How to design a more dementia-friendly home or assisted living environment

This post presents a range of resources on how to design or modify home and assisted living environments to be more dementia-friendly. Many of the resources in today’s post are books.

Remember, you are welcome to visit us in the library to take a look at these books and articles.  We can also send them out to you if that is not possible. At the end of this post, there are links to the web form you can use to request books or articles that are of interest – but remember, you must be a member of Alzheimer’s Australia VIC :-).

Dementia design for the home

10-Helpful-Hints-Dementia-Design-Home-MediumBook: 10 helpful hints for dementia design at home: Practical design solutions for carers living at home with someone who has dementia

This book focuses on practical design tips which may result in greater independence for people with dementia living in their home. Many ideas included in this book are low or no cost.  The book’s introduction sums its purpose up nicely:

‘People with dementia and those who live with and care for them have a lot to contend with. However, some everyday problems are actually unnecessary. This book is intended as a practical guide to making things easier through making adjustments in your home or wherever a person with dementia is living, or being cared for. (p.3)’

Book and website: Adapting Your Home: Supporting people in their home environment

Adapting your homeThis Alzheimer’s Australia publication and accompanying website has a multitude of helpful suggestions on how to transform your home so that it better supports and enables someone who has dementia. Making changes to the home can result in significant changes in well-being, health and independence for a person with dementia.

This resource includes information on personal considerations, improving lighting, specific detail on changes to different rooms to enhance their utility for a person with dementia, garden design and participation, other useful resources and a checklist for conducting a home audit.

Design for assisted living settings

Book: ArchitArchitetecture for an_webecture for an Ageing Population

This compilation of more than 30 outstanding projects in the areas of assisted living, continuing care retirement communities and nursing homes represents the best current work designed by architects for the ever-increasing population of the ageing and elderly. Each project is presented with photographs, detailed plans and statistics, illuminating the high level of research, planning and community involvement that goes into these advancements in living environments for seniors.

designing interiors for people with dementiaBook: Designing interiors for people with dementia, Richard Pollock

The interiors of buildings can be designed to compensate for the disabilities arising from dementia, including impaired memory, especially recent memory; impaired learning; impaired reasoning; high levels of stress; increasing dependence on the senses, yet often impaired visual perception.  If we provide the right environment, we can help people to remain as independent as they can be.  This book focuses primarily on fixtures and fittings in the context of interior design.

DesigningMentalHealthUnitsBook: Designing mental health units for older people, Mary Marshall

People with dementia who are admitted to older people’s mental health units are usually acutely distressed. They need an environment which is calm, quiet, understandable and safe. Dementia-friendly design is a non-pharmaceutical intervention in itself. It also provides the optimal setting for the full range of interventions that people with dementia in older people’s mental health units will receive. It is almost cost neutral and simply requires a real understanding of the impairments that old age and dementia bring, and which are especially complex when combined.

AAA_NovDec14Article: Bad buildings and challenging behaviours, Colm Cunningham and Rebecca Forbes, Australian Ageing Agenda, November – December 2014

When good design features are missing it’s much more likely that people with dementia will display excess BPSD as a result of the confusion and frustration caused by their environment.

EBDjournalJournal: Evidence Based Design, Journal 1: Aged Care: Evidence-based strategies for the design of aged-care environments

This free, PDF-based journal focuses it’s first issue on design of aged care facilities. Over 1,190 research publications were reviewed, with only those articles most relevant to the design process selected.
Issue 01 of the EBD journal is essential reading for anyone developing a new aged care facility, or remodelling an existing one. Containing globally relevant, detailed case studies, evidence based design strategies, and articles about future trends, the Aged Care Issue of EBD Journal will assist you with brief development, design and facility management.

 Other environmental considerations

hearing, sound and the acoustic environmentBook: Hearing, sound and the acoustic environment for people with dementia, Maria McManus and Clifford McClenaghan

This book is one of a series published by Hammond Press to assist providers, architects, commissioners and managers to improve the design of buildings which are used by people with dementia. The quality of the acoustic environment is a vital component of good dementia-friendly design. People need to be able to hear well in order to make sense of it and in order to function at the highest level possible. It is essential that adaptations which simplify and clarify the acoustic environment, and which reduce discomfort and auditory ‘clutter’ are put in place. Good acoustics can actively contribute to ensuring that a person with dementia can communicate and remain included within the community within which they live, be that a care home, supported housing scheme or hospital care.

lightandlightingdesignBook: Light and lighting design for people with dementia, David McNair, Colm Cunningham, Richard Pollock, Brain McGuire

This book is allso from the series published by the Hammond Press to assist providers, architects, commissioners and managers to improve the design of buildings which are used by people with dementia. It provides guidance on appropriate lighting design for environments used by people with dementia and is relevant for new-builds, refurbishments and alterations to residential buildings. The visual sense can act as a critical tool, allowing the person with dementia to make sense of their environment and maximise their remaining abilities. As a result, good lighting design can enable a person with dementia to experience more independence, have more of a choice and thus retain more dignity.

