Memorandum by the Policy Research Institute
on Ageing and Ethnicity
A. INTRODUCTION
1. PRIAE is the leading body specialising
in ageing and ethnicity in the UK and across Europe. Established
as an independent charity in 1998, the Institute seeks to improve
health, social care and housing, income, pensions and, employment
and quality of life for current and future generations of black
and minority ethnic (BME) elders at the national and European
level.
2. The Institute works with BME elders and
age organisations, with clinical and non-clinical professionals
and researchers, across sectors to influence, inform, develop
and strengthen the knowledge base, capacity and practice in ageing
and ethnicity.
3. PRIAE welcomes the opportunity to respond
to the House of Lords Select Committee on Science and Technology
call for evidence on the scientific aspects of ageing. This submission
is based on the Institute's health specific national and European
programmes in dementia; hospital care; diabetes and heart disease
(all funded by Department of Health) and the Minority Elderly
Care (MEC) Report—empirical research undertaken as part
of the EC Fifth Framework Research Programme. This research is
highlighted for it is the largest research project in the area
of ageing and ethnicity in the UK and across Europe, and a first
for the European Commission in its 24 years of research framework
funding. Relevant key findings from the Institute's research project
are set out below. Due to its nature, related issues concerning
BME elders and research enterprise and relevance are appropriately
highlighted.
4. We set out first our key issues in research
borne out of specific major developments highlighted above. This
is then extended to cover the implications of our work and concerns
for the future.
B. OVERVIEW OF
RESEARCH AND
DEVELOPMENTS IN
HEALTH
1. The BME elder population once considered
"too small to worry about by policymakers and planners"
is now set to double, triple or quadruple in this and the next
two decades.[4]
This is in the context of historical underdevelopment of age and
ethnicity, giving rise to the need for rapid progress, and is
the primary reason for PRIAE's establishment.[5]
It is in this regard that PRIAE has developed a range of health
research and development programmes to remedy substantial gaps
in our understanding of specific health conditions and influence
changes in policy, research and practice.
2. We appreciate that the scope of this
enquiry relates to scientific aspects of ageing rather than care
and service provision. Our response is thus limited to this purpose
though it is worth stating that pressures to make service provision
appropriate and adequate is stimulating the need for improved
scientific base in ageing and ethnicity: for example we know that
through service usage, BME elders show a higher level of "earlier
ageing". This is usually attributed to socio-economic considerations
as well as approximating personal definition of old age to life
expectancy of the country from which BME elders originate, usually
lower than in the West. We know less about consequences of occupational
concentrations in areas such as foundries, manufacturing, transport
which the current generation of BME elders were employed in. Nor
do we have sufficient understanding about the "migration"
effect in the UK of BME elder women and men on their physical
and mental health. This in turn has reduced the focus on behaviour
patterns of BME elders, which may delay the onset of long-term
and/or help manage better the conditions that they experience.
The scientific knowledge base is poor in this regard as shown
by PRIAE's own membership of Joseph Rowntree Foundation's Enquiry
into Long Term Care.
3. The MEC research project The MEC research
is designed and managed by PRIAE, begun in year 2001 and concluded
in August 2004, with a launch of its findings to be held at the
European Parliament on 9 December 2004. The MEC research project
was undertaken concurrently in ten European countries: Bosnia-Herzegovina,
Croatia, Finland, France, Germany, Hungary, the Netherlands, Spain
and Switzerland and the UK. The project addresses the position
of 26 different ethnic groups throughout Europe and includes both
qualitative and quantitative research and aims to improve service
provision in the field of health care and social care for BME
elders. The research adopted a multi-disciplinary approach—with
some 30 researchers across Europe from sociology, anthropology,
social psychology, economics, gerontology, demography and management
studies backgrounds.
4. The MEC Project uses a three-foci approach
covering BME elders; health and social care professionals, managers
and planners; and BME voluntary organisations. The research was
conducted in West Yorkshire, London and Scotland with target Afro
Caribbean, South Asian and Chinese/Vietnamese between 2003-04.
All the interviews in the UK were conducted face to face and in
the chosen language of the interviewee. Research Instrument was
developed through critical incidents, focus groups and then adaptation
of both clinical (Easy Care for example) and research instruments
on health, together with SERVEQOL—a quality management tool
for service specification. This necessitated the translation of
research instruments into 7 different languages and the recruitment
of fieldworkers with appropriate language skills. Few previous
research projects on BME elders have been able to focus on all
BME groups in the UK due to limitations in language.
