CSIP West Midlands
The Mental Health and Well Being of Black and
Minority Ethnic Elders: A Foundational Report on
the Research Literature and a Mapping of National
Dr Pauline Lane
1st draft July 2007
Part One: Key issues in BME elders mental health and well being
Part Two: Issues for specific BME elder communities
Part Three: Improving our practice and developing cultural competence
Part Four: A national mapping of projects for BME elders to support their mental health well
Introduction: This foundational report forms part of a larger national project for CSIP and the
Department of Health OMPH programme; it is a one year project that is being developed to promote the
mental health and well being of black and minority (BME) ethnic elders and to improve access to mental
The one year project: The one year project aims to produce practical resources to improve the access
and quality of mental health and care services for black and other ethnic minority elders and their
families/ cares on the issues of depression, dementia and delirium. The resources/ materials will be
developed in partnership with four voluntary sector organisations who will consult with community
groups to encourage diversity, creativity and participation in order to develop materials (text/ film/
audio) that support the specific needs of BME elder service users and their carers in different
communities (but the materials would have national application). It would be important not to create a
‘one‐resource–fits–all’ approach but to identify a range of resources that may be beneficial to different
communities / individuals. (All materials should be led by need and not simply by diagnosis). The one
year project aims to:
Produce a short participatory film on BME elders living with
depression with voice‐ over available in several different languages.
The film will be directed by the project lead but work in participation
with the partnership organisation and black and other ethnic
minority elders and their families/ cares together with a filmmaker.
Establish a base line of information to inform the development of
community based resources that will aim to improve the
understanding of mental health needs of BME elders and to promote
understanding and access to mental health services.
Contribute towards the development of the Guidance for
Commissioners of OPMH services: Working with BME Older peoples
Contribute towards the development of Guidelines for Health
Practitioners and Voluntary Agencies Working with BME Older
As we grow older we want to
have good health and a good
quality of life. We want to be
respected for continuing to
make a valued contribution to
society. People of whatever age
or background wish to maintain
their dignity: to have self
respect, to have their essential
identity and independence
preserved. Where mental
and/or physical illness
intervenes, it is the job of health
and care services to support
people in maintaining their
dignity, autonomy and
Older people with mental health
problems also want to exercise
control over their lives and to
make choices, including
decisions about their own care.
They also need to be able to
trust care staff with their
mental well‐being as well as
their physical care.
Everybody’s Business. Integrated
mental health service for older
adults: a service development guide
(DH/ CSIP 2005)
The project builds upon a range of policy and guidance documents that actively seek to promote and
support the mental health and well being of elders. These include
• A new ambition for old age: next steps in implementing the NSF for older people (DH 2006a)
• Let’s Respect (CSIP 2006)
• A sure start to later life: ending inequalities for older people (ODPM 2006)
• Promoting mental health and wellbeing in later life (UK Inquiry into Mental Health and Well‐Being
in Later Life 2006)
• National service framework for mental health – five years on (DH 2004)
• National service framework for older people (DH 2001a) Mental wellbeing in older people
• National service framework for mental health (DH 1999)
• Our health, our care, our say: a new direction for community services (DH 2006b)
• Making it possible: improving mental health and wellbeing in England (DH 2005a)
• Independence wellbeing and choice: our vision for the future of social care for adults in England(DH
• Securing better mental health as part of active ageing (DH 2005c)
• Fair access to care services (DH 2002)
• Building capacity and partnerships in care (DH 2001b)
• Everybody’s business – integrated mental health services for older adults (DH/ CSIP 2005)
• Opportunity age – meeting the challenge of ageing in the 21st century (DWP 2005).
This initial report is the first step in the one year project and it seeks to
a) Examine some of the key debates in the field of BME older people’s mental health and
b) To map key mental health projects and resources for black and minority ethnic elders across England.
Terminology : It is useful to have some clarification about some of the key terms being used in the
Ethnic/ ethnicity/ ethnic minority: Ethnicity is a term that is open to much debate and one that often
causes great confusion. The word 'ethnic' is derived from the Greek word 'ethnos', and simply means
'nation' or 'people'. Certainly most definitions of ethnicity imply a shared culture, religion, traditions or
heritage and language and geographical origins (Helman 2000:2). For many people, their ethnicity is not
a static but a fluid identity and this may change over time. Certainly there are many definitions of
• One definition of ethnicity suggests that ethnic minorities are individuals with a culture that is
distinct from the majority population. (Manthorpe & Hettiaratchy 1993). However, this generic
approach ignores some of the experiences and inequalities within minority white populations,
such as travelers, Irish communities and other white minority communities where cultural
differences may not be so obvious.
• It is also important to recognize that some people may prefer to place emphasis on their
religious allegiance (e.g. Buddhist, Hindu, Muslin etc) rather then their cultural/ ethnic origin
(Mizra et al 2007), although many people will identify themselves through both religious and
cultural/ ethnic alliances (such as Gujarati Muslims).
• The research on refugee ethnic identity is conflicting, with some authors suggesting that people
may seek to reinforce their traditional cultural identities and origins (see Eriksen 2002, Barth
1996). Other research suggests that refugees are prone to loose their original cultural identities
as patterns of behaviour that sustained them in their country of origin are no longer applicable
in the country of asylum (Mallki 1995).
In addition, it should be recognised that even though people may identify with an ethnic
group/community this identity may change over time and research suggests that many temporary
migrants may become unexpected settlers. For example, in the 1960s, many Bangladeshi migrants from
Sylhet expected to return home after amassing some capital. But many people could not save as much
as anticipated and became settlers in a country with very different traditions to their own. For some
people, this cultural difference contributed to a heightened awareness and value of their own heritage,
which may provide structure, stability and meaning to their lives (Ahmed 2005: 195‐196). However, in
contrast, many second generation migrants may reject their parents cultural traditions and language,
and some researchers have suggested that migrants may assert their Britishness as a way of gaining
acceptance and minimising discrimination (Abbas 2005:9)
Therefore, when addressing the mental health needs of older black and ethnic minority people, it
important to recall that we all belong to an ethnic group but each of us are unique and we all have
differing needs. We need to recognise the diversity of BME older peoples experience and mental health
needs, understanding that individual voices, as well as community experiences, need to be heard. We
therefore need to move with caution when we start to talk about ‘BME communities’ as if they are a
homogeneous group and recognise the differences within and between BME communities as well as
among individuals. In addition, we need to ensure that we do not over focus on cultural factors/
differences and remember to take into account wider institutional factors (such as discrimination,
poverty, housing, etc.) as they affect the lives and health of an individual.
In this study, we shall use the terminology used in the specific research finding as they relates to BME
elders and in the community consultations that are to be conducted later in the national project, we
shall use a self‐definition approach to ethnicity, that is to say we shall be working with community
groups who have defined their own ethnic boundaries (e.g. Chinese older peoples community group).
Elders/ older people: Although much of the literature focuses on the problems and challenges of old age
it is important to remember that for many elders it can also be a positive time which is not necessarily
linked to decline and dependency and while it is important not to underestimate the material and
resource needs of BME elders , it is also necessary to challenge negative stereotyping and examine the
possibilities for pursuing satisfying lives. There is a need for health practitioners to build upon and
support the reliance of BME elders their families, carers and communities.
The World Health Organisation has suggested the model of Active Ageing that incorporates a whole life,
whole person approach to ageing. This model incorporates the experiences of the unavoidable changes
we all face as we age, alongside a positive sense of continuing to strive for and achieve fulfillment of a
range of hopes and aspirations. While this report embraces the WHO concept of ageing, it also applies
the terms elder/ older person to anyone of State Pension Age.
Part One: Key issues in BME elders mental health and well being
Demographic trends and BME elders:
It is recognised that we are living in an increasingly ageing population and by 2020, one in five UK
citizens will be aged 65 plus (DH 2005). According to the Office of National Statistics (2001) currently
only a small proportion of older people in Great Britain (4 per cent) are from non‐White ethnic minority
groups. In 2001, 15 per cent of people from non‐White ethnic minority groups were aged 50 and over
(around 672,000 people). This compares with 33 per cent of the overall population.
