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Research in Nursing

Research and dementia, caring and ethnicity: a review of the literature

Julia Botsford, Charlotte L. Clarke and Catherine E. Gibb
Journal of Research in Nursing 2011 16: 437
DOI: 10.1177/1744987111414531

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Focus Paper
Journal of Research in Nursing
16(5) 437449
Research and dementia, caring ! The Author(s) 2011
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DOI: 10.1177/1744987111414531

of the literature jrn.sagepub.com

Julia Botsford
Barnet, Enfield and Haringey Mental Health NHS Trust, UK

Charlotte L. Clarke
School of Health in Social Science, University of Edinburgh, Edinburgh, UK

Catherine E. Gibb
School of Health, Community and Education Studies, Northumbria University, Newcastle, UK

Abstract
Despite the need for services which are culturally appropriate there is a dearth of robust research
on the impact of ethnic background on dementia and caregiving. A literature search has revealed a
relative lack of published research from the UK, with more US studies available. This paper
provides a review of the literature on these topics and includes a critique of ethnicity
categorisation and commonly held assumptions. It explores the complexities of the concept of
ethnicity and examines its significance in relation to understandings of health and illness in general,
and dementia in particular. Ethnic background appears to account for differences in experiences of
dementia and caregiving, but other compounding variables, including socio-economic factors and
education, also need to be taken into account when considering the experiences of specific ethnic
communities. The paper concludes that ethnicity is significant in regard to how people experience
dementia and caregiving, but also highlights a continuing need for research which explores the
impact of ethnic background in a sensitive and sophisticated manner.

Keywords
caregiving, dementia, ethnicity, research

Introduction
The Dementia 2010 report (Luengo-Fernandez et al., 2010) estimates that the number of
people in the UK with dementia is currently around 820,000. As increasing age appears to be

Corresponding author:
Julia Botsford, Barnet, Enfield and Haringey Mental Health NHS Trust, UK
Email: Julia.Botsford@beh-mht.nhs.uk

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438 Journal of Research in Nursing 16(5)

the strongest risk factor for developing the condition (Lobo et al., 2000), this number is
forecast to rise, reecting a demographic shift towards an increasingly aged population in
the UK and worldwide over the next decade and beyond. Globally, it has been estimated that
there are approximately 35.6 million people with dementia, and that this gure will almost
double every 20 years, to 65.7 million in 2030, and 115.4 million in 2050 (Alzheimers Disease
International, 2009).
In parallel with the overall increase in population age, in the UK the number of minority
ethnic older people is also set to rise. At present around 16% of white British people are over
65 years of age, as opposed to only 9% of black Caribbean and 6% of Asian people (Oce for
National Statistics, 2001). Whilst the minority ethnic population tends to have a relatively
young age structure at present, it is anticipated that the total number of older people among
ethnic minorities will increase, reecting immigration patterns in the latter part of the
twentieth century (Lievesley, 2010). Thus by 2051 the percentage of black and minority
ethnic people over 65 years is projected to be between 15% and 29%, while that of white
British is expected to rise to around 27% (Wohland et al., 2010). This will inevitably result in a
growing number of black and minority ethnic people with dementia.
Although policy has highlighted that needs arising from diversity, including gender,
ethnicity, age (younger or older), religion and personal care should be identied and
addressed by health and social care sta (NICE/SCIE, 2006: p. 13), there is a relative lack
of research evidence around the experiences of carers and people with dementia from black
and minority ethnic groups in the UK. Most of the research that has been done in the UK to
date has focused on South Asian groups, and to a lesser extent on the UK Caribbean
communities (Milne, 2001; Milne and Chryssanthopoulou, 2005). Whilst the evidence base
is expanding, much of the UK research remains limited and often based on small local studies
(Moriarty et al., 2011).
This paper will present an overview of the ways in which the concepts of health and illness
in general, and dementia in particular, are understood and represented in relation to cultural
frames. The existing evidence base around the signicance of ethnicity in regard to the
impact of dementia in families will be considered, along with some implications for
research practice.
Literature discussed here has been drawn from a range of academic disciplines including
nursing, medicine, health psychology, sociology and anthropology. Searches were made in a
number of dierent databases, including ASSIA (1987), Cinahl (1981) Medline (1950),
ProQuest Nursing Journals (1988), Web of Knowledge (1970) and Swetwise (1989). The
searches were limited to articles published in English. Search terms that were used included
dementia, Alzheimers, culture, ethnicity, caring, caregiving, spousal relationships,
stress, ethnic minorities, African Caribbean, West Indian, Greek Cypriot and Asian.
Each of these key words and phrases was used singly and in combination.

