Lewy body disease (Lewy body dementia)

You may already know that dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Lewy body disease is one of the diseases that causes dementia.

This post provides a set of resources specifically about Lewy body disease.

lewy body dis alzaust webpageWebsite: Lewy body disease, Alzheimer’s Australia website

This webpage gives a succinct, plain-English overview of Lewy body disease. It is useful as an introductory document and as a resource to share with family and friends who wish to learn more.

YouTube: Let’s Talk About Lewy Body Disease, Alzheimer’s Australia Vic, 2012

This series of online videos feature Robin Groves, who was diagnosed with Lewy body disease in 2006 and his wife Lis. They discuss how Lewy body disease has affected their lives, including some of the challenges they have faced. The resource is divided into three chapters.

Chapter 1: Robin and Lis

Robin and Lis talk frankly about the condition, and about the changing behaviours Robin experiences.

Chapter 2: A typical case?

Discusses signs and symptoms of the illness.

Chapter 3: Visiting the doctor

Identifies strategies to ensure the doctor or medical professional gets the information they need to provide appropriate ongoing care.

emerging from the shadowsBook:  Emerging from the shadows by Helga Rohra (2016)

‘What’s happening to me?’ Successful translator and linguist Helga Rohra was understandably good with words – that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 – but she hasn’t let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

teepa snow_lewy body dementia_webDVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)

Learn:
– about common LBD symptoms
– how to get a good and complete diagnosis
– about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
– how to adapt your caregiving skills to the needs of a person with LBD
– how to utilize visual and verbal cues to increase understanding and cooperation
– about hands-on skills for LBD
Includes practical information on mid to late stage dementia, sleep problems, hallucinations, practical tips on daily care, activities of daily living, medication issues , and how to talk to doctors about medications – it is a very hands on approach . It also describes how Lewy bodies are more prevalent than previously thought.

a carers guide to Lewy body dementiaBook: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth  (2010)

Although Lewy Body Dementia is the second leading cause of degenerative dementia in the elderly, it is not well known or understood and is often confused with Alzheimer’ Disease or Parkinson’s. A Caregivers Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy Body Dementia really is.
A Caregivers Guide to Lewy Body Dementia is written in everyday language, and is filled with personal examples that connect to the readers’ own experiences. It includes quick fact and caregiving tips for easy reference, a comprehensive resource guide, and a glossary of terms and acronyms.

This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.

Dignifying Dementia a caregivers struggleBook: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)

A powerful, beautifully-written account of the author’s nine-year journey to care for her husband, who has Lewy Body Dementia. Elizabeth Tierney’s book is moving, harrowing, fascinating and instructive. It is also the story of one woman’s determination to honor her husband’s humanity and how she succeeded against all odds – a triumphant love story.

Helpsheets: Lewy body disease helpsheets, Alzheimer’s Australia

Alzheimer’s Australia has produced a collection of helpsheets about Lewy body disease, covering different aspects of this disease and targeted to different audiences.

LBDA websiteWebsite: Lewy Body Dementia Association, Inc.

This American association is specifically devoted to Lewy Body Dementia and may include useful information for people with Lewy body dementia, their families and carers.

living with lewy body dementiaBook: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings  (2014)

If you’re struggling to care for someone with Lewy Body Dementia, or any Parkinson related disease, and you are looking for some professional help in dealing with the many difficult or awkward situations that arise, then this book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.

The book is informative: Certainly it provides “meat and potatoes” suggestions for any caregiver, but it is much more than that. Anyone choosing to read this book will have a better understanding of the role of a caregiver, and how we have many positive moments sandwiched among the more challenging. It is a faith-based self help book. I expected God to show up every day and thankfully He always did. (the author)

Graphic Novel: Dad’s Not All There Any More : A Comic About Dementia by Alex Demetris (2015)

dad's not all there anymor“Louie what?” John’s dad, Pete, was already diagnosed with Parkinson’s disease when he began to have some very strange experiences, not least of which was the little red-haired girl who followed him around the house. Eventually diagnosed with Lewy Body Dementia (LBD), his hallucinations and other symptoms became more frequent and intense, and Pete moved into a care home. Based on his family’s experience of his father’s LBD, Alex Demetris’ comic explores with tenderness and humour one of the most common yet often unheard of types of dementia; what it is, its symptoms, living in a care home and the impact on people living with the condition and their families.

