‘Using research to identify and address loneliness in older age’ by Anna Goodman, Policy and Research Officer, ‘Campaign to End Loneliness’

There is an ever-growing body of research and evidence around the issue of loneliness – that unwelcome feeling that occurs when there is a mismatch between the number and quality of relationships we want and those we have – in older age. There is a strong indication that loneliness and social isolation has a negative impact on our mental and physical health. Research also shows that social relationships are crucial to a good quality of life in older age.

We are learning more all the time but so far we have only scratched the surface, there is so much more that we –  as campaigners, researchers and practitioners – need to learn: from who is at risk, to what the best interventions are. The Campaign to End Loneliness and our network of academics and researchers are working to increase, develop and better share the research base around loneliness in older age.

As part of this project, we recently held a small workshop with Professor Christina Victor of Brunel University, who is examining data from the English Longitudinal Study of Ageing to answer a number of questions including: ‘who is lonely?’, ‘when are they lonely?’, ‘what implications does this have for practice?’. Her early findings indicate that:

  • Loneliness can be a self-fulfilling prophecy – if you expect to be lonely in later life, you are more likely to be lonely.
  • 40% of widows are lonely (but some actually become less lonely when they are widowed).
  • Loneliness is a fluid experience – someone who might feel lonely one month, won’t necessarily feel the same three months later.
  • Older men are just as lonely as older women.
  • Older people from BME communities are particularly vulnerable to loneliness

You can watch Professor Victor’s presentation in full here.

Implications for research and practice

Although a work in progress, this new research presents a number of challenges to organisations and charities providing support for older people. For example, we need to find ways to make our services more responsive to the highly individual and fluctuating nature of loneliness. This is no easy task, but during discussions workshop attendees talked about how building partnerships with GPs, registrars, community police teams, and carers groups (amongst others) could help them to achieve this. Notes from these discussions can be read here.

As if often the case, the more we learn about whom is lonely and when, the more questions we uncover for further research. More specifically, we need the academic community to help us demonstrate what the characteristics of different successful loneliness interventions are – and keep us informed of any further implications their research might have for practitioners.

We aim share the latest evidence around loneliness and isolation in a quarterly Research Bulletin, so please do get in touch if you have something you would like us to send to our 1,350+ supporter network.

For more information about the Campaign to End Loneliness, our Research Hub or the Research Bulletin, please contact Anna Goodman at anna@campaigntoendloneliness.org.uk.

‘Dangerous Care’ by Ann Stewart

Last week, three care workers from Hillcroft nursing home were jailed and a fourth given a community sentence for tormenting and abusing elderly residents with dementia. Their actions were described by the trial judge as “gratuitous sport at the expense of vulnerable victims”.  This high profile case adds to a depressing list of abuse of frail elderly and vulnerable people amounting in many instances to criminal behaviour on the part of care workers.

This blog is a personal reflection on these events although I do have an academic interest in body work and the regulation of care.  My first reaction when I read or see the coverage is to feel sick.  I am taken back instantly to the emotions I experienced in relation to my own parents.  They lived until their late 80s together in their council bungalow in a village until my mum’s physical health deteriorated significantly.  Dad was not able to look after her adequately and I took over responsibility for them.  Eventually they came to live with me and for two years or so I became immersed in the world of ‘care’ – high intensity emotional contexts, exhaustion and persistent low level frustration caused by every day events coupled with constant anxiety about their wellbeing.  I hated to think of their vulnerabilities being exposed.  I wanted everyone around them – care workers, nurses, my friends, neighbours and adult children to see them for what they were – simple ordinary people – nothing special – at the end of their lives.  I wanted people to like them – to see through all the stuff that comes with frailty in old age – and to treat them well and with respect.  I can’t bear to think about what has happened to people like my mum and dad, although neither had the added vulnerability of dementia in the situations described in these cases. I am of course not alone in this – the relatives and friends of those who experienced the abuse say the same: they are angry and feel guilty.  I understand the guilt while recognising that it is inappropriate.

