indigenous communities in regional areas, there are resources for metropolitan Indigenous communities and those working with them.

Resource: Kimberly Indigenous Cognitive Assessment (KICA) – Victoria

Efforts to address dementia in Indigenous populations have been hampered by a lack of culturally appropriate cognitive KICA_imageassessment tools. Current questionnaires that assess dementia(such as the Mini Mental State Exam) have been shown to have considerable cultural, educational and language bias which impairs their application in the Indigenous community. The Kimberly Indigenous Cognitive Assessment (KICA) was developed to address this problem and is an instrument used to assess dementia in older Indigenous people in remote settings. The KICA includes client assessment and informant report of cognition, behavioural and psychological symptoms of dementia, medical history, and alcohol and smoking use.

To date, the KICA has been validated for remote and rural areas of Australia and the ‘Koori Growing Old Well’ study (Neuroscience Research Australia) is currently undertaking a survey of older Indigenous people in the urban Sydney region, and includes a modified form of the KICA. Preliminary data indicates its usefulness in urban regions. However the utility of the KICA in Victorian indigenous populations is still being investigated. Findings from the Victorian review of KICA suggested by the the expert panel, focus groups, and delphi process suggested a number of changes to the original KICA are needed to develop a KICA tool suitable for regional and urban Victoria. As well as the report, the revised questionnaire and supporting materials are included on the webpage.

NOTE: this resource is at the end of a page on the Alzheimer’s Australia website which is devoted to resources for Aboriginal and Torres Strait Islander communities.  My best advice is scroll, scroll, scroll!

YouTube: You’re Not Alone: Discussing Dementia – Episode 6: Losing the Dreaming

A resource for carers of people living with dementia in the Aboriginal Community. The short film features Birpai Elder Uncle Bill O’Brien discussing his experience of caring for his mother, who had dementia. Uncle Bill candidly shares his emotional journey of being a carer and the personal impact it had upon him. Brave and moving stuff! Importantly, it emphasises the help that is available and that people are not alone on this journey.

DVD: The Fading Moon: A Dementia Resource for Aboriginal and Torres Strait Islander communities

DVD cover

This DVD was produced to raise awareness about the experiences of Indigenous carers who provide support to family members or friends with dementia. The DVD features the personal stories of carers, and also includes commentary from people working in the dementia field, such as Professor Tony Broe. The DVD consists of five chapters, each of which can be shown individually or collectively:

  • what is dementia
  • how dementia shows up (warning signs)
  • diagnosis
  • the impact (symptoms)
  • carers and support.

You can obtain a copy of the DVD: Jenny Hayes, Aboriginal Liaison Officer, Access and Equity Unit, Alzheimer’s Australia SA, 27 Conyngham Street, Glenside SA 5065 Ph: (08) 8372 2122 or jenny.hayes@alzheimers.org.au.

Of course, you can borrow it from the Victorian library of Alzheimer’s Australia as well.

Resource: Help Sheets

A series of help sheets about various dementia topics have been developed to inform Aboriginal and Torres Strait Islander people about dementia.

Memory Changes  –  What is dementia?  –  Diagnosing dementia  –  Alzheimer’s disease  –  Information for family and friends

Click here to order your free copy of Dementia Help Sheets for Aboriginal & Torres Strait Islander people

YouTube: Love in a Time of Dementia

“Love in the Time of Dementia” was made in collaboration between italklibrary and Carpentaria Disability Services. This story seeks to inform Indigenous communities about caring for family members who have dementia. Additionally, its a beautifully produced and moving story of love, tolerance and acceptance of a family member and a spouse with dementia.

Publication: Working with older Aboriginal and Torres Strait Islander people, 2013

This Briefing presents evidence from research to guide mainstream community aged care organisations and practitioners on working in a respectful and culturally sensitive manner with Aboriginal and Torres Strait Islander people. It aims to help enhance the quality of care by ensuring it is underpinned by reflection, knowledge, understanding and respect. However, this Briefing should not be understood as a universal set of protocols, nor as a prescription for care, as Aboriginal and Torres Strait Islander cultures are complex and extremely diverse, and accepted protocols vary across communities.