Ethnicity and health

Ethnicity, or ethnic identity, is based on the notion that people identify with particular social
groups in respect of cultural factors deriving from a tradition of common descent or
intermarriage and a shared culture or history. According to Zenner, ethnicity refers to a
common heritage shared by a particular group, where heritage includes history, language,
rituals, and preference for music and foods (Zenner, 1996). Bradby (1995), drawing on Brah

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Botsford et al. 439

(1993) denes it as:

The real or probable, or in some cases mythical, common origins of a people who may also have
visions of a shared destiny which are manifested in terms of the ideal or actual language, religion,
work, diet, or family patterns of those people. (p. 406)
A number of reviews have highlighted the existence of variations in both health outcomes
and access to services, with a recognition that there tend to be poorer health outcomes for
black and minority ethnic populations as well as lower than expected service uptake by
minority groups (Atkinson et al., 2001; Smedley et al., 2003; Szczepura, 2005). In relation
to dementia in particular it has been proposed that there is a likelihood of greater prevalence
of the disease in some ethnic groups because of variance in known risk factors (e.g. higher
rates of hypertension and strokes have been found in the African Caribbean population and
of diabetes in the South Asian population [Wild and Mckeigue, 1997; Forouhi et al., 2006;
Adelman et al., 2009]).
In a cross-sectional study of migrant elders in Islington, where a total of 1085 people over
the age of 65 were assessed for psychiatric diagnoses, signicantly higher rates of dementia
than in general population studies were found in the Caribbean sample (Livingstone et al.,
2001, 2002). The researchers did not nd that migration per se accounted for this increased
risk, since it was not common to all migrant groups in the study, and indeed they found that
Greek Cypriots did not have higher dementia rates but were more at risk for depression.
Although the Islington study corrected for both socio-economic factors and years of
education, some commentators have drawn attention to the existence of poorer socio-
economic status within minority ethnic groups as compounding factors which make it
dicult to attribute these prevalence dierences to ethnicity alone (Ilie and Manthorpe,
2004). Diculties in screening and diagnosing because of a lack of culturally sensitive
psychometric testing tools (Parker and Philp, 2004) have further clouded the situation.
Nevertheless, there is increased interest in ethnicity within UK health care. Among the
stated reasons for this is the need to ensure that health inequalities in terms of access and
outcomes can be monitored and addressed (Department of Health, 2007). In a discussion
paper, Johnson (2008) suggests that in the past the dominant view in the National Health
Service (NHS) was that everyone should be treated the same, and therefore that to record or
even to inquire about a persons ethnicity might be regarded as potentially discriminatory.
More recently, however, the balance has swung dramatically in the opposite direction, and it
is now mandatory for NHS Trusts to collect ethnicity data. (Commission for Racial Equality,
2002; Department of Health, 2002, 2007).
Ethnicity is increasingly being seen as a shorthand way to understand a persons attitudes,
behaviours, experiences and possibly their needs. However, although well intended, this is
based on a number of problematic assumptions. Unless they are acknowledged there is a risk
that people will be viewed as one-dimensional non-individuals, simply members of a
homogenous group. In other words, paradoxically, attempts to address diversity issues
could lead to a lack of recognition of individuality, thereby compromising person-
centredness.

Knowing and defining culture: Looking beyond the ethnicity labels

The rst problematic assumption is that each ethnic group has a distinct culture which can be
known and dened. However, in the everyday world, culture may seem a rather abstract and