5. The topics covered in the BME elders'
survey Work Package 2 (WP2) include a wide range of demographic
data, the socio-economic background of the participants; their
legal status and migration history; their medical condition as
well as various emotional/psychological attributes; their experiences
with regard to racial harassment; their use and satisfaction with
health and social care services; and their expectations and perceptions
of health and social care services. The WP3 survey covers how
mainstream providers design services for BME elders, the provision
and use of health and social care services and service quality
expectations, perceptions and the gap between these. The survey
provides an extensive data set from health and social care professionals
and managers/planners and addresses whether BME elders have special
health and social care needs and access problems and if so what
the reasons for these are; measures used to encourage take-up
of services by BME elders; resource issues and demand for services,
collaboration in the design of services, service usage and target
groups; and reasons for unmet service needs. In WP4 face to face
interviews were conducted with 50 BME voluntary organisations
in London, West Yorkshire and Scotland. The survey covers organisational
characteristics; target BME groups and the needs of the elders;
service provision; human and financial resources of the organisations;
collaboration with others; attitudes towards mainstream provision
and service quality expectations and perceptions. In some areas
comparison of the results can be made across all three surveys.
6. The findings relevant to this Enquiry
relate to health conditions which show that BME elders from seven
ethnic groups face a range of health problems, for example:
— Afro-Caribbeans had a higher incidence
of high blood pressure; compared to South Asians who had a higher
incidence than the Chinese/Vietnamese.
— Afro-Caribbeans and South Asians
had a higher incidence of diabetes than the Chinese/Vietnamese.
— Heart disease and lung/breathing
conditions were highest amongst the South Asians.
— Osteoporosis and memory problems
were highest amongst the Chinese/Vietnamese.
7. Full findings of the research will be
released on 9 December 2004 at the launch at the European Parliament
co-hosted by Claude Moraes MEP and Stephen Hughes MEP.
8. The purpose of MEC research was:
— To advance research in the area rather
than be limited with small-scale studies which hitherto has been
the experience to date in this area.
— To inform policy and planning and
help direct appropriate investment in care and further research.
— To provide BME elders and organisations
with sound knowledge base and tools, which they can use to influence
nature of future work undertaken in the area, improving quality
and funding.
— To use the research to produce specific
actions from both clinical and non-clinical practice.
— To appreciate that ethnicity and
age as important cross-sections can help majority older people
with low incomes also (eg through research instruments developed
and consequent practice which may arise from the findings).
— It is recognised in the health arena
that BMEs have different health problems than the white British
population. For example the differences with regard to diabetes
are well known. Current research is attempting to identify the
causal mechanisms leading to these differences. We believe the
key issues are for the medical professional to understand the
underlying causes of the differences in the incidence of certain
medical conditions and then to address what can be done about
it. There is a need to understand to what extent the differences
between ethnic groups are unavoidable and what can be changed
and improved over time. There may also be a strong case for more
health education among certain BMEs.
9. The benefits of MEC research to the policymakers,
planners, BME elders, organisations and research community is
immense: we have quantitative data on health conditions and usage
of services previously unavailable. The data is analysed with
respect to age, gender and ethnicity allowing us to make specific
deductions about prevalence of illnesses between these groups,
and consequent responses leading to care considerations. This
research was designed to inform policymakers on the direction
of care based on the health experience of BME elders, and providers'
response. From a research point of view, MEC research created
12 full time equivalent research posts for three years in ten
countries. Fieldworkers were additionally employed. A majority
of researchers had no experience of undertaking major research
in ethnicity and age; where they had research experience in age,
this was limited to qualitative work. In this way human and social
capital has been produced; research instruments produced by PRIAE
with partner comments, were applied in all countries and withstand
rigorous statistical techniques. PRIAE conceptualised this research,
designed it and led it at all stages with specific developments.
This will be a first for a BME led body to engage in such a major
research enterprise in age and ethnicity concerning health. The
Enquiry asks for research capability: we have shown here that
we have delivered a major and complex piece of research attracting
personnel who could understand the proposal (earned the highest
research rating in the theme of ageing) and implement it with
use of appropriate techniques. At the end of this research phase,
our main concern is how to sustain the personnel skilled up in
the area and to maintain the engagement with our majority peers
from gerontology to recognise the work. How funders see our work
is essential to maintain the resource base for such research and
supporting capacity within PRIAE.
10. CNEOPSA (Care Needs for Ethnic Older
Persons with Alzheimers)—this research and development project
from PRIAE established that dementia and ethnicity is on the agenda
(Professor Marshall at the launch, 1998) and the research was
described as "impressive and authoritative" by Health
ministers (Rt Hon Paul Boateng MP 1998; Rt Hon John Hutton 1999).
