Australian-first research has documented the experiences and needs of lesbian, gay, bisexual and trans people living with dementia, and provided new guidelines for aged services.
The researchers said they also wanted to explore a common misconception that older LBGTI people “become straight” when they get dementia.
Interviews with 32 seniors, including seven who had dementia, as well as six service providers caring for a trans person, provided first-hand accounts to develop the guidelines and make recommendations for service improvement.
The study found that some LGBTI people with dementia lose the capacity to hide their sexual orientation or gender identity as their disease progressed and they experienced “inadvertent disclosure”, which was a significant source of anxiety for LGBTI people with dementia and their partners.
A fear of discrimination resulted in many LGBTI people delaying or avoiding aged care, which often resulted in their partners providing care beyond their capacity, the study found. It also concluded that LGBTI seniors living with dementia often experienced social isolation.
The study, which was a partnership between the Australian Research Centre in Sex, Health and Society at La Trobe University and Alzheimer’s Australia, also found that end-of-life decisions were contested by some families who did not want same sex partners making these decisions.
Family conflict, role for providers
The research documented the experience of a trans woman with dementia who was told by her children to enter residential aged care as a man or she would never see her grandchildren again. The woman, who had transitioned 40 years earlier, conceded to their demand.
Lead researcher Dr Catherine Barrett of La Trobe University said that if aged care providers were aware of how vulnerable LBGTI people living with dementia were they could better advocate on their behalf.
“One of the things we found was the attitudes or beliefs of family members in particular, and service providers, can have a more damaging effect than the dementia,” she told Australian Ageing Agenda.
In the course of the study many same-sex couples talked about family members, who had never approved of their relationship, appearing and trying to assert control or make decisions regarding medical care or finances. Some of the couples had to go through guardianship tribunals at a considerable emotional cost, Dr Barrett said.
“LGBTI people really need to be documenting powers of attorney and advanced care planning so there are clear guidelines for how decisions will be made and who will make them.
“Similarly for trans people, if family members are coming in and saying ‘I don’t respect your identity as a woman’, if someone has that documented in advance, then the service providers have something to go by,” she said.
Resource to support aged services
Dr Barrett said that a series of video interviews with some of the research participants would be released online next week and aged care providers and staff could use these to accompany the new resource, which outlined the needs of LGBTI people living with dementia and detailed key issues and strategies.
Aged care providers were being advised to watch the videos, read the case studies, and use the resource as a guide to facilitate discussion with staff about issues that may arise and strategies to deal with them, Dr Barrett said.
The research has been published in the Australian Journal of Dementia Care.
The resources are available on the Val’s Cafe website
The project will be formally launched at the National LGBTI Ageing and Aged Care Conference on 26-27 October in Melbourne.
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