Living well with dementia can be an even greater challenge if you come from a black, Asian and minority ethnic (BAME) community, says Philly Hare.
Last week I was privileged to chair, on behalf of the European Foundation’s Initiative on Dementia, a seminar in Brussels, at which experts from five European countries shared their knowledge and experience of this issue.
The group identified and explored a number of key barriers. Invisibility is one – in some countries such as France, Greece and Turkey, the national statistical institutes are even restricted from collecting data on language, religious or ethnic groups. BAME communities can fear authority, and may deliberately keep a low profile.
Cultural perceptions are also influential – dementia can be seen as a punishment for past sins, or as an inevitable, and therefore untreatable, stage of ageing (apparently the Turkish word for dementia – bunaklık - incorporates the word for age).
Language difficulties, lack of local knowledge, and unfamiliarity with systems and services mean that access is very poor: we heard that one group, when invited to visit a care home, actually came out with much more positive views.
However, if services are insensitive to the needs of different communities – in relation to diet, gender or personal care habits – word quickly gets round. Moreover, the expectations of different generations are starting to change and cause conflict – younger women want (and need) to work, but still feel criticised or even ostracised by their own communities if they use services for their parents, JRF research shows.
BAME communities are also disproportionately affected by poor education, illiteracy, poverty and inadequate housing. A French expert reminded us that many of the older Moroccan immigrants in Paris live alone in tiny hotel rooms rented long term – offering home care may be inappropriate, as to all intents and purposes, they don’t have a ‘home’.
For all these reasons, people from BAME communities present later to services – often too late to access treatment to slow the dementia’s progression. In Belgium for example, late diagnosis would mean they had to pay for expensive drugs, instead of receiving them free.
So what can be done? Our experts highlighted the importance of cultural competence – avoiding and challenging ageist attitudes and assumptions about ethnic communities. This reflects issues explored in JRF’s study of older people in Bradford.
Understanding and functioning effectively within the contextual complexities of caste, religious customs, language differences, culture, inter-racial historical tensions and political events is extremely important – relevant staff must be equipped with such knowledge.
But making assumptions about anyone based on a general understanding of a particular culture can lead to clumsy and inappropriate actions: biography and recognition of the person’s individual identity are key, and central to Tom Kitwood’s person-centred approach and the growing focus on Life Story work.
Presenting dementia as a medical condition can also help, as it ‘gives permission’ for people to access health treatment (interesting, as in the UK there is a strong movement to shift away from the medical to the social model). Despite being time and resource-intensive, building relationships with community leaders and developing appropriate educational techniques are also essential.