HIV and HIV-associated neurocognitive disorders (HAND)

HIV stands for human immunodeficiency virus. This post is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND).

YouTube: Understanding HIV-Associated Neurocognitive Disorders (HAND), Alzheimer’s Australia Vic

YouTube: Supporting someone who is living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

Toolkit: HIV-Associated Neurocognitive Disorders (HAND): Toolkit for community care workers, Alzheimer’s Australia Vic, 2014

HIVHANDCommCareThis toolkit is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND). HAND affects cognitive (thinking) abilities such as memory, language, attention, concentration, planning, judgement and organisation.

This toolkit is for paid and volunteer workers in community care settings who support people with HIV. The toolkit provides information to increase knowledge and understanding of the cognitive issues of HIV and their impact on self-care. It helps workers identify and address these issues to support better health outcomes for people with HIV and HAND.

Service providers can use this toolkit as a standalone resource. Although this toolkit is mainly about community care, it may help in other settings, such as residential care.

YouTube: Living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

 

HIVHANDFamilyFriendsToolkit: Living with HIV-Associated Neurocognitive Disorders (HAND): Information for people living with HIV and HAND, their partners, families and friends, Alzheimer’s Australia Vic, 2014

This booklet has been produced by Alzheimer’s Australia Vic for people living with HIV and HAND, and their partners, families and friends. It is part of the Dementia and Chronic Conditions Series: HIV-Associated Neurocognitive Disorders Toolkit, which has been developed primarily for community care workers. The information and recommendations it contains are based on independent research, expert opinion and scientific evidence available at the time of writing. The information was acquired and developed from a variety of sources, including but not limited to collaborations with the Burnet Institute and Living Positive Victoria.

Article: Understanding HIV and dementia by Denise Cummins, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.28-30

AJDC_Dec14Jan15As the lifespan of people with HIV has increased, so too has the risk of developing HIV-associated dementia. Denise Cummins explains the importance of diagnosis, education and effective management to help people with the condition maintain their independence and quality of life.

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

This page includes more resources which may be of use in supporting people with HIV and HAND.

webpageHIVDemWebpage: HIV Associated Dementia, Alzheimer’s Australia Vic

This page describes what HIV associated dementia is, it’s causes, the symptoms and how it is diagnosed and treated.

 

Montessori methods for people with dementia

Montessori methods are now a popular and powerful way to support the lives and capabilities of people with dementia. This post and a previous post offer resources on Montessori activities and how to implement Montessori-based activities.

 2017 update


Website: Purposeful activities for people with dementia: a resource, 

Purposeful Activities for Dementia is a Montessori-based professional development and education resource developed for aged care and dementia care staff and carers.

Purposeful activities for Dementia complements other professional development resources about engaging people with Alzheimer’s disease and other dementias, including the downloadable Relate Motivate Appreciate toolkit. Purposeful activities for dementia was developed by Alzheimer’s Australia VIC for families and aged care staff.

Purposeful Activities for Dementia offers practical ways that carers – including activity support workers, personal care attendants and other aged care professionals – can work together to engage people living with dementia in purposeful activities at home and in social groups.

The videos by Alzheimer’s Australia VIC on this website explore the way in which Montessori techniques can enrich the lives of people living with dementia. Many of the educational activities in the following video are based on this approach.


Article
 Effects of using nursing home residents to serve as group activity leaders: Lessons learned from the RAP project by Michael J. Skrajner, Jessica L. Haberman, Cameron J. Camp, Melanie Tusick, Cristina Frentiu, and Gregg Gorzelle, Dementia: The international journal of social research and practice, Volume 13, Number 2, March 2014

Previous research has demonstrated that persons with early to moderate stage dementia are capable of leading small group activities for persons with more advanced dementia. In this study, we built upon this previous work by training residents in long-term care facilities to fill the role of group activity leaders using a Resident-Assisted Programming (RAP) training regimen. There were two stages to the program. In the first stage, RAP training was provided by researchers. In the second stage, RAP training was provided to residents by activities staff members of long-term care facilities who had been trained by researchers. We examine the effects of RAP implemented by researchers and by activities staff member on long-term care resident with dementia who took part in these RAP activities. We also examined effects produced by two types of small group activities: two Montessori-based activities and an activity which focuses on persons with more advanced dementia, based on the work of Jitka Zgola. Results demonstrate that levels of positive engagement seen in players during RAP (resident-led activities) were typically higher than those observed during standard activities programming led by site staff. In general, Montessori-Based Dementia Programming® produced more constructive engagement than Zgola-based programming (ZBP), though ZBP did increase a positive form of engagement involving observing activities with interest. In addition, RAP implemented by activities staff members produced effects that were, on the whole, similar to those produced when RAP was implemented by researchers. Implications of these findings for providing meaningful social roles for persons with dementia residing in long-term care, and suggestions for further research in this area, are discussed.

