LGBTQ+ Older Carers
LGBTQ+ older carers: An exploration of their health and social support needs
It is estimated that 5.7 million adults are currently providing informal care to individuals aged 50 and older in the U.K. (ONS, 2021). Whilst in Wales there are an estimated 370,000 unpaid carers of all ages. However, there are no clear statistics on Lesbian, Gay, Bisexual or Transgender (LGBTQ+) unpaid carers. The Office of National Statistics (ONS) calculates this figure at 1.5% of the population (based on the estimates from Stonewall [2017]) that 3.7 million people in the UK are LGBT, and Carers UK (2022) estimates there are 390,000 LGBT unpaid carers in Britain. The majority of the LGBTQ+ specific research and studies have been conducted in either the US or UK, with a dearth of work being undertaken within a Welsh context, especially in regard to the needs of LGBTQ+ older carers in North Wales. Therefore, a small study was undertaken by members of the nursing team, together with external partner organisations to further explore and illuminate the social care and support needs of LGBTQ+ older carers in North Wales. It is anticipated that the project will contribute to the development of interventions with this marginalised population. Thus, helping shape future social care services, policies and research that will ensure care is welcoming for all people.
An online questionnaire directed towards older LGBTQ+ carers (50+ years) across North Wales was hosted by the JISC online survey site, and widely advertised via the University’s social media outlets, relevant local LGBTQ+ groups (Facebook sites and other social media mediums) together with our partner organisations’ contacts and communication systems.
A small sample had been anticipated due to the relatively small LGBTQ+ community in North Wales, together with the narrow demographic focus of the research participants. Overall, 10 participants took part in the study, the majority of these identified as lesbian and between the ages of 55 – 64, with only one respondent identifying as transgender.
Not surprisingly, the lives of both the person being cared for and the carers had been drastically, negatively impacted by their illness/disability. With the majority identifying multiple sources of stress, including loss of employment, exhaustion from the physical aspects of caring, loss of their own life, social isolation and a worsening of their mental health.
When exploring the potential impact of their LGBTQ+ identity on their caring role and interactions with the care systems, 50% of the participants had negative experiences with agencies and care staff.
The main problem identified was the dominance of heteronormative practice by staff. This meant that the carers were repeatedly having to ‘come out’ to care staff – which they found added to their stress and exhaustion.
A number of themes were identified by the participants which they would find useful in being supported in the caring role, namely:
- The provision of LGBTQ+ sensitive care and less assumed heterosexuality by care staff
- More frequent visits by care staff
- A listening ear and greater understanding from society
- Easier navigation through the health and social care systems
- More financial help and advice.
This study reinforces and informs literature on LGBTQ+ aging and considerations given to the lives and needs of older LGBTQ+ carers. Furthermore, the main areas of concern that arose in this study have implications for practice and the policies that inform them.
The experiences described by the older LGBTQ+ carers in this study very much reflected the experiences of older carers generally and those previously identified within the LGBTQ+ carers literature, primarily around the devastating consequences on the lives of the carer and the person for whom they are caring, of ill health and disability. This impacted on all aspects of these people’s lives and often led to great stress, social isolation, financial loss and increased problems with their mental health. Added to this is the feeling of ‘loss of self’, becoming invisible as a person, simply becoming the carer and no longer a person in their own right. The picture given is one of people who are really struggling with the burden of care, often feeling unsupported by the health and social care services and by society in general. Feeling lost whilst trying to navigate their way through complex systems whilst trying to get the care and support needed by both their loved one and themselves.
Added to this ‘general burden’, the respondents in the study identified that they felt an extra layer of discomfort as they frequently experienced heteronormative practice from the staff within health and social care service/agencies. They felt it was necessary, in order to have the nature of their relationships validated, to have to ‘come out’ to the staff multiple times; this being experienced at a time of exhaustion and great vulnerability. The respondents identified the need for health and social care staff to provide LGBTQ+ sensitive care. They also identified a need for greater understanding of their situation by society in general and also from members of the LGBTQ+ community.
Study recommendations:
- A larger scale exploration of the care and support needs of older LGBTQ+ carers across Wales. This could be achieved as part of the research component of the Welsh Government’s LGBTQ+ Action Plan for Wales (2023).
- The outcomes of this study be made widely available to health and social care providers and carers’ support agencies, to help shape policy and practice.
- Develop and implement staff awareness training, particularly for staff working in social care and carer support agencies. Training to provide examples of lived experiences and concrete examples of best practice.
- Wider dissemination and adoption by care and support agencies of the existing LGBTQ+ Carer support toolkits (Carers Wales & Cymru Pride, 2017, Carers UK, 2023).
- Development of LGBTQ+ older carers specific support groups and resources, both face to face and online.
The UK and Welsh Governments have taken important steps in the last few decades to improve the social conditions in which LGBTQ+ persons age. Recently, the Welsh Government has set out its vision to make Wales the ‘most LGBTQ+ friendly nation in Europe’ (Welsh Government, 2023). In order to make this vision a reality, a lot of work still needs to be carried out to create social environments and health and social care systems that are inclusive of diversity and able to appropriately support a diverse aging population.