Age distribution: by ethnic group, April 2001, GB (Office of National Statistics 2001
o The Census (2001) suggests that the population in England aged 65 and over was
predominately White (97.08%). Of the White group aged 65 and over, around 2% were
White Irish and under 2% were White Other. The BME group made up 2.92% of the total
population of over 65s in England, of which Asian or British Asian was the largest group at
118,816 (1.52%), followed by Black or Black British at 73,256 (0.94%). The number of older
people in the remaining two groups was comparatively small: with 18,556 (0.24%) in the
Mixed group and 17,531 (0.22%) Chinese or other ethnic groups.
o Whilst there is currently a lower percentage of people over 60 within black and minority
ethnic (BME) communities, compared with the white population, over the next decade
there will be a significant increase as middle aged people from these groups reach
o Research suggests that currently the highest concentrations of BME older people are in the
South East, particularly London where over 7% of the BME older people belonged to the
Asian group; 6% to the Black group and around 1% to the Chinese and Mixed groups. The
second largest concentration of BME older people is in the West Midlands where Asians
accounted for 3%, Black 2% and Chinese and Mixed groups less than 0.5% of the local
population. (Age Concern England 2007).
o The vast majority of BME elders live in large metropolitan or inner city areas and only a
small minority live in rural areas of England. There is an over‐representation of people from
BME communities living in poor housing – BME households are less likely to live in decent
homes – 40% live in non‐ decent homes compared to 32% of white households (2001
English House Conditions Survey, Office of the Deputy Prime Minister).
o It is widely accepted that problems experienced by BME people living in inner city areas are
closely linked to the problems of deprivation in many inner city areas where resources and
services are particularly stretched (Age Concern England 2007).
o Problems for those who live in rural areas or areas with much smaller BME populations are
often compounded by social isolation and the lack of recognition of their needs by service
o According to the 2001 Census, differences in mortality rates mean that women aged 65 and
over normally outnumber men. This can clearly be seen in the White (with 58 per cent
women), Mixed (55 per cent) and Chinese ethnic groups (54 per cent). However for some
ethnic groups this has been affected by differing immigration patterns. This is particularly
evident in the Bangladeshi group where only one third (34 per cent) of those aged 65 and
over were women. Similarly, for the Pakistani group, women made up 45 per cent of the 65
and over age group.
Some of the health challenges for BME elders
While many elders will live into a healthy old age, research suggests that many BME elders consistently
experience poorer health especially in the rates of mental ill health (NIMHE, 2003, PRAIE 2005).
Research suggests that the social determinant of health over a person’s life time may have a
considerable impact on the health of BME elders and it has been suggested that ethnic elders face a
whammy’ in terms of age, ethnicity and socio‐economic
deprivation (Rait at al. 1996). Research
o There is a substantial gap in income and wealth and
housing conditions, between older people in the white
community and ethnic minority groups and this often
impacts on health and well being over a life time.
o White and BME women tend to be located among those
receiving a state pension only, this is often because their
patterns of work and family care responsibilities resulting
in sufficient payments to a pension scheme. Managing on
a low income can have consequences over and above the
difficulties of maintaining a basic standard of living. For
example, this may impact on social functioning including
the capacity to maintain relationships with friends and
family and can result in social isolation (Nazroo 2002).
o Ethnicity may have a significant bearing on quality of life.
White elders tended to report better levels of health and
higher incomes than other ethnic groups. At the same
time, many BME elders view the process of growing older
more positively. (Fisher et al 2006)
o For all older people practical and emotional support is
most often provided by families and friends, but for
minority ethnic elders, voluntary organisations play a vital
role in providing support in terms of information and
advice (Fisher et al 2006 ).
o The impact of migration may mediate individual
components of quality of life, such as social support
o BME elders are more likely to describe their health status
as poorer than the total population (PRIAE 2006; Age
Concern, 2002: 3).
o Although many older people from black and minority ethnic groups are registered to and
use General Practitioner services, the usage of community health services among black and
minority ethnic elders tends to be low (Age Concern, 2002: 3).
‘’ It is widely reported that people
with mental health problems, black
and minority ethnic communities
and older people as separate groups
experience social exclusion. It
follows, then, that black and
minority ethnic older people with
mental health problems are a
particularly vulnerable group at risk
of social exclusion, which could lead
to depression as well as
exacerbating other mental health
problems that may go untreated.
Unfortunately, access to mental
health services for black and
minority ethnic older people and
their carers remains problematic.
Barriers include issues of language,
knowledge of what services are
available, and the attitudes and
practices of service providers, as
well as cultural factors in the
perception and understanding of
mental illness’’. Everybody’s Business.
Integrated mental health service for older
adults: a service development guide (DH/
o People from minority ethnic groups are less likely to use health and social care services and
are often less aware of what help is available (Ahmad et al 2000).
o The Health Survey of England (1999) reports that South Asian men and women as well as all
Black Caribbean women aged 55+ report relatively high levels of limiting longstanding illness
compared to the general population (Patel, 2003: 21 cited in PRAIE 2007).
o Differing religious and cultural practices appeared to affect the way in which participants
were prepared to comment negatively on their current quality of life. This may be especially
noticeable among some Muslims who might emphasise that there was a divine purpose
behind an event (Fisher et al 2006
Ageing and culture
Interestingly the literature of ageing and culture addresses the issues of ‘cultures of ageing’ as well as
‘ageing within different cultures’
Cultures of ageing.
There is an extensive literature on cultures of ageing and much of this focuses on how becoming older in
itself creates a different cultural identity. This literature / research reflect the demographic changes as
we start to become an increasingly ageing population and it embraces ideas about how culture shapes
our experiences of ageing (Torres 1999, Twigg 2004). There are many theories of ageing, although most
of them seem to be Eurocentric in focus.
• The 1950s saw beginnings of theoretical debates about ageing and society and in particular
about people’s loss of role following retirement and how this presented a problem for society
(Jones 1993). One influential theory was ‘disengagement theory ‘ that suggested how older
people should disengage from work roles and prepare for the ultimate disengagement of death
(Cumming and Henry 1961).
• Later political economists such as Walker and Townsend ( 1981) saw age in relation to advanced
capitalist economies and how the experiences of different elders related to their class positions
during their working lives. Walker in particular was interested in how the State created a
situation of dependency for working class elders and this was seen as a reflection of the
inequalities of class and employment opportunities.
• Other debates in gerontology examined the construction of age. The work of Gubrium (1975)
was important in his analysis of Alzheimer’s disease in the USA and the establishment of
boundaries between ‘normal’ and pathological aging, where old age is seen as a "mask" which
conceals the ‘essential’ identity of the person beneath. Later these ideas were extended by
Featherstone and Hepworth who suggested that age should be viewed as fluid. They also
critiqued the medical model of ageing as a process of decline (1993).
• In the late 1980s and 1990s feminism was to
influence the debate on ageing. In part this critique
was an extension of the political economist’s
position as feminists examined how womens role in
the work place impacted on their old age (Acker
1988 cited in Arber and Ginn 1991). In addition
there was a rising debate about the construction of
womanhood in older age and how age was seen to
have negative connotations for woman.
• It is only in the past few years that gerontology has
started to look at ageing as culture‐specific. More
recent research of BME elders ageing has started to
look at how people are simultaneously influenced
by two or more cultures (Torres 2001).
There is a substantive literature on how different cultures
perceive old age (Gozdiak, 1988). Most cultures instils in its
communities ideas of what successful aging means, of the
kind of respect due to an older member of society, and of
the types of relationships that should exist between an
elderly parent and his or her child. Age is defined by society
therefore the definition of age may be may be varied across
cultures (Gozdiak, 1988). In some societies, old age is
defined in functional terms, based on one’s ability to
perform certain activities, for example, when the body
looses physical vigour needed to work or carry on
demanding everyday tasks. In other societies, ageing is defined in formal terms based on external
events, such as retiring or becoming a grandparent (Hatzidimitriadou 2005).
Cultures differ in their attitudes towards their elderly members and the expectations of older people as
well as the status attributed to old age (this includes issues such as a persons lifestyle expectations and
the roles and responsibilities they anticipate for themselves). However, research suggests that for many
elderly migrants, it can be difficult to adapt cultural expectations and this can create individual and
family stress (Desai 1990).
Culture and mental illness
When looking at BME elder’s mental health, it is important to emphasis the nuances of 'culture and
mental health' and how individuals interact within these. It is important to avoid stereotypical
generalisations and at the same time it is necessary to guard against unsubstantiated 'cultural'
explanations of differences in health or health behaviour (Howlett et al 1992).
Black and minority ethnic elders do
not enjoy the same quality of life as
their peers, continue to have many
unmet needs, from care to quality of
life issues, which reduce
their potential for participation, have
witnessed changing family structures
and are growing old in a country
that many of them thought they
would not remain in after their
‘working period’. These experiences
are in addition to a lifetime where
discrimination and disadvantage
have often been an everyday part of
(Policy Research Institute on Ageing and
Ethnicity cited in A Sure Start to Later
Life ODPM 2006)
One of the key issues in mental health is the cultural specificity of expressing illness (often known as
idioms of distress) For example, it has been suggested, that some groups may experience particular
"culture‐bound" syndromes that is a cluster of symptoms that is restricted to a particular culture such
as "sinking heart" often described by Punjabi people (Krause 1989).
Some people may be more likely to somatise mental illness (i.e. locate mental/ emotion stress within
the physical body) that is they experience and describe psychological distress more in terms of physical
symptoms, which are less likely to be identified as mental illness in both epidemiological research and
clinical practice who may be using biomedical / Eurocentric assessment processes (Rack 1982, Livingston
and Sembhi 2003). Some researchers suggests that the reliance on a biological definition of disease
crucially undermines an understanding of how different the culturally shaped illness may be, including
symptoms, help‐seeking behaviour and the course of illness (Kleinman 1987, Gilliam 1989)
An additional dimension of help seeking behaviour and the medical encounter is the importance of
language (see Tribe and Raval 2002 for a detailed discussion on this subject). This relates to both the
use of interpreters in the therapeutic encounter as well as the terminology commonly used to describe
mental distress such as "depression", "stress", "anxiety", being "mentally ill", or "mentally disturbed".
Western biomedical terms may not relate to other cultures systems of health beliefs and language.
