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Sexuality and personhood cannot be ignored for persons developing a dementia

Many of us have been in the situation where one bit of serious event is quickly followed by another serious event. Imagine, having just been told that you may be developing a dementia that you feel forced then to tell the medical establishment that you’re in fact gay, and you’re actually a very private individual.  Many elderly LBGT individuals now became adults in a time when homosexuality was considered to be unnatural, wrong, deviant and the basis for discrimination. If you were a gay man aged 80 today you may have developed your sense of identity and self-worth in a secret world where people like you hid their identities and maintained a very different public persona. You would have been 44 when the American Psychiatric Association declassified homosexuality as a mental disorder in 1973.

The past of medicalising homosexuality is indeed inglorious as described here. Evelyn Hooker’s pioneering research in the 1950s is said to have debunked the popular myth that homosexuals are inherently less mentally healthy than heterosexuals, leading to significant changes in how psychology views and treats people who are gay. In conjunction with other empirical results, this work led the American Psychiatric Association to remove homosexuality from the DSM in 1973 (it had been listed as a sociopathic personality disorder). In 1975, the American Psychological Association publicly supported this move, stating that “homosexuality per se implies no impairment in judgment, reliability or general social and vocational capabilities…(and mental health professionals should) take the lead in removing the stigma of mental illness long associated with homosexual orientation.”

This is yet another example where it matters that you’re a person not a diagnosis. How you’re navigated from that point through the care services, quite clearly, is not just a matter of law (equality law which should legislate against you being discriminated against), but is also a matter of culture. Whilst cultural attitudes to LGBT citizens, it can only be the case that once you’ve met one LBGT person you’ve only met one LBGT person, in the same way once you’ve met one person developing dementia you’ve only met one person developing dementia. Nonetheless, it is important for policy-makers, care providers and the general public to have a working approach to people who happen to be LGBT encountering the care services. For many people now, it is near impossible to imagine what it was like to live in constant terror of being discovered. Just 50 years ago, staggeringly, there was no protection in law from prejudice and discrimination, and it was unthinkable that gay relationships could be formally acknowledged through a civil partnership. It turns out that a high percentage of older LGB people have experiences of mental health problems, including an increased risk of suicide attempts and selfharm. The recent Opening Doors survey (Phillips and Knocker, 2010) found that one-fifth of respondents had experienced a mental health problem in the past five years.

As Sally Knocker (@SallyKnockerdescribes in her report “Perspectives on ageing: lesbians, gay men and bisexuals” for the Joseph Rowntree Foundation (January 2012),

“It is difficult to be sure of the size of the older lesbian and gay population, as there are still no census figures regarding sexual orientation. Stonewall estimates that 5–7 per cent of the population is gay or lesbian, and this estimate is accepted by government agencies. The total population of people over the age of 55 living in the UK is 17,421,000 (based on 2009 mid-year statistics) and 5–7 per cent of this is between 871,045 and 1,219,470 people (roughly equivalent to the population of Birmingham). Older lesbian and gay people therefore make up a very sizeable minority community, yet their views are rarely sought as a distinct group.”

Not all people with dementia are old, but there are potentially two effects at play here. Ageism  is stereotyping and discriminating against individuals or groups on the basis of their age. The term was coined in 1969 by Robert Neil Butler to describe discrimination against seniors, and patterned on sexism and racism. Likewise, everyone has the right to access healthcare, regardless of their sexuality or gender identity. Lesbian, gay, bisexual and transsexual people may have poor experiences of health services or social care because of negative attitudes to sexuality or gender identity. This may include an assumption that someone is heterosexual, discussing a patient’s sexuality when it’s not relevant to their care, or refusing care because of their gender identity or sexuality. Negative experiences of health or social care professionals should not discourage you or the person you care for from seeking treatment. The Equality Act [2010], legislated in the final days of the last Labour government, makes it unlawful to discriminate on the grounds of sexual orientation or to discriminate against someone who intends to undergo, is undergoing or has undergone gender reassignment, in such a way that acts to a detriment.