The Briefing was prepared by Sharon Wall and the Koori Growing Old Well Study Project Team at Neuroscience Research Australia, in partnership with The Benevolent Society.

YouTube: Walkabout Memories

This short DVD was filmed by Steve MacDonald of Life and Times and people from the Gumbaynggirr community volunteered their time to act in the film. The film goes for about 5 minutes and is recorded in an interview format with family members talking about dementia and what can be done to help.

Publication: Look After Your Brain, A Guide to Dementia for Aboriginal People Booklet and Poster, 2012

Look after your brain

This booklet has been produced for Aboriginal people who have dementia, or who have family members with dementia. It provides information to help those touched by dementia to appropriately manage the illness. The contents covered in the booklet includes:

  • what is dementia
  • what are the signs of dementia
  • what are the causes of dementia
  • how to reduce chances of getting dementia
  • caring for someone living with dementia
  • seeking help.

The booklet includes photographs, artwork, and wording that is culturally appropriate for the target audience.

Recent additions to our collection

Hot pies! Cold drinks! Lovely new resources!

Nothing ignites a librarian’s interest like a padded envelope stuffed with new materials for our collection. Seriously, nothing.  Note to self: get out more.

Below is a curated list of the latest and greatest resources for you. There’s YouTube, there are books, there are journal articles.  Remember, if you are interested in borrowing anything you can, in fact, we encourage you to.  Of course, you’ll need to be a member, which you can find out more about here. For the cost of a cafe meal or two, you can get a whole year’s worth of brain food.  So very worthwhile!

YouTube: Love, Loss and Laughter – Living with Dementia, Fire Films Australia

A filmmaker’s devotion to her grandmother, who has been living with dementia for 15 years, has been the inspiration behind a film that shares the story of the international photographic exhibition, Love, Loss and Laughter: Seeing Dementia Differently.

Corinne Maunder, Producer, Fire Films Australia, said the Love, Loss and Laughter exhibition presented an ideal opportunity to create a meaningful piece about dementia. As an entry in the inaugural Reel Health International Health Short Film Festival, the film explores the messages behind the photos that comprised a six month tour in Australia.

“While making the film I learnt that even though dementia is a condition that people live with, it doesn’t mean a person should be isolated from the everyday activities that they can still enjoy in so many ways.

“The project made me appreciate even more, the time that I have with my grandmother and my mother and aunt’s unswerving dedication as carers,” Ms Maunder said.

American sociologist and social photographer, Cathy Greenblat took the photographs in the United States, France, India, Japan, the Dominican Republic, Canada, Monaco and more recently, in Australia. The exhibition has already touched the hearts of thousands of people as it has travelled throughout the America, Asia and Europe. A book of the same title was published in 2012.

Teen fiction book: Back to Blackbrick, Sarah Moore Fitzgerald

BackBlackbrickPitched at late primary school kids and early secondary students.  This is a well-written, insightful and modern story of a young care-giver’s struggles to accept the many changes and responsibilities being forced upon him and still connect with the grandfather he knows and loves. It elegantly identifies and articulates the multi-layered strands of grief and loss and day-to-day coping that families experiencing dementia know all too well.

‘The ghosts in your life don’t ever really go away. Every so often they will whisper to you, and they will brush past you and maybe you will even feel their misty sweet breath on your skin. It’s fine. Don’t worry about it too much.’

Lost memories, lost times, lost lives – a stunning new debut novel. Cosmo’s brother Brian died when he was ten years old. His mum hides her grief by working all the hours God sends and Cosmo lives with his grandparents. They’ve been carefree days as Granddad buys him a horse called John and teaches him all he knows about horses. But the good times have to come to an end and although he doesn’t want to admit it, Cosmo knows his Granddad is losing his mind. So on one of the rare occasions when Granddad seems to recognise him, Cosmo is bemused that he gives him a key to Blackbrick Abbey and urges him to go there. Cosmo shrugs it off, but gradually Blackbrick draws him in . . . Cosmo arrives there, scared and lonely, and is dropped off at the crumbling gates of a huge house. As he goes in, the gates close, and when he turns to look, they’re rusty and padlocked as if they haven’t been opened in years. Cosmo finds himself face to face with his grandfather as a young man, and questions begin to form in his mind: can Cosmo change the course of his family’s future?

