Recent dementia publications

This post identifies some recent publications on dementia. These books are all available from the library – if you can’t make it to our Hawthorn location we encourage you to call us on 03 9815 7800 and we can organise to send books to you. Remember, we do need you to be an Alzheimer’s Australia Vic member to provide this service.

Book: Where the Light Gets in : Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley, Foreword by Michael J Fox, 2016

where the light gets inMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. “Where the Light Gets In” tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, “Where the Light Gets In” is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.”

DVD: Looks like Laury, Sounds like Laury, Pamela Hogan & Connie Shulman, 2015

looks like lauryWhat would you do if you started to disappear? At the age of 45, our friend Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.

The film came about when Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!” Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns. Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

We started filming during a hopeful period, with no idea of what lay ahead.

Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

Book: A caregiver’s guide to dementia : using activities and other strategies to prevent, reduce and manage behavioral symptoms, Laura N. Gitlin, Catherine Verrier Piersol, 2014

a caregiver's guide“Mom has nothing to do—I’m concerned about her quality of life.”
“My husband gets agitated when I need to leave the house—I don’t know what to do.”
“My father keeps asking the same questions over and over.”

These are some of the common challenges encountered by individuals and families who are caring for a parent, spouse or close relative with dementia. This easy-to-use, practical guide is designed to help at-home caregivers navigate these daily challenges. Although there is no cure for dementia or its many behavioral symptoms, there are clear and proven strategies that can be used to enhance the quality of life for persons with dementia—strategies that can make a real difference for their families.
A Caregiver’s Guide to Dementia explores the use of activities and other techniques to prevent, reduce and manage the behavioral symptoms of dementia. Separate sections cover daily activities, effective communication, home safety and difficult behaviors, with explicit strategies to handle] agitation, repetitive questions, acting-out, wandering, restlessness, hoarding, resistance to care, incontinence, destructiveness, sexually and socially inappropriate acts at home and in public, aggressiveness, depression. Worksheets are provided to help caregivers customize the strategies that work best for them.
The strategies featured in this guide have been used by the authors in their research and reflect approaches and techniques that families have found to be most helpful.

Book: Dementia: pathways to hope : spiritual insights and practical advice, Louise Morse, 2015

dementia pathways to hopeTo be diagnosed with dementia is “like being blindfolded and let loose in a maze”. There is no clear treatment to follow, because each case is unique. But once thickets of misunderstanding and misinformation are brushed aside, there are pathways to hope.

“Secular models of support don’t adequately reflect Christian values of compassion, love and service,” explains Louise Morse. “Neither do they describe the power of spiritual support. This is key to the wellbeing of the caregiver, as well as the person with dementia.”

This book is packed with examples of what works, as well as practical advice and accessible medical information.

Louise Morse is a cognitive behavioural therapist and works with a national charity whose clients include people with dementia. Her MA dissertation, based on hundreds of interviews, examined the effects on families of caring for a loved one with dementia.

Fiction: Unbecoming, Jenny Downham, 2015

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

YouTube: Living with Dementia, Alzheimer’s Australia, 2016

This is also available as a DVD from our library.

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.

 

Films about dementia

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

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

Still mine, 2012still mine

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

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

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

fireflyFirefly dreams, 2004

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

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

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

finding-nemo-dvdFinding Nemo, 2003

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

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

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

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

 

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

Dementia, Down syndrome and learning disabilities

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


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

intellectual disability and deme

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

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

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

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


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

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

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

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


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

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


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

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


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

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

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

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


Film: What is happening to my friend Mary?

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

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


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

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


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

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


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

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


Interested in an article?

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

 

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

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.”

 

 

 

Recent additions to our collection

Hot pies! Cold drinks! Lovely new resources!

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

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

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

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

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

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

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

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

Teen fiction book: Back to Blackbrick, Sarah Moore Fitzgerald

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

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

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

Fiction: Green Vanilla Tea, Marie Williams

green vanilla tea

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

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

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

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

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

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

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

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

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

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

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

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

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

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