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


you say goodbye_webBook: You say goodbye and we say hello : the Montessori method for positive dementia care by Tom and Karen Brenner, ©2012

This book aims to help dementia caregivers connect with their loved ones-in sometimes surprising ways.

Caregiving for a person with dementia or Alzheimer’s disease can be fraught with frustration, but it all can be rewarding in ways that may surprise a caregiver. Getting to those rewarding moments is the subject of You Say Goodbye and We Say Hello, a new book by husband-and-wife team Tom and Karen Brenner.

You Say Goodbye and We Say Hello is an inspiring, eye-opening look into how using The Montessori Method for memory support and creating a positive environment can deepen the connection between caregivers and the people they love. – Sam Gaines, Managing Editor, Preserving Your Memory Magazine


Article: Montessori based dementia programming® by Michael J. Skrajner [et al]  Alzheimer’s Care Quarterly, Vol. 8, Issue 1, January/March 2007, p. 53-63

Montessori-Based Dementia Programming® (MBDP) is a method of creating and presenting activities/interventions. The Myers Research Institute conducted several studies, each of which involved the use of MBDP in a different setting/situation. Staff members from nursing homes, adult day centres, and assisted living facilities were trained to implement MBDP, as were family members and even persons in the early stages of dementia. In addition, a Montessori-based assessment tool is being developed for use in restorative nursing for persons with moderate to advanced dementia. An overview of each study is provided, as are the findings and implications of each study.

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


EvalMontPrincReport: Evaluation of Montessori principles in planned activity groups for people with dementia, Australian Centre for Evidence Based Aged Care, La Trobe University, 2015

In 2014, Alzheimer’s Australia Victoria implemented a pilot project to evaluate the impact of Montessori-based activities on the engagement of people with dementia attending planned activity groups (PAG) at two sites in metropolitan Melbourne, Victoria. Funding for the project was provided by the Commonwealth and Victorian governments under the Home and Community Care (HACC) Program. The overall goal of the project was to improve the engagement of people with dementia in purposeful activity by incorporating Montessori principles in planned activity groups.

Findings show that the application of the Montessori principles to activities statistically improved constructive engagement, pleasure and helping among clients in the two participating planned activity groups. The findings also suggest that the Montessori education may improve staff satisfaction and attitudes to people with dementia.


dementia journalArticle: Montessori programming for persons with dementia in the group setting:an analysis of engagement and affect by Shannon E Jarrott, Tsofit Gozali & Christina M Gigliotti,  Dementia, Vol. 7, no. 1 February 2008, p. 109-125

Implementing meaningful activities for persons with dementia reduces boredom, agitation, and negative affect. Previous research demonstrated that Montessori activities, modified for persons with dementia, facilitate positive engagement and affect. We conducted activities in small parallel group settings to support social interactions and reflect typical staff-to-client ratios in institutional activity settings. The amount and type of engagement and affect were compared during Montessori-based activities and regularly scheduled activities of 10 older adults with dementia at an adult day program. Participants exhibited more constructive engagement and less non-engagement during Montessori-activities compared to regular activities. Affect did not differ between the activity conditions. We conclude with a discussion of research and practice methodology modifications.

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


blog_screen_montessoriBlog: The Montessori Approach for people with dementia, Dementia Resources blog, July 2013

Montessori is a topic close to my heart.  Part of my own schooling was Montessori and my children attend a Montessori school.  For me, what really appeals is the dignity and respect which the students are afforded.  The sense of satisfaction and well-deserved pride they derive from mastering an activity is heart-warming to see.  When I discovered that the Montessori principles were also enriching the lives of people with dementia I was really excited.  It’s such a natural extension of this incredibly flexible, carefully-constructed and intelligent educational philosophy.

This post includes a number of Montessori resources including those of Cameron J. Camp and the popular Relate Motivate Appreciate resource produced by Alzheimer’s Australia VIC.