My second reaction focuses on the pictures of the workers, described as bullies, monsters, callous and hard hearted and a disgrace.  I find it difficult to join in the ‘how could they?’ responses.  I was constantly anxious about the demands that my mother in particular presented to those who cared for her.  I worried all the time that they were unreasonable – I often found them unreasonable when I was doing the caring – while at the same resisting this way of thinking about her – why was I expecting her to be reasonable?  What did that mean – complying with my idea of what she wanted or needed?  I would mentally grit my teeth, draw on a joint history (not uncomplicated) and my love for her and find a way through although I would feel furious at times.  I didn’t always stop myself saying and doing callous things or neglecting her.  But how would those who only knew her in this last stage of her life, and through a work relationship, cope?  What did I expect of them?  What was reasonable?

I hoped to manage relationships between care workers and my parents and between the care workers themselves (we always had a minimum of 2 at any one time because of the complex needs of my mother) by throwing as many resources as possible at the situation – decent wages and generous conditions – plenty of substantial and paid breaks away from her during working hours, long holidays, constant attention to individual worker’s needs and pressures,  flexible arrangements between the workers themselves and so on.  I am no saint. I wanted the arrangements to work.  I liked all the people involved.  I could be ‘generous’ because my parents received substantial financial support through direct payments at that time because my dad had been a farmer worker and they had no assets.  I could add to this from my professional salary.  I lived in a very large house with a big garden providing ‘space’ for workers.  It was still far from easy.  Tensions between workers would emerge which had to be sorted out.  But by having a mix of part time postgraduate students, full time directly employed workers and some agency workers coming in at peak times we managed somehow.

I look at the pictures of the ‘homes’ that always seem to accompany the reports of these institutional abuse cases and think about the financial and managerial regimes that underpin them.  The reports provide glimpses of the position of the care workers – often from marginalised groups in society, under pressure, vulnerable, untrained, unsupported and under-resourced – and I can see how the abuse happens quite easily and I find it hard to join in the general condemnation while sharing the anger at what has happened.

It seems to me that we as a society abuse these workers and when they abuse others we send them to prison. We create a ‘moral panic’ about institutional care and put these body workers at its heart.  Labour law seems totally unable to provide an adequate framework for protecting care workers and for managing these really difficult relationships.   The structural problems associated with the commodification of caring particularly in a context of ‘austerity’ are being mis framed as the individual responsibility of marginalised workers within the law. These workers’ (often physically and emotionally exhausted) culturally identified bodies are made invisible for these purposes while increasingly made subject to surveillance by managers and regulators through other forms of regulation deemed necessary to prevent the abuse which results from the means through which such care is provided.  The state punishes them for our collective lack of responsibility.

Ann Stewart, School of Law, University of Warwick, Coventry CV4 7AL, UK 

Why Isabel Menzies Lyth is More Important than Ever

As covered in my previous blog for Revaluing care OXPIP provide parent-infant therapy to people with babies from conception to age two. So why am I writing a blog which features someone who is famous for trying to understand the internal dynamics of hospitals and nursing? Isabel Menzies Lyth helped found the Tavistock Clinic but was most famous for her paper, ’Social Systems as a Defence Against Anxiety”. The paper studied trainee nurses and gave rise to concerns about how many nurses were failing to complete their training. She came to the belief that organisations working with trauma and illness developed defences to prevent front-line staff becoming overwhelmed by the distress and suffering they were experiencing on a day-to-day basis. I want to explain why I believe her thinking is still highly relevant to the provision of care and our work in Children’s Centres.

I will start with a bit more context about OXPIP and how we work.  We are one of the pioneers of parent-infant psychotherapy. We have been working in Oxfordshire for the last fifteen years looking at how to support the development of more positive early relationships between parents and their babies. Founded by Sue Gerhardt and others, and building on emerging knowledge about early brain development we now work with 300 families a year and consistently see improvements in maternal mental health and the quality of the parent-infant relationship.

