REVIEW

South Asian older adults with memory impairment: improving assessment and access to dementia care Clarissa M. Giebel1, Maria Zubair1,2, David Jolley1, Kamaldeep Singh Bhui3, Nitin Purandare4,5,6, Angela Worden1 and David Challis1,6 1

Personal Social Services Research Unit, The University of Manchester, UK School of Sociology and Social Policy, The University of Nottingham, UK 3 Barts and The London School of Medicine and Dentistry, Queen Mary, University of London, UK 4 Professor Nitin Purandare was the original PI for the study but tragically died in May 2012 5 Peninsula College of Medicine and Dentistry, University of Exeter, UK 6 Manchester Mental Health and Social Care Trust, UK Correspondence to: C. M. Giebel, E-mail: [email protected] 2

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. Copyright # 2014 John Wiley & Sons, Ltd. Key words: South Asian; dementia; mental health; service use; ethnic minorities History: Received 15 August 2014; Accepted 3 November 2014; Published online 12 December 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4242

Introduction South Asians of Indian, Pakistani and Bangladeshi origin represent the largest minority ethnic (ME) group in England and Wales, constituting 5.3 per cent of the general population (ONS, 2011a). With increasing ethnic diversity, not only in the UK (ONS, 2011b), but also in countries such as Canada, Australia and the United States (Tran et al., 2005; ABS, 2006; USCB, 2012), understanding linguistic and cultural diversity and its impact on health care is a public health Copyright # 2014 John Wiley & Sons, Ltd.

priority. An ageing population, including migrants and ethnic minorities, will experience more agerelated diseases, such as dementia. The value ascribed to cultural and linguistic preservation amongst older South Asian migrant generations can militate against accessing necessary services. Although younger generations accommodate to Western culture and health concepts to a greater extent, older generations tend to preserve their cultural identity, beliefs and health concepts more strongly. This is evident in lower rates of mental health service uptake (Nielsen et al., 2011; Int J Geriatr Psychiatry 2015; 30: 345–356

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Cooper et al., 2013), unexplained by lower rates of mental disorder (Williams et al., 1997). In contrast, service use for physical symptoms and social care by this group is at least equivalent to the rest of the population (Livingston et al., 2002). Under-use of mental health services may arise from a lack of information about the pathways to access appropriate mental health care (Kumari, 2004; Seabrooke and Milne, 2004), arising from factors such as health concepts, cultural or linguistic barriers (Jolley et al., 2009). Examining different pathways to psychiatric care, Goldberg and Huxley’s (Goldberg and Huxley, 1980, 1992; Goldberg, 1995) classic schema permits mapping difficulties experienced within the South Asian community onto a well-known model for the general population. In this model, individuals with mental health problems progress between different levels of care, including family and community, primary care, secondary care and admission to mental health in-patient care. Specific filters of recognition can facilitate or act against progression between levels: from family to the general practitioner (whether or not to consult—1st filter); identification by the general practitioner of the individual’s mental health needs (recognition of presence of disorder— 2nd filter); referral to and uptake of access to appropriate investigation and treatment by a specialist mental health service (referral/uptake of specialist mental health care—3rd filter). Only in some cases is the fourth filter, that of admission to an in-patient bed, required (in-patient admission—4th filter). However, Bhui and Bhugra (2002) suggested that pathways to care can be more complicated than those encapsulated in the original model (Goldberg and Huxley, 1980). This is particularly the case within ME groups where cultural expectations of health and health care, and illness perceptions and beliefs lead to alternative channels through which care is sought and mental illness is managed (Regan et al., 2013). In addition, other filters include the possibility of admission to a general hospital bed for assessment and treatment of mental illness and memory impairment, admission to a care home, palliative and end-of-life care. The pathways to care model can clarify at which levels South Asian OA experience access difficulties. For an older person, lack of support and healthcare provision may leave them isolated with symptoms for a longer period of time, experiencing a reduced quality of life (Giebel et al., 2014). Higher symptom severity can also create a greater burden for family members and particularly for those with a caring responsibility (Gaugler et al., 2010; Rosdinom et al., 2013). Hence, Copyright # 2014 John Wiley & Sons, Ltd.

