Opinion

LGTB+: Living with Dementia

Natasha Howard, Senior Innovator, Alzheimer’s Society

There are over 850,000 people in the UK living with dementia. Some of these people are LGBT+, yet many aren’t getting the support they need.

Everyone’s experience of dementia is unique, but there are many additional challenges that are specific to a person’s sexual orientation or gender identity such as;

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  • LGBT+ people with dementia who have faced discrimination or stigma may feel forced back into the closet, or their dementia could mean they feel they are still living in those times
  • Trans people with dementia may go back to a time before they transitioned
  • Some LGBT+ people say they feel isolated as they may have no long-term partner or family to support them.

Stigma is one of the biggest challenges people with dementia from LGBT+ communities have said they face.

Alzheimer’s Society worked together with people affected by dementia, national and local organisations and LGBT+ communities in the development of the Bring Dementia Out innovation in 2018 to 2019, including testing the initiative in Brighton and Hove and in Greater Manchester.

It aimed to help LGBT+ people affected by dementia feel more comfortable in coming forward to access the information and support they need.

Other organisations (the LGBT Foundation, the National LGB&T Partnership, Switchboard, the National Dementia Action Alliance and the Guinness Partnership) are now working together to help scale ‘Bring Dementia Out’ on a wider level.

One of the areas we needed to explore as part of ‘Bring Dementia Out’ was around the frustrations and discrimination that LGBT+ people affected by dementia experienced from communicating with health and social care professionals.

Some key steps were shared to help tackle this particular challenge. These steps were for health and social care professionals including GPs, care homes, hospitals and other organisations so they can provide people with dementia the individual personalised care they need and deserve:

  1. Raise awareness among staff and volunteers by reading and sharing stories about the experiences of LGBT+ people affected by dementia and inviting them to share their story at events
  2. Create a safe culture for LGBT+ people affected by dementia:
    • Look for training programmes and quality assurances about LGBT+ inclusivity, such as Opening Doors London
    • Use value-based recruitment – see Health Education England’s guidance – and refer to these values throughout everyone’s employment
    • Ensure any existing training, policies and publications that relate to dementia are LGBT+ inclusive (such as imagery, language and examples used)
  3. Ask open-ended questions which show you’re not making assumptions about a person’s relationships:
    • ‘Who is important in your life?’
    • ‘Who is your next of kin?’
    • ‘Who have you brought with you today?

As with any care-setting, appropriate and person-centred care for LGBT+ people with dementia must be provided to ensure that their needs are met. Many settings where health care is provided deliver heteronormative care and support, without considering how people affected by dementia identify.

The needs of people in LGBT+ communities should be considered to avoid discrimination in the same way you would with religion or disability, for example. Care staff need to ensure they are treating each person on an individual basis, while taking into consideration their needs and beliefs and not assuming their sexuality, gender or background.

To overcome the serious issue of stigma and discrimination within care settings, staff need to be upskilled through guidance on the challenges faced by LGBT+ people affected by dementia.

If you want to find out more about the ‘Bring Dementia Out’ work being taken forward, please contact Andrew Gilliver at LGBT Foundation on andrew.gilliver@lgbt.foundation.

Alzheimer’s Society is the only UK charity that campaigns for change, funds research to find a cure and supports people living with dementia today. You can learn more about the work we do by visiting our website alzheimers.org.uk

 

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