In the last five years there have been incredible shifts in perception of how to support people living with Dementia. The
advent of Dementia Friends, the Primeminster’s Dementia Challenge and a focus on early diagnosis has transformed levels of understanding both professionally and within the wider community. Key to this shift has been an increased recognition of the importance of the voice of those living with dementia and their carers. It is through listening intently to that voice that the focus of attention is rightly shifting to a discussion around equity and rights. It is essential that those who have experienced discrimination because of societal prejudice around age, gender, ethnicity, sexuality, health or poverty, do not have it reinforced because of their dementia.
In order to address this important issue, the National Care Forum, as part of a coalition of organisations, has put together a valuable publication aimed at putting people with dementia as centre stage, recognising that they are equal citizens with equal rights. It helps frame an approach to working with people with dementia that is closely aligned with the social model of disability, recognising that it is society that puts in place the barriers that serve to exclude and isolate people. It also recognises that those societal barriers can also prevent parts of the community, already marginalised and excluded, from receiving the right care and support for their dementia.
The publication provides case studies and examples across the ‘protective characteristics’ of equality legislation within the
UK, providing best practice and clear guidance to commissioners and providers of services to ensure that they offer a service that meets needs. For example, the report highlights the impact of dementia on people from Black and Minority Ethnic
(BME) communities. The research suggests that the prevalence of dementia within BME sections of society may be a relatively new phenomenon. It cites immigration patterns in the 1950’s and 60’s bringing large groups of working age people to the UK, who are now, for the first time, forming a sizeable BME older population. This is reflected in the rapid increase in people diagnosed in these communities with dementia in the last ten years, compared to previous numbers. The barriers the members of BME communities experience in accessing health and social care services are already well documented, particularly around mental health, and therefore there are real risks that those living with dementia in the BME community are not receiving the correct levels of support. There may also be limited knowledge of possible services, alongside the challenges of language barriers which may be exacerbated for individuals by loss of cognitive skills. Whilst this information is pertinent to the BME community, it is replicated throughout the report, culminating in a recognition that the societal barriers individuals experience can lead to later diagnosis, which can then result in a range of poor outcomes including
All of this information makes it critical that commissioners and providers take action to drive improvement in their current approach to supporting people living with dementia, recognising the potential for discrimination. The clear guidance within the publication highlights the importance of communication, with families and wider community services. It recognises the strength of supporting culturally appropriate voluntary and community sector groups, to skill them up to support individuals and carers to bridge the gaps in care or accessing services. It looks to localities to embed an understanding of the care and support needs of the whole community in strategic tools such as the Joint Strategic Needs Assessment. Ultimately it requires providers and commissioners of services to understand how adopting a truly person-centred perspective means ensuring that the environment within which services operate does not further discriminate and disadvantage people with dementia.
Dementia – Equity and Rights can be accessed here. http://www.nationalcareforum.org.uk/viewNews.asp?news_id=3553