Richard Taylor – Collected works

Posted on August 21, 2015 by Dementia Australia Library

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

Book: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

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

DVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.” These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

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

DVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 2009

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.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

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

DVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions. The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

DVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to

Redefine the disease to better understand those experiencing it

Stop making people with dementia look and act like we do

Recast “problem behaviors” as mechanisms for coping and communicating

Find new ways to make normal life experiences accessible to people with dementia

Create more opportunities for people to feel connected and find meaning day to day

Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

How to communicate a person’s preferences to care staff

Whether asking for opinions and responses from people with dementia is confusing for them

Ways to have better long-distance interchanges with a loved one by phone

Whether better care practices can be taught or are essentially innate

And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle

Must-reads for carers and families of people with dementia

Posted on March 20, 2014 by Dementia Australia Library

This is a library ‘fantasy’ list. If you were to walk into our lovely little library – and we would LOVE you to do just that! – and commend yourself into our hands, this is what would we would send you home with. We know these books are of genuine use to those caring for people with dementia, please have a browse of the list and let us know if there are any you would like to borrow. Many are also likely to be offered through your local public library service as well.

First person accounts

First-person accounts from people with dementia are a really valuable insight into the experience of those living with dementia. Can they be heart-wrenching to read? Oh yes. Is it ridiculously brave to document your own experience of living with dementia whilst living with dementia? Unarguably so. Is it illuminating to understand, from a first-person perspective, the very personal and life-changing impacts? My goodness, gracious yes! Whenever I read first-person works I am the richer for it. It allows you to experience the world from another perspective, and as a result understand in a unique way what it might be like for someone with dementia and how I might be able to better help them.

Now, enough from me! Here’s a bit about the books.

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.

Richard Taylor has Younger Onset Dementia.

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. Her 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.

For Christine, Alzheimer’s disease with all the changes it brings, is part of her on-going journey.

Christine Boden has Younger Onset Dementia.

Carer accounts

For many of us, the care of family is taxing enough, without even considering the all-consuming demands of caring for a person with dementia. Particularly if that person also happens to be a much-loved parent or partner. Carers accounts offer us the opportunity to plunge into the astounding physical and emotional demands of looking out for a person with dementia. These are not always easy and/or comfortable reads but their raw honesty and often unflinching assessment of their successes and failures makes for very compelling and wonderfully human stories.

Here’s a few of our favourites:

Alzheimer’s: a love story, Vivienne Ulman

When Vivienne Ulman’s youngest child left home, she and her husband were poised to enjoy their freedom. Then her mother’s Alzheimer’s intervened. In Alzheimer’s: a love story, Vivienne records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustains them. Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he now amply returns this support. This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concerns for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Hazel’s Journey, Sue Pieters-Hawke

In November 2003, Hazel Hawke revealed that she was facing her greatest challenge – Alzheimer’s disease. Her courage and determination in the face of this cruel turn of fate touched millions. Now comes the full, inside story of Hazel’s journey with Alzheimer’s, told by her daughter Sue.

This is an intensely moving and personal story of an intelligent, independent woman struggling with the disease that is affecting an ever increasing number of Australians. From early denial to the awful anger that came after diagnosis and the acceptance that has developed since, Hazel’s Journey tell’s Hazel’s story – and shows what life is like for the hundreds of thousands of carers who are committed to helping their loved ones retain quality of life and to coping with the disease’s implacable progress. Inspiring, revealing and insightful, this is a journey you will never forget.

Losing Clive to younger onset dementia : One family’s story, Helen Beaumont

Clive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before.
Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia.
Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.

Guides to caring

Imagine if there was a way to have 24-7 access to a source of information and advice on caring for someone with dementia? These could be it, we know they have been very useful on a practical level for many of our library patrons.

The 36-hour day, Nancy Mace and Peter Rabins

The 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Understanding difficult behaviors, Anne Robinson

The detailed information on environmental, physical, and emotional influences is very beneficial to both family and professional caregivers striving to make improvements that may avoid difficult behaviors. Practical coping strategies for responding to challenging situations such as agitation, wandering, incontinence and resistance to care are also offered. These practical strategies for making changes based on possible causes and guidance to problem-solve helps to avoid the behavior and address it when it occurs.

Activities for people with dementia

Montessori based activities for persons with dementia: Volume 1 & 2, Cameron J. Camp (ed)

These books include intergenerational programming, group activities, ideas especially for men, and sensory stimulation exercises. Also, range-of-motion and self-care activities for enhancing restorative nursing and rehabilitation are described.

We can, we can, we can: purpose and pleasure for people living with dementia

Activity must meet our need for meaning and connection, as well as providing an outlet for creativity, spirituality, job, fun, and relaxation. Every one of us has leisure and recreation preferences. This collection of activities respects that diversity, as well as the need for a person-centred approach to activities.

