Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence

Abstract

Background Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia. Methods Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI). Findings were synthesized using the Joanna Briggs Institute approach to qualitative synthesis by meta-aggregation. Results Seventeen papers were critically appraised, with 13 meeting the inclusion criteria. Participants were mostly of South Asians of Indian background; followed by Pakistani with a few Sri Lankans. Missing South Asian countries from the current evidence base included those from Bangladesh, Bhutan, Maldives, and Nepal. Three meta-synthesis themes emerged from the analysis: (1) a poor awareness and understanding of dementia, (2) the experience of caregiving, and (3) the attitudes toward dementia care provision. Conclusions A consistent message from this qualitative synthesis was the limited knowledge and understanding of dementia amongst the South Asians. Whilst symptoms of dementia such as ‘memory loss’ were believed to be a part of a normal ageing process, some South Asian carers viewed dementia as demons or God’s punishments. Most studies reported that many South Asians were explicit in associating stigmas with dementia.

Rotational care practices in minority ethnic families managing dementia: A qualitative study

“…This study is the first to consider in more detail the organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families in Denmark. As in previous studies in minority ethnic communities in Europe (Baghirathan et al, 2018;Berdai Chaouni & De Donder, 2018;Hossain et al, 2018;Naess & Moen, 2015;Parveen et al, 2017;Sagbakken, Spilker, & Ingebretsen, 2018;Sagbakken, Spilker, & Nielsen, 2018;van Wezel et al, 2016), we found a preference for keeping dementia care within the family with limited support from formal care services but more details about how this was managed by the families.…”

“…Although different care models were identified, rotational 24-hour care-either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementiaemerged as a common alternative to formal care. As in other research in Turkish, Pakistani, and Arabic speaking communities (Berdai Chaouni & De Donder, 2018;Hossain et al, 2018;van Wezel et al, 2016), it was evident that children of the person with dementia were central in these care arrangements. However, previous research has not focused on organization of shared family care, despite this care model has been considered when discussing dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic communities (Boughtwood et al, 2011;Lawrence et al, 2008;Sagbakken, Spilker, & Ingebretsen, 2018).…”

Dementia Knowledge and Attitudes of the General Public among the Bangladeshi Community in England: A Focus Group Study

“…Despite an increasing number of older people from the Bangladeshi community in England, little or no specific research has been carried out on their understanding and management of dementia [13,14]. As a result of the lack of primary research in this area, there was a need to conduct a primary qualitative study among the Bangladeshi community and to provide a coherent critical description and interpretation of their knowledge about, experiences with, and perceptions of dementia.…”

“…Dementia can be debilitating not only for the older person with dementia, but for family members as well [12]. However, there is little discussion about the British South Asian community and dementia in the literature, and there are no exact figures regarding the prevalence of dementia in Black, Asian, and Minority Ethnic (BAME) groups in the UK [13,14].…”

Traditional Gender Roles and Effects of Dementia Caregiving within a South Asian Ethnic Group in England

“…A recent qualitative systematic review indicates that there is no word for "carer" in South Asian languages [1]. Traditionally, caring responsibility in the South Asian community falls to the younger family members in the household, especially daughters-in-law or unmarried daughters.…”