Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk

‘A Stronger Voice for People with Dementia’ by the Dementia Advocacy Network (DAN)

What is advocacy?

The Advocacy Charter (produced by Action for Advocacy) defines advocacy as “taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.  Advocates and advocacy schemes work in partnership with the people they support and take their side.  Advocacy promotes social inclusion, equality and social justice.”

Advocates are independent from other services and as such are able to focus on giving people a voice and empowering people in a unique way.

There is some statutory provision of advocacy (Independent Mental Health Advocates, Independent Mental Capacity Advocates and NHS Complaints Advocacy).  Statutory advocacy has the benefit of being protected by law (e.g. the Mental Health Act and the Mental Capacity Act) but these types of advocacy are only available in specific situations.  There is therefore a need for generic advocacy services that are able to work with a wider range of people on the issues with which they need support.

Dementia advocacy

The Dementia Advocacy Network (DAN) believes that every person with dementia should have access to a skilled and independent advocate who understands dementia and is equipped to advocate effectively.

People with dementia are among some of the most vulnerable members of our society.  With an illness that brings diminishing ability to cope independently, progressive changes in cognitive ability, fluctuating mental capacity and increasing difficulties in communication they are vulnerable to discrimination and abuse.  Increasing demand on services, austerity measures and reduced resources mean that sometimes the person with dementia has little involvement in decisions about their treatment and care, their rights disregarded, their voice not listened to or overpowered by others.

Advocates who work with people with dementia are able to ensure that their voice is heard and their rights protected.  Advocates can also work in a non-instructed capacity with people who are unable to tell the advocate what they want, which can be particularly valuable for some people with dementia.  DAN’s publication “Taking their side; fighting their corner” includes case studies that demonstrate the value of advocacy for sixteen different people with dementia.

Advocates can benefit other services by being able to spend time specifically focusing on finding out what the person with dementia wants and communicating this to service providers.  This means that service providers can have the assurance that their service is tailored to that particular service user, taking their individual views and preferences into account.

‘Mind the Gap’ – Advocacy provision in London

DAN has produced a report to promote the need for independent advocacy for people with dementia and highlight areas in London where there are gaps.  The findings of the report will be presented and discussed at DAN’s conference, ‘A Stronger Voice for People with Dementia’ which is being held in London on 18 September.  Anyone who is interested in attending can book a place here.

For further information please contact Jan Kendall, DAN Manager, or Heather Tyas, National Project Support, Dementia Advocacy Network (DAN): Tel: 020 8968 2614. Email: dan@advocacyplus.org.uk. Website: www.advocacyplus.org.uk/dan

New Publication on Dementia Carers’ experiences of ‘the system’

maze

Carers of people living with dementia find ‘the system’ of dementia support to be a maze.

A new research article by Elizabeth Peel and Rosie Harding has been published ‘online first’ in Dementia: The International Journal of Social Research and Practice. ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’ explores data from both the ‘Duties to Care’ and ‘Dementia Talking’ dementia projects to highlight the experiences of familial carers of people living with dementia in navigating the complex health and social care systems that provide support for people living with dementia.

Abstract: Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.

For more information, please contact either Professor Elizabeth Peel (e.peel@worc.ac.uk) or Dr Rosie Harding (r.j.harding@bham.ac.uk). The article can be accessed on the Dementia journal website or by contacting us.

Antipsychotic medications in dementia – time to think again about regulation?

Along with my colleague, Elizabeth Peel, I was invited to write a post for the OUP Blog highlighting the arguments in a paper of ours that was recently published in the Medical Law Review. The blog post draws out several of the arguments from our paper (which is open access for a short period: download it now!), and yet no-one seems to have taken much notice. When we were invited to write for the blog, we were told that the blog has 8,000 subscribers and has over 40,000 visits every month. So why would a contribution on this important issue not make much of a splash?
There could be all sorts of reasons – perhaps it’s not quite on the zeitgeist of where the media focus is on caring for people living with dementia; perhaps the argument in the paper is too ‘legal’ and so not quite amenable to media interest in the blogosphere; perhaps the recently reported reduction in antipsychotic prescribing makes everyone think this is a non-issue; or perhaps until there are other ways to ‘treat’ ‘challenging behaviour’ in dementia, nobody is interested in the limitations of the current methods. It’s hard to tell. Certainly any and all of these might be contributory factors. But I think this is an important issue, and one that it’s worth shouting about, so I’m going to try again here!
In the article ‘He was like a Zombie’: Off-label prescription of antipsychotic drugs in dementia’, we argue that most antipsychotic drugs:

  • are not tested for use in elderly people with dementia;
  • are not licensed for use in elderly people with dementia;
  • have serious side effects including stroke and death when prescribed to elderly people with dementia
  • should be better regulated

We also highlight that in our empirical research, carers of people with dementia report a range of other harms associated with the use of this class of drugs to treat behavioural symptoms in the people they care for. In the paper, we explore the potential for legal redress for these harms and find that there is little or no chance of legal claims being successful.
As we think again about how people who can’t stand up for themselves are vulnerable to abuse at the hands of the professionals responsible for their care (for example the Winterbourne View scandal), we need to think again about all sides of the interface between care, law and regulation. The current regulatory frameworks offer little comfort to those who are harmed by ‘care’ that is not criminally abusive. So as well as thinking again about how we regulate social care, I think the antipsychotics issue demonstrates why we might also need to think again about health care and those who can’t consent to treatment. Without going into the intricacies of medical negligence, people with dementia harmed by the prescription of antipsychotic drugs to treat behavioural symptoms currently have no chance of compensation or access to justice even though it is widely known that they can be harmful. I think it is time this changed. What do you think?

Who should take responsibility for care?

A nw scheme to train a million people as ‘dementia friends’ has been announced by the Prime Minister, David Cameron, as part of the next stage of his Prime Minister’s challenge on Dementia. The scheme will be run by the Alzheimer’s Society, who are inviting interested individuals to register their interest on the dementia friends website.

Dementia Friends Logo

www.dementiafriends.org.uk

Dementia friends will be trained to help people with dementia feel understood and included in their community. The aim of the scheme is to “make everyday life better for people with dementia by changing the way the nation thinks, talks and acts.” £2.4 million has been put forward from the Social Fund and the Department of Health to fund this initiative.

There is much to commend about this scheme. If successful, it could not only help to raise awareness of the challenges faced by people living with dementia, but could also lead to positive steps in the direction of creating ‘dementia-friendly’ communities. Making local communities more dementia friendly could help people living with dementia to live more independently for longer. This scheme also helps to recognise the importance of people other than immediate family and friends in supporting and caring for a person living with dementia. All too often, caring for a person with dementia can be an isolating experience, where familial carers slowly lose their own support networks because others don’t understand the challenges that dementia presents.

It seems to me that there is also an important ideological shift associated with making caring for people living with dementia a priority for communities, rather than individuals and private families. In an ideal world, moving towards collective responsibility for care might help to off-set some of the individual costs of caring, provided the scheme offers real help and support to people living with dementia. On the other hand, we must also be alert to the possibilities that rather than increasing (state-funded) support for people living with dementia and those who care for them, initiatives that push the emphasis onto communities to support each other are also tied to the aim of reducing the financial responsibility of the state for these sorts of services.

All too often in the dementia care sector, there are excellent services for some, and limited or no services available to others depending on where they live. In my recent research into dementia carer’s experiences (see www.dementiaproject.net), many familial carers found it extremely difficult  to navigate the complex ‘maze’ of services and service providers. Let’s hope that this is a project that, if successful, will continue to be financially supported through public funds to ensure parity of access, rather than relying on charitable support that can be geographically variable.