activities for the family caregiver LBDBook: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)

From the groundbreaking series written specifically for family caregivers, “Activities for the Family Caregiver – Lewy Body Dementia: How to Engage / How to Live” offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living tips, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure.

dementia with lewy bodiesBook: Dementia with Lewy bodies and Parkinson’s disease dementia  /  edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu  (2006)

Filling a noticeable gap in the market for a new text solely focused on Dementia with Lewy Bodies, this book discusses cutting-edge topics covering the condition from diagnosis to management, as well as what is known about the neurobiological changes involved.   With huge progress having been made over the last decade in terms of the disorder’s recognition as a common cause of cognitive impairment, its clinical features, its underlying neurobiology, investigative changes, and management, this is undoubtedly a much-needed work in what is an important and rapidly progressing field.  Written by leading figures in dementia research, this clearly presented, modern text is equally accessible to clinicians such as old-age psychiatrists, geriatricians and neurologists, as well as allied health professionals with a particular interest in the area.

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.

Intimacy, sexuality and dementia

Discussing intimacy and sexuality can be confronting.  Yet intimacy and the desire for close physical contact continue to be important, even in changing circumstances such as those experienced by people with dementia and their partners – who may also be their carers.

Today’s post considers the topic of intimacy, sexuality and dementia.

ACI_JunJul2015Article: Love never dies, Maree McCabe interviewed by Dallas Bastian, Aged Care Insite, June-July 2015

Sex and intimacy often remain a part of the lives of people living with dementia and their partners. This interview discusses the taboos, assumptions and stereotypes around older people and sexual intimacy which will be challenged at an upcoming conference about Sex, Relationships and Intimacy.

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

Conference: Let’s Talk About Sex Conference 2015: Relationships and Intimacy As We Ageltas2015websitelogo

The inaugural Let’s Talk About Sex Conference aims to challenge many of the assumptions, taboos and stereotypes when it comes to older people and sexual intimacy. The failure to acknowledge sexuality and ageing has left many older people deprived of their right to a satisfying and fulfilling sex life. In aged care planning, no provision is generally given for clients to be intimate with their partners and it is often regarded as inappropriate and unacceptable.

On behalf of Alzheimer’s Australia Vic and our co-hosts COTA Victoria, we wish to invite you to join us for the Let’s Talk About Sex Conference taking place on the 8-9 September 2015 at the Pullman on the Park, Melbourne, Australia.

 

On the off-chance you can’t make it to the conference, or even if you can, here’s some other resources you may want to consider which offer different perspectives on intimacy and sexuality as people age and specifically for people with dementia and their partners.

sexuality longterm care0001Book: Sexuality & long-term care : understanding and supporting the needs of older adults by Gayle Appel Doll, 2012

Responding to the sexual desires of older adults in residential environments is widely recognized as a challenge by care staff, administrators, and family members. This new resource meets the challenge head on, exploring the issues surrounding sexual expression from all perspectives. It addresses the question of how, in an increasingly person-centered care culture, long-term care facilities balance individual resident rights against the needs and concerns of the community as a whole.

Informative, engaging, and instructive, this helpful resource recognizes sexual expression as a significant part of personality, explains why it is important to honor longings for intimacy, and provides strategies for teaching staff how to effectively, respectfully, and compassionately acknowledge those needs. Case studies illustrate potential issues surrounding resident sexuality and provide ample opportunities for healthy discussion about how staff handled the situation, what was done well and what was not, and how to improve the outcomes.

Long-term care administrators, nurses, social workers, counselors, direct care staff, ombudsmen, and others devoted to enhancing the quality of life in nursing homes will learn how to address and prevent inappropriate behaviours, what normal sexual expression is in old age and how dementia affects it, how to accommodate the needs of LGBT residents, ways to protect residents from sexually transmitted diseases, and much more.

Valuable tools for staff training are included that encourage staff and managers to explore attitudes and biases about the sexuality of older adults and help organizations develop policies related to this fundamental need.

Fully grounded in research, Sexuality and Long-Term Care will enlighten anyone who believes sexuality vanishes with age and offers many useful solutions for navigating this controversial issue.