Fiction: Green Vanilla Tea, Marie Williams

green vanilla tea

This story describes the impact of dementia on the whole family but in a positive light. It outlines the ways in which the boys find the personhood of their father amongst the diagnosis. The man who was their father is not lost. It also touches on the profound and ongoing impact living with someone with dementia and motor neurone disease has on a family. This is a story of human connection, of love and of grace.

When Marie Williams’ husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time — when gradually Dominic’s behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world. Her book, Green Vanilla Tea, has just been named winner of the 2013 Finch Memoir Prize.

Families and Carers: Living with Dementia: A Practical Guide for families and personal carers, edited by Esther Chang and Amanda Johnson

living with dfementiaLiving with Dementia: A practical guide for families and personal carers provides a sensitive, direct and highly accessible account of the complexities and challenges that a diagnosis of dementia presents. Written by aged care experts, including academics, nurses, medical practitioners and family advocates, Living with Dementia offers evidence-based research, supported by clear chapter outcomes, key terms and real-world vignettes. Practical strategies are integrated throughout to support caregivers, paid and unpaid, in the home environment and in residential care settings.

The book offers advice on how to manage everyday activities such as feeding, toileting, personal hygiene and grooming, and coping with challenging behaviour. In recognising the needs of the whole person, mental stimulation and spirituality are also addressed. An introduction to commonly used medications, complementary therapies and effective communication strategies are provided, as well as information about caring for the dying, and most importantly, looking after you – the carer.

Whether you are an Assistant in Nursing, an Enrolled Nurse, a family member or a friend caring for a loved one, Living with Dementia will assist you to move beyond the negative perceptions, and enable a meaningful life for the person with dementia, within the limitations of the disease.

Fiction: Angela and the Cherry Tree, Raphaele Frier and Teresa Lima

angela_and_the_cherry_tree_webThis lovely picture book can be enjoyed by all ages.  Don’t be deceived into thinking it’s only for kids, the lyrical story has aspects that can be explored and understood in different ways depending on your age and personal experience.  This is a story that I would happily read with my four year old and he would think it was a lovely tale about a grandmother and her (imaginary) grandchild.  I would interpret it as an attempt to imagine and explain what it might be like to experience dementia. Whatever your take on the story is, its gorgeous, heart-warming with beautiful illustrations.

“Angela wakes up full of hope. She is expecting a visitor. She prepares her hair, puts on perfume and bakes her speciality, shortbread cookies. She waits, impatiently at times, and finally the little girl arrives.

Angela and the Cherry Tree provides a touching insight into the mind of a person suffering from dementia. It is a rare and poignant picture book, handling a sensitive subject with respect and dignity. Its insights and beauty are derived from perceptive, lyrical detail and stunning illustrations.”

DVD: You’re looking at me like I live here but I don’t, Scott Kirschenbaum

you are looking at me_webPersonally, I greatly enjoyed this unique, warts-and-all but incredibly respectful and dignified film about Lee Gorewitz, a person with dementia. Lee is an engaging, entertaining and likeable protagonist who effortlessly brings you into her world and you leave the richer for the time you have spent there with her.

This film may be confronting for some, with it’s clear-sightedness on the realities of day-to-day living with dementia, however as an example of person-centred thinking, Scott Kirschenbaum manages to capture and convey Lee’s essential personality above and beyond her diagnosis of dementia.

