Transgender care home residents with dementia: 'What if capacity is lost?'

There is a growing transgender community that will need to be cared for by nursing and residential homes in the years to come and mental capacity is an unexplored area for future trans care home residents who may develop dementia.

Credit: Joanne Lockwood

For example, would a person’s gender identity survive dementia, or would it be mixed up in the condition? What if the children of trans residents don't accept their parents as being trans and the resident is deemed to lack mental capacity?

Joanne Lockwood is the founder and chief executive of SEE Change Happen. She featured in, and was a contributor to, the Channel 4 documentary - “The Making of Me”, broadcast in February 2019, which documented her own personal gender transition and its impact on those around her.

She advises companies about trans identity and inclusion and has worked with many NHS Trusts and CCGs and admits some aspects of care for older trans people are unknown, saying: “In a dementia scenario a person may have forgotten who they are, either one way or the other.”

‘Some may not respect that dad is trans’

No one knows how big the trans community is in the UK mainly because it isn’t asked in the census and there isn’t any research that’s been done that covers enough people to be statistically significant, according to LGBT+ campaign group Stonewall.

The best estimate at the moment is that around one per cent of the population might identify as trans, including people who identify as non-binary. That would mean about 600,000 trans and non-binary people in Britain.

Care homes haven’t seen a significant number of trans people entering their settings as yet and for this reason there may not be enough data to know the answers to some crucial questions.

Ms Lockwood says transgender identity in those with dementia will probably be affected by memory problems and will almost certainly require some learning on the job. She says: “Some people may have had surgery, and that may scare them every morning”.

She compares the scenario to if someone is an amputee – can they remember losing an arm or leg if they develop dementia? What happens if they don’t? Then there are also mental capacity issues.

Many trans people in care will have had children and they are likely to be a major part of their care.

Ms Lockwood advises when dealing with families to, “Just be aware that the complications and intricacies of the person and the people around them - some may not respect that dad is trans – so if the capacity gets lost, who is more right?”

She also suggests: “Do you say if this person doesn’t accept themselves with dementia, do you help them de-transition? What’s the policy there, for their best care?

Credit: Joanne Lockwood

“It may well be if they think they are a man every day then maybe it's for staff to help them be that man every day.”

In recent years many people are starting to write care plans for later in life just in case they develop dementia or lose capacity in some way – the idea being to help future care environments deliver person-centred care. Ms Lockwood thinks this would be particularly advantageous for those who are transgender.

She says: “Maybe we should be putting information out there to GPs and to the gender clinics and ‘into the wild’ to encourage trans people to start thinking about their own care and how they can help themselves later.”

Education, education, education

Ms Lockwood mainly consults on diversity and inclusion for businesses within the area of transgender awareness and says she likes to talk about it in various ways; as a co-worker in a team, how trans people fit in, as a supplier - interacting with clients from a service point of view, and then – “In the care sector and in hospitals it’s about family friends the 360 of that person”.

She is emphatic that education and not making assumptions is crucial to delivering person-centred care for the trans community.

Whilst Ms Lockwood believes education is one of the most fundamental areas where care homes can help themselves to prepare for the rise in transgender residents, she insists there are other obstacles as to why transgender people find themselves being neglected as patients including:

• Fear of getting it wrong

• No experience of trans identities

• Lack of buy in from the board/senior management team (lack of priority)

• Inflexible IT systems - normative forms etc

• Gaining trust

• Maintaining confidentiality

• Supporting those with failing capacity

• Media led biases and misunderstanding

• The 360 aspect when considering the care user together with their families and friends

Sometimes it's just thinking about the little things that help trans patients to feel more comfortable in healthcare and care environments.

Ms Lockwood points out that: “Just because someone looks trans, doesn’t mean to say you’ve to get it out of them that they are. If they transitioned 50 years ago the last thing they will want to be talking about is being trans.”

‘Matronly’ hospital staff sometimes not prepared to ‘play your game’

Care homes aren’t seeing many trans people entering their settings just yet, but Ms Lockwood believes management and staff can still learn valuable lessons by looking over the fence at healthcare to see what hospitals and other healthcare settings are doing well (or not doing well).

Credit: Joanne Lockwood

Both the healthcare and care sector need to make sure trans people are ‘medically’ cared for, that their dignity is respected and their care needs are understood.

Ms Lockwood believes education is imperative to achieve these aims, something which the healthcare sector is starting to think about as they are several steps ahead of care homes, out of necessity, but she believes there is still a way to go.

She explains: “I think there’s this expectation from a trans perspective that the healthcare or care community are trained and knowledgeable [about trans identity] because inevitably, being trans has a sort of medical aspect to it. However, people tend to understand Alzheimer’s or asthma for example - but as a trans patient they feel that people should understand them as a person, and often, they don’t.

"I come across it in hospitals sometimes where they are so focused on fixing you or dealing with you they forget about the impact of the lack of respect and understanding from consultants or senior members of staff - who are old school and matronly and have the attitude of ‘stop messing about’; it’s like they are almost not prepared to ‘play your game’."

Ms Lockwood believes a lack of thinking is behind much of this behaviour and it leads to a lack of dignity.

She says: “It’s silly little things like if someone is in bed and they need a bed pan, the shape of the bedpan being walked into the ward can say a lot about what the person has got under the covers!”