both older people and carers can experience unnecessary stress, which could be reduced by effective and more approachable mental health services. In the English National Dementia Strategy (DH, 2009), three key objectives are better knowledge, timely diagnosis and improved services. However, ME groups appear to experience substantial barriers in accessing services and thus present to secondary care later than the rest of the population (Mukadam et al., 2011a). In the case of dementia, older people and their families may fail to recognise symptoms and ascribe these to the normal ageing process (Bowes and Wilkinson, 2003), thereby delaying consultation. For OA to receive these interventions on an equal basis to the indigenous population, we need to examine what understandings of dementia are held by OA, their families and wider communities, and how the experience of memory loss is formulated so that service responses can be more congruent. Furthermore, we need to identify the barriers present amongst healthcare professionals and in the nature and content of services. This review explores facilitators and barriers to accessing mental health services by South Asian OA as a ME group. The initial focus was to review the literature on dementia services, but few studies were identified, so the criteria were extended to incorporate studies on other mental health problems which are often co-morbid with poor memory, especially in OA. No such review has previously addressed this specific ME group, although some have examined the circumstances of Asian Americans (Leong and Lau, 2001) or ethnic minorities in general (Bhui et al., 2003; Cooper et al., 2010; Mukadam et al., 2011b, 2013). Hence, the present review differs in that it offers an understanding of the particular problems experienced by South Asian ethnic minorities from any country in accessing services for dementia or depression. This can inform effective implementation of policy guidelines for certain sub-groups. Of particular relevance is the Prime Minister’s Challenge on Dementia (DH, 2012), which sets out to improve health and care for dementia through improved diagnosis rates and information on dementia services. The findings can also be utilised as a basis for comparison with other ME groups.

Method Search strategy

The data bases Web of Knowledge, Pub Med and Ovid were searched using the terms: ‘older people’ OR ‘elder*’ OR ‘geriatric*’ AND ‘memory’ OR ‘forget*’ OR ‘dementia’ OR ‘alzheimer*’ OR ‘depression’ OR Int J Geriatr Psychiatry 2015; 30: 345–356

Improving assessment and access to dementia care

‘mental*’ AND ‘south asia*’ OR ‘bangladesh*’ OR ‘bengal*’ OR ‘india*’ OR ‘gujarat*’ OR ‘hind*’ OR ‘nepal*’ OR ‘pakistan*’ OR ‘punjab*’ OR ‘urdu*’ OR ‘sri lanka*’ OR ‘ethnic minorit*’ AND ‘engag*’ OR ‘service*’ OR ‘consult*’ OR ‘involv*’ OR ‘belief*’ OR ‘attitud*’ OR ‘perception*’ OR ‘understanding*’ OR ‘awareness’ OR ‘recognition’ OR ‘illness representation*’ OR ‘explanatory model*’ OR ‘ethnology’ OR ‘cultural factor’ OR ‘cultural anthropology’. Searches were supplemented by forward citation tracking using Science Citation Index and Social Science Citation Index. Further literature was obtained through hand searches and personal communications. Inclusion criteria

There were three primary inclusion criteria. These were studies: (1) involving older people of South Asian ethnicity; (2) examining recognition and diagnosis of or consultation for memory problems, dementia, depression or other mental illnesses; and (3) examining access to and use of primary or specialist mental health or social care services. Only studies published in English between 1984 and 2012 were included. Analysis of included studies

Included studies were analysed first for themes against the backdrop of Goldberg and Huxley’s (1980) model of pathways to psychiatric care. Within each theme, subthemes were identified, which consisted of examples of facilitators or barriers to psychiatric care reported in the various studies. Assessment of study quality

The quality of both the quantitative and qualitative studies was assessed using appropriate standardised tools (Boyle, 1998; CASP, 1999; Connolly et al., 2012). Eight different criteria were employed for qualitative and quantitative studies and are shown in Table 1. Each item could receive a score of ‘1’ or ‘0’, with a maximum score of ‘8’ indicating the highest quality level. Three authors (CMG, MZ and DJ) rated the studies independently. Findings Figure 1 shows the processes of selection. The initial searches produced 870 papers with four additional Copyright # 2014 John Wiley & Sons, Ltd.

347 Table 1 Quality assessment scale Quantitative studies

Qualitative studies

1. Is the target population defined clearly (by clear inclusion and exclusion criteria)? 2. Was probability sampling used to identify potential respondents (or the whole population approached)? 3. Do the characteristics of respondents match the target population? 4. Are the data collection methods standardised? 5. Is the measure or survey instrument reliable? 6. Is the measure or survey instrument valid? 7. Were special features of the sampling design accounted for in the analyses? 8. Do the reports include confidence intervals for statistical estimates?

