Belinda Dewar, MSc, BSc, RCNT, RN.
Development and Research ManagerFor the past 15 years a central theme of government health-care policy has been to encourage the health service to change the way it relates to those who use it. Recent health policy documents such as Our National Health: A plan for action, a plan for change (Scottish Executive, 2000) emphasise a more integrated way of working that reflects co-operative partnerships.
The project team focused on validating the accuracy, relevance and feasibility of guidelines for the carers of family members with dementia in collaboration with a group of lay carers. Thirty-four carers were invited to participate and 19 did so. They were a small, unique group of individuals and their concerns may differ from those of other carers. Their overriding concerns, however - the importance of knowing the person with dementia, carer expertise going unrecognised, and carers' difficulty in having a voice in the health- and social-care arena, are common concerns of carers that have been echoed in other work.
The guidelines reflect a process of negotiated care (Walker et al, 1999). The key points of the guidelines are listed in Box 2.
Carers can expect their GP, or other health- or social-care professional they are seeing for the first time about the condition of their relative, to:
In order to maintain contact the key person should be:
Carers may work with several groups of professionals who may be involved with planning care (not just the key person). Their knowledge and expertise concerning the individual needing care will be valued by these different groups of health- and social-care professionals, as this knowledge will ensure the relative remains central to any decisions made about their care. This will ensure that care given to the relative, irrespective of care setting, is appropriate, manageable and supported. Carers can therefore expect health- and social-care professionals to:
Involvement in planning person-centred care for people with dementia is not formally recognised by professionals. As a result, it is often ad hoc and dependent on factors such as the personality of the carer. Opportunities for involvement need to move beyond situations which are open only to those who can clearly communicate the wish to be involved in decisions about care.
We are indebted to the carers for their valuable contribution to this study. Funding for this study from the Foundation of Nursing Studies is gratefully acknowledged. The views expressed here by the authors are their own and are not necessarily those of the funding body.
Goulbourne, A., Dewar, B., Irvine, L., Riddell, H. (2001)A Project to Validate Guidelines which seek to involve lay carers of people with dementia in care planning processes: Final report. Edinburgh: Queen Margaret University College.
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Hertzberg, A., Ekman, S. (2000)'We, not them and us?' Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes. Journal of Advanced Nursing 31: 3, 614-622.
Scottish Executive. (2000)Our National Health: A plan for action, a plan for change. Edinburgh: Scottish Executive.
Sheard, D. (1998)Community mental health teams (older people): the Coventry model. In: Sheard, D., Cox, S. (eds). Teams, Multidisciplinary and Interprofessional Working and Dementia. Stirling: Dementia Services Development Centre, University of Stirling.
Walker, E., Dewar, B., Riddell, H. (1999)Guidelines to Facilitate the Involvement of Lay Carers in the Care Planning of the Person With Dementia. Edinburgh: Queen Margaret University College.
Walker, E., Dewar, B. (2001)How do we facilitate carers' involvement in decision making? Journal of Advanced Nursing 34: 3, 329-337.