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.

 

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.

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.

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

 

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.

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

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…”

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

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.

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

Dementia and Culturally and Linguistically Diverse (CALD) Communities

Try to imagine: you’ve spent 50 years of your life in Australia and you are fluent in the language, but increasingly your brain tells you you’re back in the small town you grew up in and you are speaking the first language you learned. Strangely, no one around you can understand and they insist on speaking to you in English, which you don’t understand or speak.

Or this: you’ve lived for many years in Australia but were never particularly fluent in the language of your adopted country. You managed this by relying on the English skills of your children and you were heavily involved with the expatriate community for your social network. Now you’ve been diagnosed with dementia. You don’t believe the doctor and your friends may not think dementia is a real condition, but you have been having trouble with daily tasks that used to be very simple for you. Also, you’ve become lost a few times now in your local neighbourhood…

Dementia is scary, in anyone’s language. For those in our community with dementia who are  not native English speakers and have different perspectives on illness and how support is received, another layer of difficulty may be encountered. The resources featured today focus on culturally and linguistically diverse communities.

Culturally appropriate dementia assessment tools

CALD_websiteCommonly used dementia screening tools may not always be appropriate for those for whom English is a second language. Alzheimer’s Australia has collected information on a range of culturally appropriate dementia assessment tools that can be used with CALD communities. These include the Rowland Universal Dementia Assessment Scale (RUDAS), guidelines developed by National Cross Cultural Dementia Network in collaboration with National Ageing Research Institute (NARI) and culturally sensitive screening tool methodologies.

Note: free hard copies of this test are available from Alzheimer’s Australia Vic library. The kit includes a DVD Guide to Administration and Scoring and a CD of Supplementary Information.

Resource kit: Perceptions of dementia in ethnic communities

Don’t let the ‘vintage’ vibe of this publication put you off, it’s still super-relevant! A resource kit perceptions_dementia_ethnic_communitiesoutlining dementia perceptions in Arabic, Chinese, Croatian, Greek, Italian, Macedonian, Polish, Russian, Serbian, Spanish, Turkish and Vietnamese communities.

Project report: Perceptions of dementia in ethnic communities

perceptions_dementia_proj_reportIn addition to the kit, the Perceptions of dementia in ethnic communities project report provides an overview of some of the key issues that were raised across these communities. This report covers a range of issues which were common across all communities as well as some additional issues that were raised but not included in the resource kit. The information has been compiled following consultation with ethnic and generalist community organisations and community members. Where available, other research has been used to support or reflect different opinions gathered through the community consultations. The report outlines project background, methodology, findings and discussion and conclusion.

 

Help sheets: Dementia information in other languages

Dementia information is available in a number of languages including Arabic, Armenian, Assyrian, Chinese, Croatian, Dutch, Finnish, German, Greek, Hindi, Hungarian, Indonesian, Italian, Japanese, Khmer, Korean, Laotian, Latvian, Macedonian, Malay, Maltese, Polish, Portuguese, Romanian, Russian, Serbian, Spanish, Tagalog, Turkish, Ukrainian and Vietnamese. These can all be downloaded free of charge from our website.

YouTube: It’s not a disgrace…it’s dementia

These videos are available in Spanish, Arabic, Serbian, Ukranian, Cambodian, Croatian, Assyrian, Vietnamese. The version of the video included will play all videos, starting with the Spanish version.

Note: select versions of this video are available from the library as well.

Tip sheets: Dementia risk reduction

your_brain_matters_tips_multilingualDoing what we can to reduce our risk of dementia is important for everyone in the Australian community. For those who would prefer to read about strategies that may reduce dementia risk in a language other than English, Alzheimer’s Australia has produced the Dementia Risk Reduction Bilingual Tip Sheets. The tip sheets are available in the following languages and can be found on our Your Brain Matters website:

Arabic – Assyrian – Chinese – Croation – Dari – Dinka – Dutch – French – German – Greek – Hindi – Indonesian – Italian – Japanese – Korean – Lithuanian – Macedonian – Maltese – Polish – Serbian – Somali – Swahili – Tagalog – Thai – Turkish – Ukrainian – Vietnamese

If you would prefer to talk to someone, you can call the National Dementia Helpline on 1800 100 500. If you need an interpreter you can contact the Helpline through the Telephone Interpreting Service on 131 450.