AJDCdec13jan14Article: The importance of colour in dementia design, Debbie de Fiddes, Australian Journal of Dementia Care Vol. 2 No. 6, December 2013/January 2014

In the first of a series of articles explaining the connection between colour and lighting and the impact thoughtful design can have on the living environment for people with dementia, Debbie de Fiddes explains why colour is so important.

AJDC_AprMay2014Article: The power of colour, Debbie de Fiddes, Australian Journal of Dementia Care Vol. 3 No. 2, April/May 2014

In the second article about the impact of thoughtful design on the living environment for people with dementia, Debbie de Fiddes continues to explore the role of colour and explains how it can be used as a therapeutic tool.

Interested in an article or book?

You can request books or articles here. Remember, you do need to be a member of Alzheimer’s Australia VIC!  Find out more about joining here.

 

Summer reading

Reading about dementia is not, perhaps, what immediately springs to mind when considering your summer book list but there is an ever-growing body of work that interweaves accurate representations of dementia with very good story-telling.  Here’s three for your consideration. If you would like to borrow any of these books, please contact us at the library or it may also be possible to source these from your local library.

all that's missingAll That’s Missing by Sarah Sullivan  (2013)

This book has appeal for teenage and adult readers alike. A fantastic story, told with sensitivity and insight into the complicated situations families find themselves in and the unique solutions that can sometimes be found when circumstances demand it. All That’s Missing would be suitable for readers from the age of 12 years +.

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. Unfailingly honest and touched with a dash of magical realism, Sarah Sullivan’s evocative debut novel delves into a family mystery and unearths universal truths about home, trust, friendship, and strength — all the things a boy needs.

The things between usThe Things Between Us – Living Words: Anthology 1 – Words and Poems of People Experiencing Dementia  /  Illustrated by Julia Miranda, Introduction by Lynda Bellingham, Compiled by Susanna Howard  (2014)

‘This is an important collection of witnessings to an important subject, and valuable for what it addresses, as well as the way it addresses.’ Sir Andrew Motion

‘This is poetry from a place where we assume there are no more words to come, which makes it all the more powerful, moving and important. This book should be essential reading for every surgery care home and hospital and for all of us who are living with loved ones with dementia.’ Meera Syal OBE

‘I would so love to have had this book when my mother was struggling with Alzheimer’s.’ Lynda Bellingham OBE

Living Words has been working in the UK with people experiencing dementia since late 2007. This anthology contains a selection of their words and poems.

under the roseUnder the rose bush  /  Jane Fry ; illustrator Sandi Harrold  ( 2013)

Under the rose bush is a short story which explores a touching relationship between a young girl and her grandmother who develops Alzheimers disease.

Sarah and her Granny are great friends. They spend a lot of time playing and learning together, gradually Sarah notices changes in her Granny. Sarah learns to adjust to the situation as her grandmother ages. Her story provides a sense of optimism despite the grief of eventually losing her beloved grandmother.

The book helps children to understand the illness and teaches them how to cope with supporting their grandparents through a difficult time.

Films about dementia

A growing collection of resources exists about dementia – extensive research articles, non-fiction, fiction, memoirs, poetry and film. Today’s post covers three films about dementia—or dementia-like symptoms—and the impact dementia has on the person with dementia, those caring for them and others in their life.

We have many more films available about dementia, so don’t hesitate to come in and see us if you’d like to find out more about our film collection. If you’re interested in any of these titles, you can request them here – remember, you have to be a member of Alzheimer’s Australia Vic.

Still mine, 2012still mine

This is an intimate portrait of Frank, a man in his late eighties who finds himself caring for his wife of 61 years. Whilst no formal diagnosis is ever made, it is apparent that Irene has dementia and requires more support to continue to live at home. Facing the realities of their changing circumstances, Frank decides to build a dwelling more suitable than their long-term family home and is thrust into the contemporary world of permits, plans, building codes and the consequences of not complying with these restrictions.

