Caring for a Parent living with Dementia and changes in Family Relationships

Prof Elizabeth Peel, Loughborough University, UK

Elizabeth Peel is a Professor of Communication and Social Interaction in the Department of Social Sciences, Loughborough University, UK @profpeel

Book Cover for ReValuing Care in Theory, Law and Policy

ReValuing Care in Theory, Law and Policy: Cycles and Connections

Caring for a parent living with dementia is a stressful thing to do. We know quite a lot about spouses or partners who are cast in a caring role because their loved one develops dementia, but we know much less about the experiences of adult children of parents with dementia. Recent Australian research [1] has found that sixteen per cent of their sample of over 500 family carers had contemplated suicide in the previous year. We also know that dementia care disproportionately impacts women [2].

In my book chapter called ‘“It has had quite a lot of reverberations through the family”: Reconfiguring relationships through parent with dementia care’ in the Revaluing Care edited collection, I consider parent care by examining the accounts of eleven people who had cared for their mother or father. These people participated in the focus groups in the ‘Duties to Care’ project or the interviews in the ‘Dementia Talking’ project (see http://www.dementiaproject.net/).

Some of the behaviour changes in their parent had a big impact on these participants. For example Derek* said ‘it’s terrible to think your own mother doesn’t know you’, and he found it very difficult to cope when his mother thought that he was his father. Another man, James, pretended to be his father in order to keep his mother calm and content. These two examples show how parent dementia care can change how relationships in families usually are – those normative ‘rules’ about roles in families – into something new and reconfigured by the illness.

These participants also talked about how disagreement between themselves and their brothers or sisters also made parent care difficult. All but one of the people I interviewed emphasised conflicts with their sibling rather than a more collaborative approach – working in partnership to care for, and support their parent. Victoria was the lone voice, in this study, who said about her sister, ‘we keep each other sane’.

The tensions that they discussed with their siblings included having different views about the state of their parent’s health, money, and how they communicated with their parent. For instance, as Jan said ‘the worst thing was trying to communicate to my siblings how bad mum was’. In some cases, like Jan’s, relationships between siblings had ‘totally broken down’. In other cases, families had divided roles between them as a way of managing potential disagreement as well as the tasks and responsibilities involved in caring for a parent living with dementia. For example, Sue said that her sister has ‘the cash card but I keep my eye on the bank account’.

Caring for a parent living with dementia can include managing and coping with behavioural and psychological symptoms, managing finances, dealing with health and welfare decisions, incontinence, and making difficult decisions towards the end of life.  Understanding the perspectives of those providing care to a parent with dementia – a relatively common, if not anticipated experience – may offer a lens on families and the business of caring more broadly. Damien Riggs and I have written a book about kinship that further examines these, and other, issues [3]. Our book Critical Kinship Studies was recently published by Palgrave Macmillan.

* These are not participants’ real names.

References

[1] O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M. et al. (2016) Suicidal ideation in family carers of people with dementia. Aging & Mental Health, 20(2), 222-230.

[2] Erol, R., Brooker, D. & Peel, E.  (2016) The impact of dementia on women internationally: An integrative review. Health Care for Women International, 37(12), 1320-1341. Available: http://www.tandfonline.com/doi/full/10.1080/07399332.2016.1219357

[3] Riggs, D.W. & Peel, E. (2016) Critical Kinship Studies: An introduction to the field. London: Palgrave Macmillan. Available: http://www.palgrave.com/it/book/9781137505040

Caring about P in the Court of Protection: the Re X scenario

by Jaime Lindsey, PhD Candidate and Teaching Associate at the University of Birmingham ( j.t.lindsey@bham.ac.uk)

In the recent Court of Appeal case, Re X [1], the judges’ obiter comments were certainly timely. The case concerned Deprivation of Liberty Safeguards (DOLS) cases under the Mental Capacity Act 2005 (MCA). The case itself turned on the question of whether P (the subject of the court proceedings) had to be a party to the proceedings in which they would potentially be deprived of their liberty. Whilst the Court of Appeal held that they did not have jurisdiction to hear the appeal, they made their feelings clear that P should always be a party to DOLS proceedings.[2]

Under the MCA, individuals can, in certain circumstances, be deprived of their liberty in a care home or hospital for the purpose of being given care or treatment.[3] Further, a person who may be deprived of their liberty outside of a hospital or care home, but still with sufficient degree of State involvement, would also require Court authorisation for the deprivation of liberty.[4] Many of us would expect that depriving a person of something so fundamental as their liberty should, at the very least, require them to have some input into the discussion. In fact, the ECtHR jurisprudence requires that a person who is to be deprived of their liberty should have access to a court and the opportunity to be heard.[5] This is not only important on an academic level; if a person who does not wish to be deprived of their liberty forcefully resists it, then the measures which need to be taken against them are surely an important factor for any court to consider before making an authorisation.

