LGBTI people living with dementia often delay or avoid accessing aged care and health services, research at La Trobe University has found. The Still Gay report, the first of its kind in Australia, examined the unique effects of dementia on people who identify as gay or transgendered.
“Before this project there was no research documenting the experiences of LGBTI people with dementia,” said Dr Catherine Barrett, author of the report.
Barrett explained that even in academia, there can still be found professionals who believe an LGBTI person with dementia will eventually become straight or lose their gender identity as the disease progresses.
“We decided that we wanted to do some research to find out what LGBTI people were experiencing themselves, in their own words.” The researchers interviewed 10 same-sex couples, and partnered with another on-going project focusing on transgendered people in aged care.
The interviewees’ responses were unanimous: they were still most definitely gay or trans, a diagnosis of dementia notwithstanding. Barrett remembered one of the lesbian couples describing this in the following words: “Sexual orientation is not a rinse colour you put through your hair. It’s something fundamental to who you are and how you relate to people, and that doesn’t disappear just because you have dementia.”
What Barrett and her colleagues found, in fact, was that the most adverse effect on the sexual or gender identity of a person with dementia came from the people around them, not the disease itself.
“It was the values and beliefs of family members, and some service providers,” Barrett said. “If they were transphobic or homophobic, then that was what had the devastating impact on LGBT people with dementia.”
To illustrate the point, Barrett told the story of a transwoman who had gender reassignment surgery and had lived as a female for 40 years.
“Her adult children were terribly embarrassed about the fact that their parent had transitioned,” Barrett explained. “And when it came time for her to go into residential aged care they said, ‘If you go in there as a female, you’ll never see your grandkids again.’
“This was a woman who had some dementia, who clearly wanted contact with her children and her grandchildren. So she actually let go of her gender identity if you like, and went into residential aged care as a male.”
Negative factors that affect LGBTI people with dementia in particular include a fear of discrimination by service providers, lack of support for their partners caring for them at home, and a loss of uniquely important social networks.
“Friendships drop off across the board for people with dementia,” Barrett said. “But for our participants there was a double whammy. For an LGBTI person with dementia, […] those friendship networks were extraordinarily important because in some cases they had replaced lost families.”
Barrett said service providers are in a powerful position to alleviate these problems: “Do some work with families to try to help families come around, so the resident can enjoy their rights to not only be herself, but also maintain some kind of contact with family members.”
If there is one thing she hopes the project can achieve, it is to get the aged-care sector to officially recognise the legitimacy of the identities and relationships of LGBTI people.
“One of the really strong recommendations from the project is around developing advanced care plans, or guardianship, or powers of attorney, early,” Barrett said. “We think a lot of the angst identified in the interviews could be avoided if there were advanced care plans documented.”
For Barrett, both the issue and what to do about it are clear.
“We need to understand that LGBTI people still are LGBTI, even when they have dementia,” she said. “Same-sex relationships need to be recognised, and also gender identity needs to be recognised. That’s the fundamental starting point.”
“Thank you so much. We could not have gotten through the last week without the help from your team. They were all so supportive and were such wonderful nurses.”
“Jackie (Regal Nurse) gives you a feeling of security. She knows what she is doing, she lets you know when she is coming next time”
“The Regal Nurse would make sure I was dry – even between my toes.”
“The Occupational Therapist in the hospital defined all the in home care we had to have – one of the Nurses recommended Regal and said they provided 7 day care. I got in touch and we went from there”
“If I lost him (the Regal Nurse) I’d feel bereft. It’s almost like when you are a soldier, you have that mentality of a band of brothers”
“Herb (Regal Nurse) is very caring.”
“I could not fault the service. All the nurses were pleasant and very efficient. All the staff were very obliging and attentive”
“I found the nurses to be very helpful and caring”
“I am very happy with the treatment I have received from the Regal Community Nurses”
“In the environment in which you are delivering services to the community, the ideas of others I thought were enlightening and I felt that you showed a keen awareness to listen and learn.”
“Your staff were efficient, courteous and knowledgeable. This was a great service enabling me a limited stay in hospital. Grateful to use your service twice this year – I am so glad I only have two knees! Thank You”
“As the grand-daughter of a soldier who served In both World Wars I and II, I feel privileged to lead a home health service that cares for so many whose lives have been impacted by war”
“At all times Regal Health Services has displayed excellent interaction with the patients. We always find the staff display the highest professional integrity”
“Regal believes in quality and is prepared to be publicly scrutinized to attest to this quality in process and performance”
“I am a 91-year-old ex-serviceman and have been receiving help from Regal Health Services for some considerable time and I can’t speak highly enough of the health benefits I have received from them. My Nurse has helped me recover from numerous accidental falls on discharge from a hospital. Her happy disposition and general demeanor has a psychological healing effect in itself”
“I had three uncles who served in World War II who shared with me their many experiences of war and wisdom passed down through generations. I am grateful for the many sacrifices our war veterans have made that allow us our freedom today”
“Regal have been market leaders for 2 generations in promoting consumer empowerment and registered nurse led professional care in community health. Their commitment to measurable quality outcomes and sheared decision making promoting innovative models of care is outstanding. I can only wish them success as the real winners are the recipients of care in their homes.”
“We are forever grateful to Nicholas for locating our mother who would not have survived for many more hours in her situation. Nicholas called the ambulance and stayed with our mother until help arrived. Nicholas also stayed onsite to provide information and answer questions from the emergency personnel (Medical, Police, & Fire Department) & information to her family.”