Aim: To explore the lived experience of and needs of ethnic minority caregivers supporting a family member with dementia.
Background:
Many countries have an aging culturally diverse population, with increasing long-term conditions including dementia (Rosenthal Gelman 2014; Australian Bureau of Statistics 2016). The impact of cultural heritage on family members caring for a relative has been widely explored (Depp et al. 2005; Coon et al. 2004; Sharlach et al. 2006). Negative outcomes for culturally diverse family caregivers has included an increased prevalence of depression, raised blood pressure and poorer physical and mental health (Siegler et al. 2010; Lee and Farran 2004; Knight et al. 2007). However, there is a need to understand the impact of cultural heritage on the experiences and needs of ethnic minority family caregivers supporting a relative with dementia.
People with dementia require support from families and friends to live well in the community. Family caregivers of different cultural heritage may have a different understanding of dementia and services, as their countries of origin may have different approaches (Chan 2010). Services need to respond to the broad differences between collectivistic family culture of Asian communities in comparison to Western communities (Chun et al. 2007). However, there is a need to understand the impact of cultural heritage on the experiences and needs of ethnic minority family caregivers with relevance to dementia
Methods:
Design: Scoping review
A scoping review of current literature was completed: databases searched included: Medline, CINAHL, PsycINFO and PubMed for articles published in English from 1st Jan 2006 to 31st July 2016. The aim of the scoping review was to: map all relevant literature, identify key concepts gaps in the research, sources of evidence to inform practice, inform policymaking and inform future research.
Results:
A total of 14 studies met the eligibility criteria for inclusion in the review. All explored the experiences of ethnic minority family caregivers, and applied qualitative methodology via interview and focus group data collection. Studies were conducted in: USA (n=8), Australia (n=4), England (n=1) and Netherlands (n=1). A meta-synthesis from these studies identified three themes: 1) a lack of information and knowledge 2) an emotional response, and 3) the need to adapt and change.
Discussion:
Ethnic minority caregivers needed timely information to support them and prevent the feeling of trying to navigate services and support ‘without a map’. Information needs to be provided not only in a timely manner, but also in an appropriate format. Family caregivers discussed the emotional difficulty and value of caregiving. A supportive element to enable ethnic minority family caregivers to adapt and change was that of acculturation.
Conclusion:
There remains a need for: the provision of timely and appropriate information for ethnic minority family caregivers, including information on: healthcare system and how to access care, social care system and how to access support, dementia skills to care for someone with dementia. There also remains the need to ensure the inclusion of resources to support family caregivers emotionally through the development of culturally including culturally competent health and social care professionals who address the emotional and cultural aspects of impact of caring for a family member with dementia. Lastly, there is a need for specific support to aid acculturation and orientation to a new culture.
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