Differences between people with dementia are attracting attention.
New research1 includes the views of people with dementia
from two marginalised groups: younger people and people from ethnic
minorities. Interviews were conducted with about 100 professionals,
carers and people with dementia.
The research about younger people with dementia argues that
services should be age-appropriate and individualised. Most of this
research comes from the UK. Studies of ethnic minorities and
dementia are dominated by American literature. However, this is
echoed by UK studies on under-use of services and under-recognition
of dementia. Here there is less agreement about special services,
mainly because it is not known what works and for whom. This lack
of certainty is reflected in a recent short discussion paper from
the Royal College of Psychiatrists.2 This paper calls
for more information about good practice.
The key findings of the research on younger people and ethnic
minorities are that because small numbers of people are involved,
resources, specialism, services and strategies remain
under-developed. Positive practice about issues of race and culture
has not generally been taken up in dementia services. In some
areas, such as south west England, where this research was carried
out, issues of geography are relevant because populations are often
dispersed. The researchers recommend information-gathering at local
level to enable planning and service development. It is stressed
that those gathering this information needed to consult with
The researchers also argue that many of the issues arising from a
focus on younger people with dementia apply to older people.
Services to both groups are often inflexible and many have
difficulties responding to people in an imaginative and
individualised way. This is a result of the lack of resources and
organisational difficulties. However, younger people with dementia
and their carers reported, as in most other studies, that older
people’s services are not appropriate for them. For some ethnic
minorities there appeared to be no apparent advantage in
recognising dementia because of a lack of response and
The researchers maintain that overall improvements in dementia
services would benefit ethnic minorities. They point to a need for
training about race and greater awareness of cultural issues.
Attitudes of professionals were seen to be important in accessing
appropriate care if it existed. Again, very little was known at
local level about current or future needs of ethnic minorities,
making planning difficult. Services that had experience of people
from ethnic minorities reported that they had learned from this and
changed their practice. People with dementia and their families
also appreciated specialist services where they were available.
Most were located in urban areas.
A further message from this research is that people with dementia
are able to express their opinions and voice their needs. This
should encourage consultation. Arising from this research, for
example, were particular difficulties with transport to services
and the need for more flexibility in respite care.
This research is available free on-line, a practice which should
make it possible to consider the issues in other local
Jill Manthorpe is reader in community care at the
University of Hull.
1 G Daker-White, et al, Serving the Needs of
Marginalised Groups in Dementia Care: Younger People and Minority
Ethnic Groups, Dementia Voice, 2002. For more see
2 Royal College of
Psychiatrists, Psychiatric Services for Black and Minority
Ethnic Elders, RCP, 2001, price £5.