What distinguishes the work of our therapists, aside from their considerable expertise and knowledge, is their focus on the relationship as the subject of therapy. Improving the relationship between a mother and her baby has benefits for both sides on every front from mental and physical health and wellbeing through to reduced criminality and better academic attainment later in life.

So, aside from being heavily influenced by Bowlby’s theories of attachment, how is Isabel’s work to better understand ‘institutional anxiety’ relevant to our work with parents and infants? The answer is that while our therapeutic work with parents and their babies is at the heart of what we do, there is a great deal around that which is also of value. We know from countless enquiries following tragic deaths that communication between professionals is critical to identify and respond to abuse and neglect. We also know, although it gets less prominence, that there is a natural human tendency not to think about horrific or unthinkable acts which are close to us, to not see that which should be apparent or not to act when rationally it is clear we should.

It is only through giving front line staff the time and space to think through the issues they are faced with that we can reasonably expect them to respond sensitively and appropriately. It is only by developing people’s understanding of human relationships and how to respond supportively to distress or dysfunction that we can hope to reduce the number of such tragedies.

Children’s Centres vary hugely and they include some highly skilled and experienced staff, but the jobs are often poorly paid and under-supported. We offer both formal supervision and informal consultation to staff in children’s centres which helps them to contain and understand the challenging emotions and behaviours they can be presented with on a daily basis.

For two years after leaving university I worked in front line care roles: an older people’s care home and a geriatric hospital. I have seen, and fought to resist, the institutional apathy and indifference which can so easily come to inhabit such places. Poorly paid staff, too many demands on their time, and little support from management will inevitably lead to people becoming numb and ignoring of the people in their care. I fought to resist it but for me it was a short-term job. Had I had to fulfil such a role for a living, for life, I would have struggled to retain my humanity and compassion for the people in my care.

It is this emotional exhaustion that leads to detachment and organisational anxiety. It is the need to acknowledge and address anxiety, despair and depersonalisation that makes the work of Isabel Menzies Lyth important. How do we ensure the health of the organisations that provide the care in our society? How do we care for the carers? How do we prevent organisations from sinking into malaise?

OXPIP: The Oxford Parent Infant Project
Suite J
High Street
The Kidlington Centre
Kidlington
OX5 2DL
T: 01865 371080 or 01865 778034
info@oxpip.org.uk
www.oxpip.org.uk

N.B. This blog is adapted from the introduction I gave for Jeremy Holmes when he gave the inaugural Isabel Menzies Lyth Lecture ‘Malaise in the NHS’ for OXPIP on 22 October 2013. For more information do drop me a line.

ReValuing Care in 2013

A wordle of the ReValuing Care Blog 2013

ReValuing Care in 2013

As we approach the end of 2013, the time is ripe for a brief look back over the activities of the ReValuing Care research network in the last 12 months, and a peek forwards into ReValuing Care activities for 2014.

I’ll begin with a heart-felt “thank you”. To all of you – who have written for the blog, read contributions to this blog, shared those contributions on twitter, facebook and other social media. Since the launch of our regular blog series in June of this year, there have been nearly 50 blog contributions from members of the network. The website visitor numbers have increased from just 120 in January, to over 2,000 unique visitors in November. The ‘wordle’ image on this page provides an overview of the topics that have been covered. Of course, we’ve been talking about ‘care’; but we’ve also seen posts on topics as diverse as dementia, gender identity, soup kitchens, parenting, childlessness, sexuality and ageing (to name but a few). Care has been explored in its personal, practical, and conceptual senses. Blog contributors have explored the challenges and possibilities of care, and the multifaceted ways that research into and about care can lead to the (re)valuing of all forms of care. The international nature of our network has been demonstrated by the diverse locations of care research that have been shared: we’ve had contributions from the UK, the Republic of Ireland, India, Kenya, the US, Italy, and Australia. Creating a network is a very difficult thing to do. It takes time, energy, thought. It takes care. We all have to care about the potential and possibilities that arise from being in touch with others who care about care.

