LGBT+ communities and dementia

For lesbian, gay, bisexual and transgender + (LGBT+) people, living with dementia can be additionally stressful. Not only are LGBT+ people less likely to have family members and children who can support them as they deal with the disability, they are also more likely to live on their own and be single than heterosexual people. Even with a ‘family of choice’, LGBT+ people often have an increased need to use social care services for support and help as their disease progresses. Many fear that mainstream care services will not be willing or are not able to understand how to meet their needs.

LGBT+ people may not feel safe to ‘come out’ to new people such as staff and be fearful of rejection. They may worry that they will be isolated from others in a care home and dread that they may experience discrimination or abuse from staff or other residents. In the past, they may have experienced aggression or rejection from others because of their sexuality or gender identity. LGBT+ people may fear ‘being outed’ and worry that, when their dementia develops to a greater extent, their privacy will be exposed or that staff and residents will not understand their personal history.  LGBT+ people with dementia have specific health and care needs along with the usual care and support issues as everyone else as they age. The need for a person-centered approach among staff and visitors is paramount.

Examples of good practice are limited (3) but a rights-based approach which regards dementia as a disability is a helpful starting point. Involving LGBT+ people in shaping policies and practices on dementia care and taking a partnership approach between health, social care and the voluntary sector are all important in meeting the needs and hopes of LGBT people.

• Footnotes Open

  1. Personalisation briefing: Working with lesbian, gay, bisexual and transgender people, SCIE 2010
  2. LGBT+ Health Partnership (2015) Adult Social Care Outcome Framework LGBT+ Companion Document
  3. Dementia care and LGBT+ communities: a good practice paper April 2016.

• Further reading Open

  Dementia Equity and Rights
  June 2016. Race Equality Foundation
  This publication looks across all the protected characteristics in respect of dementia. It flags up how access and provision of services must take into account the needs of particular groups.

  Dementia care and LGBT+ communities: A good practice paper
  National Care Forum, April 2016
  The 2016 report was developed as a result of roundtable discussions held by the National LGBT+ Partnership with the National Care Forum, Sue Ryder and the Voluntary Organisations Disability Group – the organisations collaborate under the Department of Health Strategic Partner Programme.
  The aim was to consider the needs of LGBT+ people with dementia and how the social care workforce could provide more appropriate support. This followed from the original report written after the roundtable:

  The dementia challenge for LGBT+ communities
  National Care Forum, December 2014

  ‘Over the rainbow’  Lesbian, gay, bisexual and trans people and dementia project: summary report.   This report on an advocacy project includes the voices of LGBT people with dementia themselves.
  Elizabeth Peel & Sam McDaid
  University of Worcester, February 2015

  Providing quality care to LGBT+ clients with dementia in Suffolk: a guide for practitioners, December 2012
  Suffolk Lesbian, Gay, Bisexual and Transgender Network (UK)
  A practical guide out of the UK for health care providers working with dementia patients to become aware of clients' sexual orientation or gender identity and how to address the specific needs of these clients.

  Lesbian, gay, bisexual and trans* individuals living with dementia: concepts, practice and rights
  Taylor and Francis, 2016  Edited by Sue Westwood, Elizabeth Price
  Multi-disciplinary and international in scope, it includes authors from the UK, USA, Canada and Australia and from a range of fields, including sociology, social work, psychology, health care and socio-legal studies. Taking an intersectional approach – i.e. considering the plurality of experiences and the multiple, interacting relational positions of everyday life – LGBT+ Individuals Living with Dementia addresses topics relating to concepts, practice and rights.
  Sue Westwood University of Oxford profile

  Alzheimer’s Society
  Factsheet: Supporting lesbian, gay and bisexual people with dementia (PDF)
  Download a PDF of Supporting lesbian, gay and bisexual people with dementia
  
  At a glance 42: Personalisation briefing: Working with lesbian, gay, bisexual and transgender people
  SCIE, April 2011

  Research

  The needs of lesbian, gay, bisexual and trans (LGBT+) people who are affected by dementia: a comprehensive scoping review
  31st International Conference of Alzheimer’s Disease International, 21–24 April, Budapest, Hungary, 2016
  Joanna Semlyen; Joanne Brooke, Elizabeth Peel
  It is known that this population not only delay in accessing health care but also experience heteronormative services. They conclude that the research evidence-base is very small, and the inclusion of the perspectives of LGBT+ people living with dementia themselves is almost entirely absent.
  Contact details: Dr Joanna Semlyen https://uk.linkedin.com/in/joanna-semlyen-68084182,
  Prof Elizabeth Peel twitter e.peel@worc.ac.uk twitter @profpeel

  How do lesbian and gay people experience dementia?
  James McParland; Paul M. Camic
  Dementia, 2016
  The subjective experience of dementia for lesbian and gay individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population. Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. Findings indicated areas of improvement for dementia services, including training in inclusive practice.