Whilst taking on more tasks within the home, to compensate for Irene’s changing abilities, Frank also contends with the concerns of his seven children and their preference to have Irene, or possibly both Frank and Irene, getting professional care or support.

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.

fireflyFirefly dreams, 2004

A Japanese sub-titled film about a troubled teenage girl who forges an unlikely friendship with an older person with dementia, becoming her carer and companion. This coming of age story focuses on 17 year old Naomi, sent to spend the summer holidays with her aunt in a small Japanese village whilst her parents navigate their separation and increasing inability to cope with Naomi’s behaviour. Initially, Naomi is stifled by the slower pace and physical demands of working with her aunt’s family in the hotel they run. She misses the city and is frustrated by her cousin, Yumi. Naomi goes to visit Mrs Koide, whom she knows from her childhood and at first is baffled by the inconsistencies in her elderly relative’s behaviour. As the summer passes, Naomi grows closer to Mrs Koide and her aunt’s family and whilst sometimes puzzled by Mrs Koide’s abrupt changes of topic, she tolerates and supports Mrs Koide’s needs.

Dementia is not overtly referred to in this film and the carer role that Naomi occupies is quite lightweight – focused on companionship rather than the day-to-day requirements of caring. The representation of dementia in this film focuses on some fairly mild forgetfulness, the person with dementia revisiting and re-enacting key past life experiences and some hospitalisation scenes.

In this film, the person with dementia dies and the implication is that her death was directly linked to dementia.

finding-nemo-dvdFinding Nemo, 2003

Although not immediately a dementia film, in Finding Nemo the character of Dory exhibits dementia-like symptoms which may help a younger child understand and experience dementia in a film.

This film, about a fish called Marlin looking for his lost son, Nemo, with the help of an often-forgetful and distracted fish called Dory. Dementia is not directly referred to in the film. Instead, Dory describes her condition as ‘short term memory loss that runs in the family’. As a result, the short term memory issues that can be experienced as part of dementia are front-and-centre, however the film also showcases Dory as a real person, not a caricature and someone who is able to contribute in her own right to her friend’s predicament. It shows some of the challenges of dementia, where some very routine procedural activities remain perfectly intact whilst other newer memories are tenuous and readily forgotten.

Finding Nemo also deals with Dory’s own anxiety, frustration and sometimes sadness with the limitations of her short term memory issues.

Overall, for younger children this could be a good film as a discussion piece to expand on a child’s experience of dementia and perhaps through Dory, their feelings about dementia.

 

 Note: these reviews are the opinion of an individual, and do not represent the views of Alzheimer’s Australia, or Alzheimer’s Australia VIC.

From the horse’s mouth: information about dementia from people with dementia

Today’s collection of resources focuses on what we refer to as ‘first person accounts’ — books, videos, DVDs and blogs created by people with dementia.

For people with dementia, these are valuable resources and the authors of these various works are keen to share their personal experiences and how they would like the world to respond to and interact with them. For others, such as carers, family, friends and health professionals these stories are a very important insight into the experience of dementia and how people with dementia would like us to ‘be’ when with them.

Still Alice coverFiction: Still Alice, Lisa Genova

This fictional account of dementia is meticulously researched and very accurately and honestly portrays a Harvard University professor’s experience of Alzheimer’s Disease. As well as the protagonist’s own perspective on her dementia, she also describes how she experiences interactions with her husband, children, students and co-workers as her disease progresses.

This is a wonderful book, with a well-crafted story which is both compelling and completely believable as well as factually correct.

YouTube: Dementia: My Story, Kate Swaffer

Kate Swaffer was diagnosed with dementia at age 49. This 2 minute clip describes her feelings when she was first diagnosed with dementia.

who_will_i_be_when_i_die_webFirst person account: Who will I be when I die?, Christine Boden

For many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then. Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Hebe_with_me_today_webr story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

DVD: Be with me today : a challenge to the Alzheimer’s outsider, Richard Taylor

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

YouTube: What Dementia Is To Me, Dr Jennifer Bute

Dr Bute is a doctor who has been diagnosed with dementia. In this short film she talks honestly but positively about the challenges of living with dementia and what is helpful to her in managing her day-to-day life.

can_I_tell_you_about_dementiaFiction: Can I tell you about Dementia?, Jude Welton

Meet Jack – an older man with dementia. Jack invites readers to learn about dementia from his perspective, helping them to

understand the challenges faced by someone with dementia and the changes it causes to memory, communication and behaviour. He also gives advice on how to help someone with dementia stay as mentally and physically active as possible, keep safe and continue to feel cared for and valued.