11. PRIAE commissioned Dr Shah, a psycho-geriatrician
and researcher and member of PRIAE's CNEOPSA working group recently,
to outline assessment and diagnostic issues. We use an extract
from this work (to be published by PRIAE)
Dementia is difficult to diagnose in BME elders
(George & Young, 1991; Patel & Mirza, 2000a) because of
issues listed in Table 5. A further issue is the paucity of suitable
screening and diagnostic instruments for dementia in this group
(Shah, 1998). Cognitive tests developed and standardised in one
ethnic group may not be appropriate for another ethnic group because
they are influenced by culture, education, language, literacy
skills, numeracy skills, sensory impairments, unfamiliarity with
test situations and anxiety (Shah et al., 2004). Instruments
measuring cognitive impairment developed for the English speaking
indigenous population have been developed in a number of ethnic
minority languages using a detailed translation and back-translation
process and formal evaluation of psychometric properties (Shah
et al., 2004). The Mini-Mental State Examination (MMSE)
(Folstein et al., 1975) has been developed in several languages
as listed in Table 6. The Hindi, Urdu, Punjabi, Bengali, Gujarati
and Chinese versions are of particular relevance in the UK. The
abbreviated Mental Test Score (Quereshi & Hodkinson, 1974)
has been developed in several south Asian languages for use among
Gujaratis and Pakistanis and in English for use among African
Caribbeans in the UK (Rait et al., 1997, 2000a, 2000b). The MMSE,
selected items from the CERAD neuropsychological test battery
(Morris et al., 1989), the CAMCOG component of the CAMDEX
interview (Roth et al., 1986) and clock drawing have been
evaluated in elderly African Caribbean people (Richards &
Brayne, 1996; Richards et al., 2000; Stewart et al., 2001).
Most instruments developed for BME elders are either cognitive
screening instruments or those measuring severity of cognitive
impairment; diagnostic instruments have not been formally evaluated
for use with BME elders (our emphasis).
12. The implication of PRIAE's work in dementia
is that while we have lifted the area where it is regarded as
important and included in National Service Framework for Older
People, appropriate instruments, prevalence rates, clinical and
non-clinical understanding of how dementia (mental health generally)
is expressed in behaviour, is yet to be developed.
13. "What works for us" R &D
into CHD and Diabetes concerning BME elders—PRIAE project
funded by R&D at DH. We include here an extract from our soon
to be published work, prepared by Dr H.Waters in this project
(led by Dr L.Fredli, S.Griffiths and M.Gabriel). Very little material
has been found that connects the problems of elderhood per se
with either of the two conditions reviewed here, though there
are a number of studies that discuss the incidence of these two
conditions among the communities. A large amount of research is
being undertaken on these two conditions and ethnicity. None specifically
examines the intersection of age, ethnicity and illness which
is the focus here. Therefore, analysis of practice and health
care interventions in our field has to be extrapolated from a
number of sources, and not necessarily confined to those that
are strictly academic.
14. It is worth pointing out that the higher
incidence of CHD among South Asians was largely placed on the
agenda by South Asians themselves. As in other areas of BME life,
it was communities themselves which first began demanding that
their specific problems be addressed. As early as 1985, the Confederation
of Indian Organisations approached the Coronary Prevention Group
concerning its anxiety over the high rates of CHD among Asians
in Britain. The resulting report, Coronary Heart Disease and Asians
in Britain raised many of the issues that are still being unravelled,
but appears to be rarely cited.[6]
15. A number of studies have attempted to
discover the clinical reasons for such a high incidence, and factors
such as diet, lifestyle, metabolism and genetic predisposition
have all been adduced.[7]
Much large-scale clinical research remains to be done. For example,
the incidence of hypertension—a risk factor implicated in
CHD, itself a risk factor of diabetes—is higher among middle-aged
south Asians (around 30 per cent) and African Caribbeans (around
25-35 per cent) than among the overall population (10 to 20 per
cent).[8]
Yet the incidence of CHD is lower among African Caribbeans than
the national average, while the incidence of stroke is higher.[9]
One small scale survey, starting from the premise that differences
in rates for the main cardiovascular risk factors are not substantial
enough to account for the major differences in the incidence of
CHD, surmised that worse "socio-economic circumstances (especially
those associated with stress, such as that related to employment,
income and housing)" among Asians may also be a factor.[10]
The London Health Observatory has drawn attention to the "interaction
between [health] risks" and "low income, unemployment,
poor quality housing and low educational attainment" as "especially
important in terms of differences in health between ethnic groups",
with BME groups tending to have lower average incomes and higher
unemployment.[11]
Bardsley et al also call for more resources to be put into
"Exploration of how differences in mortality by country of
birth relate to socio-economic variables such as social class".[12]
As we have already seen, BME elders, as pensioners, are among
the poorest of an already poor social group—so the link
between their health status and socio-economic status is not hard
to discern, though it may be awkward to quantify and isolate in
a rigorously academic way.