The way this blog has developed over the last six months, demonstrates the vitality and diversity of research about care. The challenge we face for the future is how to keep our conversations going; how to make the most of the network that we have created. Our AHRC grant, which funds the current phase of the ReValuing Care research network ends in the next few months. It would be all too easy for our network to spit, and fade and fizzle out when the money runs out. For the network to continue to develop, and for the conversations to continue beyond that time, we need to think creatively about how to take things forward. I have some ideas, and I’m sure you all do too.

To keep this network going, to build on the work that we’ve done, we need to nurture it, feed it and let it grow. We need to take care of it.

How? We could hold another ReValuing Care workshop (does anyone want to host?). We could reach out more to sectors beyond academia through other types of events (do you have ideas?). We could consolidate our academic contributions so far through an edited collection. We could apply for further funding to take forward additional questions and ideas. We could encourage our colleagues and contacts to get involved (from PhD students to professors, policy makers to activists, it doesn’t matter who you are, so long as you are interested in care). Perhaps the easiest thing of all to do is to keep up this blog. When we see a news story about care that makes us feel (in many ways it doesn’t matter which emotion sparks us off: angry, confused, impressed, concerned, happy…) we should write about it.  There are so many things we can do. I hope that we do at least some of them.

I’ll end with the caring equivalent of a call to arms (maybe a call to alms?): 2013 has seen the ReValuing Care research network develop into a community of scholars from across the globe. I very much hope that 2014 has even more in store for us. For this to happen, we need you to join in. I hope you will.

The Liverpool Care Pathway Controversy: Time to Revisit the Ethics of Care?

Back in July an Independent Review headed by Baroness Julia Neuberger published a report into the controversy over the use of the Liverpool Care Pathway (LCP) – a holistic plan for care of dying patients, within the acute hospital sector (Neuberger 2013) This came in the wake of a long line of recent enquiries into the standards and practices of care within the healthcare sector (Francis 2013, Patients First 2013, Keogh 2013) and in response to media headlines such as “Distraught families allege that the NHS protocol designed to allow the terminally ill ‘a good death’ is being abused” (The Telegraph 29 October 2012).

The LCP had originally been developed by the Royal Liverpool University Hospital and the Marie Curie Hospice Liverpool in the late 1990s, for the care of terminally ill cancer patients. It comprises of 10 key elements, including a recognition that the patient is dying; communication with the patient and relatives; spiritual care; reviews of medication, nutrition and hydration; and collaboration and shared decision-making. All of which are intended to be guidelines that aim to support, but not replace, clinical judgment (Ellershaw 2013, 2).

The controversy centres around the conflict between the recognition of the LCP as a model of good practice, (NICE 2003, 2006) and the findings of the Review that in reality incidents of poor treatment – “uncaring, rushed, ignorant – abound” (Neuberger 2013, 3). The title of the Review, “More Care, Less Pathway” neatly sums up its flavor. It concludes that patients were often treated with less respect than they deserved, with the use of the LCP being reduced to a “tick box exercise” and that communication with the families was inadequate or entirely absent (Neuberger 2013, 3-4).

This tension between laudable intention and implementational failure generates questions about how policy and law can effectively promote practical and realistic care practices and yet remain sensitive to the myriad of vulnerabilities experienced in the face of death. This is all the more pertinent in relation to dying, where care’s traditional preservative purpose is subverted, so that care not only reaches beyond survival but entirely precludes it. Further, the aim of the LCP to “ensure that uniformly good care is given to everyone, wherever they are (…)” (Neuberger 2013, 12) brings into sharp focus the socio-spatial notion of caring (Johnsen et al 2005). This examines the potential of such ‘caring spaces’ as the hospital, to accommodate the apparent merger between the private and the public, the intimate and institutional in the care of the dying. This in turn raises the question not only of institutional support and time for care (Groenhout 2004) but also of whose role it is to care, which feeds into the wider debate surrounding the education and training of doctors and nurses.