1. Was the research design appropriate to the aims of the research? 2. Was the recruitment strategy appropriate to the aims of the research? 3. Were the data collected in a way that addressed the research issue? 4. Has the relationship between researcher and participants been adequately considered? 5. Have ethical issues been considered? 6. Was the data analysis sufficiently rigorous? 7. Is there a clear statement of findings? 8. Is the value of the research clear?

ones retrieved from following up references. After assessing each abstract, 37 studies were selected to establish whether the inclusion criteria were met. In total, 18 papers were included. Most studies or reports were conducted in the UK, with two from Canada and one from the USA (see Table 2). Given the focus of this review, studies were predominantly qualitative and employed semi-structured individual interviews with South Asian OA, their carers and health care professionals. The quality ratings varied both between studies and raters (Table 2). Although most studies were considered of good quality, some produced greater variation amongst the three raters (Dementia Plus, 2001, 2003; Bhugra et al., 2003; Purandare et al., 2007; MacKenzie, 2006), although no study was rated as poor by all raters. The variance between reviewers appeared largely to reflect a tendency for one reviewer to consistently rate higher than the other two. In analysing the literature, three types of barriers and facilitators to mental health service use were identified. These are: patient, carer and community factors; health professional factors; and structure and type of services. All three contain several sub-themes which are shown in Table 3 and discussed below. Overall, the literature suggested a larger number of barriers than facilitators, reflected in the review. Int J Geriatr Psychiatry 2015; 30: 345–356

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Figure 1 Study selection.

Patient, carer and community factors

The first domain where barriers to accessing mental health services may occur lies within OA, carers and the South Asian community at large. Four subthemes were identified: lack of knowledge about mental illness; lack of awareness of appropriate services; the stigma associated with mental illness; and the use of more culturally preferred coping strategies. First, nearly every study reported a limited understanding of causes, symptoms and terminologies of mental illness, and particularly dementia (e.g. Adamson, 2001; Bowes and Wilkinson, 2003; McCleary et al., 2013). With regard to dementia, problems with memory, unusual behaviour and social withdrawal were frequently considered to be a consequence of normal ageing. Similarly, feelings of depression were ascribed to old age itself and to social problems (Lawrence et al., 2006a). In one case described by McCleary et al. (2013), the associated behavioural changes were perceived as intentional by the spouse. Given this understanding of the terminology of dementia and its associated symptoms, the causes were variously ascribed ranging from religion to medication side-effects and in some cases to traveling abroad (Bowes and Wilkinson, Copyright # 2014 John Wiley & Sons, Ltd.

2003). The religious aspect is of particular importance, as faith plays a significant role in this community, especially in older generations. This may influence perspectives about mental illness, so that it could even be considered as punishment. Hence, understandings of the nature and causes of mental health problems are varied, not only amongst OA and their carers, but within South Asian communities in general. Second, many South Asians appeared unaware of available services (Dementia Plus, 2001, 2007; Seabrooke and Milne, 2004). If recognition of symptoms is lacking, knowledge of appropriate services is unlikely to prove useful. However, it could contribute to raising awareness of mental illness and thus increase understanding of the symptoms and causes of dementia or other diseases. Raising service awareness could thus have a secondary effect, and could take place within community centres or GP surgeries. Transport was frequently cited as another difficulty in accessing day centres or other mental health services, with patients often having to rely on assistance from family members (Dementia Plus, 2003, 2007; Joshi et al., 2008; McCleary et al., 2013). Third, stigma appears to be associated with mental illness in South Asian culture (Seabrooke and Milne, Int J Geriatr Psychiatry 2015; 30: 345–356

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Service providers, SA with dementia diagnosis and their families SA and African Caribbean carers of OA with dementia, Community and religious leaders SA and African Caribbean carers of OA with dementia, Service provider staff SA carers of OA with dementia SA OA using mental health services, SA OA not using mental health services, SA carers of those with mental health problems SA OA, black Caribbean OA and white British OA all with (treated/untreated) and without depression SA OA, black Caribbean OA and white British OA all with (treated/untreated) and without depression SA OA, black Caribbeans OA and white British OA with dementia SA and East European carers

SA with dementia and their carers Carers (Assyrian, Arabic, Bosnian, Hindi and Urdu)