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440 Journal of Research in Nursing 16(5)

theoretical notion. People can be seen behaving and interacting in certain ways, for example
preparing food, enjoying certain music, or engaging in particular festivals, but the more
subtle and invisible assumptions behind these products of culture may go unrecognised
(Brownlee, 1978).
Nor is culture static. In the case of immigrant groups, cultural practices are prone to
change as aspects of the host culture are adopted. For example, words and expressions
from the host language will start to creep in, and customs will be adopted and become
internalised (Valle, 1998). Often these changes are gradual and almost imperceptible even
to the individuals themselves, although they may be starkly evident for those who return to
their country of origin at a later date to nd they talk dierently or act dierently to those
who never left. However the rate of this process may vary, and a counter phenomenon may be
the tendency within cultures to hold on to the traditions that the early settlers brought with
them more strongly than those who have remained at home. This process of acculturation, or
cultural exchange (Kottak, 2005), occurs at dierent rates for dierent groups, and for
dierent families or individuals within these groups. This means that there will be a
variation in the degree of expression of cultural values to be found even within specic
ethnic groups. Furthermore, subdivisions and subcultures exist within all ethnic groupings.
Alongside membership of a cultural group based on shared ethnicity, an individual is
simultaneously a member of any number of additional subcultural groups, each exerting
its own overlapping, and in some cases conicting, normative inuences on beliefs and
behaviours.
Whilst individuals may have shared cultural reference points through their ethnicity, their
presentations will vary as a consequence of the interplay between these multiple factors. This
can be illustrated by the ndings of Clarke et al. (1993) ndings that white male carers of
people with dementia within a post-industrial area were reluctant to engage as research
participants, whilst white male carers from a more auent neighbouring area had no
reservation about participation.
For researchers and practitioners these are crucial factors to consider, in order to avoid the
dangers of oversimplication. It is important to look beyond broad ethnicity labels and
identify dierences within, where these exist.

Ethnicity as objectively recognisable: How meaningful as a category?

A second problematic assumption is that ethnicity is an objectively recognisable entity, and
that ethnicity categories are meaningful. It can be argued that this is not always the case and
that they are inevitably mere social constructions (Johnson, 2008).
Ethnicity category options derived from the national census surveys are often used in
research and practice, and yet these have been changing ever since they were rst
introduced. Before 1981 the Census merely required people to state their country of birth.
By 2001 the ethnicity codes included ve primary distinctions (white, mixed, Asian or Asian
British, black or black British, and Chinese or other), along with further subdivisions within
each of these. Thus a person ticking White could be either British, Irish or Other white,
with a free text box to name this, and a person ticking Black or Black British could choose
between African, Caribbean or Other (with a free text box for writing this). In the 2011
Census there have been further additions, with the inclusion of Arab in the Other category
and Gypsy or Irish traveller within the White category (Oce for National Statistics,
2010). For the time being, however, NHS data collection is based on the 2001 data set,

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Botsford et al. 441

with local areas being able to adopt additional and more detailed ethnicity codes to use
locally.
Aspinall (2002) calls for clearer precision in dening ethnic minority populations,
and suggests that some widely-used terms such as Asian or mixed race, or indeed black
and white, are so broad as to be almost meaningless and practically useless. Whilst it is
required that ethnic labels should be subjectively adopted (NHS Connecting for Health, 2009)
even this underplays a complexity. Not only may individuals classify themselves dierently to
how others, including researchers, would (Hillier and Kelleher, 1996), but these self-perceived
labels may vary according to time and circumstance. Jayaweera (1993) talks of multiple ethnic
identities co-existing for an African Caribbean woman. She may be black in the context of
experiences of racism, but also both Jamaican and West Indian in relation to her ethnicity and
family bonds
Ethnicity labels are inherently problematic and inconsistently applied. Whilst the use of
ethnic category labels can be helpful in distinguishing broad variations at a group level,
researchers need to ensure that their research design incorporates categories which are
meaningful, appropriate and acceptable.

Culture and ethnicity: The complex interplay of factors in health

experiences
A third assumption is that cultural and ethnicity factors alone account for dierences in
health experiences and outcomes. In fact, there is a growing recognition of the parts that
socio-economic dierences, and factors such as discrimination, might play. For example,
people with dementia and their carers often face a so-called quadruple jeopardy of age,
dementia and ethnic minority membership, coupled with poorer socio-economic status
(Bowes and Wilkinson, 2002). This illustrates the complexity of isolating the impact of
ethnicity from other complex factors. Interpreting variations in health is highly complex,
as aspects other than ethnicity come into play. For example, it may be that for people
growing up outside the UK, the length of time in education is shorter than that of the
indigenous population (Richards et al., 2000). This in turn will inuence performance in
cognitive testing (Parker and Philp, 2004). Indeed it has been found that longer periods of
schooling carries a reduced risk of dementia (Powell, 2002), thus life style factors rather than
ethnicity itself may be the issue both in relation to incidence of dementia and diagnosis of
dementia.
Researchers need to take account of the potential for factors other than ethnicity to be key
variables when designing research projects and drawing conclusions based on ethnic samples.