 

 

 

Dementia in prison populations

ldementiainprison_banner

In Australian media we often hear about the ageing of our population, however it’s unlikely that many of us have considered what this means to our population as a whole, including people currently in prison. Identifying the signs and symptoms of dementia is a challenge new to prison administrators and health care workers and determining the most appropriate, compassionate and ethical means of responding to prisoners with dementia is a growing issue for correctional facilities.

This blog post focuses on the resources about dementia in prison populations.

(Updated May 2017)

 

The Prison Project: Raising awareness of dementia in prisons (2016)

prison_alzsocNatasha Sindano, Project Supporting Officer at Alzheimer’s Society UK explains some thought provoking findings from the ongoing project that was started in 2015.
“If nothing else, I’d like you to remember these three facts: Men aged 50 and over have been the fastest growing prison population for over 10 years. Prisoners’ bodies age faster than the general population…”

 

Old , grey and locked away: CST group work in prison. In The Journal of Dementia Care  Vol 24 No 2 Jan/Feb 2016 p12-14ajdc banner

A unique group is supporting older prisoners serving life sentences to cope with the consequences of dementia. Gemma Williams and Judith Farmer report on their programme of cognitive stimulation therapy in Norwich prison.

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

 

Discussion Paper: Dementia in Prison, Alzheimer’s Australia NSW, March 2014

DementiaInPrisonCoverThe ageing population in Australia’s prisons has grown at a rate faster than that of the general population resulting in the potential for an increase in the number of people with dementia living in a prison setting.

This paper examines the topic, investigating the needs and risk factors for people with dementia in prison and providing a series of recommendations to enhance and optimise their care.

Video: Dementia behind bars, The New York Times

This wonderful short film, outlines the role that prisoners are playing in assisting and caring for, prisoners with dementia in their own prison communities. The person-centered care that these men provide for their fellow prisoners with dementia is touching, and in some cases, is their first actual experience in caring for the needs of someone other than themselves.  Caring for someone with dementia is always an act of bravery and dedication, yet in an environment often inclined to hostility and sudden outbursts the additional risks presented by people with dementia and those caring for them are potentially greater and the stakes, higher.

Article: Life, With Dementia, Pam Belluck, The New York Times

This article is an accompaniment and in many ways, a written description of the video. It is a great companion work and supplement to the video and again illustrates the dilemmas, human stories and impacts of dementia on an often-neglected part of our community.

Research Report: Losing track of time: Dementia and the ageing prison population: treatment challenges and examples of good practice, Adam Moll, Mental Health Foundation UK

losing_track_time_webDementia presents a looming problem for prisons responsible for a rapidly growing population of older people, yet to date it remains largely overlooked. The last decade has seen increasing academic interest in the impact of this demographic shift on a criminal justice systems designed to house younger people, however the issue of dementia has attracted little attention.

The aims of this report are to scope existing research on treating and managing male offenders with cognitive impairment to identify and share examples of good practice employed by a handful of prisons around the globe. Each establishment identified was invited to complete a comprehensive survey detailing their policies and provisions in the following areas:
• Screening, diagnosing and referral processes
• Specialist staff training
• Collaboration with specialist external agencies and voluntary sector organisations
• Prisoner carer or ‘buddy’ programmes
• Alternative activities and services for the cognitively impaired
• Older prisoner forums and centres
• Desired additional resources to better manage prisoners with dementia

Article: Behind Bars: the challenge of an ageing prison population, James Baldwin and Jasmine Leete, Australian Journal of Dementia Care, August/September 2012

AJDC_prison_articleWith the number of older people with dementia in correctional facilities surging, complex ethical, legal and medical issues have arisen. James Baldwin and Jasmine Leete discuss the challenges and solutions for people with dementia in Australian prisons.

Article: Dementia in prison: ethical and legal implications, S Fazel, J McMillan, I O’Donnell, Journal of Medical Ethics, 2001

An older article, but worthy of consideration with regard to this topic. Here’s the article abstract:

“As the number of elderly prisoners increases in the UK and other Western countries, there will be individuals who develop dementia whilst in custody. We present two case vignettes of men with dementia in English prisons, and explore some of the ethical implications that their continuing detention raises. We find little to support their detention in the various purposes of prison put forward by legal philosophers and penologists, and conclude by raising some of the possible implications of The Human Rights Act 1998.”