Bowes and Wilkinson, 2003

McCleary et al., 2013 Morhardt et al., 2010

Mackenzie, 2006

Lawrence et al., 2011

Lawrence et al., 2006b

Lawrence et al., 2006a

Dementia Plus, 2007 Joshi et al., 2008

Dementia Plus, 2003

Dementia Plus, 2001

SA and Caucasian OA

SA and African/Caribbean carers of a person with dementia symptoms

Female Indian OA

Population

Bhugra et al., 2003

Acharya and Northcott, 2007 Adamson, 2001

Study

Table 2 Overview of studies and quality ratings

London, UK

Chicago, USA

Canada

UK

Four south London boroughs, UK

UK

UK

Wolverhampton, UK Harrow, UK

Wolverhampton, UK

Wolverhampton, UK

Scotland

Edmonton, Alberta, Canada East Midlands, north-west, southeast and south west of England West London, UK

Location

Agency and community health and social services Chicago-based ethnic agencies

CMHTs OAs, memory clinics, day centres and community mental health services for ethnic minorities Health and social care facilities, older people community centres and religious centres

Seven primary care practices

Primary care or day centres and lunch clubs

Religious, social and other SA interest groups

Ethnic minority organisations and old age psychiatric and social services

Approaching three Indo-Canadian community agencies General practitioners, carer support services, day centres and community psychiatric nurses Approaching all patients accessing secondary services over six month period Community groups and through health professionals

Sampling method

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Qualitative

Quantitative

Qualitative

Qualitative

Design

Semi-structured interviews and 10-week support group programmes Semi-structured interviews Interviews

Individual interviews

Individual interviews

Individual interviews

Interviews and a focus/steering group Semi-structured interviews Semi-structured questionnaires

Interviews

Semi-structured interviews

Interviews or case notes

Semi-structured interviews Semi-structured interviews

Data collection

7

8

8

6

7

6

6

8

5

5

5

7

4

7

6

6

8

7

5

7

6

6

8

5

5

5

6

4

6

5

(Continues)

8

8

8

8

8

8

8

8

8

8

8

8

8

8

7

Quality Quality Quality rating 1 rating 2 rating 3

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8 6 6 Semi-structured interviews, focus groups and workshops North West Kent, UK Health and social care staff

Copyright # 2014 John Wiley & Sons, Ltd.

CMHTs OAs = Community Mental Health Teams for Older Adults; OA = Older adults; SA = South Asian

Qualitative

Quantitative Case notes London, UK Indian and Caucasian OA

Purandare et al., 2007

Manchester, UK

Redelinghuys and Shah, 1997 Seabrooke and Milne, 2004

Consultation with networks and key advisors

8 7 7

3 6 6

Dementia Knowledge Questionnaire Case notes Three day centres

Quantitative

Semi-structured interviews Approached by clinicians and through inner city mental health trust

Carers of ethnic OA with dementia (SA, Black Caribbean and White Caucasian) SA and Caucasian OA Mukadam et al., 2011a, 2011b

Study

Table 2. (Continued)

Population

Location

Sampling method

Design

Data collection

Quality Quality Quality rating 1 rating 2 rating 3

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2004), where with a high value ascribed to religion, mental illness has sometimes been viewed as a punishment. Hence, open discussion of a relative’s mental health problems could cause stigma for the family, reduce social standing and even affect later generations by causing problems with marriage arrangements (Mackenzie, 2006). By contrast, younger generations, who may have adopted the norms of Western society to a greater extent, are seen as less likely to value stigma, reflecting a different view of dementia and other mental illnesses, influenced by the media and education. This suggests that stigma might be addressed through education and awareness raising in the older generations. Indeed, a perception of dementia, depression or schizophrenia as arising not from bad behaviour or thinking may encourage help seeking behaviour without fear of the consequences of stigmatisation. This is a broader issue as stigma has also been identified both amongst health professionals and the general population (Vernooij-Dassen et al., 2005; Benbow and Jolley, 2012). A fourth factor, possibly reflecting this ascribed stigma, is the presence of culturally preferred coping strategies. Placing a high value on family, South Asians have been reported to provide care for a family member with a mental illness rather than seeking medical or social care assistance (Bowes and Wilkinson, 2003; Lawrence et al., 2006a; Mackenzie, 2006; Lawrence et al., 2011). This is reinforced by views of the inappropriateness of care homes (Lawrence et al., 2011). An emphasis on care by the family and the role of stigma can result in unwell relatives being hidden away from other community members (Mackenzie, 2006), so as to avoid negative perceptions. However, when dementia-related symptoms reach a level of severity requiring very substantial family care, carers themselves may become isolated as they reduce participation in social and community activities (Mackenzie, 2006; Joshi et al., 2008). Where religious punishment is perceived as a cause of mental illness, some use faith as an alternative coping strategy (Acharya and Northcott, 2007; Joshi et al., 2008). A strong religious belief, with faith enhancing mental resilience, may alleviate some of the stress experienced by a person with mental disorder or their carer. Along with actively practising religion through meditation or prayers, keeping occupied was identified as another important strategy to cope with feelings of distress and depression (Joshi et al., 2008). In sum, many alternative mechanisms to deal with one’s own or a relative’s mental illness may be employed as a substitute for professional help. There is clearly a diversity of perspectives in the community, and some are likely to impede or act as Int J Geriatr Psychiatry 2015; 30: 345–356