JDC_mayjune14Article: JDC asks…What issues do care home staff face when supporting a person living with dementia who is in an intimate relationship? The Journal of Dementia Care 22(3), 2014, p.8-9

Recently in a care home, I suggested buying more sofas than chairs for lounges, to encourage more closeness and companionship between people. The first reaction of the manager was that this might be a problem as it was “likely to lead to more safeguarding concerns”…

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

sex intimacy and aged careBook: Sex, Intimacy and Aged Care by Barbara Sherman, 1998

Sexuality in older people has often been a vexed issue, provoking strong emotional associations, embarrassment and silence. Behaviour considered ‘inappropriate’ in those who belong to this age group, however, can be more easily understood if their experiences and needs are considered. In clear, accessible language, Barbara Sherman explores the issues relevant to sexuality and old age, and challenges us to examine our own attitudes. Stories of the experiences of caregivers, families and people affected by dementia illustrate the difficulties encountered by sexual partners, as well as the complexity of the situations confronting professional careworkers. Sex, Intimacy and Aged Care offers a sympathetic perspective as well as constructive ideas for dealing with older people’s feelings, desires and behaviour, and explodes the myths surrounding a normal part of life.

Film: The heart has no wrinkles by Health Media, 1988

The heart has no wrinkles is a fictional account of a relationship formed by two people in an aged care setting and the reaction of staff to this relationship. The film examines the reactions of staff, the couple and includes a meeting between the male character and his doctor where intimacy and physical matters are discussed. Among the staff members in the film, a range of attitudes are shown and the importance of considering the intimate needs and needs for companionship that aged care facility residents still have is emphasised.

JGN_nov2013Article: Influence of Cognitive Decline on Sexuality in Individuals with Dementia and Their Caregivers by Karen M. Robinson and Samantha J. Davis, Journal of Gerontological Nursing November 2013 – Volume 39 · Issue 11: 30-36

Sexuality is an important element of human life that is strongly influenced by the social environment. People assess themselves and relate their roles to one another in terms of sexuality. More attention must be directed at the sexual needs of individuals with dementia and their caregivers. A myth believed by society is that individuals with dementia are asexual and that sexual desires and needs for connection will wane over time; whereas in reality many couples living with dementia remain sexually active as the disease progresses. The sexual needs of individuals with dementia are similar to those of younger people but might vary in occurrence and expression. An increase or decline in sexual desire is dependent on the level of cognitive impairment. Sexuality in individuals with dementia may be expressed as inappropriate or hypersexual behavior due to disinhibition and forgetting social cues. Although hypersexuality is often less common than other challenging behaviors that can occur in dementia, it affects both the health of the individual with dementia and the health of his or her caregiver.

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

AD and marriageBook: Alzheimer’s Disease and Marriage by Lore K. Wright, 1993

What impact does Alzheimer’s disease have on the martial relationship? What can a helping professional do to help the caregiving spouse? Carefully and thoughtfully documented, Alzheimer’s Disease and Marriage peers deeply into caregiving research and personal data on individual relationships to uncover the profound effects of Alzheimer’s disease on marriage. To date, existing research only dimly illuminates patterns of impact, response, and influence of this affliction on marriage; Alzheimer’s Disease and Marriage now fills the void. Distinguished author, Lore K. Wright, presents her findings from the perspective of both the caregiver and the Alzheimer’s disease afflicted spouse resulting in a highly practical tool professionals can use for optimal intervention and assessment. She shows how Alzheimer’s disease invades various dimensions of marriage and how spouses retain or lose awareness of each other. Among the marital dimensions explored are day-to-day aspects of a relationship such as household tasks, tension, companionship, affection and sexuality, and commitment. For each of these dimensions, clinical assessment strategies and guidelines for interventions are described. Details on how to approach and interact with an afflicted spouse are also provided.

more than a thousand tomorrowsFilm: More than a thousand tomorrows : Intimacy sexuality and Alzheimer’s by James Vanden Bosch, 2003

One of the rarely discussed effects of Alzheimer’s disease is its impact on intimacy and sexuality. In the award winning video, A Thousand Tomorrows, several spouses of people with Alzheimer’s spoke candidly about the blurring of their roles, about changes in behavior that affect intimacy, and about the whole range of complicated emotions surrounding their wife’s or husband’s illness. The film set a tone of candor and respect that was extremely helpful in confronting the difficulties which both family members and professionals can have in discussing these issues.

