Invisible realities: Caring for older Moroccan migrants with dementia in Belgium

Abstract

The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.

Female Pakistani carers’ views on future formal and informal care for their older relatives in Norway

“…Healthcare professionals may even be aware of immigrants' underutilisation of these services, but they often assume that immigrants will not choose formal care and thus do not target these groups systematically. Such attitudes from healthcare providers may lead immigrant families to consider alternative care options, such as the use of unofficial domestic helpers and care marriages [39]. Although carers in our study expressed their relatives' concerns of being cared for by 'outsiders', they nevertheless anticipated their own challenges of informal caregiving.…”

“…Resisting or failing to fulfil the expectations of the community would bring about social exclusion and feelings of shame and guilt on the older immigrants' children [33]. The pressure to care for older relatives may therefore lead to postponing or declining to seek professional care [39], as carers themselves may perceive the act of seeking external support to be 'relinquishing their caregiving responsibility' [40]. Social pressure that stems from idealised notions of care, which are more or less detached from the new reality in the host country, makes the use of professional care services less attractive to family carers.…”

“…Studies of older Pakistani immigrants in Norway found that they are often afraid that inadequate support is provided in homecare services and that they will become detached from their family if they choose to live in such an institution [28,43]. Meanwhile, professional carers-as Berdai Chaouni and De Donder [39] pointed out-are often unaware that immigrants often avoid formal care because of their perception or anticipation that the care provided will be culturally or religiously insensitive.…”

Barriers to post-diagnostic care and support in minority ethnic communities: A survey of Danish primary care dementia coordinators

“…On one hand, there may be barriers associated with reactions to cognitive decline among ME groups, including normalization of symptoms (i.e. seeing memory problems as a normal part of old age), stigma, shame, and cultural pressure to care for family members ( Berdai Chaouni & De Donder, 2018 ; Denktas, Koopmans, Birnie, Foets, & Bonsel, 2009 ; Kenning et al., 2017 ; Mukadam et al., 2011b ; Nielsen & Waldemar, 2016 ; Næss & Moen, 2015 ; Sagbakken, Spilker, & Ingebretsen, 2018 ). On the other hand, there may be healthcare-associated barriers, including lack of clarity about the services available to people with dementia, language barriers, and lack of choice when seeking formal care and support services with available services often lacking cultural awareness and diversity for interacting with different cultural communities ( Berdai Chaouni & De Donder, 2018 ; Kenning et al., 2017 ; Mukadam et al., 2011b ; Næss & Moen, 2015 ; Sagbakken et al., 2018 ).…”

“…seeing memory problems as a normal part of old age), stigma, shame, and cultural pressure to care for family members ( Berdai Chaouni & De Donder, 2018 ; Denktas, Koopmans, Birnie, Foets, & Bonsel, 2009 ; Kenning et al., 2017 ; Mukadam et al., 2011b ; Nielsen & Waldemar, 2016 ; Næss & Moen, 2015 ; Sagbakken, Spilker, & Ingebretsen, 2018 ). On the other hand, there may be healthcare-associated barriers, including lack of clarity about the services available to people with dementia, language barriers, and lack of choice when seeking formal care and support services with available services often lacking cultural awareness and diversity for interacting with different cultural communities ( Berdai Chaouni & De Donder, 2018 ; Kenning et al., 2017 ; Mukadam et al., 2011b ; Næss & Moen, 2015 ; Sagbakken et al., 2018 ). Although considered less challenging in geographic regions with a more pronounced number of people from ME communities with dementia, almost all participating dementia coordinators (95%) reported providing post-diagnostic care and support for ME communities to be more challenging compared to ethnic Danish service users, and half of the participants (51%) found their municipality to have poor competencies at providing these services.…”