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barriers to the uptake of available care services. Religion and culturally preferred coping strategies, as opposed to care home use, are considered particularly important within the South Asian community, as opposed to lack of knowledge, which is noted in other ME groups (Mukadam et al., 2011a, 2011b). Any strategy to improve access will require raising understanding of mental disorder, including causes, symptoms and treatments; and increasing the awareness of appropriate services and points of access to health professionals (Table 3). Health professional factors

The second level on which problems are encountered when accessing mental health services is the health professional level. Barriers, as well as facilitators, have been identified both by service users and carers (Bowes and Wilkinson, 2003) and by service providers (Seabrooke and Milne, 2004). In general, GPs are the first point of contact for diagnosis, access to a memory clinic and receiving treatment. However, in dealing with services a range of other professional groups may influence access to and experience of the care required. These include doctors in primary and specialist care, nurses, psychologists, psychiatrists, occupational therapists, physiotherapists, social workers and support workers, as well as receptionists, managers and ancillary staff. Four main factors appear problematic in dealing with health professionals: culture and communication; lack of knowledge of dementia; lack of knowledge of available services; and working conditions. With regard to culture, carers of PwD have expressed the wish for more staff of the same cultural background (Dementia Plus, 2001). This is understandable considering that the health professionals approached are not only GPs but also day centre staff or community psychiatric nurses, who offer carers an additional outlet to discuss their experiences. Although a strategy of employing ethnic minority staff could minimise language difficulties, its efficacy will depend on the degree of heterogeneity of South Asian communities in different cities and regions. Interpreters have often been employed to address communication difficulties (Joshi et al., 2008). However, lacking health professional training, important information may get lost through the medium of a translator, potentially reducing the value of the information obtained (Squires, 2008). Younger generations within families can also offer translation, but sharing information in such a way may not be acceptable to an older person. Therefore, Copyright # 2014 John Wiley & Sons, Ltd.

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professional translators may be the only means of obtaining information from service users, and GPs and other health professionals need to be trained in and acquainted with this process. Interestingly, offering Asian language tuition to social services staff contributed to higher satisfaction levels with the care provided (Dementia Plus, 2003). Given the close link between cultural and communication barriers however, a more productive approach might be to recruit more culturally diverse staff with different language proficiencies. This was the case in a study conducted in North West Kent, where a shortage of interpreters became a problem for GPs in their consultations. Here a need was seen for more language-proficient Asian community psychiatric nurses (Seabrooke and Milne, 2004). A second factor perceived by some as a barrier, and by others as a facilitator to appropriate service usage, is the GPs’ knowledge base (Seabrooke and Milne, 2004; Dementia Plus, 2007). In their role as a first point of access to the health service, GPs have been criticised by South Asians for their lack of knowledge of dementia, which can result in under and late diagnosis (Nielsen et al., 2011). Interestingly, GPs too expressed a wish for further training on dementia, together with other health professionals (Seabrooke and Milne, 2004). In the Twice A Child projects (Dementia Plus, 2001, 2003, 2007), South Asian carers showed greater satisfaction with the service provided by GPs following the introduction of an educational day for primary care teams. Further education and training therefore appear desirable, since lack of knowledge, skills and confidence is relevant to both other ethnic minority groups and the general population. A third factor identified is lack of awareness by GPs of local dementia services, particularly specialised services for ethnic minorities (Seabrooke and Milne, 2004). This suggests a need for services to promote their presence both in GP practices and in South Asian community centres to facilitate easy access to services (DH, 2009). The provision of leaflets on dementia and informative talks within communities can reduce these barriers, provided that language and literacy difficulties are addressed (Dementia Plus, 2003). Other avenues to raise awareness include radio and local TV broadcasts, information provided through community and religious centres, education in schools as well as directly via GP surgeries. The fourth factor is the high workload of GPs, with the result that South Asians perceive them inappropriate for consultations about emotional problems, such as depression (Lawrence et al., 2006a). GPs appear to Int J Geriatr Psychiatry 2015; 30: 345–356

