Pride in Dementia Care: What are the unique challenges and concerns for those within the LGBTQ+ community living with dementia?

Everyone experiences the challenges of dementia in their own individual way, but those within the LGBTQ+ community may face an additional and unique set of challenges and concerns to living with dementia and accessing healthcare services compared to the general population. Some of the symptoms of dementia, such as memory loss, can have particular implications for those within the LGBTQ+ community.

Memory loss is, perhaps, one of the most difficult symptoms to deal with for both the person with dementia and those closest to them. Dementia is a progressive condition, and research has shown that, as it progresses, past traumas, anxieties, and experiences may resurface. This presents challenges for those in the LGBTQ+ community as some may not remember that they have “come out”, or who they have told, and thus re-live fears and concerns about their gender identity or sexual orientation, both internally and externally. Gender-diverse individuals, additionally, may not remember transitioning and again struggle to relate to their acquired gender or feel triggered by early memories and pictures prior to transitioning. Some things, such as appearance and medical history, can also make it difficult for the person living with dementia not to disclose aspects of their identity. Or the person might be unable to stop themselves from disclosing this information by mistake. For example, a person may unintentionally refer to a partner, inadvertently “outing” themselves. It is important to have a discussion on this with those you trust, and what you would want to happen if this occurs, such as whether you would be happy to be “out” to healthcare professionals or other residents in a care home if these are your plans. 

Gender-diverse individuals may have complex physical needs as a result of medical procedures or treatments, such as long-term hormone therapy, and living with dementia can make it difficult to manage these. Memory loss and problems with planning can make it difficult to remember to take medication. It may be worth trying to find practical strategies to help cope with this, such as automated reminders.

As dementia progresses, older memories are more likely to persist while newer memories fade. This means that a person living with dementia may remember their childhood better than recent years, and this can sometimes cause distressing symptoms for those within the LGBTQ+ community. Those who have experienced prejudice and discrimination earlier in life, such as conversion therapy, can have these memories return, making them feel unsafe. The person might go back to a time before they “came out” or transitioned. Or they might find their ability to remember this comes and goes. This can make practical day-to-day things, such as going to the toilet, confusing and difficult. These symptoms can vary from person to person, the dementia stage, and how recently the person “came out” or transitioned. In some cases, you may need to access services for both genders. It is important to plan ahead to ensure that your gender identity and sexual orientation are recognised and respected, and the Alzheimer’s Society provides information on how to do this here.

Reminiscence Therapy helps stimulate memory by discussing past events, often in a group setting. However for LGBTQ+ individuals, this can sometimes resurface traumatic experiences. This activity helps a person to see their life as a whole, recognising their experiences and achievements, and focusing on their skills and interests to help remind them of who they are. However, thinking and talking about the past can be difficult if there are anxieties and traumas of prejudice and discrimination. Therefore, it is important to think carefully about whether this is something you may want to do. If you do decide that reminiscing may be beneficial to you, you may also find it helpful to keep a journal documenting your memories or life history. This can include information and keepsakes from your past, allowing you to reflect on significant experiences and memories that help others know more about what is important to you. 

Issues relating to our identity are sensitive, and you may find the difficulties caused by dementia distressing. Or you may feel worried about problems developing in the later stages of your condition, such as needing help with personal care. This may be something you do not want to think about at the moment, and it is important to take things at a pace that you feel comfortable with. You should talk to someone—family, friends, a partner, or a professional, such as a counsellor—who can help you if you are worried about anything. The Alzheimer’s Society provides more information on what support is available and how to access it here.

Other unique challenges and concerns that those within the LGBTQ+ community living with dementia may face include:

• Discrimination, judgement, and prejudice. 

• Unequal treatment compared to cisgender and heterosexual individuals.

• A lack of recognition of “families of choice” and assumptions regarding relationships.

• An invisibility of LGBTQ+ carers which can lead to exclusion from life-changing decisions, such as advance care planning.

• Inappropriate curiosity about their gender identity and sexual preferences.

