Help-seeking in African-Caribbean Dementia Carers

The recent killing of George Floyd has re-exposed systemic inequalities on the grounds of race and ethnicity. Unfortunately, this is nothing new. These inequalities manifest across several domains, including health and social care for people living with dementia and their carers.

In the UK there are more than 25,000 people living with dementia from minority ethnic groups [1]. Minority ethnic groups may be more likely to develop dementia due to being pre-disposed to dementia risk factors such as diabetes, stroke, heart disease [2] and hypertension [3]. People from Black and Asian Minority Ethnic (BAME) backgrounds in particular are less likely to receive an early diagnosis of dementia [4]. This is likely to result in delayed access to pharmacological treatment, post-diagnostic support and potentially faster disease progression [5].

Language barriers, stigmatisation of dementia as a mental illness [6, 7], and normalisation of dementia as a natural part of the ageing process [6] have all been found to increase dementia risk in BAME groups. However, there are a number of systemic factors that might be driving this. Research has revealed that dementia care services do not provide culturally appropriate support to people from BAME communities [4]. In addition, BAME dementia carers often report that post-diagnostic dementia support is not culturally tailored which makes them question the utility of diagnosis [8]. This is problematic because it may lead BAME communities to disengage from the services available [9].  Despite these issues, ethnic minorities are under-represented in dementia care research. We don’t know what the facilitators and barriers are for help-seeking in specific BAME groups [10].

Our study aimed to identify the facilitators and barriers to help-seeking in African-Caribbean dementia carers living in the North West of England. For this study, we conducted interviews with six carers from African-Caribbean backgrounds who had caregiving responsibilities for a parent with a diagnosis of dementia.

We identified a number of barriers to help-seeking behaviour. The most fundamental psychological barrier to seeking support was a sense of burden among our carers: “I don’t know how I’ve survived” (Mrs E). This was set against culturally specific psychological barriers, for example: “Culturally, in the West Indian culture, there is this denial” (Miss E). Caregiver burden was exacerbated by a perceived lack of post-diagnostic support: “Once we got the diagnosis, we didn’t really get any help… left to it” (Mrs D). Interestingly, dementia support services were perceived as lacking in diversity: “She didn’t want to be the only black person. She wanted to be around a mixture of people” (Mrs D).

In terms of facilitators, our carers valued the support from their informal support networks: “I can talk to my hubby, my daughter, the girls at work… cause they know my mum’s situation”; “They’ve been a great help… they put a seat in the bathroom, they put a railing on the stairs” (Mrs C). Receipt of emotional and practical support from friends and family made our carers more likely to reach out for formal support when needed. Social media networks were also perceived as supportive and made our carers feel part of a wider community of like-minded individuals: “They say what they’ve got to say and then be like, right I’m ok… you’re not on your own” (Miss A). Finally, a sense of positivity made our carers more accepting of support and advice from carer support services: “You’ve got to make your own humour” (Miss A); “I don’t even look at myself as a carer because she is my mum” (Mrs D).

Our study isn’t perfect. The findings relate to a small sample of parental carers. Although most BAME dementia carers are caring for a parent [11], we don’t know what the experiences of spousal carers are. Also, it is difficult to know whether the facilitators and barriers identified are unique to African-Caribbean carers or whether they are experienced universally by all dementia carers. Finally, all of our carers had accessed an African-Caribbean dementia centre which means they had already sought help; we lack the perspectives of other more isolated carers.

That said our findings offer important insights. There are parallels between our findings and studies of white dementia carers, particularly around caregiver burden [12] and informal social support [13].  There are unique features too, for example, the perceived diversity of carer support services and perceived availability of post-diagnostic support. Whether this support is tangibly available or not is irrelevant; if the carers themselves feel that it isn’t then this presents challenges for practitioners and policy makers. We did identify a number of factors that facilitate help-seeking in carers. Promotion of these facilitators in carers may bridge the gap between burden and support. However, our findings suggest that support offered should be culturally appropriate and diverse in its approach and make-up.

Blog by Hannah Gloudon, a final year Psychology student and Dr Warren Donnellan, Lecturer in the Department of Psychology at the University of Liverpool.

References

Image from: https://www.alzheimers.org.uk/blog/mum-dementia-denied-british-passport