Of particular interest in this program were the interviews with Everett and Betty Jordan. Betty, who was in the fairly early stages of the disease, was able to share in the discussion of how it was affecting her as well as her husband. This new video revisits Everett and Betty at one and six years later, to follow the changes in their lives as Betty’s Alzheimer’s gradually worsened, and she eventually needed to be placed in a nursing home. Central to the video is Everett’s candid discussion of his feelings and decisions regarding the changes in his ongoing intimate relationship with Betty during those years, and how he has coped.

Abstract from Fanlight Productions, http://www.fanlight.com/catalog/films/407_mttt.php accessed 10 July 2015.

QDC Understanding dementia care and sexualityPublication: Quality dementia care standards : understanding dementia care and sexuality in residential facilities, 2010

This publication asks the questions that all those caring for with people with dementia need to reflect on in developing strategies that result in individualised responses to the different needs of individuals. The booklet discusses what sexuality is, the behaviours that may be present that can be perceived as sexual in nature, the human rights and responsibilities of people with dementia, duty of care issues, understanding family relationships, approaches to risk management and developing policies on sexual behaviour. Each section has issues for consideration and there are some case studies which draw out particular issues. For the purposes of this paper carers refers to family carers; employed carers are those who work for organisations involved in aged care or disability services.

dementia journalArticle: Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women by Sue Westwood,

There is a growing appreciation of the significance of socio-cultural context for the experiences of an individual living with dementia. There is, too, an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men. However, little attention has been given as yet to the experiences of lesbian and bisexual women living with dementia. This article addresses this gap in knowledge, exploring the significance of the intersection of ageing, gender and sexuality for lesbian and bisexual women with dementia. It suggests that stigma and social marginalisation associated with dementia and with ageing, gender and sexuality intersect to compound the social exclusion of lesbians and bisexual women. This has implications for early diagnosis and treatment. Moreover, community care policy, which is predicated on heterosexist norms fails to take into account older lesbians and bisexual women’s support networks and so is less likely to be attuned to their needs. Residential care provision is perceived by older lesbians and bisexual women as being heteronormative at best and homophobic at worst. Services which do not recognise, validate and support their identities will compound their anxiety, confusion and distress. This may be contrary to Equality and Human Rights legislation and UK social policies. This paper draws upon, and analyses, extracts from a range of authorship, synthesising the material to present novel insights into the significance of gender and sexuality for the experience of dementia and dementia care.

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

dem and sexuality roseBook: Dementia and sexuality : the rose that never wilts by Elaine White ; foreword by Professor Mary Marshall, 2011

This book offers understanding and a positive attitude to care staff and relatives about the sometimes challenging sexual behaviour of people with dementia. It describes the possible causes and shows that, armed with this knowledge, a satisfactory outcome for all can often be achieved.
The author, Elaine White, has been consulted about sexual behaviour for many years, and is therefore able to include for the benefit of readers many true stories from her work.
Dementia and sexuality makes the powerful point that how each of us perceives and responds to challenging sexual behaviour is very important. It asks readers to think deeply about their own attitudes as well as the behaviour of people with dementia.

gen silent DVDFilm: Gen silent : a documentary film about LGBT aging  written and directed by Stu Maddux, [2011]

Gay, Lesbian, Bisexual and Transgender older people who fought the first battles for equality now face so much fear of discrimination, bullying and abuse in the care setting that many are hiding their lives to survive. Thousands are dying earlier than their straight counterparts because they are isolated and afraid to ask for help. But a growing number of people are fighting to keep their elders from being silenced.
Gen Silent was filmed in the Boston area over a one year period. During that time, director Stu Maddux followed six LGBT seniors through their decision to either stay open about their sexuality or hide it so that they can survive in the long-term health care system. In the documentary a gay man named Lawrence Johnson searches for a nursing home where he and his partner can be open about their relationship while still receiving quality care. It also follows a transgender senior by the name of KrysAnne. She searches for people to care for her because she is estranged from her family. The story of an LGBT couple named Sheri and Lois is told, including how they spent their lives fighting for LGBT rights. While Sheri states that she refuses to hide her sexuality, Lois states that she will if that is what it would take to protect her in the health care system. Mel and his partner are the final couple followed in the documentary. Mel’s partner gets sick and he finds care from a welcoming agency where he feels comfortable and safe to speak openly for the first time about his sexuality and their thirty-nine year relationship together.

dementia journalArticle: A kiss is still a kiss? The construction of sexuality in dementia care by Richard Ward, Antony Andreas Vass, Neeru Aggarwal, Cydonie Garfield and Beau Cybyk, Dementia February 2005 vol.4 no.1, p.49-72.

