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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