Yet this should not only be the case for removing somebody’s liberty. In my view, a more compassionate and inclusive approach should apply more broadly to the Court of Protection’s entire jurisdiction. In fact, new Court of Protection rules require the court to, at the very least, consider whether P should be required to participate in the proceedings and this is certainly a step in the right direction.

Involving P in the capacity question

As of 1st July 2015, the new Court of Protection (Amendment) Rules 2015 came into force. They require, amongst other things, that the Court considers whether it should make one of a number of directions relating to P’s participation in the proceedings (new Rule 3A Court of Protection Rules 2007). The possible directions it can make include: (1) joining P as a party (2) appointing a legal (or otherwise) representative for P (3) requiring P to address the judge (4) any alternative direction meeting the overriding objective. Whilst these rules certainly could have gone further, they show the Court’s increasing awareness of the greater need for P’s involvement.

Rule 3A is certainly an important step forward. It should ensure that judges and the parties are alive to the question of P’s involvement. Actually, involving P should be seen as a positive way to assist the Court in deciding whether he or she has capacity; a large part of the Court’s jurisdiction in health and welfare cases is about determining whether or not a person has the capacity to make a decision in the first place and this should not be forgotten. Clearly there will be cases where the capacity question is clear from the outset, for example consider the brain damaged adult on life support, but many more cases will be borderline and sometimes will involve adults who have no mental or learning disability at all.[6] Either way, to the extent that it is possible to do so and for capacity determinations at least, P should always be involved with proceedings.

A more inclusive approach?

The new rules should certainly go some way in achieving a more inclusive approach to decision making in the Court of Protection and are to be welcomed. However, the extent to which, and in what way, the options open to the Court will be used will need to be examined following implementation. A major factor in the increased involvement of P in proceedings will be the lawyers, social workers and carers who are involved in the case; if they see the benefit of involving P and argue in favour of this in court then is a judge really likely to refuse? Particularly in light of the obiter comments of the Court of Appeal in Re X, albeit that was in a slightly different context. In fact, the onus is not only on the judge in the case to consider this but it is also on the parties who can make an application to request such a direction. Those who know and work with P, and the lawyers on all sides, should be encouraged and feel empowered by recent developments to request P’s involvement.

The power of the Court of Protection in affecting the lives of individuals who fall under the MCA regime, both for the positive and negative, is enormous. In some ways, whether or not the outcome of the cases is any different as a result of the involvement of P is not the measure of success; what is vital is that people feel that their voice is heard, particularly in relation to decisions affecting their own lives. This empowers people to “buy in” to the ultimate decision that might be made on their behalf. That said, involving P in the decision making process will hopefully lead to better and more context sensitive decisions being made and the new rule 3A is a first step in achieving this.

[1] Re X [2015] EWCA Civ 599

[2]Ibid per Black LJ at para 108

[3] Pt1 s.1(2) MCA

[4]Under s.16(2)(a) MCA

[5]Winterwerp v The Netherlands [1979] 2 EHRR 387

[6] See for example IM v LM and AB [2014] EWCA Civ 37

‘Who is Helping Who?’ – Co-Production and Professional Boundaries within Social Care services.

By Nick Andrews

I have been working in education and social care for thirty years, and have seen various new initiatives and buzz words come and go, whilst the fundamental principles of humanity remain the same. ‘Co-production’ in its truest senses is grounded in these principles. However, as with the concepts of ‘personalisation’ and ‘reablement’, there is a real danger that the term  ‘co-production’ is misused for hegemonic purposes to cover up what is essentially a cost cutting exercise. Under this scenario, individuals and their communities are expected to take on more responsibility for their own well-being whilst the machine of impersonal and ‘professionalised’ public services carries on as it always has done, albeit it with a few less staff employed. In my opinion, this would be a travesty and missed opportunity to restore warm humanity as the driving force for public services, not compliance with increasingly centralised and de-personalised processes and systems.