This article explores descriptions of the sexuality and sexual expression of people with dementia residing in care. It is argued that accounts offered by care workers are mediated by their own perspectives and interests. Data from the study, alongside a review of existing research findings, suggest that gender has a crucial influence upon the interpretation and response to sexual expression in care settings. Interviews with care staff revealed that such expression is often deemed problematic. Factors maintaining the invisibility of the homosexual population in care are also discussed. It is concluded that there exists a need for greater consultation with residents regarding sexuality and for an exploration of the range of sexualities in care.

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

Publication: Sexuality & dementia : a guide for all staff working with people with dementia  by Carole Archibald. Edited by Alan Chapman, 2005

This study guide sets out to challenge preconceived attitudes and to provide suggestions about how to respond and support people with dementia in those sexual situations that are confronting for practitioners.

ethics of sex and alzheimersBook: The ethics of sex and Alzheimer’s by John Portmann, 2014

A growing epidemic, Alzheimer’s punishes not only its victims but also those married to them. This book analyzes how Alzheimer’s is quietly transforming the way we think about love today. Without meaning to become rebels, many people who find themselves “married to Alzheimer’s” deflate the predominant notion of a conventional marriage. By falling in love again before their ill spouse dies, those married to Alzheimer’s come into conflict with central values of Western civilization – personal, sexual, familial, religious, and political. Those who wait sadly for a spouse’s death must sometimes wonder if the show of fidelity is necessary and whom it helps.

Most books on Alzheimer’s focus on those who have it, as opposed to those who care for someone with it. This book offers a powerful and searching meditation on the extent to which someone married to Alzheimer’s should be expected to suffer loneliness. The diagnosis of dementia should not amount to a prohibition of sexual activity for both spouses. Portmann encourages readers to risk honesty in assessing the moral dilemma, using high-profile cases such as Nancy Reagan and Justice Sandra Day O’Connor to illustrate the enormity of the problem. Ideal for classes considering the ethics of aging and sexuality.

sexuality-dementiaPublication: Sexualities and dementia : education resource for health professionals  developed by Dr Cindy Jones written in collaboration between Dr Cindy Jones and Professor Wendy Moyle, 2013

Sexualities and Dementia Education Resource – Caring for people with dementia who express their sexualities continues to be a major challenge for health professionals. This education resource, targeted at health professionals, will increase understanding of sexualities for people living with dementia

Sexualities and Dementia Facilitators Guide – This guide will assist facilitators to work through the Sexualities and Dementia Education Resource and provides workshop information for which a ‘train the trainer’ education style can be applied.

Sexualities and Dementia Facilitators Presentation  – These PowerPoint slides are to be used in conjunction with the Sexualities and Dementia Facilitators Guide.

To have and to hold web articleArticle: To Have and to Hold: Consent and Intimacy for People With Alzheimer’s by Jessica Pishko (2015)

There’s a strong cultural distaste for thinking about the elderly engaged in sexual activity, but we must if we’re going to protect an aging population.

Animal assisted therapy for people with dementia

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

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

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

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

Note: if you’re interested in this article please use this form to request it.

 

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

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

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

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

 

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

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

Note: if you’re interested in this article please use this form to request it.

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

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

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

 

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

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

Note: if you’re interested in this article please use this form to request it.

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

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

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Doll Therapy (Child Representational Therapy)

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

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

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

Abstract

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

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

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

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

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.

LGBTI communities, ageing and dementia

Everyone’s getting older and many people in our diverse Australian community are being affected by dementia. Yet while much written is written about many aspects of dementia and it’s impact on relationships and sexuality there is less information on the impact of dementia on people who are lesbian, gay, bisexual, transexual and intersex (LGBTI).

So what’s it like to be a LGBTI person with dementia? Or the carer and partner? Or an aged-care worker?