While some cultures have terminology that might indicate a shared meaning such as the Bengali terms
"dorchita" (meaning feeling anxious) "oshanti" (having no peace) and "shorill shanti" (something being
stressful). But in many cultures mental experiences are expressed in terms of the physical pain and for
others it can be seen to be linked to spiritual beliefs, such as the Somalia concept of the jinn (spirit)
causing mental distress.
However, it is not possible to generalise about the specific beliefs
held by an individual and a sensitive
inquiry about beliefs should
be an essential part of taking a history, whatever the patient's
It is important to stress that while cultural understanding is significant to providing good care to BME
elders, it is also important to recognise that a number of structural or organisational issues that go
beyond language and culture can affect health and access to health. These include issues such as the
social determinants of health (e.g. poverty, poor housing, racism, employment opportunities etc) as well
as the institutional organisation and delivery of care and related policies.
The mental health of BME elders
Before looking at some of the issues concerning BME elders and their carers in relation to mental health,
it is important to recognise that the experiences of migrants in the UK has influenced the current health
of BME elders today. The historical experiences of living in a ‘racialised culture’ where many people have
had to fight for their rights and they have had to struggle for employment, housing, education and the
right to be recognised as equal citizens. As Boateng and Patel (1999) suggest, BME elders are not just
‘passive or powerless’
‘The BME elders of today were part of this resistance and hence their struggle
against racism and exploitation in old age is not new. Portraying it as new plays
into the hands of those who divide BME generations into 'passive' and 'active'
categories, seeing older people as passive and content to accept their position in
British society, while black youth are viewed as suffering from 'culture‐clash',
(Boateng and Patel 1999)
The social inherence of health is significant for many elders and research suggests that many BME elders
are more likely to face a greater level of poverty and have lower incomes than white older people and
are more likely to live in poorer quality housing which lacks basic amenities, and this may affect their
health(Butt and O’Neil 2004). These points are significant in the planning, development and delivery of
mental health services to BME elders and their carers. In addition, many BME elders will not have had a
positive experience of official organisations and it is important for health commissioners, as well as
service providers to recognise the expertise of BME elders to identify and help to plan for their own
needs and care in a way that is appropriate to them.
While there is a substantive amount of national policy promoting the rights of BME elders into mental
health care (see Appendix 1) there is a notable absence of national data on the mental health of BME
elders. Most of the research on BME elders is based on localised studies (even the PRAIE European
(2005) study drew on regional data from three regions
for the UK study), although much of this localised and
community based work is useful. For example, in a
study by Seabrooke and Milne Culture and Care in
Dementia: A study of the Asian Community in North
West Kent(2004), found that
• There may be little awareness of older people's
mental health issues within black and minority
ethnic communities, for instance, some Asian
languages do not have an equivalent word for
dementia and symptoms may therefore be
unrecognised or misunderstood.
• In some communities a lack of understanding
and the stigma attached to mental illness may prevent families from seeking help. This may
particularly be the case where the community culture places great emphasis on self‐reliance.
• Language barriers may prevent people from receiving information about what is available and
how to access help. Even where printed information in minority languages is available, this may
not help those older people who have a limited level of literacy in their own language.
• Unfamiliarity with social care services, which may not exist in minority cultures, may prevent
people from requesting services or lead to misunderstandings about their role. Medical services,
which are better understood, and free from stigma, are often considered more acceptable than
social care services. Low uptake of social care services by older people from minority ethnic
communities may lead to demand being overlooked or underestimated by commissioners.
• The lack of a professional interpreting service may make it difficult for assessors who do not
speak the older person's preferred language to conduct an effective assessment. The use of
friends or family members as interpreters may compromise confidentiality or influence the
assessment. Older people affected by dementia, who were once able to speak English as a
second language, may lose the skill as their memory deteriorates. Even with good language
skills, cultural differences may result in meaning and nuance being lost.
• Standard diagnostic tests for dementia, or depression, may not be culturally appropriate and
may lead to inaccurate diagnosis.
• Assessors may not be able to offer a sensitive and effective assessment because they are not
sufficiently familiar with the lifestyles, health, religious and cultural needs of older people and
their carers from minority ethnic communities.
• No suitable services may be available where the older person's language is spoken and their
cultural, religious and dietary needs met.
• Conversely, assessors may make assumptions about the lack of acceptability of mainstream
services to older people and their families, and not offer them.
Screening BME elders
While research suggests that BME elders may have a range of mental health needs, the process of
identifying needs through standardised assessment. There is conflicting research evidence on the
cultural appropriateness of mental health screening and assessment tools. As an example of this
conflicting evidence, what follows is an illustration of the research based on the Mini‐Mental State
Examination (MMSE), this is a brief assessment instrument used to assess cognitive abilities in the
elderly and is the most commonly used test for complaints of memory problems or when a diagnosis of
dementia is being considered. While some research suggests that this tool is culturally transferable (this
includes when the MMSE has been translated into different languages), other research appears to
suggest that assessment tools such as the MMSE are not transferable across cultures. Example of these
• Research by Lindsay et al (1998) aimed to evaluate the performance of a Gujarati version of the
MMSE. The effect of ethnicity on MMSE performance was also examined. The results suggested
that the Gujarati version of the MMSE performed adequately as a screen for dementia in this
immigrant community population.
• Research by Kabir and Herlitz (2000) adapted the MMSE for the cultural context of Bangladesh
and for use in populations irrespective of literacy skills. In the Bangla Adaptation of Mini‐mental
State Examination (BAMSE), the MMSE items were changed in such a way that they would be
applicable for illiterate individuals, as well as being culturally relevant in Bangladesh. To enable
comparison between the BAMSE and MMSE, the literate elderly were tested with both
instruments. The results showed that, in comparison to the MMSE, the BAMSE demonstrated
satisfactory test properties, although reliable differences were found on some of the individual
items when the two instruments were compared. More importantly, the BAMSE was found to
be less sensitive to age and education than the MMSE. Finally, the results suggest that in the
socio‐cultural context of Bangladesh, irrespective of literacy skills, the BAMSE is an instrument
that can be used to assess cognitive function of the
• Research by Rait (2001) aimed to assess whether
screening instruments for depression and cognitive
impairment were acceptable to older African‐
Caribbean and South Asians in the UK. It involved the
modification and translation of screening
instruments using community and translation
groups. The results indicated that there was a
relationship between co‐morbidity, education and
MMSE score. The study also illustrated the potential
use of adapted versions of existing screening
instruments in older people from ethnic minority
groups in the United Kingdom and the challenges of
cross‐cultural research. Significantly the researchers
suggested that the adaptation process requires time
and community participation.
However, there is also a growing body of research critiques
current assessment instruments. For example
• Research by Livingston and Sembh (2003) suggests
that cross‐cultural assessment of dementia in older
people has specific
pitfalls related to language and
literacy skills. In particular,
the use of culturally
biased screening instruments that rely
recognition and familiarity with test situations
be inappropriate or misleading for people with
impairment. Culturally appropriate norms
also important in the evaluation of dementia.
be literate in a different language or
Recent immigrants from rural
areas may have had little need
for the concept of
complex maps and exact dates. As a result,
interpreting cognitive testing without knowledge of education
and background is likely to lead to
errors in diagnosis. They suggest that it
may be important, therefore, to validate and modify
for examining cognitive function in different ethnic groups.
• Research by Stewart, Robert et al (2002) compared the normative data for the MMSE in a UK
African‐Caribbean population and compare those with norms for white UK‐born elders. The
study found that the median value for the distribution of MMSE scores was three points lower
in a community African‐Caribbean sample compared to that for a predominantly UK‐ born
population with a similar age‐range. Differences in score distributions were principally
explained by different error rates for specific items which could be attributed to cultural bias.
The report recommends that if the MMSE is to be administered to older African‐Caribbean
Cross‐cultural assessment of
dementia in older people has specific
pitfalls related to language and
literacy skills. In particular, the use
of culturally biased screening
instruments that rely on language
recognition and familiarity with test
situations may be inappropriate or
misleading for people with cognitive
impairment (Lindesay, 1998).
Culturally appropriate norms are
also important in the evaluation of
dementia. Immigrants may be
literate in a different language or
functionally illiterate. Recent
immigrants from rural areas may
have had little need for the concept
of complex maps and exact dates. As
a result, interpreting cognitive
testing without a knowledge of
education and background is likely
to lead to errors in diagnosis. It may
be important, therefore, to validate
and modify instruments for
examining cognitive function in
different ethnic groups
(Livingstone and Sembhi 2003)
people, specific normative data should be referred
to (and mistakes on certain items viewed with
caution), or a culturally modified version used.
• Research by Richards et al. (2000) administered the
MMSE to forty‐five African Caribbean and forty ‐five
age and gender matched white community
residents from inner London. These participants
were administered the MMSE during a screening
interview. Where possible, this was followed up by
tests from the CERAD and CAMCOG
neuropsychological batteries, a medical
examination, and a structured interview with an
informant. Based on these data, a psychiatrist blind
to ethnicity independently rated 86 of these
participants as cognitively normal, cognitively
impaired, or demented. Of 41 African Caribbean’s,
44% were rated as cognitively normal, 22% were
rated as cognitively impaired, and 34% were rated
as demented. Of the 45 whites, 87% were rated as
cognitively normal, 9% were rated as cognitively
impaired, and 4% were rated as demented. African Caribbean’s scored significantly lower than
whites in most cognitive test scores, which was not accounted for by their lower educational
and occupational attainment, or their higher frequency of cardiovascular risk factors. African
Caribbean elders in the UK appear to be at high risk of cognitive impairment and dementia.
