Dementia Centred

By Henriette Laidlaw

July 5th, 2016

One syndrome, many cultures...

Our society comprises people from a broad spectrum of cultural backgrounds, and it is important that we consider this when planning for and delivering care.

When services are provided it is important that diversity is considered and that the service is sensitive to all members of society. Evidence indicates that members of the BAME (Black, Asian and Minority Ethnic) communities have received poor care and that the support provided did not meet their cultural needs.

As a society we also need to be careful of making assumptions regarding members of specific cultural groups, i.e. assuming they 'look after their own', and assuming no help is needed to do so.

To address this, Skills for Care have issued a new guide: Dementia and diversity: A guide for leaders and managers

The resource has been developed to enable leaders and managers to support and develop their teams working with people living with dementia who are from a diverse range of cultures and backgrounds. This is an important area of focus because as dementia progresses, it is likely that a person’s characteristics will change, and often culture and background will play an increasingly important role in the care and support that a person prefers to receive. 

Dementia does not discriminate. The principle things to look out for in people with dementia are the same for all and include:

  • loss or lapses of recent memory
  • mood changes or uncharacteristic behaviour (in later stages this will become more pronounced)
  • poor concentration
  • problems communicating
  • getting lost in familiar places
  • making mistakes in a previously learned skill (eg. cookery)
  • problems telling the time or using money
  • changes to sleep patterns and appetite
  • personality changes
  • visio-spatial perception issues (i.e. the brain does not process images as normal).

So although dementia does not discriminate and the core signs are the same across the populations, there are considerations specific to the different sub groups.

Black, Asian, minority ethnic (BAME)

Unfortunately we find that for many there is still a stigma connected to the diagnosis of dementia. This stigma can be more pronounced within some cultures and some languages do not recognise dementia.

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 significant impact, such as:

  • people who have English as a second language may revert to their primary language as dementia progresses, this can increase the challenges around communication.
  • when addressing meals and room design to consider what the person with dementia would be familiar with from a cultural perspective.

Note this group might not always be easy to identify as they might have lived in the UK for the majority of their lives. It is therefore important to engage with family and friends to learn as much as possible about the individual, never presume you know.

DSDC have published basic dementia overview in various languages, which can be downloaded and used with families and carers:

Lesbian, gay, bisexual or transgender 

For the LGBT community there is often a lack of family support as they are more likely to be single and less likely to have children. Also some people who are LGBT with dementia may not always have identified as such. WIthin this community it is not uncommon to come across long term relationships that have never been formalised, therefore adding to the stress and complexity for their carer/partner. 

Young-onset dementia

About 5% of those diagnosed with dementia are below the age of 65. The needs for this group will often differ, and it is important to recognise this. 

The Guide for leaders and managers

The guide provides information and guidelines for leaders on: 

  • Recruiting staff with the right values and cultural awareness
  • Induction of staff and supporting cultural and background awareness
  • Development of staff

Skills for Care recognises in the publication how important reflective learning through supervision with their line manager helps staff think through challenges. The Best Practice Programme, developed by DSDC, uses this model of facilitated reflective learning to develop best practice in care.

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