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.

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.