It started with a tweet: working together to create online support for LGBTQ+ people affected by dementia

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All contributors to this article are members of the LGBTQ+ Dementia Advisory Group, and most were also involved in the steering group which set up Speak Out with Dementia. Lucy Whitman was dementia engagement officer at Opening Doors and facilitator of Speak Out with Dementia until March 2022. Chris Maddocks is living with dementia, a founder member of Speak Out with Dementia, and an ambassador for Alzheimer’s Society. Daíthí Cee is living with dementia and a founder member of Speak Out with Dementia. Heather Ritchie is supporting her partner with dementia. Mike Parish is supporting his partner with dementia and is a director of For Brian CIC. Thomas Williams is a trainee occupational therapist at Cardiff University. Natasha Howard-Murray is senior innovator at Alzheimer’s Society. Julie McCaughey is dementia voice lead, Northern Ireland and the North West, Alzheimer’s Society.

In June 2020, everyone was reeling from the horror of the pandemic and the brutal isolation of lockdown. A call went out on Twitter – was anyone interested in setting up a support group for LGBTQ+ people affected by dementia? Lucy Whitman and colleagues describe what happened next.

During the first lockdown, Mike Parish, long-time carer for his husband Tom Hughes, and Rachel Niblock from DEEP (the Dementia Engagement and Empowerment Project) reached out on Twitter to gauge interest in setting up a support group for LGBTQ+ people affected by dementia.  Soon afterwards, a group of individuals – LGBTQ+ people living with dementia, their carers and friends, and various professionals – got together and started meeting on Zoom.

We called ourselves a “steering group”, and within a few months we had created Speak Out with Dementia, a unique online peer support group. We then set up the LGBTQ+ Dementia Advisory Group, a national network of people committed to improving support.

Why do LGBTQ+ people affected by dementia need specialised support? 

It is often assumed that the cultural and legal changes of recent years mean that homophobia is a thing of the past, at least in the UK. “There’s a lot of people who think, ‘It’s ok, it’s all changed, we have gay marriage now,’” says one gay carer. “People ask – why do you need to be separated out from the mainstream? Why do you have to have these special groups?”

But – if you don’t identify as LGBTQ+ yourself – just imagine what it was like to grow up in a world where homosexuality was classified as a mental disorder, sex between men was a criminal act, lesbians were “unfit” to be mothers, gay relationships – however faithful or long-lived – had to be disowned in public, and being transgender was almost literally unthinkable.

Deep scars remain from earlier wounds – and, even today, LGBTQ+ people living with dementia often report examples of discrimination by health and care providers. Some dare not approach services for help, as they are afraid to reveal their sexuality or gender identity because of past negative experiences.

Some services either deny the existence of older LGBTQ+ people – “We don’t have any gay people here, they’re all over eighty!” – or claim to be inclusive, because “We’re not prejudiced – we treat everyone the same.”

But LGBTQ+ people affected by dementia do not want to be treated as “the same” as everyone else. They often dread the idea of moving into a care home where they will be the “only gay (or trans person) in the village”. They fear that at best they will be isolated and invisible, at worst, disrespected and possibly mis-gendered, especially if they lose capacity to make decisions for themselves. “I have never been heterosexual,” insists a member of Speak Out with Dementia. “Consequently, I do not want heteronormative care imposed on me, particularly at the end of life.”

Gay couples often complain that their relationships are not perceived by health and care staff as equivalent to those of heterosexual couples. One carer says, “I think there’s an assumption that gay people don’t have meaningful relationships, that they are not the same… I get that message quite a lot in subtle ways, that we’re not as valid. We’ve been together for 46 years. I feel like saying, ‘What part of a loving relationship are you not seeing?’”

LGBTQ+ people who were long ago rejected by their family sometimes find that if they develop dementia, a relative suddenly appears on the scene and is accepted by services as the “primary carer”, excluding the person’s long term same sex partner (or devoted friend) from involvement in decisions about their care.

