Measuring concepts of dementia in UK Asian communities

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An Explanatory Model (EM) is a personal explanation for mental distress, and has been shown to vary a great deal between cultures. The Barts Explanatory Model Inventory Checklist (BEMI-C) is

a tool designed to elicit perceptions of mental illness from people with different cultural backgrounds.

The BEMI-C comprises four checklists covering conceptual themes around symptoms, causes, consequences and treatment.

It has been shown in previous studies that recognition and understanding of mental distress in people from different ethnic minorities differ often quite radically from the general population. This can lead to reduced rates of diagnosis and accessing of services by these groups, and consequently reduced quality of life in people with mental health problems and their family members.

The article describes the process the researchers went through to adapt the BEMI tool for dementia in South Asian populations living in Western communities like the UK.

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The research is about adapting The Barts Explanatory Model Inventory Checklist for dementia in UK South Asian communities.

Methods

Literature review

Firstly, the researchers took the 18 studies from a previously published review exploring barriers and facilitators to recognising symptoms and accessing care for mental health problems in South Asian ethnic minorities. These studies were re-examined to look specifically for coverage of the four BEMI-C checklist themes.

Pilot interviews

Secondly they used another existing tool, the BEMI Interview version (BEMI-I) which is a 12-item list of questions developed alongside the BEMI-C. The BEMI-I is designed to enquire about things like identity and also elicit perceptions of the causes and control of memory problems.

They used the BEMI-I to conduct pilot interviews with South Asian interviewees to guide modification of the BEMI-C into a tool specifically for Dementia called BEMI-Dementia (BEMI-D).

The interviews were conducted with 25 predominantly younger people of both Indian and Pakistani heritage, some of whom had no direct experience of dementia.

Dementia-specific questions were added to the BEMI-I. It did not report the proportion, but some of the pilot interview participants did not have direct experience of dementia.

With me so far?

The adaptation process used to create BEMI-Dementia used four types of items

  1. Original items from BEMI-Checklist with some items less relevant to dementia removed
  2. Items identified from the interviews but not mentioned in the literature
  3. Items from the both the literature and the interviews
  4. Items which appeared in the Checklist, but not the interviews.
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Interviews were conducted with predominantly younger people of both Indian and Pakistani heritage, some of whom had no direct experience of dementia.

Results

As with the BEMI-C, the BEMI-D was created as a four-section checklist covering themes and perceptions around symptoms, causes, and consequences of dementia, and treatment options.

A large table summarised the 21 themes and 212 perceptions which emerged from this adaptation process.

Examples of the 15 perceptions identified in the literature which were also identified in the interviews included

  • negative thinking as a cause,
  • loss of engagement in family and status-related roles, and incontinence as consequences, and
  • dealing with fate, self-talk, and performance of duties and engagement as treatment.

Conclusion

The authors conclude that

Given the national priority of improving dementia awareness and timely diagnosis, the BEMI-D can serve as a useful tool, in research and perhaps practice, to assess the barriers to dementia service uptake in this population and their understandings of dementia. Based on the detailed methodological description of the adaptation of the BEMI-C, this paper further suggests how this tool can be adapted to suit other ethnic minority groups.

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One of the perceptions about dementia was loss of engagement in family and status-related roles.

Summing up

What does it all mean?

To be quite honest, I have difficulty in seeing exactly how and when the results of this research are going to make a practical positive difference to the health and social care of the South Asian community.

The authors primarily talk about the use of the tool in terms of further research, using the checklist as the basis for interviewing future research participants. They suggest the use of a case-study vignette for use with interviewees without direct experience of dementia, which I find quite strange, although I can see how that might be useful for teaching purposes.

However, the researchers do suggest a use for the BEMI-D in clinical settings by using the fact that South Asian older adults seek help for behavioural and physical problems at similar levels to the general population.

So the BEMI-D, probably in a shortened version, could be used as an opportunistic screening tool in clinical settings.

Call for pragmatic research

I wonder if it might be more pragmatic to create, implement and evaluate a shortened version of the already established BEMI-C which aims to cover personal explanations for different types of mental distress in a range of ethnic groups.

Whilst this would be a much less sensitive tool, perhaps it would be a more practical and quicker way to raise awareness of and access to mental health and social services by people from ethnic minorities.

It could also be evaluated to test whether its use improves outcomes in many commonly overlooked ethnic minority groups, including those with dementia.

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It might be more pragmatic to create, implement and evaluate a shortened version of the tool to cover explanations about different types of mental distress.

Link

Giebel, C.M., Jolley, D., Zubair, M., Bhui K.S., Challis, D., Purandare, N., Worden, A. (2015) Adaptation of the Barts Explanatory Model Inventory to dementia understanding in South Asian ethnic minorities. Aging & Mental Health DOI:10.1080/13607863.2015.1031637 [Abstract]

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