• A lack of specialised support services and resources that meet their specific needs.  

• An increased prevalence of depression and social isolation leading to poorer health outcomes.

These unique challenges and concerns can lead to poor health outcomes where those of the LGBTQ+ community who are living with dementia are reluctant to engage with healthcare services. This could be anywhere from avoiding being open and honest about aspects of their life which may be affecting their mental and physical health to avoiding accessing healthcare altogether. It is, therefore, important to have a service in place that will ensure inclusivity remains at the core of the care and support provided.

“People living with dementia may start to explore or express parts of their identities or desires that are a surprise to their loved ones. For people already grappling with the diagnosis and disease this may feel like too much to handle, but well-trained and open-minded staff can help ensure that the person with dementia is given the space to express themselves, and help family members understand these changes.”

— Tim R. Johnston, Director of National Projects, SAGE, Issues Brief: LGBT and Dementia, Alzheimer’s Association.

Helpful Tips for Health Professionals:

• It is important to remain mindful that the relationship between people may not always be obvious, so it is best to avoid making assumptions about a person’s gender identity, sexuality, and relationships. One example of this would be not to assume that the person who accompanies the individual with dementia to appointments is their sibling or friend rather than their same-sex partner. 

• It is important to remain mindful of a person’s “family of choice.” A person from the LGBTQ+ community, for various reasons, may not have biological family support and therefore consider others who they have close relationships with as family. You should consider this when important decisions are made, such as advance care planning, so that those who are closest to the person have every opportunity to be involved.

• You might want to ask open questions, such as, “Who are you closest to?”, to help encourage a conversation about the person’s life and relationships without being evasive or insulting.  This gives the person with dementia the opportunity to disclose any information about their gender identity and sexuality that they would like to share without feeling the pressure of having to.

“I think there needs to be more training of people in the dementia field…the LGBT community has unique needs…many of us don’t have biological families or children…people in my generation are dying of HIV or aging and can’t help me…people are isolated and won’t always seek services.”

— An LGBTQ+ Individual Living with Dementia, Issues Brief: LGBT and Dementia, Alzheimer’s Association.

Helpful Tips for Family and Friends:

• You should disclose to healthcare professionals only what you feel comfortable with, and though providing information on a person’s gender identity and sexual orientation may significantly help the professional provide person-centred care, there is no obligation to do so. 

• You should also be aware that gender identity and sexuality may fluctuate in people living with dementia. A person with memory issues may forget that they have “come out”, leading to renewed anxieties about others discovering their identity – despite it already being known. However, experiences vary from person to person. Some transgender individuals may experience memory gaps related to their transition, causing distress. It is important to ensure that gender identity is respected at all stages of dementia. Or, sometimes, a person with reduced memory may unintentionally disclose their gender identity or sexuality where they have chosen not to before which can have implications upon them and their partner.

• You should be mindful of the person’s life experiences, and that though reminiscence may be beneficial for many people with dementia, certain memories may trigger past trauma caused by abuse, discrimination, or prejudice. 

• You might consider putting together a record of important information about the person, such as a life story, which can include details of their gender identity or sexuality. This can then be given to healthcare professionals who are involved in their care.

• You should never hesitate to report any discrimination or prejudice from healthcare professionals as this can help to lead to positive changes in how they support those living with dementia in the LGBTQ+ community. 

Here are some links to information about specific groups that LGBTQ+ individuals and carers may find useful:

• Age UK Directory of LGBTQ+ Support Groups — This is a directory of various social groups for older people, and there are plenty that are specifically for those of the LGBTQ+ community.

• LGBTQ+ Dementia Advisory Group — This is a network of people who support those of the LGBTQ+ community who live with dementia.  

• LGBT Foundation — This is a charity for LGBTQ+ health and wellbeing.

• Speak Out for Dementia — This is an online peer support group for those of the LGBTQ+ community who live with dementia.  

• Rainbow Call Companions — This is a telephone befriending for those within the LGBTQ+ community over 75.  

Please feel free to comment other support available!