This post focuses on issues experienced by LGBTI people with dementia, their carers and how different aged-care services can better deliver to these groups.

Book: Oldeolder_peopler People: issues and innovations in care, 4th edition Rhonda Nay, Sally Garratt, Deirdre Fetherstonhaugh

This book compiles a range of opinions and commentary from leading international and Australian experts on contemporary issues around the care of older people. It includes perspectives on LGBTI experiences in the aged care system and in aged care homes. Usefully, recommendations for inclusiveness are made and a ‘vignette’ based on the experience of an older same-sex couple with a registered nurse. It’s a useful and informative perspective.

If you’d like to borrow this book, contact us for more information.

 Article: The Invisible Elderly: Lesbian, Gay, Bisexual, and Transgender Older Adults, Rita A. Jablonski et al., Journal of Gerontological Nursing, 39(11), p46-52

the_invisible_elderlyLGBT older adults face unique issues in terms of LTC living arrangements, staff discrimination, HIV concerns, and physical examination anxiety.  More than 2 million older adults identify as lesbian, gay, bisexual, or transgender (LGBT). The purpose of this article is to present an overview of the physical and mental health needs of LGBT older adults to sensitize nurses to the specific needs of this group. Nurses are in a prominent position to create health care environments that will meet the needs of this invisible, and often misunderstood, group of people.

Note: if you are interested in this article, please contact us and we will arrange to send it through to you

Report: National Lesbian, Gay, Bisexual, Transgender and Intersex Ageing and Aged Care strategy, Department of Health and Ageing, Australian Government

This report national_LGBTI_strategyhighlights the challenges many LGBTI people have faced, examines what the aged care needs of LGBTI people are, and how aged services can be more inclusive of these needs. It gives a good introduction to the issues LGBTI people face in an aged care service context.

 Article:  Breaking the silence: dementia and the LGBTI community, Australian Journal of Dementia Care, 2(2) April/May 2013

Marie Alford, Jo Harrison and James Baldwin look at some of the issues facing lesbian, gay, bisexual, transgender and intersex (LGBTI) people with dementia and their carers, and Alzheimer’s Australia’s innovative approach to addressing these concerns.

Note: if you are interested in this article, please contact us and we will arrange to send it through to you

Report: Dementia, Lesbians and Gay Men, Heather Birch, Alzheimer’s Australia Paper 15, 2009

From the introductory text of this report:

“The focus of this paper is on lesbian and gay seniors, including their same-sex partners. Not all people with dementia are seniors; however younger lesbians and gay men living with dementia may have a number of similar concerns and needs to those of lesbian and gay seniors. This paper also includes information about the needs of younger lesbians and gay men who are supporting a heterosexual family member living with dementia.

Some issues and concerns identified in this paper are shared by transgender people, as well as additional specific issues such as the impact of medical interventions on ageing, including surgical changes and hormone treatments over a long period of time. This paper encompasses the needs of those members of the transgender community to the extent to which they identify themselves as gay or lesbian, but does not address the specific needs of transgender people.”

Guide: Sexuality & Dementia: A guide for all staff working with people with dementia, The Dementia Services Development Centre, University of Stirling

From the introductory text of this guide:

“The Convention of Human Rights and the Adults with Incapacity Legislation (AWI (Scotland) 2000) enshrines principles of maintaining individual freedom and non-discriminatory responses for all people. These principles apply equally to the person with dementia, yet all too often, the individual is treated with a child-like response for behaviour that does not fit with what is considered ‘acceptable’. How the individuals express their sexuality, whether they be heterosexual, gay, lesbian, transgender or bisexual requires that we respond and support in ways that maintain their sense of wellbeing.”

The guide includes specific information for staff working with people who are gay or lesbian to help educate and ensure high-quality care for all.

Note: available for loan at Alzheimer’s Australia Vic library, contact us here to request this guide

Website: Matrix Guild Victoria, Publications on how Aged Care Services can be more LGBT-friendly

matrix_guild_websiteThis website has 4 research reports which detail the experiences of LGBT people in aged care and include detailed recommendations and strategies to make aged care more LGBT inclusive.

Guide: Making your service intersex-friendly, Organisation Intersex International

This guide helpintersex_brochures to explain who are intersex people and how services can better include them.