One of my favourite quotes by the theologian Martin Buber is ‘all real living is meeting’. Please note that Buber’s understanding of the term ‘meeting’ is much richer than the idea of putting a group of people together in a room or placing nurses and social workers in the same office, which is commonly assumed to result in integrated practice. I am sure many people will share my experience of being in meetings where no one actually met, where each person had their own agenda and the purpose of the meeting was to get this across – to win the argument.  For Buber, ‘meeting’ is about genuinely connecting with other people and being changed in some way by the process. In order to explain this process, he talks about two ways of relating to people and the world, which he calls ‘I-It’ and ‘I-Thou’.

In ‘I-it’ relationships, the person is detached and unaffected. In ‘I-Thou’ relationships, the person is attached and vulnerable. Tom Kitwood, in his seminal book ‘Dementia Reconsidered – The Person Comes First’ talks about his experience of seeing how people living with dementia were dehumanised through receiving emotionally detached task based care:

‘A man or woman could be given the most accurate diagnosis, subjected to the most thorough assessment, provided with a highly detailed care plan and given a place in the most pleasant of surroundings – without any meeting of the I-Thou kind ever having taken place’ (Kitwood, 1997)

By contrast, I believe that genuine co-production facilitates and nurtures the development of ‘I-Thou’ relationships between all parties, which in so doing begins to challenge the prevailing understanding of professionalism and professional boundaries.  In relation to this, I am currently co-ordinating a NISCHR and Joseph Rowntree Foundation (JRF) funded project in Wales, which is focused on the use of evidence from their ‘A Better Life – for older people with high support needs’ programme, along with other forms of evidence in social care service and workforce development.

The ‘A Better Life’ programme has identified that relationships are key and ‘Often it is the simple things that bring the most pleasure (and the lack of them can bring a sense of sadness and loss) and services do not always seem to be very good at delivering ‘the ordinary’’. (Blood, 2013 p13)

The research challenges also call for a different way of working, which is often alien to the world of emotionally detached and compliance focussed task based care, which is summed up nicely in the following quote by Edgar Cahn:

‘The world of helping others in need is now built around one-way transactions…. and with the best of intentions, one-way transactions often send two messages unintentionally. They say: “We have something you need – but you have nothing we need or want or value.”’  (Cahn, 2004).

In a series of recent focus groups and learning events involving older people, carers and frontline staff, I have been struck by how many people feel that current regulation and guidance is risk averse restrictive and at worst destructive of human relationships. For example, workforce regulation states ‘the inappropriate use of touch is not permissible’, rather than ‘the appropriate use of touch is fabulous and to be encouraged’. This is a particular issue for people living with dementia, who often have to express themselves and connect with others through feelings and emotions. Frontline staff talk have talked about feeling guilty when they do little kind things that are not written in the Care Plan or receiving small gifts of appreciation, older people have been ‘told off’ (in the name of health and safety) for pouring tea for others in day services, and carers have been made to feel that they no longer have a role when the person they love goes into a care home.

At the heart of co-production, is an understanding that everyone has something to contribute and that exchanging these contributions is enriching for everyone concerned.  I am reminded of the work of Jean Vanier, who established the L’Arche Communities in learning disability services. Vanier did not see his role as caring for people with learning difficulties, but rather sharing his life with them and being open to receive and learn from them as much as to offer them support.

I am reminded of one of my earliest experience of working in social care services. It was 1984 and I had started my first job as a residential support worker in a children’s home. I thought I was the ‘sorted one’ who was employed to help others. I worked hard to form good working relationships with staff and children in the home, but one boy, who had experienced a lot of hurt in his life, kept his emotional distance. As anyone who knows me well can tell you, I am not gifted in DIY or anything that involves fixing something mechanical. One day, I was trying to repair my bicycle (I did not drive at the time) and was getting nowhere fast. The boy walked past me and said ‘I’ve got a book about repairing bikes, do you want to borrow it?’. I am pleased to say that I took up his offer and our friendship took off from that day. He is now a happily married 43 years old who lives on the other side of the country, but we still keep in contact via Facebook and phone and offer each other support and encouragement whenever we can.