Early stage dementia

Posted on February 13, 2014 by Dementia Australia Library

Dementia. It’s a dark, slightly hulking shadow in the background for many. Something we fear but trust that it will pass us by. What if it doesn’t? Would you, your doctor or your family know what early stage dementia ‘looks’ like? Today our post includes a range of resources for understanding changes you may see in someone who has early stage dementia.

Webpage: Early Diagnosis of Dementia, Alzheimer’s Australia

This webpage describes the benefits of early diagnosis of dementia, an overview of the diagnosis process, who can make a diagnosis of dementia, specialists you may see as part of diagnosis, types of dementia, current research and what to expect after diagnosis.

Book: Counseling People with Early-Stage Alzheimer’s Disease: A Powerful Process of Transformation, Robyn Yale

This brand-new book presents a new counseling framework designed for the challenges and needs arising from dementia. Robyn Yale is an internationally recognised expert on early-stage dementia support groups. The book explores the subjects of identity and self-esteem, resilience, relating to and educating others, stress management, special issues and challenges facing people with early-stage dementia, the role of family and many aspects of counseling those with early-stage dementia.

DVD: Living with memory loss: An exploration into the world of early stage dementia, Alzheimer’s Australia

This DVD takes you into the world of early stage dementia. It will demonstrate the benefit of coming together with others, to learn more about dementia and the role that sharing experiences can play in forging a meaningful direction in life after a diagnosis of dementia.

Website: How to Detect Dementia Early, Alzheimer’s Australia

This nifty self-contained website for doctors and other healthcare professionals includes a screening tool that could help with early diagnosis, free helpsheets to give to patients and access to a surgery kit which has loads of leaflets, posters and helpsheets for a clinic. There are also clinical research articles, websites and accredited education courses listed.

Journal Article: Collective Strength: The impact of developing a shared social identity in early-stage dementia, Linda Clare; Julia M. Rowlands and Rebecca Quin. Dementia: the international journal of social research and practice, 2008.

Abstract: Current theories of social power suggest that development of a shared social identity can create the possibility of bringing about political and attitudinal change as well as benefiting individual psychological well-being. This exploratory, qualitative, internet-based study extending over two years explored the impact of developing a shared social identity among a group of people with early-stage dementia. We investigated the experience of belonging to the self-help network Dementia Advocacy and Support International (DASNI), and its effect on self-concept and adjustment, from the perspective of DASNI members in order to understand more about the factors that promote self-help, and the effects of engaging in self-help, mutual support and advocacy in this context. Seven active members of DASNI with a dementia diagnosis volunteered to participate. Interviews were conducted via email, and Interpretative Phenomenological Analysis (IPA) was used to develop a thematic account. The challenges engendered by the onset of dementia were reflected in descriptions of loss, struggle and uncertainty. Participating in DASNI, in contrast, engendered a sense of collective strength and having something valuable to contribute, and made it possible to discover that there can be life after diagnosis. Belonging to DASNI helped to counteract the challenges to self and identity posed by developing dementia, thus significantly affecting the experience of living with dementia, and creating the possibility of effecting social change. Gradually, people in the mild to moderate stages of dementia are developing a `voice’ and rejecting the passive patient role. One important element in this process is the way in which people with dementia band together to help themselves and one another, and influence social attitudes, through mutual support and collaborative advocacy. The development of DASNI, consistent with recent theoretical developments in conceptualizing processes of social power and influence, offers significant potential for change.

Note: if you’re interested in reading this article, please click the Request an Article under “How to Borrow” menu at the top of the page

Website: Start2Talk, Alzheimer’s Australia

This website has been created to help people with dementia and carers plan for the future. There are many practical worksheets to help users move through different processes and plan ahead – with materials designed for both carers and people with dementia. The site also includes lists of state-centric tools and resources to assist with creating wills, advance directives and a range of other legal considerations. Information for GP’s, GP Practice Nurses, Multicultural Workers and Aboriginal Health Workers. Below is a brief introduction to Start2Talk and why it might be important for you.

Webpage: 1o early signs and symptoms of Alzheimer’s, Alzheimer’s Association

This online article from an American Alzheimer’s body provides a straight-forward list of warning signs that could indicate dementia. Informative, easy-to-understand and useful, I am still moved to remind you that the best method of diagnosing dementia is to consult your GP.

YouTube: Four Stages of Dementia: The Early Stage, Rainbow Hospice

This short video describes some of the changes and warning signs you may see when someone has dementia. At just under 2 minutes long, it is well-presented, to the point and easy to digest.

Dementia and Driving

Posted on December 5, 2013 by Dementia Australia Library

Driving 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

With 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

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

A 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

People 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

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

Posted on November 21, 2013 by Dementia Australia Library

Artist Shane Pilot Dementia 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 assessment 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

Posted on October 24, 2013 by Dementia Australia Library

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

Pitched 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

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 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

This 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

Personally, 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

Posted on September 19, 2013 by Dementia Australia Library

So 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

People 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

Alzheimer’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

In 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.

Research 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

BrainyApp 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.

Prevention 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_dvd The 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.