Ethnicity and health inequalities: Caution is necessary

A fourth and nal assumption that can be challenged relates to how the health inequalities
noted among certain ethnic groups may be addressed. The National Service Framework for
Older People called for all services to be culturally appropriate, reecting the diversity of the
population that they serve (Department of Health, 2001: p. 4). However, this document also
acknowledged the importance of an individual approach. Some documents, however, appear
to have been based on an assumption that cultural appropriateness is based entirely on the
presence of targeted services. This is implicit, for example, in the Forget Me Not 2002 update
(Audit Commission, 2002), where it was reported that only a small minority of areas (6%)

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442 Journal of Research in Nursing 16(5)

had culturally appropriate services for older people with mental health needs, although a
further 49% had them to some degree (idem, p. 39).
That this is a somewhat stark and simplistic view is borne out elsewhere; for example one
survey within the London Borough of Haringey indicated that there was variation in how
members of three ethnic minority groups wanted specic services to be provided, with only
one group, Gujarati people, wanting separate services, and even here this was not a universal
wish. For Irish and African Caribbean participants the emphasis was on the quality of service
rather than cultural exclusivity (Brownfoot, 1998). Ilie and Manthorpe (2004) have called
for recognition of the diversity of all service users, with an emphasis on enabling access to
mainstream services which address individual needs rather than the development of what they
see as segregated or specialist services for people from minority backgrounds. This remains
a controversial and contested area for local service providers, with no clear evidence on the
best models of service provision (Daker-White et al., 2002). Whilst it is beyond the scope of
this review to look at what these services might actually look like, this appears to be an
important and necessary aspiration.
Although caution is necessary, the concept of ethnicity is useful since it helps us to
understand shared cultural norms and behaviours, which at both group and individual
levels have a bearing on attitudes and experiences around health and illness. Despite this,
much health research continues to ignore the impact of ethnicity as a variable (Hussain-
Gambles, 2003). In the following sections a consideration of ethnicity in relation to
understandings of and attitudes towards health in general and dementia in particular will
be presented, adding weight to the case for research that takes account of ethnic and cultural
factors.

Understandings of dementia: Exploring models and cultural

conceptions
Professional and lay representations of health and illness are culturally determined, and can
be seen to change over time and place. They are inuenced by both individual and collective
knowledge, beliefs and attitudes. Also, the ways in which individuals adjust to changes in their
own health status will be inuenced by the cultural values they are exposed to (Kleineman
et al., 1978).
Murdock (1980) conducted a survey of 139 societies and found diering explanations
around illness. For example, in sub-Saharan Africa explanations tended to be based on
moral transgressions, whereas in East Asia the tendency was more for interpersonal
explanations, and in circum-Mediterranean area there was greater emphasis on witchcraft
explanations for illness and death.
Shweder et al. (1997) described seven general systems of understanding around health and
illness, which they termed causal ontologies of suering. They divided them into biomedical,
interpersonal, socio-political, psychological, astrophysical, ecological, and moral frameworks.
An alternative paradigm is that of individualism versus collectivism (Hofstede, 1980). Here,
the predominantly Western culture of individualism, where the focus is on the separateness,
uniqueness, and autonomy of members, is contrasted with that of societies where community
and divinity discourses are emphasised, such as within Hindu society (Marks et al., 2005). In
individualist societies the cultural value emphasises personal responsibility for health
(Brownell, 1991).

