Jill Manthorpe looks
at several pieces of research on dementia, each pointing to the need to listen
to the views of dementia sufferers.
in early diagnosis and intervention in dementia is being fuelled by
professionals but also by the views of people with dementia themselves. Last
year a major report from the Mental Health Foundation1 revealed
variations in practice in whether people were told of their diagnosis and the
support that followed. This year the voices of people with dementia themselves
have been heard directly in reporting other experiences.
In a new journal, Dementia,
devoted to bridging the gap between research and practice, Gloria Sterin2
describes how having the label of dementia affects the way people treat and
behave towards you. Sterin reveals how she feels robbed of the respect of other
people who react differently to her now they know she has dementia. Some people
withdraw from her or tiptoe around her as though she were not there. Some
exhibit a kind of sad pity and others smother her with kindness.
Sterin describes some
of the ways in which she lives with her disease. She keeps a note of things to
remember and tries to put this in the same place and check it regularly. She
tries to think of the disease as a challenge or a project to be worked on. Such
accounts make it clear that people with dementia can be involved in research
and consultation. Recently, eloquent pleas were made for the views of people
with dementia, like themselves, to be included.3 It suggests how researchers
can use these views to contribute to research.
Such approaches are
illustrated in an article on services supporting people under 65.4 People and their carers using the service
were interviewed as well as professionals. The researchers found that some
found it easier to recall the service if they were shown photos of its staff,
who they thought were friendly and approachable. They valued the speed of
responses to queries or requests. Carers, in particular, appreciated the way in
which the team developed relationships with the person with dementia and also
the bridge they provided between services and the family.
This research found
that these positive views of services might not necessarily relate to special
needs or circumstances of younger people with dementia but could apply to
anyone with dementia. They found that the social circumstances of the younger
group were not very different from those of older people with dementia. Both
might benefit from a responsive, supportive service.
illustrates the potential for listening to people with dementia and their
carers, and suggests that, at times, their views may differ from professionals.
For example, workers made more of the age differences between “older people”
with dementia and younger groups. In this way we can begin to revisit some
taken-for-granted ideas or practices. And through listening to the experiences
of people like Sterin, we can continue to open up discussions of dementia to
include those centrally involved. One Best Value example from the London
Borough of Kensington and Chelsea by Heiser on including the views of people
with dementia in consultation about home care provides a very helpful checklist
for those undertaking similar work – and this calls on the profession to never
underestimate the abilities of people with dementia.5
Jill Manthorpe is
reader in community care at the University of Hull.
1 R Pratt
and H Wilkinson, Tell me the Truth, Mental Health Foundation, 2001
2 G Sterin,
“Essay on a word: a lived experience of Alzheimer’s disease”, Dementia
Wilkinson (ed), The Perspectives of People with Dementia, Jessica
4 J Reed et
al, “Services for younger people with dementia”, Dementia 1 (1), 2002
5 S Heiser,
“People with dementia reveal their views of homecare”, Journal of Dementia
Care 10 (1), 2002