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352 Table 3 Barriers and facilitators: themes and subthemes 1. Patient and carer level factors

Author Acharya and Northcott, 2007

Adamson, 2001 Bhugra et al., 2003 Bowes and Wilkinson, 2003 Dementia Plus, 2001

Culturally preferred coping strategies: (1) Increasing self-control; (2) Keeping occupied; (3) Religion; (4) Accepting the problem Lack of knowledge (terminology, symptoms and causes) – Lack of knowledge (causes and symptoms); Insufficient funds; Culturally preferred coping strategies: (1) Family Lack of knowledge (causes, symptoms and appropriate care); Stigma

2. Structure and type of services

3. Health professional level

–

–

–

– –

Limited service usage and delay in approach Inappropriateness and inaccessibility of services

Lack of training; Communication difficulties

Dementia Plus, 2003

Lack of knowledge (Dementia understanding); Transport problems

Lack of regular community visits; Need for culturally sensitive services; High costs for paid carers Lack of culturally appropriate services; Lack of carer support services

Dementia Plus, 2007

Lack of knowledge (Dementia understanding; availability of and entitlement to services); Stigma; Transport problems

Higher number of respite care days required; Occasional reports of lack of cultural awareness

Lack of knowledge (symptoms, causes and services); Stigma; Transport; Culturally preferred coping strategies: (1) Maintaining positive attitude; (2) Religion; (3) Keeping occupied Culturally preferred coping strategies: (1) Self-improvements; (2) Social support; (3) Religion

Poor awareness of cultural and dietary requirements in day centres; Request for more carer support

Joshi 2008

et

al.,

Lawrence et al., 2006a Lawrence et al., 2006b Lawrence et al., 2011 MacKenzie, 2006 McCleary et al., 2013 Morhardt et al., 2010 Mukadam et al., 2011a, 2011b Purandare et al., 2007 Redelinghuys and Shah, 1997 Seabrooke and Milne, 2004

Lack of knowledge (depression as a result of social problems and old age) Lack of knowledge (symptoms); Culturally preferred coping strategies: (1) Social support Associated stigma causing culturally preferred coping strategies: (1) Social support Lack of knowledge (Attributing symptoms to normal ageing); Reliance on family members for accessing support services Lack of knowledge (causes) Lack of knowledge (causes, symptoms, accessing services); Different cultural expectations; Culturally preferred coping strategies: (1) Family Lack of knowledge (terminology, symptoms and causes) – Lack of knowledge (symptoms, appropriate services); Stigma; Financial constraints

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–

– Care homes considered inappropriate –

Cultural and language barriers; GPs effectively provide pathways to appropriate support Varying levels of satisfaction with GPs; Different attitudes towards helpfulness of specialist services Inconsistent reports on GP satisfaction (lack of GP knowledge on dementia); Language barriers Language barriers

GP considered inappropriate service for depression; counsellors more appropriate – – –

–

–

–

–

–

– Service sensitive to the needs of ethnic minorities Most services not tailored to culture, dietary requirements and language

Lack of knowledge (dementia diagnoses) – Bilingual and ethnic staff Communication difficulties; Cultural differences; Lack of training for dementia and cultural differences; Limited knowledge of GPs about appropriate dementia services

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be regarded mainly as points of access for physical symptoms. This perception can contribute to low diagnosis rates of mental health problems in South Asian ethnic minorities (Nielsen et al., 2011), and may encourage greater reliance on alternative, culturally preferred coping strategies. Although in the short term, little can be done about the large workload of GPs, the requirement for time to be available to listen to patients and families is a challenge for primary care which has resonance beyond the needs of minority groups. For South Asian communities it is necessary to emphasise that GPs’ responsibility also encompasses consultation for mental health and emotional problems. Hence, barriers identified at the health professional level are not only a function of professional skills, abilities and responsiveness, since the use of services is also dependent upon the attitudes of the South Asian community itself. There is thus an interaction between these factors. Structure and type of services

