Queering up dementia care: the next steps

Parish M, Bond JA (2023) Queering up dementia care: the next steps, Journal of Dementia Care 31(5)33-35.

Author details

Mike Parish cared for his husband Tom Hughes for eight years and is a long-standing advocate for the rights of LGBTQ+ people with dementia and carers. John Angel Bond is a former social care worker, now researching the experiences of LGBTQ+ people affected by dementia as a PhD student at the University of Stirling, alongside being an unpaid carer for his mother.

LGBTQ+ people affected by dementia have experienced a lifetime of discrimination and their needs often go unmet.  Mike Parish, John Angel Bond and colleagues describe the process of transforming a small group of passionate volunteers into a community interest company committed to changing things for the better.

Key Points

On our journey to become a CIC – a community interest company – we have learnt that:

  • Involving people living with dementia is essential in efforts to influence policy and service delivery.
  • The participation of people living with dementia to shape our group has been a vital ingredient in our success.
  • Individuals with a shared interest are willing to give up their time to drive change.
  • At any time, someone’s capacity or understanding may change, so it is essential to have the right support networks in place.

There is an increasing body of research and personal testimony demonstrating that LGBTQ+ people affected by dementia do not receive an acceptable level of care (Harper 2019, Hafford-Letchfield 2022). It is a community that has long experienced discrimination in statutory, private and third sector care support.

Navigating support that doesn’t feel tuned to your needs or identity or long held fears of being able to express yourself openly without encountering prejudice or humiliation creates huge barriers to those trying to access dementia care, especially when you factor in cognitive decline (Clayton 2023, Ettenes 2023). Despite legislation and the positive efforts of some organisations to deliver safe and appropriate care, services are still extraordinarily patchy, unreliable, and not fit for the twenty-first century.

Without clear pathways to safe and relevant support there is a danger that those needing help will experience an extremely negative journey that will lead to isolation, a lack of timely interventions and a rapid decline in well-being, hastening cognitive decline – in other words, the absence of the very minimum healthcare we should expect from providers.

In the dementia world, LGBTQ+ voices are currently few and far between which is the result of a lack of attention to this minority over many decades. Those who do come forward to seek change and improvements in dementia services can feel lonely and isolated. One person cannot change the vast statutory and formal and informal dementia infrastructure alone.

Forming the Advisory Group

Once motivated by personal circumstances, it’s almost impossible not to want to help others through the confusing tangle of the dementia pathway and, most importantly, to challenge the lack of equality and diversity in dementia services and stop the cycle of struggling for safe spaces, respect and understanding.

In the absence of national policies to change this, it has been left to individuals and small third sector organisations to collaborate to provide peer support, information, and reassurance, as well as to highlight these unfair experiences and influence change wherever possible.

Following the pioneering efforts of Sally Knocker, who established the first Rainbow Memory Café for LGBTQ+ people with dementia and carers at Opening Doors London in 2017, and partly in response to the additional isolation we all experienced during the pandemic, several peer support groups for LGBTQ+ people affected by dementia, both online and in-person, have been created in different parts of the UK over the past few years.

People involved in these groups soon recognised that we had crucial knowledge and experience to share, and as a result, a group of volunteers created the LGBTQ+ Dementia Advisory Group in 2021. The Advisory Group is led by people who identify as LGBTQ+ and are either living with dementia, caring for someone with dementia or working in the dementia field as practitioners or researchers, with staunch support from allies in the voluntary and statutory sectors.

The need for an advisory group like this has been amply demonstrated since we came into being. We have been contacted more than fifty times with requests for help and information, and invitations to take part in projects including:

  • invitations to speak at specialised conferences and events.
  • involvement in research projects concerning the experiences of sexual/gender minorities within the realm of dementia.
  • advice on the production of LGBTQ+ films and television series, both in the UK and Europe.
  • advising several dementia service providers on how to make their services more inclusive.
  • influencing policy and procedures both on a local, national, and international level.

There are enormous demands on our time, but our passion to be involved gives us energy and drives the group speedily forwards.

We conducted a very well-received two-part online webinar with more than 300 online attendees during Dementia Action Week 2022 (LGBTQ+ Dementia Advisory Group 2022). We also designed a poster and delivered an awareness workshop (which quickly became over-subscribed) at the 2022 UK Dementia Congress.