It seems evident that the absence of both the virtues (Engster 2005, 55) and practices proclaimed by the advocates of the Ethics of Care, such as a recognition of the relational self (Gilligan 1982), the need for particularist solutions (Bowden 1997) and a recognition of the ‘expertise’ that can arise as a result of practical engagement in caring practices (Ruddick 2009,) were instrumental in the failure in implementation of the LCP. Problems such as poor communication, with “brutal and callous” language being used by clinicians when speaking to relatives about the patient (Neuberger 2013, 25), may be remedied with training. Yet a recognition of the patient’s ‘relational autonomy’ (Nedlesky 2011) in order to foster practices of shared decision-making, or the over-coming of the apparent taboo that even healthcare professionals feel in speaking about death, (Neuberger 2013, 21) may require a more significant change of culture.

One wonders how other, more subtle aspects of the Ethics of Care as it relates to the process of dying, might be feasibly accommodated within institutional practice. How could notions of the embodied experience of the dying patient, which would provide an anchor to the notion of particularity in care, (Fox and Murphy 2013, 13) be recognized? The current link between the LCP and embodiment is a paradoxical one, with the physical body at once occupying the place as its central object, yet silenced by the routine and often unexplained use of heavy sedation and the withdrawal of nutrition and hydration, causing great distress to the relatives (Neuberger 2013, 24). Likewise the accommodation of aspects of spiritual care, such as the importance of religious and cultural aspects of dying, or the desire to place remaining lucid above pain relief in order to cherish time with their relatives (Neuberger 2013, 24). Could a caring response that may even require a retreat from the desire to minimize suffering, ever be countenanced? A recent example is found in the case of VT, a 72 year old devout muslim man whose family argued that their father, for whom they had cared devotedly for 10 years, would want his life preserving for as long as possible, even if he was suffering, as he would view that suffering as an opportunity for purification in preparation for the next life (The Guardian 13 November 2013).

Ultimately, the final recommendation by the Review that the LCP be phased out by July 2014 and be replaced by personalised care plans for each patient, backed up by condition-specific guidance (Neuberger 2013, 48) is surely right. The potential for us and our loved ones to die in accordance with our own view of a ‘good death’ is an appealing one. Yet the Review is also right that a system wide-change is needed to improve end-of-life care, and still one wonders how institutional mechanisms operating under such a nuanced and sensitive approach will be either practical or feasible?

Kirsty Moreton – Birmingham Law School, University of Birmingham.   KLM180@bham.ac.uk

 As a result of the Review, the Leadership Alliance for the Care of Dying People (LACDP) has been set up to respond to the Review’s recommendations and publish a system-wide response, primarily focusing at this stage on clinical practice. Its Engagement Document is still open for consultation until 6 January 2014 https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage.

References:

-           Bowden, Peta. 1997. Caring: Gender Sensitive Ethics. Routledge.

-           Ellershaw, John. 2013. Statement regarding LCP Review Publications. Marie Curie Palliative Care Institute, Liverpool. www.mcpcil.org.u

-           Engster, Daniel. 2005. ‘Rethinking Care Theory: The Practice of Caring and the Obligation to Care’ 20(3) Hypatia 50.

-           Fox, Marie and Murphy, Therese. 2013 ‘The Body, Bodies, Embodiment: Feminist Legal Engagement with Health’, in Davies, Margaret and Munro, Vanessa. (eds) The Ashgate Research Companion to Feminist Legal Theory. Ashgate 249.

-          Gilligan, Carol. 1982 (2nd edn 1993) In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.

-          Groenhout, Ruth. 2004. Connected Lives: Human Nature and an Ethic of Care. Rowman and Littlefield.

