Roger Newman, MBE shares his experiences of caring for a partner with dementia, and how this led him to set up the first LGBT Dementia Support Group. This extract is taken from Chapter 20, ‘Meeting the Needs of LGBT People Affected by Dementia’ in new book Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, edited by Richard Ward, Ian Rivers and Mike Sutherland.
It is 20 years since my then partner was diagnosed with pre-senile dementia. It was a condition I knew nothing about, let alone its description ‘Alzheimer’s disease’. I assumed he had a rare condition and I certainly knew no other gay men who had anything similar. Moreover, my experiences of dealing with health professionals and service providers suggested that they were also in the dark when faced with a gay carer and a gay man with the condition, so each experience of dealing with them and coping with their responses brought new challenges, not to say frustrations, as they assumed my needs would simply be the same as they were for ‘straight’ spouses.
My experiences as a carer and the heartfelt sense that conditions for LGBT people affected by dementia could be much improved led me to set up the LGBT Dementia Support Group. The formation of this group is not simply a matter of historical interest, however, since the process identifies and reflects key issues that are fundamental to recognising and meeting the needs of LGBT people affected by dementia. Initially, such needs were signposted via my frustration with the consistent use of non-inclusive images in publications produced by the Alzheimer’s Society. I wrote a letter to the Society in which I pointed out that photographs used for the Society’s publicity materials showed Caucasian people surrounded by loving, supportive spouses and, presumed biological, families. I enquired if I was, perhaps, the only person caring for someone with dementia who wasn’t married, or who was the same gender as the person with dementia they cared for.
After launching the phone helpline in the Society’s newsletter, we waited in hope for our first call – and we waited some more! However, one evening we were shocked at hearing the phone ring: our first ‘client’ phoned, and so began a service and a journey of discovery. I think that, to a certain extent, members of the support group had harboured an unconscious assumption that the needs of lesbian and gay carers would simply mirror those of the heterosexual population, but with an added factor of the gay or lesbian carer experiencing discrimination from service providers. However, after listening to the first callers, we soon realised that LGBT carers’ situations may be far more complex than this – we had not accounted for the fact that lesbian and gay relationships may be qualitatively different from those of the heterosexual population, and so any caring issues inevitably reflect those differences. Some of our callers were in contact for years, sometimes our relationships lasted the entire duration of their cared-for person’s dementia. We thus developed friendships and bonds which were, I would argue, deeper and more intense than those experienced in many other helpline situations.
The challenges carers were facing included an inability on the part of service providers to understand and use appropriate language when working with lesbian or gay service users; a widespread acceptance of gay and lesbian stereotypes and myths about the nature of gay and lesbian people’s relationships, and a general lack of awareness of, and frank disregard for the importance of ‘the family of choice’ in the lives of lesbian and gay people.
The group ended when the resources offered by our host were redirected elsewhere and it became impossible to continue. However, many of the issues we identified and the needs we were able to meet did not simply evaporate – in highlighting them in this chapter we hope that dementia service providers and practitioners will feel encouraged to take these forward in their own work.
Commentary from Richard Ward, lead editor of Lesbian, Gay, Bisexual and Transgender Ageing:
“This short passage from Roger Newman, detailing his experiences as a gay man caring for his partner with dementia captures well many of the challenges faced by older LGBT people as they seek to access and make use of health and social care services.
The experience of caring without acknowledgement, recognition or understanding is undermining and at times thoroughly isolating. Yet such conditions currently characterise provision in areas such as dementia care for those who identify as lesbian, gay, bisexual or transgender. As our book on LGBT ageing makes clear, this lack of recognition often does not so much stem from wilful prejudice but a failure to grasp how people’s needs might differ due to their sexuality or gender identity and an unwillingness across research, policy and practice to tackle this gap in knowledge and understanding.
As is so often the case, it is LGBT people working together that have created services and resources such as the network that Roger describes above. But it is long overdue that health and social care services take responsibility for more systemic change. We hope that our book on LGBT ageing marks the beginning of that process.”
I am finishing a memoir about caring for my husband who has vascular dementia. Your comments can apply in many ways to the general population. For the first five years no health care person mentioned the word “dementia”. I was lucky in that I had mental health experience and have been able to help him to live a satisfying life and maintain my own lifestyle. I am looking forward to reading your book.