Oct 18

Dementia doesn't discriminate, so neither should we

Posted: 25 October 2018

Dementia and diversity imageDuring our #embracediversity month we want to share advice about how to care and support individuals from BAME and LGBT backgrounds who are living with dementia.

Dementia affects around 850,000 people across the UK*. Estimates from the National Care Forum predict that the UK is home to 1.2 million older people who identify as lesbian, gay, bisexual or transgender (LGBT) and that there will be a projected eight-fold increase in the number of people from black, Asian and minority ethnic (BAME) communities developing dementia between now and 2051**

Older LGBT people with dementia are a minority that may have already experienced disadvantage, discrimination and prejudice, all of which may have impacted on their lives and experiences of care and support.

The Equalities Act 2010 means that services have a legal duty to address the needs of BAME and LGBT people affected by dementia, so if you work in an organisation that doesn’t currently care for people from a BAME or LGBT background, the changing demographics of the UK population today means you probably soon will.  

Care workers will need to understand and be aware of the needs of everyone who they provide care and support to. Their own experiences and beliefs will shape their own perspectives, and while this is entirely normal, staff will need to ensure this doesn’t negatively influence the care and support that they’re providing.

For example, older LGBT people are more likely to be single and to live on their own, are less likely to have children or regularly see family members and more likely to use social care services for help because they don’t have support from family. This places a greater demand on support services.

We’ve worked with the social care sector to produce a ‘Dementia and diversity’ guide which shares advice from services and managers who are already working with these minority groups. Although produced in 2016, the advice in the guide is still relevant, so we’re sharing some of the highlights with you.

Supporting people from a BAME background

  • There may be a stigma connected with dementia and diagnosis in some cultures/communities.
  • Some languages and cultures don’t recognise dementia - research has found that simple explanations are the best way to help people understand this.
  • People may be more reluctant to access advice and services - sensitive communication will be needed.
  • As dementia progresses, people will regress to a previous time/times in their life. If this was in a different culture/country/language, this is likely to have a profound impact. It’s particularly important to engage family and friends in finding out as much information as possible.

Supporting people who identify as LGBT

  • Don’t simply assume everyone in care is heterosexual.

  • Dementia can cause some people to lose their inhibitions. For some, this may mean they make inappropriate sexual advances and staff need to manage this appropriately and sensitively. Staff should also be aware that sometimes behaviour may appear sexual but may not be. For example, expressing a need for affection or mistaking someone for their current (or previous) partner.
  • Staff working in residential care homes need to be aware that people with dementia may wish to have a sexual relationship, including with other people living there. Key questions to ask include whether mutual consent is taking place, and whether both individuals have the capacity to make the decision.

  • Someone who is LGBT with dementia may well have lost their capacity to assess when and where it’s safe to disclose their sexual/gender identity. And dementia can be exposing - increasing cognitive impairment and confusion can lead to inadvertent disclosure. Or they may decide to not disclose at all. By not disclosing, by remaining silent, LGBT people with dementia are more likely to have unmet long-term care needs and they may choose to not use services at all.

Knowing there are others there or knowing that the care services are LGBT-friendly will provide a safe environment for LGBT people to seek care and help when needed and feel safe to ‘come out’ and stay out.

The importance of life stories

Person-centred care starts with life stories. People with dementia are clearly all different. However, one common factor is that as the condition progresses, people regress to a previous time/times in their life. If someone’s life history means they are not originally from the UK, it’s likely this will be an important feature of who they once were and also who they are now. Similarly their life story will be affected as a result of their sexuality.

Once their life story is understood, reminiscence techniques can be used, alongside meaningful activities that are relevant to the individual, while ensuring activities are sensitive to their culture and background. 

If you’re interested in reading the guide or using it for team meetings or training sessions, there are helpful scenarios, case studies and links to useful resources. You can download it here.

*Alzheimers Research UK

**Dementia UK

During October we’re embracing diversity in adult social care. Click here to keep up to date with the campaign and join the conversation on social media using #EmbraceDiversity