However, the researchers suggested that the influence of potential confounding factors such as
socio‐economic position and ill‐health, and the effect of cultural test bias, cannot be ruled out.
Certainly the research above suggests that there is a wide range of conflicting evidence on culture
assessment. It is of some concern to find that there is an absence of national data as well as a clinical
guidance on assessing the mental health of BME elders.
BME elders and dementia
The National Service Framework for Older People (2001: standard 7) suggests that in that about 5% of
the population over 65 has dementia and, at any one time, about 10‐15% of the population over 65 will
have depression. Dementia, a progressive brain dysfunction, leads to a gradually increasing restriction
of daily activities. The most well‐known type of dementia is Alzheimer's disease. Dementia is a specific
brain disease that is characterised by a collection of symptoms namely, progressive loss of memory,
attention and learning which restricts the individual from leading the life they have led before. It is a
progressive, terminal organic brain disease and the most common types are
• Alzheimer’s disease (accounts for 62% of dementia in the UK)
• Vascular – dementia associated with hypertension and strokes
• Dementia with Lewy Bodies
’Existing instruments for screening
for depression and dementia
developed for use in the indigenous
white population. Western
distress and symptoms are not
necessarily true for
groups, and it is difficult to translate
into English even if
language skills are honed or an
BMJ Editorial. BMJ 1996; 313(7069):1347
• Fronto‐temporal Dementia
According to the Alzheimer’s Society (2007), it is estimated that there are about 11,000 people from
black and minority ethnic (BME) groups with dementia, and this represents 1.7% of all people with
dementia in the UK. However, although the proportion of older people from ethnic minority groups in
the UK is small, they are increasing steadily as this section
of the population ages it is predicted that the number of
people with dementia from BME groups will also rise.
Research suggests that some differences have been found
in the prevalence of dementia among different ethnic
groups. Dementia in BME elders is not necessarily
recognised and research has shown that in general Minority
Ethnic groups are at far more risk of misdiagnosis and
delayed treatment than other Mental Health Users (Hare
2001). In particular, higher rates have been found among
Black Caribbean older peoples (Livingston et al. 2001)
although the recognition of dementia is lower among
South Asian and African Caribbean people than among the
population as a whole (Adamson, 2001; Bowes and
Prevalence of dementia in BME populations
A number of key measures must be put in place if the aims
of the National Service Framework for Older People (NSF),
particularly standard seven on mental health, are to be met
for BME communities and local service providers must do
more to connect with communities. However, there are no
national statistics held on the prevalence of dementia in
BME populations and the Royal College of Psychiatrists (2001) noted that identifying dementia among
BME elders as an area that has been neglected in research.
The Alzheimer’s Society publication Dementia UK (2007: 36‐37) has identified that 6.1 % of all people
with dementia from BME groups are living with early onset, compared with only 2.2% of the population
as a whole, and this indicates implications for policy, commissioning and care. However, future
projections of Alzheimer’s among BME elders will be much large than the population as a whole as first
generation migrants from the 1950s and 1970s move into the age risk for dementia. There is a notable
absence of BME elders and dementia from much of the national research and policy guidance and even
national documents such as the NICE Guidance on Dementia (2006) takes a social inclusion approach to
BME elders but it barely addresses the issue of different cultural needs and fails to address the issue of
culture and assessment and culturally appropriate care.
Film: Dementia Matters, Ethnic
Concerns: Managing Care in the
UK, Netherlands, Spain and
Finland (1999) ‐
This film contains important
information for dementia
sufferers, their families and
professional carers along with
mainstream care providers,
minority ethnic organisations,
majority voluntary organisations
and policymakers, as well as
students in dementia care. The
accompanying booklet contains
key facts, issues and proposals on
dementia care and will be helpful
for anyone interested in mental
health and ethnicity.
Available from PRIAE £27
However, does NICE suggest that heath and social care staff should identify the specific needs of people
with dementia and their carers arising from diversity, including gender, ethnicity, age (younger or older),
religion and personal care and it acknowledges that care plans should record and address these needs.
THE NICE social inclusion approach suggests that managers and care coordinators should ensure that
care plans are based on an assessment of the person with dementia’s life history, social and family
circumstance, and preferences, as well as their physical and mental health needs and current level of
functioning and abilities (NICE 2006) however it does not talk about culturally appropriate assessments.
Importantly it does address the important issue of language and suggests that if language or acquired
language impairment is a barrier to accessing or understanding services, treatment and care, then
health and social care professionals should provide the person with dementia and/or their carer with
information in the preferred language and/or in an accessible format as well as access to independent
interpreters and psychological interventions in the preferred language.
Certainly, dementia in BME populations appears to be neglected in national research and health and
social care services for people with dementia from black and minority ethnic communities need to move
towards providing evidence‐based culturally appropriate care. Responding to issues of culture and
ethnicity is not unique to dementia care and there is a need to improve the quality of and access to
services and greater responsiveness to individual need. Service providers need to work with community
and voluntary organisation’s to plan the
development and delivery of services but this can be a
challenge in dementia care, where the stigma of
dementia may inhibit involvement (Milne 2001).
Therefore, service providers also have a role in health
education and health promotion among younger
communities as well as carers.
BME Elders living with depression.
We all suffer from feeling down at different points in our lives but depression is often indicated when
feeling low/ depressed don’t go away and that those feelings are so bad that they interfere with a
persons daily life. Major depression is generally diagnosed when a persistent and unreactive low mood
and an absence of positive affect are accompanied by a range of symptoms, the number and
combination needed to make a diagnosis being operationally defined (NICE Guidelines 2007), although
some people show an atypical presentation with reactive mood, increased appetite, weight gain and
excessive sleepiness (Quitkin et al., 1991). Depression in later life frequently coexists with other
medical conditions (such as dementia). In addition, advancing age is often accompanied by loss of key
social support systems due to the death of a spouse, friend and family and many elder people become
isolated ‐ this can be a key factor developing depression (ONS, 2000, Steptoe, 2003; Jackson, 1991).
Consultations with groups of older people
from black and minority ethnic
communities found that older people often
felt they had been "researched to death"
over the past 15 years.
(Butt and O’Neil 2004)
General issues related to elders living with depression.
The presentation of depression varies with age, the young showing more behavioural symptoms and
older adults more somatic symptoms and fewer complaints of low mood (Serby & Yu, 2003). However,
the recognition of depression in old age may be more difficult in that symptoms such as poor
concentration or loss of interest in usual activities can mimic dementia (Badger, 1998) and some people
may perceive this as a natural part of ageing and both elders and professionals underestimate the
significance of late life depression (Manthorpe and Iliffe, 2005). Certainly, the consequences of not
offering support to people with depression are very serious. Without help, there is a greater risk that the
depression may become chronic (Beekman et al.2002). Research suggests that the frequency of
depression rises with age and is more common among people in their 80s and 90s than those in their
70s (Osborn et al 2003) but here is conflicting evidence as to whether older women are at greater risk
of depression than older men (Beekman et al., 1999; Osborn et al., 2003).
Depression is extremely common among people living in long term care. (Mann et al. 2000 and Mozley
et al., 2000) and there are high rates of depression among people living in sheltered accommodation,
possibly because their move had been precipitated by bereavement and/or loneliness (Harrison et
al.(1990) and Field et al. (2002).
It is not surprising to see that research suggests that
caregivers of dementia patients can experience various
emotional problems during the course of the illness (Rabins,
1984) and depression among carers is common (Harwood, et
al,1998). However, the risks for carer giver depression have
been found to be related to a complex interrelationship of
gender, age, health status, ethnic and cultural affiliation, and
access to social support (Gruetzner, 2001) .
BME elders living with depression
There is contradictory research on depression in BME elders and while some studies of Black and White
elders in the USA and
UK show no difference in the prevalence of depression (Ebrahim at al 1991, Murrrell
et al 1991, Bhatagner et al 1997 other studies have found a slightly higher prevalence of depression
among BME elders (Livingson et al 2001, McCracken et al 1997). However, other researcher such (as
Livingstone and Sembhi 2003) suggests that BME elders are thought to be particularly vulnerable to
depression because of risk factors of socio‐economic deprivation, immigrant status and old age. Research
suggests that many BME elders feel isolated and that this sometimes leads to high levels of depression
and depression and mental health may be a taboo subject in some communities, there is a need to
discuss these issues – ‘’but not in a way that left people feeling worried or exposed’’(Butt and O’Neil
Certainly at a policy level BME elders are on the agenda and the Department of Health ‘Delivering race
equality in mental health care: An action plan for reform inside and outside services and the
Government's response to the Independent inquiry into the death of David Bennet’ (2005) identifies
some of the ‘building blocks’, that can help to promote the mental health and well being of BME elders.