Jean Vanier once said, ‘I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes’. This is an important message for social care practitioners and agencies. We need to open our ears, our eyes and our hearts to the people we work with, which might involve sharing our vulnerabilities and concerns and allowing ourselves to be changed by genuinely ‘meeting’ with them in truly co-productive relationships.

 

References

Blood, I. A Better Life – Valuing Our Later Years, York, Joseph Rowntree Foundation, available at: http://www.jrf.org.uk/publications/better-life-valuing-our-later-years

Cahn, E. (2004), No more throw away people – the co-production imperative, Washington, Essential Books

‘Applying Critical Psychology: Or starting a support and advocacy group for people with dementia who are lesbian, gay, bisexual or trans’ by Professor Elizabeth Peel

Critical psychologies share two common concerns. One is a critical perspective on the theory and methods of mainstream psychology: ‘[critical psychology] believes that psychology has adopted a paradigm of inquiry that is ill-suited to understanding human behaviour and experience’ (Sampson, 2000: 1). The field is concerned to undermine the positivist-empiricism of mainstream psychology, which has been (and continues to be) used to deter social change and to buttress the status quo; it is argued that traditional liberal norms of research ‘provide ideological support to dominant institutions and channel psychologists’ work and resources in system-maintaining rather than system-challenging directions’ (Fox, 2000: 22).  The other key concern is with progressive politics in some form; aligning with oppressed groups and urging psychology to work towards social justice. Or as Prilleltensky (1999: 100) puts it, critical psychology ‘is critical of society as much as it is critical of psychology’. According to Prilleltensky (1999) critical psychology is premised on the view that the current societal status quo oppresses various social groups and that conventional psychology is a tool in maintaining the status quo, because of this critical research should be a more practical endeavour. Critical psychologists are also united in opposition to conventional psychology, because of mainstream psychology’s ‘history of racism, sexism, heterosexism…[and] with its modernist pretensions to scientific expertise, is not a platform from which we wish to speak’ (Condor, 1997: 112). The consensus within critical psychology is a tentative one, but psychologists claiming criticality do, according to Condor (1997: 111), share common interests which include: ‘an attack on universalistic assumptions of human nature; a critique of individualism; an interest in social context and a broad commitment to contructionism; and a concern with text and talk’. Therefore, the gaze of critical psychology is directed both inwards, towards the discipline of psychology aiming to undermine and critique its research questions, theory, and methods, and also outwards, to society with the goal of  ‘be[ing] used at the service of the oppressed’ (Prilleltensky, 1999: 103).

So in the service of the oppressed I am in the process of setting up a support and/or advocacy group for lesbian, gay, bisexual and trans (LGBT) people with dementia, in partnership with the University of Worcester Association for Dementia Studies, Birmingham LGBT Centre for Health and Wellbeing and PACE Health London. We know that LGBT people with dementia are especially marginalised communities and that the issues impacting LGBT people with dementia are under represented (read: largely absent) in generic dementia groups and charities (Alzheimer’s Society, 2013). What haven’t been heard, to date, are the voices of LGBT people with dementia themselves. The nominally titled ‘Over the Rainbow’ project aims to offer:

1) an opportunity for LGBT people with dementia to come together in safe spaces;
2) facilitate intergenerational dialogue, support and advocacy;
3) allow the voices of LGBT people with dementia to be heard beyond the life-time of the project (via ongoing ‘dementia rainbow friends’ buddying, and online representation).

By working collaboratively with Birmingham LGBT Centre and PACE Health London my hope is that the ‘Over the Rainbow’ project will become embedded in the work of these third sector organizations and therefore sustainable over the longer-term.

The project is funded by DEEP (Dementia Engagement and Empowerment Project), in partnership with Innovations in Dementia, Joseph Rowntree Foundation, the Mental Health and Foundation and supported by Comic Relief.

With luck this project will create significant opportunities for LGBT people with dementia, and their carers, to self-advocate and raise the profile of this group of people with dementia both within generic dementia organizations and within LGBT communities. But first, there is the considerable challenge in reaching out to this hidden population. If you have any contacts or links, or would like to get involved do contact me on e.peel@worc.ac.uk Twitter: @ProfPeel

References

Condor, S. (1997) And So Say All of Us?:  Some thought on ‘experiential democratization’ as an aim for critical social psychologists. In T. Ibáñez & L. Íñiguez (Eds.) (1997) Critical Social Psychology. (pp. 111-146) London: Sage.