The various definitions are as follows:

  • Lesbian : a woman whose primary sexual and emotional attraction is towards other women
  • Gay (can be used for both gay men and lesbians) : a person whose primary sexual and emotional attraction is to the same sex
  • Bisexual : a man or woman who is sexually attracted to both men and women
  • Transgender : a man or woman whose gender identity is at odds with their biological sex
  • Intersex : a person born with sex chromosomes, external genitalia or an internal reproductive system that is not exclusively male or female

It’s an important issue as reduced access to networks of gay or lesbian friends, gay or lesbian interest or social groups and to the broader lesbian and gay communities have been found to contribute to reduced health outcomes for lesbian and gay people with dementia. This can lead to social isolation and loneliness, itself leading to stress and depression, and therefore the general wellbeing of LBGT persons living with dementia may be under pressure for a plethora of reasons.

Encouragingly, however, policy, in its general direction of appreciating the ‘I am a person not a diagnosis’ mantra, has applied personhood to thinking about sexuality in persons with dementia, in a way which might have happily surprised even the late Tom Kitwood himself. In Heather Birch’s “It’s not just about sex! Dementia, Lesbians and Gay Men” presented at the Alzheimer’s Australia Conference, Adelaide 2-5 June 2009, Professor Dawn Brooker’s message about person centred care was cited at the plenary session, viz:

Paul and Mark had been together for almost 20 years when Mark was diagnosed with dementia. When Mark went into aged care, Paul felt that his world was torn apart. He wanted to tell staff that his partner is the same person that he met and fell in love with, and how much pain he felt when Mark didn’t always recognize him. He wanted staff to know that dementia didn’t differentiate between a gay or heterosexual person. He wanted to tell them he had the same trauma and grieving and that he loved his partner like heterosexual couples do. He didn’t tell staff, because he didn’t know if they would understand.

And yet a person who does not feel easy with expressing sexuality is hugely problematic for an approach based on personhood.

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[Source: slides of a talk entitled “IN or OUT of the CLOSET: ending the invisibility of LGB and TI people in dementia, ageing and aged care services” by Norman Radican, LGBTI Project Officer and CaLD Liaison Officer, Access and Equity Unit, Alzheimer’s Australia SA.]

In a jurisdiction, Australia, generally considered to be more progressive than ours, there has been a real thrust in wishing to improve access and equity in various cultural groups. Access to services is determined and influenced by diverse social and cultural factors which impact on an individual’s capacity to enter the health service system and their ability to engage that system to provide them with the best quality services for their needs. And equity in dementia and aged care services supports the right of every individual to the highest attainable standard of care regardless of their age, culture, race, religion, language, gender, sexual orientation, geographic location or socio-economic status. Aside from dementia, the principles of access and equity appear to be important in our jurisdiction with the introduction of clinical commissioning groups, pursuant to the Health and Social Care Act [2012].  A recent document “Taking the lead: How clinical commissioning groups are changing the face of the NHS” describes how National charity Stonewall is working with five CCGs to develop a health champion programme. The CCGs are: East and North Hertfordshire CCG, Northern, Eastern and Western Devon CCG, Nottingham City CCG, Tower Hamlets CCG an Wirral CCG. Each CCG will get free support to develop health services for lesbian, gay and bisexual people.

A body of work looking at the experiences of LBGT individuals in health and social care contexts and the ways in which they navigate the disclosure of their sexuality to service providers unfortunately confirms the presence of homophobia (irrational fear of, or aversion to, gay or lesbian people) and heterosexism (the assumption that all people are heterosexual and that heterosexuality is the only “permissible” sexuality). A critical issue for respondents in the study by Brotman and colleagues (Brotman et al., 2007), for example, was the fear of having to come out to service providers or, worse, of having forcibly to “return to the closet”. These concerns align well with research undertaken in the UK exploring the experiences of ageing as a gay man or lesbian woman. Only 35% of respondents in the study by Heaphy and colleagues (Heaphy et al., 2003) study, for example, were likely to be positive towards gay and lesbian service users, and respondents described differential treatment, experiences of hostility and a generalised lack of understanding of their lifestyle choices. Disappointingly, they generally understood health and social care providers to operate according to heterosexual assumptions, meaning there may be a generalised failure to address their specific needs. For many of the participants in this study, the entry of service providers into their lives was the pivotal point at which their sexuality became evident to others, as their previously private lives were exposed to public scrutiny and they were thus obliged to decide whether or not to come out to service providers.