It suggests that
• More appropriate and responsive services – including ‘to improve services for specific groups,
including older people
• Community engagement – delivered through healthier communities and by action to engage
communities in planning services, supported by 500 new Community Development workers; and
• Better information – from improved monitoring of ethnicity, better dissemination of information and
good practice, and improved knowledge about effective services.
Among the points in the Government document which refer specifically to the needs of older people
from BME communities, communication and language difficulties are acknowledged as a particular
issue, and it is recommended that all PCTs and local authorities should ensure that all mental health
services take account of the language and interpretation needs of older people from BME groups.
It is also acknowledged that Standard 7 of the National Service Framework (NSF) for Older People
requires PCTs to ensure that every general practice is using an agreed protocol to care for patients with
dementia or depression. It is recommended that PCTs need to acquire ‘BME age specific expertise’ to
help them develop services that are responsive and appropriate to the needs of older people from BME
communities. It is up to local commissioner and practitioners to work in partnerships with community
organisations, families and individuals to improve mental health care for BME elders.
Positive practice: Identifying local needs
In 2006, Devon County Council and Age Concern conducted research entitled Removing the Barriers:
meeting the needs of minority ethnic elders in Exeter, looking into the health and social care needs of
local older people from minority ethnic groups. The study found that older people from these groups
experience higher levels of general ill‐health in comparison to the wider community: 68.7% of those
questioned described themselves as having poor physical health and 80% were taking medication. This
can be attributed in large part to health related behaviour such as diet and exercise, and is influenced by
the fact that religious and cultural sensitivities make most activities currently on offer difficult to access.
Another important consideration is material circumstances such as inadequate living conditions and
financial resources: 62.5% or those questioned were not receiving benefits despite the high incidence of
poverty expressed. Lack of money inhibits participation in a variety of activities, thereby increasing the
risk of isolation and this is identified as an issue which has a significant impact on mental well being.
Following the study, a need was identified for a culturally specific centre for older people from minority
ethnic groups. 93.8% of those questioned agreed there was a need for this facility, as current facilities
such as those offered by Age Concern and Devon County Council did not meet their needs. It was
intended that the centre would offer a venue where people could access information and advice from a
range of professionals, with language support from centre staff. In addition it would offer the
opportunity to mix with others and reduce social isolation.
A community based pilot project, Hikmat, has therefore begun in response to the needs identified.
Initially this service was offered one day per week to Muslim Elders, but has recently been extended to
offer a similar service to the Chinese Elder population. When attending the centre male and female
Muslim Elders use separate rooms, as this is culturally appropriate. The Chinese Elders prefer to attend
in a mixed group. Both groups have lunch from a local takeaway, for which they make a financial
Suicide and self harm
One of the worrying and negative outcomes about not providing the quality of care for elders is the risk
of self harm and suicide. There is a growing body of research literature on elders and self harm/ suicide
but very little research on BME elders.
The general literature suggests that
• Older people are less likely than younger people to talk about suicide, but more likely to
carry it out (Help the Aged 2004) and attempted suicide should always be taken seriously in
the elderly and is most likely to represent a failed suicide bid rather than parasuicide (Cattell
• Two of the most commonly cited risk factors for suicide are older age and male gender
(Pearson and Conwell 1995).
• Older men aged 75 and over have the highest incidence of suicide ‐ 11 per cent higher than
the rates for all males aged 15 and over (Samaritans 1998). Rates
for the most elderly men
(males over 85 years) during this period
remained fairly static, this group still having the
rates of any group (Cattell 2000).
• Evidence suggests that GPs treating older people for suicidal tendencies overwhelming
prefer to prescribe medications rather than psychotherapy (Kaplan et al., 1999) and some
studies suggest that up to 70 percent of older people visit their clinician within 30 days of
death (Barraclough, 1971, Conwell et al., 1991).
• Suicide risk is often complex to recognise in elders for two main reasons: co‐morbidities and
infrequency of contacts with mental health specialists Co‐morbid chronic illnesses are common
in older people, they increase risk for depression and suicide, and they make symptom
presentation more complicated to disentangle. (Caine and Conwell 1998).
• Among the elderly,
depressive illness is the most important predictor
of suicide and this needs to
be emphasised (Cattelle et al 2000). Suicide and attempted suicides are associated with high
rates of depression (up to 90%), with major depression accounting for over 50% and physical
illness being a significant contributor in around 60–70% of cases
• The role of social isolation as a risk factor for elderly suicide
has been stressed in many studies.
(Barraclough 1971), for
example, living alone as often cited as the most important social
• Effective suicide prevention models will involve multi faceted prevention strategies carefully
designed to address the needs of the individual (Diekstra, R. F. W. 1993).
• Investment in supporting community outreach and voluntary sector groups with a prevention
and promotion focus will enable the overall needs of vulnerable people to be addressed and
thereby reduce the likelihood of their needing support from specialised mental health services
(NIMHE and NatPAct 2005) The Commissioning Friend for Mental Health Services
Suicide and BME elders
• Burr (2002) warns that some times cultural stereotypes have been presented as scientific facts,
hence the South Asian patient's experience of depression followed with suicidal thoughts and
intent is attributed solely to the person's culture.
• In some cultures suicide may be an acceptable way to avoid losing face and honour, in other cultures it
may be viewed as a grave sin that will bring shame and disgrace on the family for many years
• Community education and awareness programs need to take into account these different values and
attitudes towards suicide and present information and support in ways that are culturally and
linguistically appropriate. Farberow (Ed.) (1975).
• Improving information and pathways to care, supporting self‐help groups and BME elder community
organisations may all provide early interventions that may prevent mental health problems escalating.
For many people, their spiritual life is significant to their mental health and well being and practitioners
are now recognising the value of spiritual life to mental well being and recovery across all different
cultures (Cinnirella et al 1999, Larson 1998).
The Royal College of Psychiatry, has identified that spiritual care can have a very positive outcome for
many people, ( see also the NIMHE spirituality project) and a number of studies have highlighted the
importance of religious and cultural values for minority ethnic families. Beliefs and values are often
integral to people’s self‐concept and will affect their willingness to take up any services on offer (Azmi et
Attention to cultural practices and religious beliefs is important in the
achievement of quality in service provision and beliefs can offer many people
solace, and spiritual nourishment as well as a framework for daily living.
• Working in partnership with local religious and spiritual groups can be
an effective approach to mental health promotion.
• Spiritual leaders are widely consulted by individuals experiencing
mental distress and this may reflect the help‐seeking behaviour in
many different cultures and may appear more culturally appropriate as a first place for
information and support.
• A person’s spirituality may also inform their perceptions of experiences and an event, including
emotional distress and mental ill health and it is important that these spiritual needs are
recognised in the development of culturally sensitive services.
• Research suggests that older people who have a strong sense of spiritual belief and personal
meaning in life are less likely to suffer from depression or mental health problems even when
they have lost a spouse within the past year and spiritual practice may help to support the
mental health and well being of elders who have been bereaved (Coleman et al 2002)
While it must be acknowledged that culture (including spiritual beliefs) can impact on a persons life
and health, it is important to recognise that the social determinants of health other dynamics may
also prevent the use of services on offer such a language barriers, lack of understanding of services
available and concern about stigma.
Accessing mental health services
People with mental health problems pass through different levels of ‘filters’ before gaining access to
different levels of mental health services (Goldberg and Huxley 1980). Pathways to mental health
services may be influenced by a number of factors including the cultural appropriateness
(including access to interpreters and health practitioners who can speak the clients language); attitudes
towards services; previous experiences;
and culturally defined lay referral systems( Goldberg 1999).
While much of the literature on mental health focuses on the medical model there is a growing interest
in how socio‐cultural factors may mediate the experience of, and response to illness such as dementia
(Holstein 1998) and how different cultures perspectives may influence help seeking behaviour (Radley
Some of the barriers to accessing mental health services include:
• Research suggests that one of the primary challenges facing BME service users in trying to
access mental health services is language (Tribe and Raval 2002)
• Although clients and interpreters speak the same language they may or may not share the same
cultural origins. Practitioners need to be sensitive to cultural issues such as the religious
background, ethnic group, political alliances or the cultural origins of the interpreter / client.
• These issues can be complex to resolve as the client may, or may not, want the interpreter to come
from the same background (e.g. religious background). This issue needs to be handled with
sensitivity, as a service provider needs to conform to the Race Relations Act as well as being
receptive to the needs of their clients.
• A competent interpreter in mental health is not only a language broker but also a cultural broker, as
the task of the interpreter is to facilitate communication. The interpreter must know not only the
meaning of words in another language, but must also understand the meaning of concepts in both
cultures. However, although the interpreter may be asked about cultural background issues, the
practitioner needs to be aware that if the interpreter is not from the same clan, class, gender,
religion or culture to the client then they may not be able to answer / support cultural
interpretation issues (Tribe and Raval 2002).
• Research suggests that it is unrealistic to imagine that people who have reached a certain level
of maturity can learn a new language (PRAIE 2005)
• Some BME older peoples may not speak English and a number are illiterate in their own
language this may be due to work patterns and family commitments (McCallum, 1990)
• Deaf people are over‐represented in the mental health setting. A deaf person may have limited
opportunitiesto get to know where and how to get help for mental health problems. There may
be cultural differences in the way mental distress manifests in people who are deaf, compared
to those who are not. One difference in working with a deaf client is that the interpreter is
usually hearing, so will not share the same cultural background as a deaf person. This can bring
the issue of mistrust towards both the interpreter and the mental health professional. It may
be difficult to find an interpreter for the deaf in the language for some BME service users.