“In Danville, California, Lee Gorewitz wanders on a personal odyssey through her Alzheimer’s & Dementia care unit. From the moment she wakes up, Lee is on a quest – for reminders of her past, and her identity. A total immersion into the fragmented day-to-day experience of mental illness, YOU’RE LOOKING AT ME LIKE I LIVE HERE AND I DON’T is filled with charismatic vitality and penetrating ruminations that challenge our preconceptions of illness and aging. Here is one extraordinary woman who will not let us forget her, even as she struggles to remember herself.”

Brain health

Paper36_summarySo little time, so much to do!  When it comes to the old noodle, it’s easy to take it for granted.  But brain health matters people! Imagine, if you can, life with a different brain.  A brain that doesn’t work so well, that lets those precious memories slip away and fails to recognise the people you cherish most.

‘What can you do?’  I hear you ask.  The answer, dear reader is based on scientific evidence that a number of health and lifestyle factors that we can all do something about are associated with brain function and the risk of developing dementia.

The brain changes that cause dementia begin many years before any symptoms appear.  The evidence suggests that midlife is a critical time to think about looking after your brain, body and heart.  But it is never too late to make changes that will improve your brain health.

There is good evidence to support a range of lifestyle and health strategies to keep your brain healthy and reduce your risk of developing dementia.

  • Keeping your brain active matters
  • Being fit and healthy matters
  • Looking after your heart matters

This blog focuses on resources in our collection and online that help you maintain your brain.

Live long, stay healthy and be a nuisance to your loved ones for a long, long time!

Research paper: Physical Activity for Brain Health and Fighting Dementia, Alzheimer’s Australia Paper 36

Paper36_Summary image_Page_1People who do regular physical activity have healthier brains, better memory, planning and other thinking skills, and have less chance of developing dementia, according to a new paper released today by Alzheimer’s Australia in partnership with Fitness Australia.

The paper, ‘Physical Activity for Brain Health and Fighting Dementia’, has been developed through combining the latest research both locally and internationally. Its launch coincides with Dementia Awareness Week and the paper outlines how physical activity improves brain health and may increase the volume of the hippocampus in the brain, which is essential in helping to coordinate memory.

Summary of evidence presented in Research Paper 36

Full copy of Research Paper 36

Website: Your Brain Matters

YBMwebsiteAlzheimer’s Australia’s Your Brain Matters program shows you what you can do to reduce your risk of dementia. It includes information for people wanting to know what they can do to actively reduce the likelihood of developing dementia and health professionals too.  It’s chock-full of suggestions on how to adapt a brain healthy lifestyle, a dedicated Brain Health program, FAQ, current research, information about dementia, access to our Brainy App and lots of other goodies.  Set aside 30 minutes to have a good explore, you won’t regret it.

Book: Maintain your brain : what you can do to improve your brain’s health and avoid dementia, M.J Valenzuela

MaintainYourBrainIn Maintain Your Brain, leading Australian expert Dr Michael Valenzuela addresses all the common (and not-so-common) questions people have about dementia, and explains complex cutting-edge medical discoveries in a way that is clear and easy to understand. His practical advice is based on years of first-hand research and experience, and covers everything from blood pressure, diet and cholesterol to mental activity and physical exercise. Featuring plenty of simple tips, summaries and even recipes, this book is essential reading for anyone who wants to enjoy a healthy, active and happy life well into old age.

Article: Say Yes to Yoga, Amie Larter, Aged Care Insite Magazine, Issue 78, August – September 2013.

Yoga_articleResearch confirms that yoga improves balance and mobility, and can also reduce the risk of falls.  A trial of regular yoga practice by 54 people aged between 59 and 87 years found significant improvements in balance and mobility.  If you’re interested in this article, you can request it here.

App: BrainyApp, Alzheimer’s Australia and Bupa

brainappy02BrainyApp was developed 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. BrainyApp is free and available on the App Store and Google Play.

Complete the brain health survey, which asks questions about your current physical, social and mental activity, cardiovascular health, diet, smoking and drinking habits. The brain-heart health score achieved indicates how brain healthy your current lifestyle is.