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Botsford et al. 443

Explanatory models of health and illness within contemporary Western societies are
largely framed within a medical model which can be seen to stem directly from Cartesian
dualism, and beliefs about the mindbody split. Within the medical model the causes of ill-
health are sought in altered functioning in the biology of an organism, and therefore
responses are largely based on physical or pharmacological approaches (Crossley, 2000).
Although the medical model has come under increasing challenge, it remains a dominant
approach. Its main challenger can be seen to be the Biopsychosocial Model (Engel, 1997).
This model allows for an integration of the psychological and social aspects of illness
alongside the purely biological aspects, summed up as the three Ps (people, prevention,
psychology) as opposed to the three Ds (diagnosis, disease, drugs) of the medical model
(Marks et al., 2005).
Professional and academic explanations of dementia fall broadly between the medical and
biopsychosocial models. Within the medical model the term dementia refers to a collection of
symptoms which includes a decline in memory, concentration, reasoning and communication
skills, and a gradual loss of the skills required to complete the tasks of everyday living (World
Health Organization, 1993). There are estimated to be more than 100 separate medical
conditions which may produce dementia symptoms. The most common among these are
Alzheimers disease, multi-infarct dementia and dementia with Lewy bodies (Knapp et al.,
2007). Medical research and practice continues to look for physical pathology, and the
emphasis is on pharmacological approaches.
During the 1980s there was a shift towards what was then called the new culture of dementia
care (Kitwood and Benson, 1993; Kitwood, 1997). Kitwood (1997) formulated the
presentation of dementia as having ve key factors. Alongside neurological impairment, he
emphasised even more strongly the persons personality, biography, general health and the
social psychology surrounding the person.
This biopsychosocial view of dementia requires practitioners to understand people with
dementia and how they act in the context of their social circumstances and backgrounds.
Instead of seeing behaviours purely as symptoms of disease, this approach sees them as
attempts to communicate. A persons ethnic background is one aspect of their identity and
is therefore extremely relevant when seeking to engage that person or actively communicate
with them or their family.
Lay conceptions of dementia are inuenced by the cultural perspective from which they are
being viewed. For example, in some African cultures dementia symptoms are perceived as a
sign of possession (Uwakwe, 2000). It is widely accepted that there is no specic term for
dementia within the south Asian languages (Seabrooke and Milne, 2004), and that dementia
is seen as shameful, and therefore to be hidden away (Patel et al., 1998). It is therefore not
surprising that South Asian people in the UK may tend to present late or in crisis to dementia
services, or not at all. A study which explored perceptions of ageing, dementia and age-related
mental health diculties amongst British people of Punjabi Indian origin (La Fontaine et al.,
2007), found that people aged between 17 and 61 years described old age as a time of social
withdrawal and isolation. They found that symptoms of dementia were felt to be due to a lack
of eort from the person themselves or maybe a lack of family care. This study reinforced the
sense of stigma attached to dementia and mental health problems in old age, as well as a lack
of knowledge and engagement with services.
A recent study (Lawrence et al., 2010) found that black Caribbean people with dementia
feared being viewed as crazy or mad. In contrast, a US study exploring attitudes in the

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444 Journal of Research in Nursing 16(5)

African American community found little or no stigma associated with dementia, which was
conceptualised as worration, falling out or high blood, reecting a combination of worry
and stress (Dilworth-Anderson and Gibson, 2002). In this American study elders were
expected to be vulnerable to mental and physical illness, which meant a lack of perceived
stigma to needing help, although there was an expectation that care would be provided by the
family, rather than outside care services.
It appears that dementia diagnosis is even more problematic in the case of people from
minority ethnic groups than in others (Ilie et al., 2000). Evidence from the USA indicates
that ethnic minorities tend to present even later than their white, non-minority counterparts,
with some studies of African American and Hispanic patients nding delays of as much as
seven years before full diagnostic review (Clarke, 2005; Grith and Lopez, 2009). The
authors of these studies attribute this primarily to the belief that dementia symptoms are
an aspect of normal ageing (Henderson and Gutierrez-Mayka, 1992; Braun and Browne,
1998; Alzheimers Association, 2008).
However, this view of dementia as normal is widespread across all ethnic groups (Corner
and Bond, 2004; Bond et al., 2005). It may be that other factors, such as socio-economic
factors and level of education, are also signicant. Hinton et al. (2005) attempted to examine
the impact of ethnicity alongside other factors. In their study of 92 carers from four ethnic
groups they identied the presence of three dierent explanatory models of dementia. These
were the biomedical, folk and mixed (folk/biomedical) models. They found that educational
level, gender and ethnicity were all signicant in relation to the explanatory models adopted,
and noted that ethnic minority carers and those with less formal education were more likely to
adopt folk or mixed explanations.