The third identified barrier and facilitator to accessing mental health services lies within service type and structure. Perhaps, the most problematic experience is cultural insensitivity, even if carers are aware of services (Seabrooke and Milne, 2004). Although South Asians represent the largest ethnic minority in the UK (ONS, 2011a), most services, including day centres and GP surgeries, fail to reflect dietary or other cultural requirements, such as linguistic or religious needs (Dementia Plus, 2001, 2003, 2007; Seabrooke and Milne, 2004; Joshi et al., 2008). Employing bilingual and South Asian health care professionals and locating facilities within the ethnic minority community may raise the level of consultation by this group towards that of the general population (Redelinghuys and Shah, 1997). Lack of dietary alternatives or staff conversant with language and South Asian culture reduces carers’ propensity to use facilities for their relatives with dementia. Consequently carers, an already vulnerable group (Gaugler et al., 2010), lack support and are at risk of increasing stress. Specialist resources, such as an Asian carer support group in Wolverhampton, improved carer satisfaction by offering a platform for peer exchange of experiences (Dementia Plus, 2003). Hence, context specific service design is important, sometimes involving restructuring and sometimes establishing new services tailored to cultural needs and offering greater carer support (Joshi et al., 2008). Copyright # 2014 John Wiley & Sons, Ltd.

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Discussion This literature expands on previous studies of access to mental health service use by ME groups through its focus solely on South Asian OA. The personal and community barriers identified here concur with those reported for Black Caribbeans, Chinese, Hispanic, African–Americans and South Asians (Cooper et al., 2010; Mukadam et al., 2011a, 2011b), although the role of religion and perceptions of cultural inappropriateness of care homes appear specific to South Asians. Presenting the greatest challenges were: limited understanding of mental illness; lack of knowledge about available services; perceived stigma; and the use of culturally preferred coping strategies. Moreover, GPs’ varied knowledge about dementia may add to the linguistic and cultural difficulties experienced in dealing with health professionals. A final barrier, noted elsewhere too, was a degree of cultural and linguistic insensitivity of services. Although this is relatively longstanding, it appears that further development is required to resolve this. Overall, these three primary barriers (South Asian communities, health professionals and services), can be seen as akin to the first three filters in the pathway to psychiatric care in Goldberg and Huxley’s model (1980, 1992), in which access to mental health services may be hindered by different filter specific factors. Table 4 summarises the findings of the review in the light of this framework, the Manchester Pathways Model, describing the pathway, key filters and influences within each, to specialist mental health care in South Asian OA. Given the current focus on recognition, diagnosis and access, it has only three levels. In addition to highlighting barriers, strategies for improving access have been identified with examples of successful implementation. These included training and providing Asian language tuition for health professionals (Dementia Plus, 2003). Similarly, practicebased workshops and decision support software can also be effective in improving the detection and management of dementia (Downs et al., 2006). Set against recent policy guidelines (DH, 2009), understanding how issues of dementia knowledge and awareness, timely diagnosis and access to care can be addressed is not only relevant for the general population, but specific for those groups that particularly struggle in accessing specialist care. In a recent report by the AllParty Parliamentary Group on Dementia (2013), it was suggested that the roles of the Care Quality Commission and Health and Well Being Boards could extend to take cognisance of improving access to dementia services for black and ME groups. Another Int J Geriatr Psychiatry 2015; 30: 345–356

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354 Table 4 Pathways to specialist mental health care for South Asian Older Adults (Manchester Pathways Model) The community

Filters

Key influences

General practice or primary care

Level 1 First Filter—consultation with GP/mental health services

Level 2 Second Filter—appropriate problem recognition by GP/services

Level 3 Third Filter—referral/uptake of specialist/care services

Patient, carer and community factors

Health professional factors

Structure, content of services

• Belief that GPs only deal with physical health problems or don’t have time to deal with mental health problems • Lack of information

• Symptoms seen as normal ageing • Behaviours seen as intentional • Mental health problems seen as punishment • Lack of awareness of services • Self-stigma—MH viewed as punishment, reducing standing in the community, marriage arrangements • Adoption of Western society culture • Employment of faith as coping mechanism • High value placed on family and Importance of family taking responsibility • Belief that nothing can be done • Fear and denial of symptoms • Previous experience and experience of others in community taking up services • Severity and type of symptoms • Learned patterns of illness and behaviour • Attitudes of relatives

• Understanding of the culture and language

• Availability within SA community locality

• Communication skills and quality of translation skills available Information lost through medium of translator • Symptoms seen as normal ageing • GP or professional’s knowledge base/belief that nothing can be done. • GP or professional’s lack of awareness of local dementia services • GP high workload lack of time to assess • Lack of skills; Training and attitudes

• Cultural insensitivity of services. Language problems

• Lack of transport • Extent of involvement of SA community in design of services • Possible costs involved • Availability and quality of services