Engage in the recommended activities to improve in areas that may be increasing your dementia risk. Completing more activities leads to more brain-heart points. Watch your score and your brain-heart health improve over time, and share your score on Facebook to earn extra points.

Activities include two brain games to help you exercise your memory, language and motor control skills.

Learn interesting facts about dementia, the brain and how to keep your brain healthy. Share facts on Facebook to spread the word about dementia risk reduction and earn extra brain-heart points.

Research Paper: Targeting Brain, Body and Heart for Cognitive Health and Dementia Prevention: Current Evidence and Future Directions, Dr Maree Farrow and Elodie O’Connor, Alzheimer’s Australia.

paper29coverPrevention of dementia is the ultimate aim of a large, albeit under resourced, international research effort. The success of this effort would have enormous benefits for millions of people and save billions of dollars in health care costs. Conversely, the status quo will see the number of Australians living with dementia soar in coming years. Many more people will experience and seek help for mild cognitive impairment.

There is no cure for the common forms of cognitive decline and dementia, including the most common, Alzheimer’s disease. A cure may only be achieved by prevention, because the diseases that cause dementia begin many years before symptoms become apparent and gradually damage the brain until it can no longer function normally. Intervening early to stop or slow disease progression, before cognitive impairment emerges, offers the best hope of preventing dementia.

Studies reviewed in this paper estimate that significantly fewer – many thousands in fact – will develop dementia if we address modifiable risk factors now. You can access the paper here.

DVD: Brain Fitness: The Program, Volume 1. Hosted by Peter Coyote

brain_fitness_dvdThe Brain Fitness Program is based on the brain’s ability to change and adapt, even rewire itself. In the past two years, a team of scientists has developed computer-based stimulus sets that drive beneficial chemical, physical and functional changes in the brain. Dr. Michael Merzenich of the University of California and his colleagues share their scientifically based set of brain exercises in this life-altering program. Peter Coyote narrates.

EXTRAS – 40 minute Bonus Chapter on Alzheimers Disease with two pre-eminent researchers in the field of aging.

Younger Onset Dementia

Younger Onset Dementia describes any form of dementia that has an onset of symptoms before age 65. It currently affects 24,000 Australians*.  Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

In our publication Younger Onset Dementia: A New Horizon? (2013) Alzheimer’s Australia make the observation that even with a diagnosis, there are few services designed to provide appropriate care and social support for younger people and their carers. Individuals with younger onset dementia face a unique set of challenges with changing financial circumstances, limited access to appropriate services, new social challenges and often too frequently fundamental changes to their relationships with family and friends**.

I think, dear readers, that one of the nicest things about the internet is that it gives us all the opportunity to share our experiences, thoughts and insights. Today we’ve pulled together resources on Younger Onset Dementia and hope that you find these as useful, thought-provoking and touching as we did.

YouTube short film: The Music in Hugh: A Look at Young Onset Dementia

In this completely gorgeous short documentary, son Max talks about the impact of younger onset dementia on his father, himself and his family.  Max shares his experience with touching candor and very importantly has found a way to reconnect with his father through music. Max’s thoughtful narrative on the importance of seeing his father as a person, not a patient or collection of symptoms is inspiring.

Fiction: Still Alice, L. Genova

Still AliceStill Alice is a fictional account of Alice Howland, 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. She finds herself in the rapidly downward spiral of Alzheimer’s Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Book cover Coping with Early-onset Dementia Guidebook: Coping with Early-onset Dementia, J. Eckersley

This is a helpful, no-nonsense guide Coping with Early-onset Dementia to confronting, accommodating and planning ahead for younger people with dementia. As well as acknowledging the special challenges facing people with younger onset dementia this guide also emphasises that there is still life to be lived, for both those with dementia and their carers. Topics covered include:

  • types of dementia, including Alzheimer’s disease
  • managing dementia on a day-to-day basis and dealing with common problems
  • obtaining support that is appropriate for younger people with the condition
  • treatments and new drugs in the pipeline
  • dealing with practical issues, such as work, driving and obtaining benefits
  • support for families, carers and children
  • care as the condition progresses – day centres, respite care and residential care
  • the relationship between dementia and genetics
  • complementary therapies
  • further resources

Memoir: Jan’s story : love lost to the long goodbye of Alzheimer’s, B Peterson

JansStoryJan Petersen was vibrant, active, healthy, and just 55 when she was diagnosed with Alzheimer’s. Barry was not even slightly prepared for what happened to her, and how it would impact his life when “forever” suddenly and terrifyingly has an expiration date. Jan’s Story is a very personal memoir on the impact of younger onset dementia.