With illustrations throughout, this useful book will be an ideal introduction to dementia for anyone.

Blog: Creating life with words: Inspiration, love and truth, Kate Swafferkswaffer_blog

kateswaffer.com is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones.

while i still canFirst person account: While I still can…: one man’s journey through early onset Alzheimer’s disease, Rick Phelps [& Gary Joseph LeBlanc]

Rare is the opportunity to experience the nightmare of Early Onset Alzheimer’s Disease from the perspective of a patient. In his book, While I Still Can, Rick Phelps, the founder of “Memory People”, an online Alzheimer’s and memory impairment support and awareness group, changes that. Diagnosed at the age of 57 with this fatal disease, Phelps has decided it was time the veil was lifted. Throughout this book the reader is given a firsthand account of the early signs that Phelps experienced before being diagnosed with EOAD, the loneliness he felt during the denial period of family and friends and the terror that gripped his heart upon receiving the undeniable diagnosis. Phelps then describes how he and his loved ones have learned to cope since his diagnosis, finding the will to continue to live and love everyday, while he still can.

alzheimers_from_the_inside_out_webFirst person account: Alzheimer’s from the inside out, Richard Taylor

Receiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others. With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood, unwanted personality shifts, communication difficulties, changes in relationships with loved ones and friends, the declining ability to perform familiar tasks. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

dancing with dementiaFirst person account: Dancing with dementia : my story of living positively with dementia, Christine Bryden

Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences. This book is a vivid account of the author’s experiences living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband, Paul, she continues to lead an active life nevertheless, and explains how professionals and caregivers can help.

YouTube:Hello Dinner, Richard Taylor

In this brief video Richard Taylor talks about the benefits of connecting with people with dementia, in terms of a social network, as a person with dementia. It is an articulate and compelling perspective from someone who is living the experience of dementia.

understanding dementiaNon-fiction: Understanding Alzheimer’s: The complete Australian guide to the management and prevention of Alzheimer’s, Professor Ralph Martins

The book is aimed at those in the early stages of the disease, as well as the families, friends and professionals who take on the care of Alzheimer sufferers. There are chapters on diagnosis, research, prevention, treatment, legal issues, impact on loved ones and decision making to do with caring for patients. In addition to practical information and advice, each chapter contains a case study; these detailed accounts provide a personal and heartfelt perspective on the disease. An Australian book, it’s packed with information from Australian experts, and is a welcome addition to information in the field.

Help Sheets: Information for people with dementia, Alzheimer’s Australia

Alzheimer’s Australia have a series of Help Sheets for people with dementia. Our entire series is listed here:

1. About you… What is dementia?

2. About you… Early planning

3. About you… Looking after yourself

4. About you… Driving

5. About you… Living alone

6. About you… Feelings and adjusting to change

7. About you… Keeping involved

8. About you… Talking about the diagnosis

9. About you… Talking with your doctor

10. About you… Making employment decisions

11. About you… How Alzheimer’s Australia can help

You can access these Help Sheets here, please note that you will need to scroll down the page to the heading Information for people with dementia and click the heading to access the Help Sheets.

Dementia, Down syndrome and learning disabilities

One thing we know about dementia is that it does not discriminate – it is an equal opportunity disease. Alzheimer’s disease is the most common form of dementia in the general population. It is also the most common form of dementia in people with Down syndrome. The difference for people with Down syndrome is that it occurs more frequently and at a younger age than in the general population*. Our post today focuses on resources about Down syndrome, learning disabilities and dementia.


Book: Intellectual Disability and Dementia: research into practice, edited by Karen Watchman, 2014

intellectual disability and deme

Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services

Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support.

Practitioners, managers and commissioners will find this to be an informative resource for developing person-centred provision for people with intellectual disabilities and dementia and their families. It will also be a key text for academics and students who wish to be up-to-date with the latest research and practice developments in this field.

This book is available for loan to members of our library.


Report: Dementia and People with Learning Disabilities: Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia by The British Psychological Society and the Royal College of Psychiatrists  (2009)dementia_&_people_with_learning_disabilities

This report, which can be downloaded for no cost,  is the result of a joint working group of the Learning Disability Faculty of the British Psychological Society and the Royal College of Psychiatrists.