• Interview techniques • Personality factors • Presenting symptom pattern • Socio demographic characteristics of patient

initiative, Connected Communities, is providing targeted approaches to raising dementia awareness for minorities (Alzheimer’s Society, 2014). Hence, ethnic variations in access may require differential application of policies for ME groups relative to the general population to achieve equitable outcomes. In following these policies, one barrier, stigma, has been referred to as present within South Asian culture. However, similar barriers may also be present amongst health professionals, where diagnosing dementia early can be considered as unnecessary in the absence of cure (and therefore stigmatic) with a perception that providing care in the later stages is all that can be done (Vernooij-Dassen et al., 2005). These authors report variations in stigma across eight European countries, and in Portugal, for example, a Copyright # 2014 John Wiley & Sons, Ltd.

• Failure to meet dietary requirements.

dementia diagnosis may inhibit nursing home entry. This health professional stage (second filter) of Goldberg and Huxley’s (1980, 1992) model therefore needs to be considered not only from a culture-specific (linguistic and cultural problems) but also from a more general perspective, where improving knowledge on dementia and reducing stigma could improve timely diagnosis. Overall, it would appear that South Asian OA and their families can experience similar difficulties in several countries. This is consistent with the findings of Mukadam et al. (2011a, 2011b) for ME groups in general regarding dementia. It is interesting to note, however, that the majority of the literature focusing on South Asian OA specifically has accumulated in the UK, with only two studies having been conducted in Int J Geriatr Psychiatry 2015; 30: 345–356

Improving assessment and access to dementia care

355

Canada (Acharya and Northcott, 2007; McCleary et al., 2013) and one in the USA (Morhardt et al., 2010). However, as previously noted, South Asians represent a large proportion of ME groups in AngloAmerican countries (Tran et al., 2005; ABS, 2006; ONS, 2011a; USCB, 2012). With apparently similar findings across countries, the identified barriers and facilitators are likely to require similar responses as they are less dependent on location than ethnic minority status. It remains the case that the findings presented here need to be considered with some caution. Although all studies indicate certain barriers in approaching mental health services, the make-up of the South Asian population requires careful definition. South Asians are a heterogeneous group, with members having different linguistic, regional, financial and social status backgrounds (Brown, 2000; Becares et al., 2011). There are multiple subtle language variations which can be reflected within cultural attitudes and perceptions, and knowledge about causes of mental illness may vary depending on the geographic location of migration (Wynaden et al., 2005). However, this issue is very difficult to address due to the low number of people from certain regions. This heterogeneity can cause difficulties in implementing culturally sensitive language and cultural facilitators, such as linguistically trained staff, as any health professional may lack knowledge of certain language subtleties. A further limitation lies in the studies themselves, where, despite some interrater variation, some studies were rated as 5 or below. However, most studies were considered of acceptable quality.

combination of responses, pathways may be improved not only for South Asians, but also for other ME groups. These factors warrant attention as part of the implementation of the Dementia Strategy (DH, 2009) in raising awareness and improving timely diagnosis rates and access to dementia care in South Asian populations, as the Strategy is already associated with improved diagnostic rates in the general population (Mukadam et al., 2014). The effect of dementia diagnosis incentives for GPs upon this group is as yet unknown (NHS England, 2014).

Conclusion

Acknowledgements

This review has highlighted several barriers to accessing mental health services, for South Asian OA and their families, particularly for those with diagnoses of dementia and depression. These factors are relevant to the responses of relevant healthcare professionals. The findings are arranged within the framework of pathways to mental health care, providing a new model for South Asian OA. Four main areas emerged that require attention: (1) raising awareness of mental health and dementia as well as of available services in South Asian communities; (2) tailoring services better to their cultural and linguistic requirements; (3) educating health professionals further on dementia and increasing knowledge about existing services; and (4) employment of staff from similar cultures with multiple language skills. Through such a

This report presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit Research scheme (PB-PG-1208-18116). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Copyright # 2014 John Wiley & Sons, Ltd.

Conflict of interest None declared. Key points

• • • •

South Asian older adults experience difficulty accessing secondary care for dementia and related disorders. Barriers and facilitators to care are encountered at different levels: within the community and family; on a health professional level; and within services. Lack of information, stigma, culturally preferred coping strategies and cultural and linguistic difficulties barriers are the most common barriers. Implementing policies to improve dementia awareness, timely diagnosis and access to services needs to be tailored to ethnicity

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