-          Johnsen, Sarah: Cloke, Paul; May, Jon 2005 ‘Day Centres for Homeless People: Spaces of Care or Fear?’.

-          Nedelsky, Jennifer. 2011. Law’s Relations: a Relational Theory of Self, Autonomy and Law. OUP

-          Neuberger, Julia. 2013. More Care, Less Pathway: A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway.

 -          Ruddick, Sara. 2009. ‘On Maternal Thinking’ 37 (3&4) Women’s Studies Quarterly 306.

 

Spaces of Care – the banning of soup kitchens

There is an extensive literature on “spaces of care” i.e. “socio-spatial field[s] disclosed through practices of care that take place between individuals” (Conradson, 2003; 508). Such spaces can be found in a range of settings: care homes for the elderly, day centres for the homeless, hospitals.

I have been grappling for some time without making much progress (those at the ReValuing Care conference in Adelaide will recognise these concerns from my paper there) with the treatment of a particular space of care – the soup kitchen. My reason for this interest was prompted by the attempts made by Westminster City Council in 2011 to outlaw soup kitchens in an area of London around Westminster Cathedral close to Victoria station.

One of the distinguishing features of the soup kitchen is that the space of care is an outdoor public space. This means that they are often viewed negatively by both local residents and local authorities. At the Adelaide conference I asked three questions which I would still welcome any help or suggestions in answering.

The first question relates to the nature of care offered by a soup kitchen. In an era where charitable and not for profit organisations are increasingly incorporated into the delivery of state care there is a view that “support agencies are increasingly accepting of the use of enforcement in some circumstances, in a desperate attempt to improve the quality of life of their clients and reduce any negative impact their activities might have on other people if/when all other approaches have failed” (Johnsen and Fitzpatrick, 2010; 1717).

By contrast providers of soup kitchens tend to fall outside the corporatist contracting mode of delivery of services. They are often provided by faith groups “attempting to articulate a theo-ethical sense of agape and caritas, a genuine openness to and an outpouring of unconditional love towards the other” (Cloke et al 2010; 99). In this “[s]oup runs tend to be noninterventionist, accepting of difference, and aim to bestow upon individuals the dignity to just ‘be’ without demanding anything in return” (Johnsen et al 2005; 329). This puts them very much at odds with government policy.

So my first question is whether we should distinguish between these two forms of care? What, if anything, is special about care which is delivered by non-professionals who are not demanding change from the recipient?

However, even if we see a positive in this rejection of a coercive form of care, can the soup kitchen do more than offer a compassionate but “ultimately degrading construal of the homeless as helpless victims” (Feldman, 2004; 92). Given its delivery of food in an outdoor setting does the soup kitchen do no more than simply help keep the homeless alive or does the “outpouring of unconditional love” referred to above provide something worthwhile in and of itself?

Finally, my last question relates to the long history of the soup kitchen which have been with us since the middle ages. Westminster’s attempts to outlaw soup kitchens were ultimately put on hold. But in an age of ever increasing control of public space why does the soup kitchen prove so resilient?

Professor Caroline Hunter, York Law School, University of York

caroline.hunter@york.ac.uk

References

Cloke P, May J. and Johnsen S. (2010) Swept up lives: Re-envisioning the homeless city Chichester: Wiley­Blackwell

Conradson D. (2004) Spaces of care in the city: the place of a community drop-in centre, Social & Cultural Geography, 4:4, 507-525

Feldman L.C. (2004) Citizens without shelter: homelessness, democracy and political exclusion Ithica: Cornell University Press

Johnsen S., Cloke P. and May J. (2005) “Transitory spaces of care: serving homeless people on the street” Health & Place 11, 323-336

Johnsen S. and Fitzpatrick S. (2010) “Revanchist Sanitisation or Coercive Care? The Use of Enforcement to Combat Begging, Street Drinking and Rough Sleeping in England” Urban Studies 47(8), 1703-1723