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In a paper entitled “Coming out to care: gay and lesbian carers’ experiences of dementia services”, Dr Elizabeth Price from the University of Hull  reports on findings from a qualitative study, undertaken in England that explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore how a person’s gay or lesbian sexuality might impact upon their experience of providing care in this context. Data collection occurred over a 4-year period. The authors concluded:

“It is perhaps time, therefore, for service providers to begin to critically consider their attitudes and responses to carers whose social identities are increasingly diverse, for the ways in which those responses are framed can impact significantly on carers’ experiences of service pro- vision and the relationships they share with providers and, more importantly, the people they support.”

Psychological security” is therefore an emergent theme which Sally Knocker describes elegantly as follows on Darren Gormley’s (@mrdarrengormley) blog:

“The first core need seems to me to be one of psychological safety. A great deal of emphasis is placed on keeping people physically safe, but emotional safety can be harder to measure or safeguard. Those of us who are gay and lesbian will have spent a lot of our lives making almost daily assessments of whether we feel safe to be open about who we are – whether it is booking a double bed in a hotel, meeting someone new at a party, going to the doctor or buying a book or a magazine.

We will be used to be being vague about our partners, using ‘they’ rather than ‘she’ or ‘he’.  We will constantly try to gauge whether the person in front of us in a social or work situation is likely to be judgemental or relaxed. If someone is religious, does this mean that they are more likely to think I am a ‘sinner’ or someone to be pitied or ‘saved’? Is a younger person less likely to be shocked? Am I safer in a big cosmopolitan city like London or Manchester than I will be in a village in Derbyshire or in Wales?”

And Sally describes that communication is a pivotal aspect of this:

“We therefore need all health and social care professionals coming into contact with people who are lesbian, gay, bisexual or trans to give plenty of positive indications that they ‘don’t have a problem’. As a personal example of this, I remember a midwife visiting our home shortly after our daughter was born. She was an older black woman with a Christian cross round her neck and I am ashamed to admit that my own prejudices and assumptions about age, culture and religion kicked in, so I felt very apprehensive about how she would react to my partner and me.”

Trust therefore becomes a key issue. LGBT individuals and their partners and friends will need reassurance that their rights to privacy will be respected. Dementia may mean a reduction in the ability to conceal and self-censor behaviour and information disclosure.

LGBT individuals may also have concerns about confidentiality, uncertain about who may have access to their personal information. As the data sharing drive continues in the NHS, this may become more of a policy issue in the forthcoming years. This fear may be based on previous bad experiences, and may not trust in representatives of authorities, official organisations and institutions. They may think a care worker will judge them, pity them, avoid physical contact, treat them as an object of curiosity, betray confidences, provide poor quality services or reject them. And for persons with dementia in residential care, other residents, with whom they share very little in terms of life experience or way of life, may demonstrate prejudice towards a non-heterosexual resident or their family of choice. This of course incredibly difficult to ‘legislate against’. Services may be designed on the fundamental assumption that people using their services are heterosexual. In such a system, LGBT individuals then become invisible.

Personhood is all about challenging assumptions, which we can all make without a malicious bone in our body. The problem with some of these assumptions is that they can lead to quite hurtful prejudices, especially when consolidated in  how our culture operates. The fact that not some persons with dementia are young of course challenges a yet further assumption, and imagine if you’re that person who not only has to tell the whole world about your sexuality but also you’re most probably developing one of the dementias. The medical model is in an excellent position to ignore these challenges, but to do so would be a massive failure. There’s no doubt we’ve come a long way, but, as is so often the case, it’s not only a case of where you’ve come from but also where you’re ultimately going to.

References

Brotman S., Ryan B., Collins S., et al. (2007) Coming out to care: caregivers of gay and lesbian seniors in Canada. The Gerontologist 47 (4), 490–503.

Heaphy B. & Yip A.K.T. (2003) Uneven possibilities: understanding non-heterosexual ageing and the implications of social change, available at: http://www.socresonline.org.uk/8/4/heaphy.html.

Phillips, M. and Knocker, S. (January 2010) Opening Doors Evaluation The Story So Far… Executive Summary, available at: http://www.openingdoorslondon.org.uk/resources/Opening%20Doors%20Evaluation%20Report%20-%20Executive%20Summary%2023%2002%2010%20(2).pdf

Price, E, (2010) “Coming out to care: gay and lesbian carers’ experiences of dementia services”, Health and Social Care in the Community, 18(2), pp. 160–168.

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