Fox, D. (2000). The Critical Psychology Project: Transforming society and transforming psychology. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 21-33). Basingstoke: Macmillan.

Prilleltensky, I. (1999) Critical Psychological Foundations for the Promotion of Mental Health. Annual Review of Critical Psychology: Foundations, 1, 100- 118.

Sampson, E. (2000) Of Rainbows and Differences. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 1-5). Basingstoke: Macmillan.

Biography
Elizabeth Peel is Professor of Psychology and Social Change in the Institute of Health and Society, University of Worcester, UK. Her research has explored diabetes self-management, same sex relationships and families, and diversity training. She holds a British Academy Mid-Career Fellowship for the Dementia Talking: Care, conversation and communication project. She won the BPS Psychology of Sexualities Section outstanding academic writing award 2012, and book awards from the American Psychological Association’s Division 44 for the co-edited volume Out in Psychology (Wiley, 2007) and in 2013 from the British Psychology Society for Lesbian, Gay, Bisexual, Trans and Queer Psychology: An introduction (Cambridge University Press, 2010).

 

Empowering the Voices of LGBT Individuals with Dementia

A seminar in London organised by the Dementia Engagement and Empowerment Project (DEEP) and facilitated by myself, was attended by over 40 people this week, to discuss how we can give greater individual and collective voice to lesbians, gay, bisexual and trans (LGBT) people with dementia. Attendees included dementia service providers and advocates, older LGBT service providers and advocates, older LGBT people themselves, and academics working in the field of LGBT ageing and/or dementia. There were three excellent speakers: Rachael Litherland from DEEP; Sally Knocker (trainer, consultant and writer) and Dr Elizabeth Price (Senior Lecturer, University of Hull). Two short films were shown: one from Opening Doors London (which includes a gay men with memory problems in need of befriending and extra support) and a training clip from GenSilent (which features, among others, a gay couple dealing with one partner’s dementia; a lesbian couple pondering their future care needs; and a trans women who is dying, is estranged from her family, and lacks support). One of the most amazing things about the seminar was that it started without us! Many people arrived early, some by almost an hour, and struck up vibrant and deeply engaged conversations. These continued even after we introduced the planned bits of the seminar, and went on over the tea break, and into the group discussions which then followed.

LGBT individuals with dementia are not one homogenous group (1). As dementia is age-related and women outlive men, then older lesbians and bisexual women are likely to be disproportionately affected by dementia (women outnumber men with dementia 2:1) (2). This, together with relatively diminished social support in later life, means that older lesbians are likely to also be disproportionately represented in care homes for people with dementia. By contrast, gay and bisexual men who do find themselves in those spaces will be a minority in a minority due to both gender and sexuality. Many LGB people are impacted by the lack of recognition of LGB carers of someone with dementia (3) and of LGB health and social care service users, including in dementia provision (4). This is nuanced by gender: older women are particularly concerned about being around potentially sexually disinhibited behaviour of heterosexual men with dementia; and many older lesbians and gay men want integrated provision, but many also want gender and/or sexuality specific care. This is also nuanced by sexuality: many bisexual individuals suffer from the disappearing ‘B’ in LGBT (5), being assumed to be heterosexual if single or in a relationship with a person of another gender and being assumed to be lesbian or gay if in a relationship with someone of the same gender.

Trans individuals (who may or may not identify as LGB) are concerned with both shared and particular issues (6). Those particularities include: concerns about transphobia; being worried about not being able to cross-dress; being very concerned about receiving personal care if their physical bodies are not congruent with their gender performance; and, among those who have transitioned, being concerned that if they have dementia, as it progresses, they may no longer remember that they have transitioned, and may revert to performing according to the gender which they were assigned at birth.

A wide ranging number of themes emerged across the seminar. These included: the issue of how to ‘find’ LGBT people with dementia who may be hidden both by their dementia and by their sexualities and/or gender identities; the importance of making sure any project which aims to empower LGBT people with dementia is driven by LGBT people with dementia; concerns about heteronormativity, homophobia, biphobia and transphobia among dementia service providers and dementia service users; the importance of training and practice development among service providers (7); the importance of both mainstream providers and the LGBT ‘community’ taking responsibility for addressing these concerns; and the need to take into account the needs of queer/polyamorous/non-labelling individuals with dementia who can often be hidden in generic LGBT discourse.