Caring and dementia: An overview

In the past 20 years there has been a wealth of research in dementia care. Many of the studies
have focused on the experiences of carers, frequently framing them within a stress coping
model (Nolan et al., 2002) and emphasising carer burden (Burns and Rabins, 2000;
Papastavrou et al., 2007). However, as Nolan et al. (2002) point out, this has led to a
preoccupation with the notion of caring as a negative and potentially damaging process.
Whilst this is unsurprising given that over one-third of care providers are known to
suer from high levels of stress, depression or other psychiatric morbidity (Schultz et al.,
1995) it has eclipsed the notion that caring can be rewarding, despite evidence to the
contrary. For example one study (Nolan et al., 1996) found that 5590% of carers could
identify satisfying aspects to caring.
Since Milne and Chryssanthopoulou (2005) in their review of dementia and caring in black
and Asian populations drew attention to the need for further research, there has remained a
relative dearth of published work from the UK. Although some signicant studies have been
published in the interim (Lawrence et al., 2008, 2010; Juttla and Moreland, 2009), it is still largely
to the USA that we need to look for much of the research on ethnicity and dementia caring.
The available evidence strongly suggests that ethnic and cultural factors are highly
signicant in relation to a number of key relevant areas, including family carer burden,
role expectation, coping and self-care strategies and conceptions of dementia itself (Hinton,
2002). Dilworth-Anderson et al. (2002) provide a useful review of research on caring in the
USA among minority ethnic groups in the 20 years from 1980 to 2000. They conclude that
there is clear consensus that older people from minority ethnic groups use more informal than

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Botsford et al. 445

formal support, and that close and distant family members provide the majority of care.
Cultural norms and values are seen to inuence an individuals or familys attitude to
caring, which would inuence whether or not they would take on this role and how they
would feel about it.
There may be dierent consequences of being a carer for members of dierent ethnic
groups (Dilworth-Anderson et al., 2002). Some studies have found that levels of depression
and burden in carers are similar across cultural groups (Wood and Parham, 1990; Cox, 1993),
but others have found dierences in specic groups. There is some evidence that ethnic
minority carers experience less stress than do white US carers (Haley et al., 1995; Connell
and Gibson, 1997). However, since white carers are more likely to be married, of higher socio-
economic status, older, and more likely to access services (Dilworth-Anderson et al., 2002), it
cannot be assumed that these dierences are entirely the consequence of ethnicity alone. One
study which took account of demographic variables was the REACH study, a large multi-site
study which examined well-being, appraisal and religiosity among dementia carers. This study
found that African American carers were less likely to experience depression or a sense burden
in their role in comparison to whites (Haley et al., 1995, 2004), and also that Latino caregivers
tended to appraise caring more positively and report less anxiety than white caregivers (Coon
et al., 2004).
A number of explanations for variance in stress appraisals and burden have been
put forward. As discussed earlier, cultural norms and beliefs appear to inuence
conceptualisations of dementia. It has been suggested that these may have a mediating eect
on both carer well-being and the approaches adopted by carers in relation to seeking help and
managing their situation (Janevic and Connell, 2001). Possible explanations for the dierences
in levels of depression and burden include the notion that in cultures which appraise caring as
a positive fulllment of a role obligation or expectation, those who carry out this role
will perceive it as rewarding rather than burdensome (Lawton et al., 1992). Others have
suggested that it is a result of some minority groups ability to reframe dicult life
experiences, borne out of a need to adapt to long-standing oppression, segregation and
socio-economic deprivation (Wood and Parham, 1990).
One small qualitative UK study suggested that black and Asian carers have experiences of
caring that are similar to their white counterparts (Adamson, 1999). More recently, Lawrence
et al. (2008) conducted a study which drew on earlier research from the USA (Lawton et al.,
1992). Lawton et al. had argued that the relatively low level of carer strain found amongst
African Americans was the result of a traditional attitude to caring characterised as a desire to
pay the receiver of care back for past actions, keep up family traditions and personal values,
and be a good role model for others. Lawrence et al. (2008) developed a typology of attitudes
towards caring which was based on a traditional/non-traditional dichotomy, with traditional
attitudes being characterised by a view of caring as expected, virtuous, and natural (idem,
p. 241). In their study, involving qualitative interviews with 12 carers from each of the three
largest ethnic groups in the UK, they found evidence of traditional and non-traditional
attitudes. They noted that the majority of the south Asians, half the black Caribbean and
a minority of the white British participants held a traditional ideology, and that traditional
attitudes correlated with more positive adjustments to the changes associated with caring.
They argued that the dierences within and between the ethnic groups suggested some degree
of acculturation, highlighting the need to look beyond broad ethnic labels.
The idea that people may conceptualise their situations in dierent ways when a partner or
family member develops dementia is explored by Adamson and Donovan (2005). In their