16. Similarly, it is difficult rigorously
to quantify or isolate the factors underlying differential access
for BME individuals to specialist services. Hence, material attempting
to address this issue tends to fall outside the remit of the more
purely academic literature reviews. Here, the expertise of PRIAE
is important, in that, through its contact with BME elders at
the receiving end of services, it can uncover the factors that
may hinder them from getting appropriate care. More research has
been done in the mental health field, relating to ethnicity, diagnosis
and treatment, and discrepancies arising from discriminatory approaches,
but little has been done in relation to other conditions. According
to the London Health Observatory:
— out-patient attendance rates are
lower for some ethnic minority groups
— . . . some evidence of inequity in
specialist cardiac investigation services, especially for South
Asian groups . . .
All these are factors will particularly impinge
on BME elders, but, apart from PRIAE's work, their experience
of medical and care services has not been examined.
CONCLUSION
(i) We have shown above that major research
and development work that can enhance good health and delay onset
of long term conditions for BME elders is in its infancy. There
are major gaps, and where work is being done, including by PRIAE,
insufficient recognition is being given to it. There is an appearance
of much work being done, but this needs to be seen from the context
of very low base line developments from which it has emerged.
(ii) PRIAE's own capacity to promote good
research and undertake areas that it regards as important is curtailed
by (a) how ageing and ethnicity is conceived by funders and researchers
(b) by funding as a self-financing Institute.
(iii) Any research investment strategy, and
we hope that the Committee's deliberations shall lead to this,
is to be welcomed if it can increase the focus on ageing and ethnicity
and consequent research and developments that can follow.
(iv) In late 2004 it is correct to summarise
research in ageing and ethnicity as: Characteristic of BME elder
research, development and practice is that it is patchy, piecemeal
and ad hoc—where research in one area undertaken is seen
as addressing "anything and everything you wanted to know
about BME elders and condition x". In this sense, BME elder
research and developments is reduced to a very narrow conception
of what is appropriate in ageing and ethnicity (Patel 1999), thereby
denying possibility of wide spread understanding the process of
ageing (both biologically and socially) and its impact on BME
elders and communities. It would be true to say that technological
developments or clinical trials for specific areas concerning
older people are not likely to include BME elders in the sample
frame. If they do it is likely to be too small, rendering the
justification made by PRIAE that unless we have dedicated research
in ageing and ethnicity, the field will remain undeveloped with
differential care as a consequence. That cannot be good when agendas'
about social cohesion, inclusion, health equality and equity are
promoted as policy measures.
REFERENCES
1 Patel, N. (ed) (2003) Minority Elder Care
in Europe—ten country profiles, MEC Research for the EC
5th Framework Research Programme, PRIAE.
2 PRIAE report to the Royal Commission:
Patel, N. (1999) Perspectives on Black and Minority
Ethnic Elders in the UK- report commissioned by the Royal Commission
on Long Term Care for the Elderly, research volume 1, HMSO.
3 Dementia Matters: Ethnic Concerns (PRIAE-CNEOPSA
Project), (1999).
October 2004
4 Census 2001; References 1. Back
5
References 2. Back
6
References 2. Back
7
Coronary Prevention Group, Coronary Heart Disease and Asians
in Britain: a report prepared . . . for the Confederation of Indian
Organisations (London, CIO, 1986). Back
8
See, eg, T. Knight, Z. Smith, J. A. Lockton, P. Sahota, A. Bedford,
M. Toop, E. Kernohan and M.R. Baker, "Ethnic differences
in risk markers for heart disease in Bradford and implications
for preventive strategies", Journal of Epidemiology and
Community Health (Vol. 47, 1993), pp. 89-95; Nada Lemic-Stojcevic,
Ruth Dundas, Stephen Jenkins, Anthony Rudd and Charles Wolfe,
"Preventable risk factors for coronary heart disease in stroke
amongst ethnic groups in London", Ethnicity and Health
(Vol. 6, no. 2, 2001), pp. 87-94. Back
9
V. Soni Raleigh, "Diabetes and hypertension in Britain's
ethnic minorities: implications for the future of renal services",
British Medical Journal (Vol. 314, no 7075, 1997, pp. 209-13,
cited in Mohammed Memon and Farha Abbas, "Reducing health
risks in ethnic communities" Nursing Times (Vol. 95,
no. 27, 1999). pp. 49-51. Back
10
LHO, "Black and minority ethnic populations", op
cit, p 3; White, Carlin, Rankin and Adamson, op. cit; Back
11
G Y H Lip, C Luscombe, M McCarry, I Malik and G Beevers, "Ethnic
differences in public health awareness, health perceptions and
physical exercise: implications for heart disease prevention",
Ethnicity and Health (Vol. 1, no. 1, 1996), pp. 47-53,
citing R. Williams, R Bhopal, and K. Hunt, "Coronary risk
factors in a British Punjabi population: comparative profile of
non-biochemical factors", International Journal of Epidemiology
(Vol. 23, 1994), pp 28-37. Back
12
Bardsley, Hamm, Lowdell, Morgan and Storkey, op cit, p
11. Back
|