We recently received a referral enquiry from Stonewall. This is an incredibly important step for our organisation: to be recognised by other leading LGBTQ+ based charities for the work we are doing, and to be seen as the “go to” organisation for information relating to dementia – because members of this community who need to find out more about dementia are likely to seek reliable LGBTQ+ friendly sources.

Why become a CIC?

It quickly became clear that this group of like-minded individuals, experiencing or working in dementia services, could raise awareness and influence dementia service provision through our activities. But a band of volunteers, however competent and knowledgeable, in a group without a formal structure, can only influence wider policies so far. We found that we would not be eligible to apply for grants to support projects we have the expertise to deliver without setting ourselves up as a social enterprise or charity, with legal mechanisms for accountability. So as a group, we explored the options available to become a recognised, authoritative organisation.

In May 2023, the LGBTQ+ Dementia Advisory Group became a community interest company (CIC). This is a special type of limited company which exists to benefit the community rather than shareholders. A CIC is an excellent solution to enable the group to move forward and expand its activities to match our mission statement.

Using co-production

In transforming the LGBTQ+ Dementia Advisory Group into a CIC, we are committed to the principles and practice of co-production. Co-production is a way of working where service users and providers collaborate to reach a shared outcome.  The co-production route is values-driven and is based on the principle that those affected by a service are beneficially placed to help design it (Realpe & Wallace 2010, SCIE 2022).

Many dementia organisations and services are still run by professionals who decide what is best on behalf of people who are living with dementia (Baldwin 2008). But co-production stemming from solidarity and collaboration between people with shared experience and knowledge is one of the most effective ways to bring about change. In our case, it means that people living with dementia who identify as members of the LGBTQ+ community are fully involved in all the decisions and activities of our organisation. This is incredibly empowering for all participants and provides a strong sense of purpose and well-being.

People with dementia and carers have always been at the heart of all the activities of the LGBTQ+ Dementia Advisory Group, and co-production is our default method of operation. Thus, we practised co-production in the very process of setting ourselves up as a CIC, with the members of the group who are living with dementia fully involved at every stage. We are currently finalising our strategy that outlines our mission, values, and objectives for the next three years.

The lived experience of people affected by dementia who identify as LGBTQ+, with personal knowledge of the LGBTQ+ community and its history, are essential ingredients in creating an organisation which truly meets the needs of its members and beneficiaries. Our messages are heartfelt and authentic, coming from people with shared experiences working together, and this gives our organisation gravity and authority.

To get in touch with us, please email info@lgbtqdementia.org

Postscript

After we had written this article, we came across this recent account of serious homophobic abuse in a London care home: www.theguardian.com/society/2023/jun/01/noel-glynn-ted-brown-homophobic-abuse-care-home-croydon-london

This case is shocking not just because of the criminal abuse which took place, but because of the discriminatory culture within both the care home and the enforcement authorities, which meant that timely, proportionate action was not taken when the abuse was reported. Although this is of course an extreme example, it does illustrate why LGBTQ+ people affected by dementia do not always trust care providers to respect their human rights, and why we need a strong voice advocating on our behalf.

References

Baldwin C (2008) Narrative, citizenship, and Dementia, The personal and the political.  Journal of Aging Studies 22(3) 222 – 228.
Clayton D (2023) I want to be the orchestrator of my entire fabulous life. In Ward R & Sandberg L, Critical Dementia Studies: An Introduction. London: Taylor & Francis.
Ettenes P (2023) Who knew a pothole could bring it all back? In Ward R & Sandberg L, Critical Dementia Studies: An Introduction. London: Taylor & Francis.
Hafford-Letchfield T (2022) LGBTQ+ Learning Framework. Leeds: Skills for Care, available online at www.skillsforcare.org.uk.
Harper P (2019) How healthcare professionals can support older LGBTQ+ people living with dementia. Nursing Older People 31(5) 16 – 21.
LGBTQ+ Dementia Advisory Group (2022) Our Projects. Available online at www.lgbtqdementiaadvisorygroup.net.
Realpe A, Wallace L (2010) What is co-production? London: Health Foundation. Available online at qi.elft.nhs.uk/wp-content/uploads/2017/01/what_is_co-production.pdf.
SCIE (2022) Co-production: what it is and how to do it. London: Social Care Institute for Excellence, available online at www.scie.org.uk.