  Out of the closet, into a difficult place in later life
  Allison O’Kelly, William Fullick, Giles Richards
  Journal of Dementia Care, 23(23), 2015, pp.22–24.
  Drawing on the story and experiences of Eve, this article demonstrates the particular difficulties and ethical predicaments faced by the lesbian, gay, bisexual and transgender (LGBT+) community and professions caring for transgender people with dementia.

  Working with lesbian and gay people with dementia
  Jenny MacKenzie
  Journal of Dementia Care, 17(6), 2009, pp.17–19
  This article aims to put the contemporary lives of lesbian and gay people into context by examining population profiles and reviewing recent policy and legislation. It also looks at the history behind gay and lesbian culture. Among the key messages for practitioners are: recognise the importance of alternative family networks; look out for anticipated discrimination; rethink assumptions of heterosexuality; and, acknowledge that sexual identity means more than sexual expression.

  The forgotten: dementia and the aging LGBT+ community
  J. McGovern
  Journal of Gerontological Social Work, 57(8), 2014, pp.845–57
  This article reviews the current state of knowledge on the experience of dementia for LGBT+ older adults, and suggests areas for further research. In addition, it aims to promote social work's engagement with related disciplines and global dementia care.

  Overall view of need for research evidence
  Larger scale research projects are needed in order to fully understand the perspectives of, and nuances in, these especially vulnerable communities. Without the research evidence-base to inform improvements to dementia care for LGBT+ people there is the risk that increased visibility will not result in better care.

  ‘The same, yet different’ : a review of the evidence of the needs of older lesbian, gay, bisexual and transgender (LGBT+) people and access to health and social care services
  Edinburgh Voluntary Organisation’s Council, Evaluation Support Scotland, 2015
  This review looks at selected evidence sources and highlights key issues for older lesbian, gay and bisexual and transgender people in accessing health and social care support. The review finds that some older LGBT people face considerable challenges which affect their ability to make full and appropriate use of mainstream services. Difficulties highlighted include bullying or becoming ostracised by existing service users; discriminatory behaviour by staff; and staff not receiving sufficient support to tackle discriminatory behaviour. Whilst older LGBT+ people share many of the same concerns as non-LGBT+ people, the review also highlights additional challenges they face. These include hate crimes, the pressure on older LGBT+ people to deny their sexual orientation and/or gender identity and additional issues for those with dementia or those needing personal care. An evidence matrix is included which references the sources of evidence with a brief summary. The paper ends with a number of recommendations from a 2010 Stonewall report which focused specifically on the needs of lesbian, gay and bisexual people.

  Assessing current and future housing and support options for older LGBT+ people
  Sarah Carr, Paul Ross
  Joseph Rowntree Foundation, 2013
  In this viewpoint discusses how the choice of housing and support for older lesbian, gay and bisexual (LGB) people is perceived, and how it could support LGBT+ individuals to have a better life. It looks at the potential of personalisation in improving choice and control, and the importance of LGBT+ people feeling safe to share their identity and life history, particularly for dementia. The authors present the findings of an online survey of younger LGBT+ adults (30–69) who were asked to consider how and where they would like to live in older age, particularly if they have high support needs. Thoughts from a discussion day held by the Stonewall Housing ‘Insights’ Older LGBT+ People’s Housing Group Manchester Forum are also presented. Some examples of emerging international innovations in housing and support for older LGBT+ people are also summarised. The conclusion draws together some of the key themes and messages about alternatives to traditional support and housing that enhance the lives and promote the independence of LGBT+ people as they grow older.

  Books

  Living better with dementia: good practice and innovation for the future
  Jessica Kingsley, 2015
  Shibley Rahman

  Lesbian, gay, bisexual and transgender ageing: biographical approaches for inclusive care and support
  Jessica Kingsley, 2012
  Edited Richard Ward, Ian Rivers, Mike Sutherland
  This book explores the lives and perspectives of older lesbian, gay, bisexual and transgender (LGBT+) people. As their distinct needs are often overlooked due to lack of understanding, this book demonstrates how life course approaches can offer insights into their support needs as they grow older, from housing and health care to community support.

• Useful links Open

  Alzheimer’s Society
  The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including this one on Learning disabilities and dementia (430) and two easy-read factsheets aimed at people with learning disabilities on What is dementia? (ER1) and Supporting a person with dementia (ER2)..

  BILT: British Institute of Learning Disabilities
  This national charity produces a range of publications on learning disabilities and dementia, all of which cost, including ‘Down’s syndrome and dementia’ (for professionals), ‘About dementia’ (for people with learning disabilities) and ‘About my friend’ (for friends of people with Downs’s syndrome and dementia).

  Dementia and people with intellectual disabilities
  This 2015 guide from the British Psychological Society and Royal College of Psychiatrists covers a wide range of issues including assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia.

  Do you recognise pain in someone with a learning difficulty and dementia?
  This is a set of resources produced by the Joseph Rowntree Foundation in 2008 to help care staff, GPs and carers to recognise and treat pain in people who have a learning difficulty and dementia.

  Younger people with dementia: living well with your diagnosis
  This resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017 and includes a section on ‘Caring for someone with a learning disability and dementia’.