The main purpose of the report is to enable those working in clinical and social care services to improve the quality of life of people with learning disabilities who develop dementia, by providing guidance to inform assessment, diagnosis, treatment and support. The guidance is aimed at clinicians in learning disability and older peoples’ mental health services and services for younger people with dementia.

The constraints of time and practicality have meant that it has not been possible to produce a report that addresses every aspect of dementia in people with learning disabilities. Our main focus has been to highlight the key factors that we consider are the elements of an excellent service, and to help those working in services evaluate how they might help the increasing numbers of people with learning disabilities who are developing dementia given improvements in life-expectancy.


About dementia cover 413x589Book: About dementia: for people with learning disabilities by Karen Dodd, Vicky Turk and Michelle Christmas  (2005)

This book is specifically designed for people with learning disabilities. It explains dementia in simple, appropriate language and answers common questions.


About my friend cover 411x615Book: About my friend: for friends of people Down’s syndrome and dementia by Karen Dodd, Vicky Turk and Michelle Christmas with illustrations by Keith Jones  (2005)

This illustrated booklet describes the dementia process and helps people with a learning disability understand what happens when a friend gets dementia. It explains the changes that may occur and offers advice about people who can help. Another resource specifically designed for those with learning disabilities.


Book: Down’s syndrome and dementia : a resource for carers and support staff by Dodd, Karen  (2009)

Down syn dementia _bild_webA resource book for family carers, staff and other professionals to help them care more effectively for people with Down’s syndrome and dementia.

The book focuses on practical day-to-day issues, including:

– supporting the person with Down’s syndrome and dementia to maintain skills and independence in every way and for as long as possible
– understanding and responding appropriately to changes in behaviour during the early, middle and late stages of dementia
– improving the confidence of carers to look after individuals.


Film: What is happening to my friend Mary?

This is an education and training video which, together with the handbook, forms a package designed to help people who have an intellectual disability understand what happens when a friend or family member has Dementia or Alzheimer’s disease.  The package has been developed in response to the recognition that it is difficult for people with an intellectual disability to understand the changes they may see in friends or family members if they develop dementia. It uses feature actors who have Down’s syndrome.

Note: this is an older resource and the production style and attire of the actors is decidely retro, but still plenty of good content which may help a person with a learning disability understand more about dementia.


Report: Down Syndrome and Alzheimer’s disease, Alzheimer’s Australia, Down Syndrome Australia and the Centre for Developmental Disability Health Victoria (CDDHV).

DS and dementiaDown syndrome is the most common cause of intellectual disability and occurs across all races and cultures. Down syndrome is associated with a wide range or health issues. This booklet will help you understand the relationship between Down syndrome and Alzheimer’s disease. Alzheimer’s disease is the most common form of dementia in the general population. It is also the most common form of dementia in people with Down syndrome. The difference for people with Down syndrome is that it occurs more frequently and at a younger age than in the general population. This report addresses common questions about Down syndrome and Alzheimer’s disease.


Article: The needs of people with learning disabilities who develop dementia: A literature review, Penny Llewellyn, Dementia, 2011

dementia journalPeople with learning disabilities are living longer and are increasingly developing age related conditions including dementia. If this occurs, their medical and social needs pose many challenges for services. A literature review was undertaken of articles published between 1996— 2006. Data was collected relating to the needs of people with learning disabilities and dementia, their carers and their peers. The primary medical need is for timely and accurate diagnosis. There is a multitude of diagnostic tools and advice is available as to which are most suitable for different client groups. The needs of carers are intertwined with those of people with learning disabilities and dementia and meeting their needs for education, training and increased staff numbers, has proved beneficial. Although multiple services will be responsible for the needs of this client group, there is a consensus that learning disability services should be at the heart of service provision.


Article: Coping with dementia and older families of adults with Down syndrome, Matthew P. Janicki, Anna Zendell, Kathleen DeHaven, Dementia, 2010

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.


Interested in an article?

Use this form to let us know. Remember, you do need to be a member of Alzheimer’s Australia VIC!  Find out more about joining here.

 

* excerpt from Down syndrome and Alzheimer’s disease, Alzheimer’s Australia, Down Syndrome Australia and the Centre for Developmental Disability Health Victoria (CDDHV).

