How Can Faith Communities Help Break Down Stigma Around Dementia?
This week I was at a discussion at Public Health England focused on Black, Asian and Minority Ethnic (BAME) communities and dementia. There were representatives there from across the health system, as well as large and small voluntary organisations. But as always with these things, it was people’s personal stories that really stood out.
Most moving was the account by one person of his family’s experiences caring for his mother, who had dementia. Not only did they experience great difficulty in getting a diagnosis – at first their worries were dismissed by the GP – but, like many other families, they found the burden of care to be tremendous. The speaker told of how he had to give up his job to become a full-time carer, and of how the strain brought him and his immediate family to breaking point.
Nonetheless, such was the pressure from his extended family to continue caring for his mother at home that he eventually felt obliged to go to his Imam to seek an Islamic ruling that it was permissible to seek some respite care. As he said, the traditional attitude is that ‘we look after our own’, and he felt that in his family’s eyes he would be failing as a son if he sought professional care for his mother. This story highlights both the needs for awareness-raising among some communities, and the potential for faith leaders to play an important role in addressing this need. They can encourage people to seek the appropriate medical support, as well as encouraging them to turn to their faith and faith community, which can itself become a source of support when the stigma that often surrounds dementia is overcome.
On a hopeful note, a speaker from the organisation Touchstone in Leeds talked about work already in progress to build capacity among faith leaders and their congregations so that they can become more dementia-friendly. Once again, breaking down issues of stigma and fear is an important priority, and a challenge when in some languages there is no word for dementia beyond ‘crazy’. Nonetheless, we need to be able to help people talk about the disease so that those affected can get the help they need. Given the large number of people affected by dementia – expected to be over one million by 2025 – I think that as faith communities this is not something we can ignore. What are our responsibilities to those we know who are affected by dementia? Or to put it another way – what are our opportunities to serve them?
This year, FaithAction is drawing together examples of good practice by faith communities in supporting people living with dementia and their carers. We’re representing our members on the Faith Communities Action Group that has been set up as part of the Prime Minister’s 2020 Challenge on Dementia, and we’re also in the process of collating resources for faith groups – you can find a few here already, but we want to add to this list. So if you have ideas, resources or stories to share, please get in touch with me on 0845 094 6350, or [email protected]
