What carers want to know

Good multi-professional care in the field of dementia is
essential, so all practitioners must understand what is needed, say social care
researcher Jill Manthorpe and health researcher Steve Iliffe.

What do people want to know when a close relative learns he
or she has dementia? What do they most often ask practitioners? Some answers to
these questions emerged from practitioners in seven workshops, which included
social workers, nurses and GPs, with an average of 23 participants in each
group. Five were held in England, one in Wales and one in Scotland, as part of
a multidisciplinary educational programme on the recognition of and response to
dementia in the community.¹

All were working
with people who have dementia, and their families or carers, and were asked to
name the three most frequent questions posed to them by relatives. Although the
group members did not usually work together, they had participated in joint
activities exploring the recognition of and response to dementia during the
workshops, before considering carers’ needs. Each group was facilitated by an
experienced GP trainer, who helped the groups to reach agreement on important
themes, which were defined, combined and re-ordered in the course of
discussion. Conclusions were presented in a final session for further comment
and debate.

Defining the most
frequently asked questions is relevant to practitioners in dementia care for
three reasons.

– They highlight
matters of immediate concern.

– They indicate
where written material might usefully supplement initial face to face
responses.

– They represent
areas where carers’ groups or carers’ services can develop their resources.

For those assessing
or providing care management services these questions are probably familiar.
But because they were identified by multidisciplinary groups it is worth
remembering that individuals may ask such questions of a number of services,
and that it may be useful to understand how colleagues in other agencies or
other team members might answer such questions and where they would refer
people to for further advice. This helps to set out a mental map of services
and sources of support. This list may therefore have potential for partnership
working at local level, and particularly with GPs, who are trained in a
hierarchical model of professional responsibilities, and have less experience
of networking approaches than social workers and community nurses.

Despite the
variation of the groups – none of which had talked together during the process
of the research – questions were remarkably similar. They are grouped into
three main areas: the future, coping, and explanation. The most common
questions involved wondering about the future. Typical of this was the question
– "what’s going to happen?" – requiring a sensitive and
individualised response. It may relate to people’s anxieties about how long the
illness will last, what form will it take and whether a person will get better.

Future planning
looks set to become even more important with policy encouragement to recognise
dementia early, and to tell or prepare individuals and their families for the
evolution of the disorder, and its likely impact on all concerned. But people
are already asking questions of professionals about the future and what it
means for them. They may do this in general terms or, as two of the groups
reported, relatives often ask if the person with dementia will become
incontinent: if this is a concern voiced by many relatives at an early stage of
the dementia then it would seem advisable for professionals to anticipate such
problems as well as being able to offer support if or when such issues arise.

The second group of
questions covered areas related to coping. "How am I going to cope?"
"What if I can’t?" "Where can I get help?" These seem to
relate to people’s anxieties as they come to terms with the impact of the
diagnosis on a family member. They may suggest that people foresee problems but
they also indicate that people may see them as matters that can be overcome or
minimised. As other researchers have argued,² people can manage many
caring tasks and adapt to the caring role. Meanwhile, professionals have their
own skills in supporting carers with general or specific difficulties.³
But coping is also related to confidence and a sense of control. This suggests
that support for families where dementia is newly diagnosed could be an
important part of helping them address their fears, but also developing
families’ abilities to articulate their needs.

The third group of
questions most often asked by relatives lies in the area of explanation.
Relatives wanted to know "why my relative?", "what caused the
dementia?", and "is it treatable?". This suggests that while
there is interest in medical intervention, it is not families’ sole concern.
Families ask questions of practitioners to seek both general and specific
information. It seems likely that the most effective way of responding is a blend
of information and ongoing access to personalised advice. Many practitioners
now see groups like the Alzheimer’s Society as providing high quality and
accessible information. However, written material may need to be backed up by
practitioners who can relate this to individuals’ questions and circumstances.

The similarity
between the questions posed should not suggest that families’ concerns are
predictable. Each family will face the news in the context of its own past and
present relationships and contexts. Many will have brought their concerns to
practitioners, suspecting that something is wrong. However, the similarity of
the themes suggests that services should develop and improve their responses to
these questions, with training focused on them. Written information for staff
and families could highlight such areas and provide links to other sources of
advice, and those working with carers’ groups may be able to develop self-help
resources to supplement professional interventions.

For social workers
providing community care services, knowledge of the areas which concern
families at the time when dementia has been newly diagnosed may suggest themes
which continue to be relevant in families’ lives. These can be picked up in
later assessments or reviews. Families’ questions do not always require instant
answers, as these workshops demonstrated – they can be the start of a
communication process between practitioners and families, both of whom seek to
support the person with dementia over time.

The strength of
these workshops was their multidisciplinary character. Professional groups have
different perspectives on dementia and on the needs of people with dementia,
and of their families. These perspectives may be one-sided, but open to
enhancement in a well-organised multidisciplinary group where roles and
different contributions are respected. For example, general practitioners tend
to overestimate their ability to communicate with carers, while social workers
and to a lesser extent community nurses are able to offset this with their
different experiences. There are lessons here for primary care trusts, which
might usefully invest time and resources in programmes of multidisciplinary
training for dementia care.

Questions

Frequently asked questions from relatives of people with
dementia to practitioners:

– What does the future hold?

Examples:

What’s going to happen?

Will she/he get better?

What next?

How long?

– How am I going to cope?

Examples:

What if I can’t cope?

What can we do?

What happens if I’m ill?

Where can I get help?

– Why?

Examples:

Is it hereditary?

What’s wrong?

Why him/her?

Jill Manthorpe is reader in community care at the
University of Hull, and Steve Iliffe is reader in general practice at the Royal
Free University College London Medical School.

References

¹
S Iliffe, M Downs, A Eden, C Rae, "The diagnosis and management of
dementia in primary care: development, implementation and evaluation of a
national training programme," Ageing & Mental Health,
3(2):129-135, 1999

²
B Beresford, Positively Parents: Caring for a Severely Disabled Child,
London, HMSO, 1994

³
M Nolan, G Grant and J Keady, Understanding Family Care, Buckingham,
Open University Press, 1996