Creating a dementia-friendly nation – Dementia Awareness Month

dementia friendly nationEvery September we work extra, extra hard to draw Australia’s attention to dementia and this September is no exception. Our focus this year is Creating a dementia-friendly nation.  A dementia-friendly nation encourages Australians to become dementia-aware and to have a better understanding of what it is like for a person to live with dementia. We are keen to help communities become dementia-friendly, where people with dementia feel understood, engaged, included and valued.

During September there will be a range of events that you may be interested in attending. Here’s an excerpt from the calendar, you can find the full schedule of events here:

14 September: Memory Walk and Jog Geelong. Find out more info or register for this event.

18 September: Dementia Awareness Month Public Lecture: Dementia-friendly concepts and communities by Steve Milton. Steve Milton is one of three directors of Innovations in Dementia, a not-for-profit community interest company in the UK. Innovations in Dementia work with people with dementia, partner organisations and professionals to develop and test projects that enhance the lives of people with dementia. Steve takes a leading role on dementia-friendly communities – and despite their small size – Innovations in Dementia’s work in this area has been highly influential in the UK, which made the creation of dementia-friendly communities a priority of the Prime Ministers Dementia Challenge in 2012. Register for this event. Or download a flyer with more information on the event.

21 September: World Alzheimer’s Day

Activities are planned for all over Victoria, take a squiz at the Calendar of Events which includes detail on Melbourne-based and regional events. Whether you’re in Glen Waverley, Leongatha or Mildura, we have something for you.

 

 

 

Upcoming Melbourne forum: Technology and Dementia: A Game Changer

As part of Alzhtech and dem a game changer_webeimer’s Australia Vic’s Leadership in quality dementia support series on Tuesday 2 September we have a unique event on offer, Technology and Dementia: A Game Changer.

Increasing rates of dementia, a declining workforce, rising costs of care and the shift to consumer directed care all provide challenges to service providers.

This forum will explore both local and international examples of the diverse ways technology can complement and enhance the services supporting people living with the dementia including:
• Use of ipads
• Use of apps
• Use of robots
• Use of gaming in an educative and therapeutic context
• Digitally augmented environments in residential aged care
• Use of art and design programs
• Bringing about a Montessori culture change

Dr Adam GazzaleyLeading this unique program of speakers is International Keynote Speaker Dr Adam Gazzaley MD PhD Professor of Neurology, Physiology and Psychiatry and Director, Neuroscience Imaging Center, University of California, San Francisco. Having developed one of the worlds first unique gaming programs that enhances cognitive function, he will talk to bridging the gap between technology and neuroscience.

Speakers include:

Dr Adam Gazzaley MD PhD

James Bonner & Norman Wang Directors, Opaque Multimedia

Mandy Salomon, Senior Researcher, Smart Services CR

Efterpi Soropos, Founder and Director, Human Rooms™

Professor Wendy Moyle, Director, Centre for Health Practice, Innovation, Griffith University

Dr Darragh O’Brien, Principal, Architectural Research Consultancy (ARC)

VENUE

Hilton on the Park, 192 Wellington Parade, Melbourne.

TIME

9.00am Registration, Event 9.30am – 4.30pm

COST

$195 pp | member: $186pp

CNE Points

5.5

BOOKINGS ESSENTIAL
To register and for further information go to https://leadership14.eventarc.com/22278
email vic.education@alzheimers.org.au | call 03 9816 5708

You can find a link to the flyer for this forum here: AAVic Leadership forum_Sept2014_Special Offer.

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. It typically affects people at a younger age than Alzheimer’s disease, with symptoms beginning in the 50s or 60s, and sometimes younger. Almost a third of people with FTD have a family history of dementia.

The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.

Book: Frontotemporal dementia syndromes, John R Hodges. 2007.

frontotemporal dementia syndromesIn the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.

Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow  &  Gail Elliot. 2012.

frank and tess - detectives_webFrontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.

This is a free, downloadable resource you can access here.

Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014

ADOD28(1)Jan-Mar14Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.

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Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.

AnEvolutionOfLoveBob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50.  He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

Website: AFTD Kids and Teens

aftd kids and teens_webWhen a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.

YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.

An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).

Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens,  The Association for Frontotemporal Degeneration. c2012.

what about the kidsYou are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.

FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.

As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.

This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.

This book is available as a free download here.

Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.

Pick's Disease and Complex_webPick’s disease, a form of dementia often accompanied by aphasia has been know for over a century.  The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose.  This book presents the clinical and pathological manifestations of Pick’s disease.  It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease.  It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.

YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant.  2010.

Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

Note: this is an hour-long feature film.

Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014

dementia journalAtypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

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Help Sheet: Frontotemporal Dementia, Alzheimer’s Australia

This Help Sheet describes a type of dementia known as frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.
It’s a free download and might be a good resource for friends and family as it’s succinct.

Animal assisted therapy for people with dementia

Dogs, cats and smaller animals such as birds can be devoted companions and a comfort to us. The unconditional love and companionship that an animal offers can reconnect us with good feelings and with the wider world.

Animals, in particular dogs, can also assist people with dementia to live independently for longer, instill a sense of purpose to our lives, provide sensory stimulation and even prompt reminiscence.

Article: Dementia Dogs Alex and Vonn start work, Dementia in Scotland, 2013

Dem_in_Scotland_webLast July two specially-trained assistance dogs were paired with families in Scotland as part Alzheimer Scotland’s Dementia Dog pilot project. Two more dementia assistance dogs, Alex and Vonn, have recently paired with their new families: Alex & Moira, and David & Maureen.

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a life worth livingBook: A life worth living: practical strategies for reducing depression in older adults, Pearl M. Mosher-Ashley and Phyllis W. Barrett

Chapter 6 of this book is Man’s Best Friend Animal-Assisted Therapy and it discusses the benefits of introducing animals to the lives of older people, including people with cognitive impairment. Using a combination of case studies and practical information on the implementation and use of animal-assisted therapy this chapter provides much useful information on how to successfully introduce this type of intervention. It also includes a template for an Animal-Assisted Therapy Interest Inventory and an Animal-Assisted Therapy Monitoring Form.

Guidelines: Animal Assisted Therapy (Pet Therapy) in Dementia Care, Dementia Behaviour Management Advisory Service (Vic), 2012

AAT_DBMAS_webThis Clinical Practice Guidelines describe how to implement Animal Assisted Therapy with live animals and robotic pets.

 

 Article: Pet encounters: Animal-assisted therapy for frail older adults, Linda L. Buettner, Activities Directors’ Quarterly, 2008

Animal Assisted Therapy (AAT), or using trained animals to facilitate therapeutic outcomes, is becoming a more popular way to provide effective therapy to older adults. The purpose of this article is to increase awareness about AAT and to introduce an effective program which provides AAT: Pet Encounters. This article describes the Pet Encounters program, its requirements, components, procedures, benefits, and evaluation methods.

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Workplace Training: Child and animal representational therapy and pets, Alzheimer’s Australia Victoriadementia education directory 2014 web

Understand the use of child and animal representational therapy plus pet therapy as a non-pharmacological intervention and an alternative strategy in reducing behavioural and psychological symptoms of dementia.

Refer to page 28 of the Education Directory for details of this course.

 

adqcovrArticle: Animal-assisted therapy as a nondrug approach to pain and depression for older adults with dementia, Nancy E. Richeson, Activities Directors’ Quarterly, 2007

This article will discuss the use of animal-assisted therapy as a therapeutic intervention to treat pain and depression in older adults with severe dementia. To implement this intervention, an understanding of the use of recreation as a nondrug approach to treating clinical problems such as pain and depression is needed. A review of the recreation therapy literature is a recommended starting point.

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american journal of recreationalContent validation and pilot studies of the Therapy Effectiveness Evaluation for Animal-Assisted Therapy instrument, Joan Glacken and Marilyn K. Lawrence, American Journal of Recreational Therapy

Few evaluation tools exist for recreational therapists to use for guidance when considering whether to initiate animal-assisted therapy and evaluate the effectiveness of the therapy on clients. The purpose of this study was to determine the content validity of the Therapy Effectiveness Evaluation for Animal-Assisted Therapy instrument and whether the instrument is an effective tool in measuring improvement for functional domains (cognitive, physical, social, and emotional) of adult clients. The client data collected during the validation study were analyzed, and positive increases from pre- and post-test assessments were statistically significant (∝ = 0.05) for all four functional domains. This is a strong indication that animal-assisted therapy is a viable strategy for improving cognitive, physical, social, and emotional functioning in adults.

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Doll Therapy (Child Representational Therapy)

We often give dolls to young children, particularly girls. We smile indulgently when they nurse and nurture these toys like they would a real infant. It’s fascinating to observe the innate drive to care for those who cannot care for themselves.

