Age, memory loss and perceptions of dementia in South Asian ethnic minorities.

BACKGROUND: South Asian older adults are represented less frequently in mainstream mental health services or those for people with dementia. This study aimed to explore in detail the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems, as these influence help-seeking behaviour. METHODS: Participants were allocated to three groups: younger adults; older adults; and older adults with subjective memory problems. They completed the semi-structured Barts Explanatory Model Inventory for Dementia schedule, whilst older adults also completed measures of cognition (MMSE), and depression (GDS). Interviews were conducted in English, Gujarati or Urdu. RESULTS: Groups were similar in identifying unusual forgetting and confusion as the most frequent symptoms; stress and age as the most frequent causes; and talking to your GP/nurse, taking medication, and talking to family and friends as the most frequent treatments. Younger adults more often knew about risk factors and reported practical consequences more than older adults. Older adults with subjective memory problems were more likely to describe sleep related problems or symptoms commonly associated with depression. They more often cited as causes of dementia lack of sleep, side effects of medication and medical reasons, and mentioned religion as a means to cope. CONCLUSIONS: Findings highlight variability in perceptions of dementia across the South Asian Community and identify specific areas where dementia awareness could be raised in South Asian sub-groups to improve timely diagnosis, treatment outcomes and service access.

Adaptation of the Barts Explanatory Model Inventory to dementia understanding in South Asian ethnic minorities.

OBJECTIVE: Studies indicate a limited understanding of dementia and its associated symptoms, causes and consequences among South Asian older adults. As a consequence, fewer people from this ethnic group receive a diagnosis of dementia. The aim of this study was to adapt the previously designed Barts Explanatory Model Inventory Checklist (BEMI-C), a tool designed to elicit perceptions of mental illness from people with different cultural backgrounds, for use with people with dementia in the South Asian population. METHOD: Both a literature review and 25 qualitative interviews were conducted to find themes and perceptions that are relevant to the South Asian culture in recognising and dealing with symptoms of dementia. The emergent themes and perceptions were then added to the BEMI-C through synthesis of findings. RESULTS: The initial four checklists of symptoms, causes, consequences and treatments from the BEMI-C were retained in the new BEMI-Dementia (BEMI-D) and expanded with six additional themes, including 123 new perceptions relevant to the understanding of dementia. All new themes emerged from the qualitative interviews, some of which were also found in the literature. CONCLUSION: 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.

Perceptions of self-defined memory problems vary in south Asian minority older people who consult a GP and those who do not: a mixed-method pilot study.

OBJECTIVE: South Asian older adults access services for mental health problems and dementia less than other older people in the UK, unlike for physical health problems. This pilot study investigated how South Asians with self-defined memory problems, with and without GP consultation, construe the symptoms, causes, consequences and treatment of the condition. METHODS: Participants were recruited through community centres, their networks and memory clinics in Greater Manchester. The newly developed Barts Explanatory Model Inventory for Dementia (BEMI-D) was administered to 33 (18 M, 15 F) older South Asians aged 65 or above with memory problems in English, Gujarati or Urdu. Furthermore, cognition, executive function and depression were assessed. RESULTS: Perceptions of dementia varied by GP consultation for memory problems. A greater proportion of older adults without a consultation considered memory problems to be given by God, saw acceptance of fate as an alternative treatment and did not identify medical support as appropriate. Forgetfulness and loss of social meaning were identified as symptoms of dementia more by those with a consultation. Higher levels of diabetes, heart disease and depression were found in those without a consultation. CONCLUSIONS: Differences in perceptions may influence the decision about consulting a GP. Similarly, consultation for memory problems appears linked to extent physical health problems and mental health consultation (depression). These variations reported on a small scale in this pilot study suggest the need to explore the impact of perceptions on rates of GP consultation, so as to improve timely diagnosis and access to appropriate services.

South Asian older adults with memory impairment: improving assessment and access to dementia care.

OBJECTIVE: With increasing international migration, mental health care of migrants and ethnic minorities is a public health priority. South Asian older adults experience difficulties in accessing services for memory impairment, dementia and mental illness. This review examines barriers and facilitators in the pathway to culturally appropriate mental health care. METHODS: Web of Knowledge, Pubmed and Ovid databases were searched for literature on South Asian older adults or their family carers, their understandings of mental illness and dementia and their pattern of service use. Dates were from 1984 to 2012. Abstracts were assessed for relevance, followed by detailed reading of salient papers. Three researchers rated the quality of each included study. A narrative synthesis was undertaken of extracted and charted data. RESULTS: Eighteen studies met the eligibility criteria for the review. South Asians and health professionals highlighted several difficulties which deterred help seeking and access to care: a lack of knowledge of dementia and mental illness, and of local services; stigma; culturally preferred coping strategies; and linguistic and cultural barriers in communication and decision making. CONCLUSIONS: To improve access for these groups, service users and providers need to be better informed; services need to be more culturally tailored, sometimes employing staff with similar cultural backgrounds; and health professionals can benefit from dementia education and knowledge of local services. These factors are key to the delivery of the National Dementia Strategy in England.

At the crossroads of anthropology and epidemiology: current research in cultural psychiatry in the UK.

Cultural psychiatry research in the UK comprises a broad range of diverse methodologies, academic disciplines, and subject areas. Methodologies range from epidemiological to anthropological/ethnographic to health services research; mixed methods research is becoming increasingly popular, as are public health and health promotional topics. After briefly outlining the history of cultural psychiatry in the UK we will discuss contemporary research. Prominent themes include: the epidemiology of schizophrenia among Africans/Afro-Caribbeans, migration and mental health, racism and mental health, cultural identity, pathways to care, explanatory models of mental illness, cultural competence, and the subjective experiences of healthcare provision among specific ethnic groups such as Bangladeshis and Pakistanis. Another strand of research that is attracting increasing academic attention focuses upon the relationship between religion, spirituality, and mental health, in particular, the phenomenology of religious experience and its mental health ramifications, as well as recent work examining the complex links between theology and psychiatry. The paper ends by appraising the contributions of British cultural psychiatrists to the discipline of cultural psychiatry and suggesting promising areas for future research.

Experiences of acute mental health care in an ethnically diverse inner city: qualitative interview study.

PURPOSE: Ethnic inequalities in experiences of mental health care persist in the UK, although most evidence derives from in-patient settings. We aimed to explore service users' and carers' accounts of recent episodes of severe mental illness and of the care received in a multi-cultural inner city. We sought to examine factors impacting on these experiences, including whether and how users and carers felt that their experiences were mediated by ethnicity. METHODS: Forty service users and thirteen carers were recruited following an acute psychotic episode using typical case sampling. In-depth interviews explored illness and treatment experiences. Ethnicity was allowed to emerge in participants' narratives and was prompted if necessary. RESULTS: Ethnicity was not perceived to impact significantly on therapeutic relationships, and nor were there ethnic differences in care pathways, or in the roles of families and friends. Ethnic diversity was commonplace among both service users and mental health professionals. This was tolerated in community settings if efforts were made to ensure high-quality care. Home Treatment was rated highly, irrespective of service users' ethnicity. In-patient care was equally unpopular and was the one setting where ethnicity appeared to mediate unsatisfactory care experiences. These findings highlight the risks of generalising from reports of (dis)satisfaction with care based predominantly on in-patient experiences. CONCLUSIONS: Home treatment was popular but hard to deliver in deprived surroundings and placed a strain on carers. Interventions to enhance community treatments in deprived areas are needed, along with remedial interventions to improve therapeutic relationships in hospital settings.