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:

Rethinking Age in the Context of Care

Age- and stage-based assumptions are deeply embedded in care models and across care practices (Grenier, 2012). Whether care is used to refer broadly to a concept, institutional and organisational practices, or to denote relationships between families and older people, age and care are intricately intertwined. This entry focuses on care provision as a site from which to consider the intersections of age and care, and whether current models are in line with older people’s needs, and the new realities of ageing. Care is often linked with discourses of dependence, and paradoxically associated with potential in youth, and decline in age (see Irwin, 1995; Gullette, 2004). In late life, care tends to be delivered based on age eligibility. Yet, with age and what it ‘means to grow old’ an increasingly contested terrain, it is time to reconsider how age is enacted or sustained through care practices, and consider whether age-based models of care are suitable in the contemporary context.

 

A number of complexities exist when we begin to unpick age and the organisation of care. Formal care provision tends to be delivered through age-based segments of youth and old age. Few formal care services are life-long. Yet, the separation of the life course into age- and stage-based periods, age as an organising principle, and former notions of ageing as decline have been called into question (Featherstone and Hepworth, 1991; Hockey and James, 2003). At the level of personal experience, older people voice that ‘they are not old’ – that the age they are assigned contrasts with their experience and sense of self (see Kaufman, 1986; Bytheway, 2011). This has created a disjuncture where suggested models and expectations are concerned, as well as an alignment with new forms of ageing that emphasise success, health and well-being (see Katz, 2005). And while universal understandings of age are quickly being unravelled, undeniable needs for care amongst older people continue to exist. Older people may need care at various points across their life course as a result of disability or chronic illness, ‘frailty’ or end of life issues, and/or at particular marginalised locations (e.g., poverty, older homelessness). Yet, are such needs for care age-based?

 

We are at a crossroads where the age-based provision of care is concerned. Although reconfigurations of policy based on chronological age are underway (e.g., public pension), current examples focus on age adjustments, rather than on differing needs or alternate arrangements. Perhaps the retention of age is prudent considering the realities of ageism, reconfiguring age to reduce social expenditure, and the structured inequities in late life (see Gee and Gutman, 2000). However, the contemporary context calls for reflection at minimum. How do we catch up with emerging realities of aging and adjust the organisation of care accordingly? Should age be used to organise care services? If so, in what circumstances? If not, how can we assure that those in need are not further marginalised? Such questions represent a starting point from which to reconsider age-based models of care, question underlying assumptions, and reconfigure care practices so that they are more aligned with changing notions of age and contemporary care needs.

 

Amanda Grenier, PhD, Associate Professor, McMaster University

email: amanda.grenier@mcmaster.ca

twitter: @amanda__grenier

 

References:

Bytheway, B. (2011). Unmasking age: the significance of age for social research. Bristol: The Policy Press.

Featherstone, M., and Hepworth, M. (1991). ‘The mask of ageing and the postmodern lifecourse’ In M. Featherstone, M. Hepworth and A. Wernick (eds) Images of ageing, London: Routledge.

Gee, E. M., and Gutman, G. M. (2000). The overselling of population aging: apocalyptic demography, intergenerational challenges, and social policy, New York: Oxford University Press.

Grenier, A. (2012). Transitions and the lifecourse: challenging the constructions of ‘growing old‘. Bristol: Policy Press.

Gullette, M. M. (2004). Aged by culture, Chicago: University of Chicago Press.

Hockey, J., and James, A. (2003). Social identities across the lifecourse, Houndmills: Palgrave MacMillan.

Irwin, S. (1995). Rights of passage: social change and the transition from youth to adulthood,  London and Bristol: UCL Press.

Katz, S. (2005). Cultural aging: life course, lifestyle, and senior worlds, Peterborough, ON: Broadview Press.

Kaufman, S. (1986). The ageless self: sources of meaning in late life, Madison: University of Wisconsin Press.

 

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