Explanatory models and openness about dementia in migrant communities: A qualitative study among female family carers

Abstract

Background The prevalence of dementia is increasing among people with a Turkish, Moroccan and Surinamese-Creole background. Because informal care is very important in these communities, it is pertinent to see what explanations female family carers have for dementia and whether they can discuss dementia openly within the community and the family. Method Forty-one individual interviews and six focus group interviews ( n = 28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia, and who live in The Netherlands. Qualitative analysis has been carried out, supported by the software MaxQda. Results The dominant explanations of dementia given by the female family carers interviewed are in line with what Downs et al. describe as the explanatory models 'dementia as a normal ageing process' and 'dementia as a spiritual experience'. In addition, some female family carers gave explanations that were about an interplay between various factors. Turkish and Moroccan informal caregivers ascribe the causes of dementia relatively often to life events or personality traits, whereas Surinamese Creole caregivers frequently mention physical aspects, such as past dehydration. However, the explanatory model 'dementia as a neuropsychiatric condition', which is dominant in Western cultures, was rarely expressed by the informal caregivers. The female family carers generally talked openly about the dementia with their close family, whereas particularly in the Turkish and Moroccan communities open communication within the broader communities was often hampered, e.g. by feelings of shame. Conclusions Female family carers of Turkish, Moroccan or Surinamese Creole backgrounds often consider dementia as a natural consequence of ageing, as a spiritual experience, and/or as an interplay between various factors. They feel they can talk openly about dementia within their close family, while outside the close family this is often more difficult.

Barriers in providing primary care for immigrant patients with dementia: GPs’ perspectives

“…6–9 Dementia is still a taboo subject among non-Western immigrants and is often not acknowledged as a disease, but as a side effect of old age. 10 Care is more often provided by family members than by official organisations compared with native older people. 11 This often causes a delay in their first presentation to the GP.…”

A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?

“…Only four papers provided a definition for the ethnic groups included ( Adamson & Donovan, 2005 ; Fox, Hinton, & Levkoff, 1999 ; van Wezel et al, 2016 , 2018 ). In total, the studies included elicited views from 492 people described as being of BAC ethnicity.…”

“…Arrangements to involve recruiters and/or interviewers with similar backgrounds as participants were reported in 6/25 (24%) of studies ( Belgrave et al, 2004 ; Gerdner & Simpson, 2009 ; Gerdner et al, 2007 ; Lampley-Dallas, Mold, & Flori, 2001 ; Lindauer et al, 2016 ; van Wezel et al, 2016 , 2018 ; Vickrey et al, 2007 ). We obtained confirmation of authors’ ethnicities for 12/28 (43%) of papers.…”

Cross-cultural neuropsychological assessment in the European Union: a Delphi expert study

“…This may in part be due to the way the surveys were designed (i.e., with a relatively heavy emphasis in the forced-choice questions on cognitive tests). Other specific examples of relevant issues to take into consideration in working with minority ethnic groups are traumatic experiences and migration-related distress or grief ( Carta, Bernal, Hardoy, Haro-Abad, & the “Report on the Mental Health in Europe” Working Group, 2005 ), differences in explanatory models of illness ( Fazil, Wallace, & Hussain, 2006 ; van Wezel et al., 2018 ), exposure to discrimination ( de Freitas, Fernandes-Jesus, Ferreira, & Coimbra, 2018 ), and differences in symptom manifestation and idioms of distress, such as mixed affective and somatic presentations of depression in Moroccan and Turkish patients ( Sempértegui, Knipscheer, Baliatsas, & Bekker, 2019 ).…”