Services may also need to re-think some of their long-established practices. Therapeutic interventions such as reminiscence groups which work well for the majority population may be distressing for someone from a minority community: they may trigger painful memories of past discrimination and even replicate the experience of rejection and exclusion in the present. It should be recognised that people from minority communities may experience racism, homophobia or transphobia from other service users, and services should plan how they will deal with this.

Support groups targeted at a minority demographic can complement mainstream services and provide much-needed emotional support for people at their most vulnerable.

Speak Out with Dementia

Speak Out with Dementia is a safe space for LGBTQ+ people who are adjusting to the challenges of living with dementia to support each other and express their own thoughts and feelings, knowing that their life experiences, relationships and identity won’t be questioned.

The group meets once a week on Zoom. Members are aged between 51 and 83, and often describe themselves as a “family”, although they have never yet met in person. There is no set agenda for the meetings. The atmosphere is relaxed, and members talk about whatever they like – diagnosis, care-planning, daily challenges, past and present relationships, experiences as LGBTQ+ people, favourite films and music… They listen carefully to each other, make space for less confident people to contribute, comfort each other if someone is upset, and laugh and joke when the mood takes them.

Speak Out with Dementia began as a pilot project in November 2020, with a small amount of funding from the National Lottery Community Fund. Meetings were co-facilitated by Aimee Day and Lucy Whitman. Since April 2021, it has been funded and supported by Opening Doors, the UK’s largest charity supporting older LGBTQ+ people.

It was conceived from the start as an online-only group, partly because it was impossible to meet in person at the time due to covid but also because LGBTQ+ people with dementia are often isolated in their local community and an online group open to people across the country was most appropriate for them. Affiliated to DEEP (the Dementia Engagement and Empowerment Project), Speak Out with Dementia embraces DEEP Values, which support people with dementia to be as independent as possible, helping to build and maintain confidence and resilience.

We decided early on that Speak Out with Dementia would be for LGBTQ+ people with a diagnosis of dementia only, without carers taking part. We recognised that when carers attend alongside people with dementia, carers often dominate the conversation, and people with dementia may not find it easy to make their voices heard. This can compound the loss of independence, self-determination, and self-esteem which people often experience after receiving a diagnosis of dementia. We believed it would be more empowering for LGBTQ+ people living with dementia to have a space to speak for themselves, engage with each other and set their own agenda.

Members of Speak Out with Dementia have often said how beneficial they have found it to be in a group where they can talk freely and have their opinions and experiences valued by others who understand the challenges they are facing:

  • “I feel so much better. You have no idea how healing and how helpful it is being in the company of everyone.”
  • “This is the one place we can just be ourselves.”
  • “I am really happy I am part of the Speak Out with Dementia group. It has made a difference to me to be connected with other LGBTQ+ people with dementia. I now feel very supported on my dementia journey.”

LGBTQ+ Dementia Advisory Group

 Once Speak Out with Dementia had been successfully established, the steering group reinvented itself as the LGBTQ+ Dementia Advisory Group, and invited new volunteers from LGBTQ+ organisations and national dementia charities to join in, so we could share what we had learned and connect with others doing similar work across the country.

The aims of the Advisory Group are to offer regular networking opportunities, to share knowledge, ideas and resources, and to disseminate best practice on how to support LGBTQ+ people. In May this year the group organised a series of awareness-raising webinars, which attracted more than a hundred participants.

It meets monthly on Zoom, with a regular slot for guests to present their work (eg, a relevant research project) or to ask for help in making their service more inclusive and accessible. The Advisory Group is keen for more people to get involved, and would love to hear from anyone who has experience to share, or wants to learn more about how best to support people affected by dementia who identify as LGBTQ+.

You can get in touch at lgbtq.dementia@gmail.com.

For the DEEP Values, go to www.dementiavoices.org.uk.  Opening Doors is at www.openingdoorslondon.org.uk. And the LGBTQ+ Dementia Advisory Group can be found at www.lgbtqdementiaadvisorygroup.net.