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446 Journal of Research in Nursing 16(5)

study of South Asian and African Caribbean family carers, Adamson and Donovan (2005)
interviewed 15 South Asian and 21 African Caribbean carers. They found some evidence of
biographical disruption in the accounts of carers but many of the participants saw caring as
virtuous and normal, and as a continuation of their previous role as spouse, daughter or
other relationship role. Adamson and Donovan observed that the descriptions of the carers in
their study chimed with descriptions found elsewhere in the literature on caring drawn from
generic samples. Whilst many of the carers in their study saw what they were doing as part of
their cultural heritage, they concluded that biography and self-identity are important
mediators of the caring experience, alongside cultural and ethnicity factors.
Knowledge about the impact for white minority carers in particular, is entirely absent.
Innes (2003) has described dementia as a hidden disease within ethnic minority communities,
but she also pointed out that white minority ethnic groups tend to be absent from so-called
culturally sensitive provision and often completely absent from reviews of ethnic groups. For
example, she points out that they are not considered at all in the major review conducted by
Patel et al. (1998), perhaps, she proposes, this is because they are perceived to have been
assimilated into the general population even when this is not actually the case.

Conclusion
Ethnicity is a complex and often controversial concept. This review has explored the concept
in depth, and in particular has examined evidence of its signicance in relation to dementia
and caregiving. Studies deriving from the USA and UK have contributed to the existing
evidence base. These have included both quantitative and qualitative studies. Whilst there
have been some larger scale studies in the USA, relevant UK research has tended to involve
smaller scale, local studies and the evidence base remains more limited. This echoes previous
UK commentators criticisms of the limited UK evidence base and their calls for more research
examining the lived experiences of minority ethnic people (Milne and Chryssanthopoulou,
2005) and in particular for studies which explore specic aspects of the experiences and
needs of people from minority ethnic groups that are seldom heard, for example gypsies
and travellers (Moriarty et al., 2011).
Although internationally, especially within the USA, there is a large body of research,
there is a need for further UK research to address the gap, particularly in view of the growing
numbers of people from minority ethnic groups in the older age range as well as the evolving
nature of ethnic and cultural identities. Furthermore, conclusions about the experiences of
people from minority ethnic communities which are drawn from research conducted in other
countries may not be applicable more locally, because of the complexity of the nature of
cultural experiences and the interplay between multiple factors over and above ethnicity.
Although previous studies have shown that there are variations in the ways in which
dierent ethnic groups view and experience dementia, the nature of the relationship
between ethnicity, attitudes and outcomes is not yet fully understood. This is perhaps at
least in part because of the complexities inherent in the concept and the need to ensure
that it is applied sensitively and with an appropriate level of sophistication.

Funding
This research received no specic grant from any funding agency in the public, commercial, or not-for-
prot sectors.

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Botsford et al. 447

Key points
. There is growing ethnic diversity among the UK older population.
. Cultural norms and values have an impact on how people view health and illness and
react to these.
. There is evidence, much of it from the USA, that the impact of caregiving for a person
with dementia, varies among dierent ethnic groups.
. There is a need for further research on dementia and caregiving in the UK.
. The concept of ethnicity is complex and there is a risk that it may lead to inappropriate
generalisations. Researchers need to take account of ethnicity but ensure that
compounding variables are not ignored and ethnic labels are used sensitively and
appropriately.

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Julia Botsford is Senior Admiral Nurse in Barnet, Eneld and Haringey Mental Health NHS
Trust. She recently completed a PhD at Northumbria University, exploring the experiences
of Greek Cypriot and African Caribbean partners of people with dementia.
Email: Julia.Botsford@beh-mht.nhs.uk

Charlotte L. Clarke is Professor of Health in Social Science and Head of the School of Health
in Social Science at the University of Edinburgh. Her research focuses on dementia care and
well-being of older people. Email: charlotte.clarke@ed.ac.uk

Catherine E. Gibb is a Senior Lecturer in the School of Health, Community and Education
Studies at Northumbria University. Her research is focused on dementia care.
Email: catherine.gibb@northumbria.ac.uk

The author has requested enhancement of the downloaded file. All in-text references underlined in blue are linked to public
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