All attending the seminar were agreed that it was a very successful and stimulating event, and hopefully would lead on to the development of a number of different projects which will give greater voice to LGBT individuals with dementia in the future. A range of possibilities were discussed, including making mainstream dementia advocacy more inclusive of LGBT individuals with dementia, and LGBT intergenerational projects, which would involve LGBT befrienders supporting LGBT individuals with dementia. DEEP will be keeping all those who attended informed in future developments. Anyone wishing to know more, should contact the Dementia Engagement and Empowerment Project (DEEP)

(1) Newman, R. and Price, E. (2012) ‘Meeting the Needs of LGBT People Affected by Dementia,’ in R. Ward, I. Rivers & M. Sutherland Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, pp183- 195, London: Jessica Kingsley. [Accessible via: http://bit.ly/1dGiQCb]

(2) Knapp, Martin, et al. (2007) Dementia UK: a Report to the Alzheimer’s Society. London: Alzheimer‘s Society.

(3) Price, E. (2012) ‘Gay and lesbian carers: ageing in the shadow of dementia’, Ageing & Society, 32: 516-532.

(4) Ward, R., River, I. & Sutherland, M. (eds) (2012) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London: Jessica Kingsley

(5) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’, in: Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care (10), pp 42-55, Edinburgh: Dunedin Academic Press, pp. 42–55.

(6) Auldridge, A., et al (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality

(7) Suffolk Lesbian, Gay, Bisexual and Transgender Network (2012) Providing Quality Care to LGBT Clients with Dementia in Suffolk: A Guide for Practitioners; Alzheimer’s Society (2013) Supporting lesbian, gay and bisexual people with dementia. Alzheimer’s Society Factsheet 480. London: Alzheimer’s Society:

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

Care needs, gay men aged 60 and over

One of my research projects is to examine how a group of 25 gay men aged 60 and over have experienced or expect to experience old age. Interviewed as part of research I did for a book that Palgrave Macmillan published in 2013 (Gay Men’s Relationships Across the Life Course) the men were recruited in Auckland, London, Manchester, Melbourne, and New York. Six of them were in their 80s, nine were in their 70s and ten were in their 60s. This project builds on work that Brian Heaphy (2009), Ann Cronin and Andrew King (2012) among others, have already done in the area of queer ageing needs. It will also expand on my own findings from an all-Australian sample of gay men (n=80) that I used in The Changing World of Gay Men (Palgrave Macmillan, 2008) where I argued that I found little or no evidence to suggest that Australian gay men aged 60 and over were lonely in old age and that most seemed relatively optimistic about the prospect of growing old. What I did not examine, however, in The Changing World was the extent of their fears or concerns about life in care, which is the focus of the research I write about today.

Preliminary analysis of data from my international sample of 25 men suggests that they chiefly used two narratives when explaining what worried them about their care needs in old age. The first narrative related to that set of general fears and concerns that occupy the waking hours of many members of the general population as they age, namely fears about losing mobility or independence, having to live alone after the death of a partner, loss of sexual potency or interest, having to move into a nursing home, or the risk of dementia.

The second narrative the men drew on when explaining what worried them about old age were fears about heterosexism or homophobia. At the top of their list of worries was the heteronormativity they expected would exist in nursing homes or the homophobia of staff or other residents, either of which could have the effect of forcing some of the men back into the closet. One of the interviewees, a Sydney man aged 72 said the following about aged-care accommodation: ‘Nursing homes in Australia are often run by church organisations. Some church organisations, though not all, are not particularly welcoming to gay residents. They are not particularly understanding of the diversity of human relationships and of their needs’. A similar, related fear that men already living independently at home expressed was having to deal with care workers who were homophobic or uncooperative.

Cronin, Ann and Andrew King (2012) ‘Only Connect? Older lesbian, gay and Bisexual (LGB) social capital’ in Ageing and Society Available on CJO 2012  doi:10.1017/S0144686X12000955

Heaphy, Brian (2009) ‘The Storied, Complex Lives of Older GLBT Adults: Choice and its Limits in Older Lesbian and Gay Narratives of Relational Life’ in Journal of GLBT Family Studies, 5, 119–138.

‘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