• Research by Seabrooke and Milne (2004) in Kent explored the service‐related needs of Asian
older people with dementia and their carers. Currently Asian elders and their carers are only
willing to use services where their cultural and linguistic needs are met. Unfortunately such
services are generic and are neither appropriate nor resourced for managing people with
dementia. GPs also have difficulty with diagnosing dementia in Asian elders, and families are
reluctant to come forward for treatment due to community stigma.
• Research suggests that there is a lack of awareness regarding definition and recognition of
dementia in BME communities and a greater need for community education to reduce stigma
and myths ( Hare 2001).
• It is possible that levels of stigma about mental health are higher in some communities than
others (Ng, 1997; Marwaha and Livingston, 2002; Bowes and Wilkinson, 2003).
• Some BME communities may not access services, due to a
belief that the rest of their community might think they are
not capable, lacking as a family or seeking charity. There is a
also a lack of awareness among some BME people concerning
of the role of the GP as a source of information and support
for mental health problems (Jacob et al, 1998).
• People express their distress and pain in different ways and
hold diverse beliefs about the body, healing and sickness (see
culture section above)
Attitude of service providers
• Research by Odell suggests that GPs by are less likely
identify psychological symptoms in ethnic minority patients
(Dell et al 1997) and there may be a tendency among some
GPs to perceive the health needs of their minority ethnic
patients on the basis of negative stereotypes (Ahmad et al,
• Research suggests that black and Asian ethnic minorities,
access to, utilisation of
and treatments prescribed by mental
health practitioners differ from
those for white people (Lloyd
and Moodley 1992).
• Like all elders, research suggests that BME elders wish to
being treated with respect; feel safe and comfortable; having
their dignity respected; and be supported by professionals
who behave with integrity (PRAIE 2005). However, practitioners may need to consider how
these attributes are interpreted and experienced across cultures.
BME service users, families and carers.
Service users and their carers are the most important people in the health service; involving them in service
planning and delivery is one of the main ways we can make sure that we offer patients the highest quality
care. Patient and Public Involvement is about making improvements to patient care, by enabling patients to
have a say in how they are treated and how services are run. Under the NHS Plan, health trusts now have a
legal duty (under Section 11 of the Health and Social Care Act 2001) to consult patients and the public in the
planning of services. Patients and the public should be involved and consulted from the very beginning of any
process to develop or change health servicesi
. This will increasingly lead to a more patient‐centred health
service and improvements in the patients’ experience. This is not about new targets; it is about delivering
what the patient thinks is acceptable and needs.
’ Traditionally, there has been a
view that black and minority ethnic
communities do not wish to use
services, as they prefer to care for
elders themselves. However,
research suggests that the idea that
the extended family will look after
their elders may be a myth and that
in many cases the reality is that
family networks are spread across
continents not counties. Similarly,
black and minority ethnic
communities are often described as
a hard to reach group. An
alternative view is that these
communities find services hard to
The number of older people from
black and minority ethnic
communities has risen sharply over
the past few decades and is
projected to continue to rise. Black
and minority ethnic older people
with mental health problems and
their carers need to have access to
appropriate and responsive services.
There needs to be a balance
between ensuring access to
mainstream services and
understanding the nature and
extent of the need for specialist
Everybody’s Business (DH/ CSIP
The Audit Office have estimated that there are 476,000 informal carer in the UK and they provide a service
that is valued at 5.4 billion pounds (Audit Office 2007), however there are no national figures on the number
of BME carers in the UK and despite recognition of the importance of informal family care, there is only
limited research relating specifically to BME families and carers (Atkin and Rollings, 1992 cited in the Oxford
Institute of Age 2003) and most of the research is small scale and local.
Some of the key finding on the roles of BME carers suggests that
• There is a need to challenge the idea that black and minority ethnic communities have strong
family structures and they always look after their own. Research suggests that BME families face
their own pressures of normal life, career and childcare commitments and may be stretched
financially, physically and mentally by caring for an elder, especially if he or she is in poor health
(Ahmad and Atkin 1996).
• Research suggest that there is a need to communicate with families about their family script and
family expectations (Lau 1986) if service providers are trying to achieve a culturally acceptable
form of mental health support/ care for BME elders. However, the traditional view of family
entrenched in gerontological research is that ‘the family ‘is often portrayed as a resource and a
primary support system. However, there are often a number of assumptions made in research.
• Service providers need to be reflective about their own expectations and beliefs about families
and family roles, as the concept of family and family roles varies across cultures and people
from different cultures. The Western model of mental health and well being is predominantly
based upon an individualised approach that places a strong emphasis on intervention and
working towards empowering individuals and encouraging independence. However, this is not
appropriate for clients across all cultures and many people do not want to be assessed as
separate from their family setting.
• Some small scale studies have suggested that some BME elders have expressed that their
children had or would become ‘westernised’ into the uncaring and individualistic attitudes of
English people towards older people). In a study of Bangladeshis living in Camden, north
London, discovered that a great concern of older people in the area was the erosion of the
‘customs’ and ‘tradition’ of their joint Islamic and Bengali heritage because of the influences of
British culture on their children and grandchildren Fenton (1987) and Qureshi (1998) cited in the
Oxford Institute of Age 2003)
• Much of the current literature on the family and carers is based on heterosexual families
(Novak and Campbell 2001) and there is scarce literature on certain groups of older people such
as the never married, childless and LGBT people. Carers of a gay, lesbian, bisexual or
transgender person may not choose to confide all relevant information to professionals due to
fears of discrimination. Similarly, where the individual cared for does not seek to disclose his or
her relationship with the carer, the identity and support needs of carers may not be met.
• Patients and carers are not often accommodated in the formal system of care because service
providers believe that people from minority ethnic communities find these services as either
inaccessible or inappropriate to their culture specific needs (Forbat 2003)‐ as a result BME
service users and their carers may become locked out of care
• Many elders who live in the UK due to forced migration (i.e. refugees) may not have any family
in the UK (Connelly 2006).
• Research suggests that carers of people with learning difficulties from minority ethnic
communities are often more affected than their White peers by problems of poverty, bad
housing financial problems and racism (Butt and Mirza 1996).
• Some elders who are unable to speak English may be dependant on other family members for
accessing the most basic services, which can place a strain on the family and create a sense of
loss of independence in the older person and some elders who have used English in the past
may return to their original language of their childhood.
Part two: Issues for specific BME elder
Lesbian, gay, bisexual and transgender (LGBT) BME elders
As with all community groups, lesbian, gay, bisexual and transgender
(LGBT) BME elders need to be approach as unique individuals with
distinctive needs. While living life openly as a lesbian, gay man or
bisexual person is only a relatively recent possibility (Heaphy et al.
2003; Weeks 1995, Plummer 1995; Weeks et al. 2001), policy and
service provisions for ageing LGBT communities are slowly developing to recognise the needs of the individual
within these communities. However, while there is very limited research on LGBT elders, there is even less
research about BME LGBT elders.
The general research suggests that
• Many of the health and social care needs of older people who are lesbian, gay, bisexual or
transgender are likely to be the same as other older people although they may face additional
• Ageing can have a significant impact on how individuals live their lives as lesbians, gay men and
bisexuals in a predominantly heterosexual society and this may contribute towards a sense of
isolation and loneliness (Heaphy et al 2003).
• Lesbian and gay communities may have an important role in supporting non‐heterosexual
identities and ways of living. However, these community supports are unevenly distributed in
geographical terms. Age itself can form the basis of exclusion from community activities not
specifically targeting older lesbians, gay men and bisexuals (Heaphy et al 2003).
• MIND suggests that ageism within society has meant that elders are generally seen as
unattractive and socially boring. The 'gay scene' is no exception and is more often than not
geared towards younger people. Despite the lack of social opportunities generally, some older
lesbians and gay men may have long‐established support networks while others will be more
isolated, perhaps due to the deaths of partners and friends, lack of mobility, or simply because
they have lost touch with others (MIND web site).
• Disclosure of sexual orientation to health and social care providers may be difficult (Cochran.
1988, Hitchcock. 1992).
• Some organisations working with older people fail to take into account the fact that a service
user may not be heterosexual. For example, sheltered housing and residential care is usually
mixed‐sex and geared towards heterosexuals. While an increasing number of voluntary
organisations have recognised the needs of lesbian, gay, bisexual and transgender (LGBT) elders,
currently there are only a few organisations meeting the needs of specific LGBT ethnic
communities. However, community‐based programmes may not in themselves sufficient to
meet the social support and health related needs of older lesbian, gay, bisexual and transgender
people (Davies et al 2006). mmmmmmmmmmmmmm
• Research suggests that LGBT individuals often have higher levels of mental ill health than their
heterosexual counterparts (King et al. 2003)
LGBT BME people
While there has been limited research into the needs of elder LGBT in this country, there is very limited
research on meeting the needs of BME LGBT elders (Brockmann. 2002)
• Mind suggests that black lesbians and gay men face double oppression because of their race and
their sexuality. Some feel they have been forced to choose between the gay and the Black and
minority ethnic cultures. Black communities can be homophobic, in the same ways white ones
• According to SAFRA, (a resource project working on issues relating to lesbian, bisexual and/or
transgender women who identify as Muslim religiously and/or culturally) most Muslim LBT
women struggle to reconcile their sexual orientation or gender identity with their cultural or
religious identities. This internal struggle can result in depression, self harm and even suicide.
