Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services

Regan, Jemma

doi:10.1177/1471301214534423

Cited by 15 publications

(36 citation statements)

References 38 publications

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“…The issue of religion was particularly illuminating. Previous research on Muslims and dementia has touched upon the idea of incontinence disrupting the cleanliness necessary for prayers at home (Bowes & Wilkinson, 2003), or the fear of doing something wrong while in public at mosque (Regan, 2016). The present data demonstrate the impact of symptoms of dementia on the obligatory daily prayers of Islam.…”

Section: Discussionmentioning

confidence: 53%

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Experiences of People With Dementia in Pakistan: Help-Seeking, Understanding, Stigma, and Religion

et al. 2018

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Background and Objectives: The prevalence of dementia will increase in low and middle income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear. Research Design and Methods: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analysed thematically. Results: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Helpseeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations. Discussion and Implications: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers.

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Section: Discussionmentioning

confidence: 53%

“…In Pakistan, these barriers are exacerbated by the low literacy level (45%) (Awan et al, 2015), and scarcity of services (Khan, 2014). Furthermore, the expectation in Pakistani culture to provide family care is high and acts as a barrier to help-seeking (Ali & Bokharey, 2015, 2016.…”

Section: Background and Objectivesmentioning

confidence: 99%

Experiences of People With Dementia in Pakistan: Help-Seeking, Understanding, Stigma, and Religion

et al. 2018

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“…Limitations of the study and suggestions for future research The ethnic profile of the older men with dementia was White British. Caution must therefore be taken when attempting to generalise these findings to community-dwelling older men with dementia from other ethnic backgrounds, as these cultures can also adversely impact on men's abilities to engage with health services (Regan, 2016). Future research would be advised to examine the factors for engaging community-dwelling older men from diverse cultural backgrounds, and so provide theoretical insight into these active mechanisms.…”

Section: Managing the Multiple Masculinitiesmentioning

confidence: 99%

Exploring the ‘active mechanisms’ for engaging rural-dwelling older men with dementia in a community technological initiative

2019

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Research has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the ‘active mechanisms’ whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage with traditional health and social care initiatives. This paper reports on a study that drew from the principles of Participatory Action Research to explore the ‘active mechanisms’ of a technological initiative for older men (65+ years) with dementia in rural England. An individually tailored, male-only initiative, using off-the-shelf computer game technology (e.g. iPad, Nintendo Wii and Microsoft Kinect) was delivered over a nine-week period. Multiple qualitative methods were employed, including: focus groups, open interviews and extensive reflective field notes, to gather data from the perspective of 22 men, 15 care partners and five community volunteers. The data were analysed thematically and interpreted using a masculinity lens. Three mechanisms contributed to the initiative's success: the use of the technology, the male-only environment and the empowering approach adopted. The paper argues that initiatives aimed at community-dwelling older men with dementia would be advised to consider these gendered experiences and ensure participants can maximise their masculine capital when participating in them, by providing enabling activities, non-threatening environments and empowering approaches of delivery.

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“…Six papers reflected how, not just language, but culture also causes issues in assessments with Afro-Caribbean and South Asian T A B L E 2 (Continued) Odutoye & Shah, 1999Parveen et al, 2018Purandare et al, 2007Ramsey et al, 2009Redelinghuys & Shah, 1997Regan, 2016Richards et al, 2000Shah, 1999Shah et al, 1998Stewart, Russ, et al, 2001Turner et al, 2005Uppal et al, 2014Wilkinson et al, 2003Themes Mukadam et al, 2011Odutoye & Shah, 1999Parveen et al, 2018Purandare et al, 2007Ramsey et al, 2009Redelinghuys & Shah, 1997Regan, 2016Richards et al, 2000Shah, 1999Shah et al, 1998Stewart, Russ, et al, 2001…”

Section: Cultural Issues In Assessmentsmentioning

confidence: 99%

“…We also find that the dementia diagnostic and care pathway, developed and implemented through this dementia research, cannot extend across cross-cultural settings. The healthcare settings reflect their own bias and ethical concerns due to differences across ethnic minorities (Khan & Tadros, 2014;Regan, 2016;Weimer & Sager, 2009;Richards & Abas, 1999).…”

mentioning

confidence: 99%

Recruitment and methodological issues in conducting dementia research in British ethnic minorities: A qualitative systematic review

Waheed

Mirza

Waheed

et al. 2019

Int J Methods Psych Res

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Objective Identifying existing recruitment and methodological issues within dementia research conducted in UK studies that included ethnic minorities. Methods We searched for and included any publication detailing dementia research in the UK that included any ethnic minority. The search results and all titles and abstracts were screened according to the inclusion criteria followed by screening of the full texts. We extracted data regarding the recruitment and methodological issues faced by the researchers. This data was combined and listed, and related issues were grouped into overarching themes and subthemes. Results Of 52 publications suitable for analysis, 33 provided data collated into six themes: attitudes and beliefs about dementia in ethnic minority communities, recruitment process, data collection issues, practical issues, researcher characteristics, and lack of published research and normative data. These themes allowed us to identify three areas responsible for addressing these recruitment and methodological issues: community and patient education, health services, and researchers' training. Conclusions This is the first review identifying recruitment and methodological issues within UK dementia research that included ethnic minorities. We now have a compilation of reported existing issues and a framework of areas responsible for addressing them and devising solutions.

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Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services

Cited by 15 publications

References 38 publications

Experiences of People With Dementia in Pakistan: Help-Seeking, Understanding, Stigma, and Religion

Experiences of People With Dementia in Pakistan: Help-Seeking, Understanding, Stigma, and Religion

Exploring the ‘active mechanisms’ for engaging rural-dwelling older men with dementia in a community technological initiative

Recruitment and methodological issues in conducting dementia research in British ethnic minorities: A qualitative systematic review

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