Doll therapy, also known as child representational therapy, is a successful form of therapy for supporting people with dementia. It has been found, both anecdotally and clinically, to reduce anxiety and agitation in people with dementia. Indeed, doll therapy can have a truly trans-formative effect for some people, bringing them a sense of purpose, joy and peace.

dementia journalArticle: Doll therapy: A therapeutic means to meet past attachment needs and diminish behaviours of concern in a person living with dementia – a case study approach, L. Bisiani and J. Angus. Dementia 0(0), 2012 1-16

Abstract

The aim of this research study was to examine the impact of the provision of a lifelike baby doll as a therapeutic tool on the behaviour of a person living with dementia. Specifically, this single case study assessed the potential benefits, if any, of the use of doll therapy in reducing behaviours of concern such as anxiety and agitation that may be associated with observed attachment needs of a person living with dementia.

Method: A single case study of a female participant, with moderately advanced Alzheimer’s disease, was the subject of this research. The case study used both qualitative and quantitative research design and methodology in data collection and analysis.

Results: Demonstrated that doll therapy was a positive intervention for the person living with dementia who was the participant in this research. The findings indicate a reduction in behaviours of concern related to the need for attachment and a considerable decline in levels of anxiety and agitation. There was extensive ongoing improvement in social interaction and communication.

Conclusion: This research supports doll therapy as a therapeutic intervention that may be utilized within the ongoing care of some persons with dementia to meet needs for attachment and to reduce behaviours of concern. Despite some controversy on this topic, doll therapy should be considered as a therapeutic approach to further dementia care in light of this positive outcome.

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DVD: Jack: Quality of life in Dementia Care, Alzheimer’s Australia Tas, 2006Jack

This DVD is a delight to watch. The care and love Jack lavishes on his ‘babies’ is beautiful to behold. Interspersed with commentary from professionals, staff who care for Jack and Jack’s daughter it tells a wonderful story about how the life of a person with dementia was transformed through person-centered care.

 

Clinical Practice Guidelines: Child Representational Therapy in Dementia Care, Dementia Behaviour Advisory Service (DBMAS), June 2009

Child representational therapyThis Australian federal government guidelines document outlines how to implement doll therapy, who would benefit from it, communication between caregivers regarding the therapy and additional special notes and precautions.

 

Article: Growing number of care homes using controversial doll therapy on people with dementia, Sue Learner, 5 March 2014

Doll therapy is being used in a growing number of care homes, yet it is still seen as a controversial intervention despite its benefits. Read article.

 

Article: The use of doll therapy to help improve well-being, Leah Bisani and Jocelyn Angus. Australian Journal of Dementia Care 2(3), June/July 2013

AJDC_coverLeah Bisani and Jocelyn Angus discuss the role of doll therapy in working with people with dementia, and how it can be incorporated into a person’s present reality with dignity and respect.

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Article: The Therapeutic Use of Doll Therapy, Dr Daniel Nightingale. Dementia Therapy Care Iss. 2, Fall 2013

From the article:

“On numerous occasions, whilst visiting communities that provide care and support to people living with dementia, I come across ladies who carry with them dolls or cuddly toys.

At first sight, one might think this behavior childlike, a return to infantilism or even totally and completely age inappropriate…”

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Catalogue: Sensory Products Summer Catalogue, Summer 2013.

Alzheimer’s Australia SA offers a sales service which includes infant-style dolls for purchase. Refer to the catalogue, page 13 for details on the dolls. Order forms at the end of the catalogue.

Article: Older adults’ views and experiences of doll therapy in residential care homes, H. Alander, T. Prescott, Ian A James. Dementia 13(4), July 2013

dementia journalAbstract

Background and purpose: The mechanisms underlying the success of doll therapy are poorly understood. The aims of this study were to explore how people in care, doll users and non-users, make sense of doll use in their settings.

Methodology: A grounded theory approach was used, recruiting participants from three residential care homes involving four male and 12 female residents. Data collection occurred in two phases; five participants took part in a focus group and later 11 participants were interviewed individually. Eight of the 11 participants had dementia, and four participants were actively using dolls.

Results and conclusion: The results are presented as themes, and sub-themes, consisting of four main categories (intrapersonal features, interpersonal features, behavioural benefits, ethical and moderating factors). This thematic analysis shows that residents generally support the use of dolls, believing that dolls can have a positive impact on some users. The mechanisms by which this impact is achieved are discussed together with the ethical concerns.

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