Coming out (or being found out) can result in:
o being rejected by family and friends
o intense pressure to get married, sometimes leading to forced marriage
o domestic violence
o losing custody of children and/or abduction
• Homophobia can mean that an individual is cut off
from support networks of family and friends, which
are important to enable a person to develop a
positive black identity and to counter the racism
faced on a daily basis. Black lesbians and gay men
therefore have to consider the importance of
'coming out', weighing the possible loss of family
and community support against the gains,
(Hayfield,1995)and this may have long term
implications for older LGBT people who may lack
family / community support.
• The 2006 Welsh Office report into The Health, Social
Care and Housing needs of Lesbian, Gay, Bisexual
and Transgender older people suggests that people
from diverse cultures and groups may be ‘gay’ but
may do not use the term to describe their life or
their lifestyles (Davies. M. et al. 2006).
BME elders who are refugees
The standard definition of the elderly as being those over
retirement age is not always suitable for members of
refugee communities. In common with others from different
cultures they may have been used to different lifestyles and
experiences and to economic disadvantages. Many will have
been through traumatic experiences and losses in the course
of their escape and subsequent exile.
These factors can all have the effect of ageing people earlier.
Those who were already in later life when they came to the
United Kingdom may have been unable to work and
therefore have adopted a retired lifestyle earlier than is
usual here. In addition, dates of birth may have been
calculated differently or recorded inaccurately in transit, so
that some are actually older that their ‘official’ age.
(Finlay and Reynolds (1987, cited in Wilson, 1988: 157)
Refugees flee their homes because of the threat of persecution and cannot return safely to their homes
and cannot be guaranteed safety on their return. For most refugees, there is considerable anguish
regarding the final decision to flee their family and their homeland and they only take this extreme step
in order to survive.
The term refugee is often used very loosely. Generally, people use the term refugee to mean people
who have moved across an international border in search of protection. When people flee their
homelands as a refugee, they are afforded rights under the 1951 UN Convention on Refugees. This is
the key legal document in defining who is a refugee and significant elements of the Convention include
• A refugee has the right to safe asylum.
• International protection comprises more than physical safety.
• Refugees should receive at least the same rights and basic help as any other foreigner who is a
legal resident, including freedom of thought, of
movement and freedom from torture and
• Economic and social rights are equally
applicable. Refugees should have access to
medical care, schooling and the right to work
• Governments establish their own status
determination procedures to decide a person's
legal standing and rights in accordance with
their own legal systems.
• Growing old in exile is an inevitable
phenomenon for a growing numbers of
refugees and asylum seekers in the UK. Refugees are often among the most deprived and
socially excluded groups living in European countries (Brockmann 2002), however, there is a
dearth of research literature on elder refugees.
General research on refugees suggests that
• Refugees often carry the burden of a health inheritance from their home country that may
include trauma, loss and possibly torture, the health impact of the refugee journey that may
include long periods of mal nutrition, violence and destitution and the asylum seeking process in
the UK. Yet refugee older peoples are often a neglected population (Hatzidimitriadou 2005).
• Most refugees face considerable problems during resettlement in a new country; these may
include poor housing conditions, financial insecurity, loss of family and culture, lack of
familiarity with the health care system, fear and mistrust of officials due to past experiences
(Wasp et al 2004, Derges and Henderson, 2003
South London and Maudsley NHS Trust 2001, Scott
and Bolzman, 1999)
• Refugees often face problems in accessing health
and this is often due to language barriers and some
times discrimination by health professionals.
(Cowen 2001, Ager and Strang 2004).
• Women may face particular problems due to
experiences of sexual violence, trafficking and
prostitution (Cowen 2001) and women are more
likely than men to report poor health and
depression due to isolation (Burnett and Peel
• Many elderly refugees report having persistent
headaches and stomach aches. Others complain of
back and chest pains. While some of these
symptoms are clearly signs of physical problems,
many are attributed to stress and to "survivor's
grief" as well as to worry about the future (Gozdiak
• Many service providers are unfamiliar with the full
range of entitlements of disabled people within
refugee and asylum‐seeking communities and many
people find themselves denied access to services
(Roberts et al 2002).
• Elder refugees may experience ageing faster, due to
past traumatic experiences (Ditscheid 2004).
• Older refugees may be resistant to approaching public authorities for assistance due to their
experiences in exile, or of discrimination in their country of settlement (Saunders 2004).
• Refugee elders may also be at risk from social isolation because of dispersal policy, distance
from a place of worship and a poor knowledge of available welfare services ( McCarthy 1995).
• Due to the refugee experience many BME refugee elders are without any family support
• The loss of community, history and tradition leaves people without a context within which to
exist. Elder refugees can draw on traditions to sustain their sense of self and hope for the future
and they have the knowledge, skill and ability to hold communities together. They can draw on
Older Refugees and Asylum‐Seekers
Age Concern England and the Refugee
Council, also involves Age Concern
London and the Association of Greater
London Older Women has developed a
two‐year joint programme which aims to
promote greater involvement of refugee
elders at all levels of society, through
listening to their voices, and raising
awareness of their experiences, needs
and capabilities. It seeks to
Review of existing literature and research
on older refugees
Survey Refugee Community
Organisations and other organisations,
including local Age Concerns, working
with older refugees and asylum‐seekers
Conduct 3 regional ‘listening events’ with
older refugees, the results of which will
all be brought together in conference a
It is hoped that one of the outcomes of
the Older Refugees Programme will be to
identify opportunities for local
partnership working in meeting the
needs and aspirations of older refugees
many past experiences and memories to remind their people that they have surmounted other
difficulties and survive (Goveas 2002).
BME elders in rural localities
Very little research has been conducted on the mental health needs of BME elders living in rural
locations. Although the proportion of older people in England’s and Wales’ rural areas is significantly
higher than in urban areas, most BME elders tend to be located in urban areas (National Census 2001)
and therefore BME elders living in villages and other rural settings may find themselves quite isolated
and without access to culturally appropriate community resources and the needs and perspectives of
the white ethnic majority often become defined as the norm (Ubuntu 2004).
• The term BME covers a wide range of individuals and groups including established communities,
individual, migrant workers as well as refugees and asylum seeker elders and combined with
rural distances and isolation it often means that there may be no factors in common which
cause people to network spontaneously.
• Without access to communities, many individuals may find themselves isolated (this is also true
for white elders living in remote and rural locations) and service providers many find it difficult
to include their needs in service planning without BME community representative structures. In
addition, many BME elders may face discrimination (MIND) .
BME elders living with learning difficulties
Research in the field of elders with learning difficulties is very limited and the scoping for this report was
unable to identify any specific research on BME elders living with learning difficulties in the UK. This
clearly is an area that requires further research. However, the general literature/ research on BME
communities living with learning difficulties may also apply to elders (although much of the literature
focuses on children with learning difficulties) and there is a limited amount of research specifically on
elders with learning difficulties. Certainly, the social and medical factors leading to the increase in
longevity for the general population have significantly increased the life‐span of people with learning
difficulties (Hogg 2000 and 1988). While research suggests that people with severe or profound
intellectual disability, multiple disabilities (e.g. cerebral palsy, epilepsy, severe motor handicap, etc.),
and people living with Down syndrome (Hayeman et al. 1989, Eyman et al 1999) still have a reduced life
expectancy, age‐specific mortality rates among people with mild intellectual disability and adults within
the general population in developed countries are comparable (Eymen 1987, Zigman 1991)
General research on ethnicity and learning difficulties suggests that
• There is a higher prevalence of people living with learning difficulties in South Asian
communities has been linked to high levels of material and social deprivation and is up to three
times higher than in other communities (Azmi et al 1996) but prevalence within other minority
ethnic groups is not as well documented (Mir et al 2001).
• People with learning difficulties from minority ethnic communities experience simultaneous
disadvantage in relation to race, impairment and, for women, gender. Negative stereotypes and
attitudes held by service professionals contribute to the disadvantage they face (Mir et al 2001).
• Studies show that socio‐economic disadvantage and financial insecurity may add significantly to
the stress that carers experience (Atkin and Ahmad 2000a, Chamba et al 1999).
• An understanding of independence that emphasises individuality may run counter to the values
of collectivism and close family relationships that exist in some communities. The role of family
and community networks needs to be taken into account when planning services for individuals
(Mir et al 2001).
• Empowerment requires information, choice and involvement in decision‐making. Support
groups can increase participation and control for minority ethnic people with learning difficulties
and their carers, as well as providing emotional support. However, such groups are generally
small‐scale and isolated and may be unable to
provide progression to other provision if
cultural needs are not recognised in other
services (Mir et al. 2001)
• Service providers should be alert to the fact
that people who have difficulty in verbalising
their health problems (due to intellectual
impairment, communication difficulties and /or
language barriers will need access to
assessment and treatment should prevent
secondary conditions (Nothard 1993).