DVD: Reflections: John & Yolanta : experiencing younger onset dementia

Reflections DVDJohn was an elite air force pilot who was diagnosed with Alzheimer’s disease at 52. In this DVD, John, his wife Yolanta and friend Dave chronicle the impact of John’s diagnosis upon their relationships and lives. Reflections: John & Yolanta: Experiencing Younger Onset Dementia is suitable for the families of people diagnosed with dementia at a younger age, and deals with many of the issues other families in a similar situation may face. The DVD is also relevant for health professions, as it highlights the complexity of life with younger onset dementia, and raises awareness about the particular issues affecting younger people.

Sign up: HOPE – Younger Onset Dementia newsletter, Alzheimer’s Australia

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.  Take a look at our website page for HOPE where you can access previous editions and/or sign up for the newsletter by emailing hope.news@alzheimers.org.au.

Other information on Younger Onset Dementia

Younger onset dementia factsheets, Alzheimer’s Australia

Younger onset dementia tip sheets, Alzheimer’s Australia

Younger onset dementia forum, Alzheimer’s Australia

In our own words : younger onset dementia : a collection of very personal stories, Alzheimer’s Australia

The Long and Lonely Road: Insights into living with Younger Onset Dementia, Alzheimer’s Australia

Garry’s Dream, The Lovell Foundation  – The Lovell Foundation and Alzheimer’s Australia Vic have set an objective to promote the development of a quality long term accommodation facility for people diagnosed with Younger Onset Dementia.

Younger Onset Dementia and Me blog, AANSW blog – a place for young people with parents with younger onset dementia to connect with others, to get information and helpful suggestions and a place to be listened to.

When Dementia is in the House website, Dr T Chow and K Nichols  – Dementia resources for parents and teenagers

Younger people with dementia factsheet, Alzheimer’s Society UK

* Australian Institute of Health and Welfare (2012) Dementia in Australia.

** Alzheimer’s Australia (2013) Younger Onset Dementia: A New Horizon?

Love, Loss and Laughter

Love, Loss and Laughter: Seeing Dementia Differently is an international art exhibition which Alzheimer’s Australia is proud to bring to Australia. This exhibition showcases the work of Cathy Greenblat, photographer and sociologist, and conveys the importance of retaining the individual as central, rather than their challenges with dementia.Image

Alzheimer’s Australia has a number of holdings of a book also called Love, Loss and Laughter which Cathy has produced and we encourage you to make time to view the exhibit as it tours, admission is free.

DVD : Is it Dementia

is it dementia_web Alzheimer’s Australia have recently launched a great new DVD resource Is It Dementia aimed at the Transport, Emergency Services, Retail, Fire, Banking and Correctional Services industries. As well as videos of different scenarios which may in fact be triggered by dementia, such as “The Tricky Passenger” which walk viewers through a case study, there are also fact sheets, facilitator question sets and even transcripts of the video case studies available on this DVD.

You can also view the videos and all associated resources mentioned above online at www.isitdementia.com.au.

Book: Playfulness and Dementia, John Killick

Playfulness_dementia_web

One of our newer books, Playfulness and Dementia, offers insights into the power and joy of introducing elements of playfulness into the care of those with dementia.  Never condescending, or disrespectful, the author offers approaches and ideas for bringing more fun and laughter into the days of dementia sufferers.  Also, check out this cool video demonstrating therapeutic playfulness from John’s blog.