• There is evidence of a failure to provide
information to carers about services in
appropriate languages and locations and this
particularly affects those carers who have least
access to provision (Azmi et al 1997, Steele et al. 2000 cited in Mir).
• It is important not to underestimate the ability of people with learning difficulties to be involved
and without consultation, services will remain inappropriate and culturally inappropriate (Mir et
Elders with learning difficulties
• The ageing process in people with learning
disability brings changes in the rates of physical and
health problems similar to those found in people without pre‐existing
disabilities (Holland 2000).
• Research by Cooper (1997) with elder people with learning difficulties suggests that elderly
people with learning disabilities have a greater prevalence of
psychiatric morbidity than younger
controls (68.7 v. 47.9%). Rates for
depression and anxiety disorders were higher, and dementia
was common: there
were equal rates for schizophrenia/delusional disorders, autism and
behaviour disorders in the two groups. The research concluded by stating that there was higher
morbidity among elderly (compared with younger) people with learning
and this has not previously received adequate recognition.
has been to investigate the extent to which cognitive decline
and dementia occur.
Many studies have now confirmed that age‐related
cognitive decline and dementia affecting
people with Down's
syndrome occur 30‐40 years earlier in life than in the general
• Sensory impairments
characteristically associated with later life are found to a
greater extent in
those people with learning disabilities aged
over 65 (Janicki et al 1985 cited in Holland 2000).
• Differences in the structure of the life of a person
with learning disabilities can often lead to a
failure of care services to recognise and help to plan for old age. For example, many people with
learning disabilities the death of parent is associated with not only the loss of a family member
but possibly also information about the person
• The lack of evidence concerning the mental health of BME elders with learning difficulties
suggests that there is a pressing need for further research and the incorporation of the
perspectives of users and
carers in the planning process is an essential
developing effective services for BME elders with learning difficulties.
Part three: Improving our practice and developing cultural competence
Cultural competence is about adapting mental health services to meet the needs of, and offer an
appropriate service to, service users from all cultures and communities. The needs of diverse
populations and individuals, maybe very different and one standard model is unlikely to meet the needs
of everyone. But cultural competence is more than simply looking to provide services for minority
communities, it also involves practitioners in being reflective in their own practice and acknowledging
their own cultural values/ bias and reflecting on how this might inform their daily interaction with
Certainly, developing knowledge of diverse communities and their needs can help towards promoting
equality of access and culturally appropriate services and there are a number of approaches that help to
improve cultural competence. These include
• Working in partnership: BME elder community groups and service users can speak for their
communities as well as about them and represent a huge pool of volunteer expertise that would
otherwise be wasted. Consulting and working in partnership with BME elders local community
groups is important in to both sharing cultural knowledge and information as well as developing
appropriate mental health services. However, any consultation must be aware that community
leaders may not be speaking for all members of their community and service providers should
make a special effort to communicate with more excluded members (e.g some women, people
with disabilities such as people living with deafness).
• Provide appropriate information to BME elders: It is important that organisations impart
information to BME elders regarding the services they offer. The information needs to include
the details of the goals and expectations of the service offered by the organisation as well as
policy statements and procedures. This also needs to cover issues such as confidentiality and
information should be provided in a range of formats and be available in the appropriate
language for the service user. When possible, the information also should be discussed verbally
and any questions answered prior to any service being given. This enables all service users to be
aware of the services they are being offered, to know what to expect and helps avoid
misunderstanding. Information also promotes engagement with the service and helps to build
trust in the services being offered as well as the organisation and should be developed in
consultation with local community groups.
• Provide appropriate training and information for practitioners: Organisations / employers need
to provide staff offering mental health services appropriate and regular training, supervision and
leadership if they are to give all their patients culturally sensitive and safe care. Training and
information needs to include information from research and practice issues relating to other
cultures; this could incorporate cultural, social, psychological, political, economic, religious and
historical material specific to ethnic groups. Perceptions of mental health differ in cultures and
there maybe issues of stigma or issues relating to the attribution of mental illness such as,
supernatural or religious ideas. The value of medical treatment and responses to health issues
and treatment may also vary.
• Awareness of own cultural background: Cultural issues will influence the way practitioners offer,
organise and deliver services and it is helpful for practitioners and health care staff to be
reflective in their work to facilitate cultural competence. This involves being able to critically
evaluate our own strengths and weaknesses in working with people from different cultures and
. For example, Western cultures tend to focus on the individual, whereas in
some cultures the healing practices are centred on the family and / or the community. Western
cultures also tend to view religious beliefs and practices as private and separate from any
health/ healing / treatment being offered. In many cultures their is a strong relationship
between health and spirituality ( however, the role of spirituality s becoming increasing
recognised as playing an important role in health
• Maintaining an individualised approach: It is essential that the services should maintain a client
centred and an individualised approach, it should not be assumed that because an individual is
from a particular culture or ethnic group that they will think and behave in a particular way,
require a specific service or hold a particular belief. Cultures do not have clearly defined
boundaries but are multi layered, multi faceted and influenced by a range of different factors.
• Integration across the services: Cultural competence needs to be integrated in each stage of the
service offered, for example, at the most basic level, residential care needs to take into account,
linguistic and spiritual needs, as well as a practical issues such as food, accommodation and
gendered space as well as issues such as personal/ spiritual hygiene practices and family contact
• Promoting a culturally diverse staff team: It is important that organisations establish a culturally
diverse staff team and recruitment initiatives need to attract individuals from all parts of the
local community, aiming to build a workforce that reflects the diversity of the local population.
This should include all departments of staff, from receptionists across to clinicians across to
executive managers. Organisations / employers need to offer ongoing education and training for
all staff – administrative, clinical, support and managerial, recruitment of staff from, and
representative of, local communities is the most effective longer term strategy to build cultural
competence. A diverse staff team will also have cultural needs and this should be addressed by
the organisation in order to meet these staff needs. For example, a prayer room or space for
meditation maybe required or religious holidays need to be respected.
• There is a high number of care home staff without English as first language and this may result
in communication problems. (Communication skills are a requirement of the Common Induction
Standards which all staff should complete (National Audit Office 2007)
• Improving communication: To develop cultural competence, effective and clear communication
is required from staff at all stages of the mental health care process to ensure that BME elders
know what is happening, to avoid misunderstandings and inform people of their rights and
. Many clients and carers will need access to trained interpreters as well as access to
appropriate language materials. However, practitioners need to recognise that interpretation
and linguistic access is not sufficient as the sole criterion for cultural competence. Good
communication is especially significant when care staff are supporting elder people who are
confused and interpreters should be used as require and it is beneficial to use the same
interpreter as this promotes continuity for the elder.
• Staff need to be able to recognise the importance of non‐verbal cultural influences to ensure
good communication with BME elders. This includes awareness of differences, such as
expression, gesticulation, non verbal communication as well as nuances in speech patterns and
communication styles. For example, many cultures do not shake hands; others do not make /
maintain eye contact during conversations.
NIMHE and the Sainsbury Centre for Mental Health have developed The Ten Essential Shared
Capabilities for Mental Health Practice
Working in Partnership. Developing and maintaining constructive working relationships with service
users, carers, families, colleagues, lay people and wider community networks. Working positively with
any tensions created by conflicts of interest or aspiration that may arise between the partners in care.
Respecting Diversity. Working in partnership with service users, carers, families and colleagues to
provide care and interventions that not only make a positive difference but also do so in ways that
respect and value diversity including age, race, culture, disability, gender, spirituality and sexuality.
Practicing Ethically. Recognising the rights and aspirations of service users and their families,
acknowledging power differentials and minimising them whenever possible. providing treatment and
care that is accountable to service users and carers within the boundaries prescribed by national
(professional), legal and local codes of ethical practice.
Challenging Inequality. Addressing the causes and consequences of stigma, discrimination, social
inequality and exclusion on service users, carers and mental health services. Creating, developing or
maintaining valued social roles for people in the communities they come from.
Promoting Recovery. Working in partnership to provide care and treatment that enables service users
and carers to tackle mental health problems with hope and optimism and to work towards a valued
lifestyle within and beyond the limits of any mental health problem.
Identifying People’s Needs and Strengths. Working in partnership to gather information to agree health
and social care needs in the context of the preferred lifestyle and aspirations of service users their
families, carers and friends.
Providing Service User Centred Care. Negotiating achievable and meaningful goals; primarily from the
perspective of service users and their families. Influencing and seeking the means to achieve these goals
and clarifying the responsibilities of the people who will provide any help that is needed, including
systematically evaluating outcomes and achievements.
Making a Difference. Facilitating access to and delivering the best quality, evidence‐based, value based
health and social care interventions to meet the needs and aspirations of service users and their
Promoting Safety and Positive Risk Taking. Empowering the person to decide the level of risk they are
prepared to take with their health and safety. This includes working with the tension between
promoting safety and positive risk taking, including assessing and dealing with possible risks for service
users, carers, family members, and the wider public.
Personal Development and Learning. Keeping up‐to‐date with changes in practice and participating in
life‐long learning, personal and professional development for one’s self and colleagues through
supervision, appraisal and reflective practice.