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Dementia
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Illustrating the Importance of Including the Views and Experiences of Users and Carers in Evaluating the Effectiveness of Drug Treatments for Dementia

Victoria Traynor

University of Nottingham, UK, victoria.traynor{at}nottingham.ac.uk

Emma Pritchard

Admiral Nursing Central and North West, London Mental Health NHS Trust and Fordementia, UK, emma.pritchard{at}nhs.net

Jan Dewing

Milton Keynes Primary Care & General NHS Trusts, UK, jan.dewing{at}rcn.org.uk

Undertaking a literature review revealed that when evaluating the effectiveness of the drug treatments for dementia few studies purposefully explore the views of users and carers. Their views are mainly derived from secondary analysis of conventional scientific evidence. Where the views of users and carers were explored it was discovered that they evaluate the effectiveness of the drug treatments in terms of quality of life. On its own, the conventional scientific approach of using outcome measures to evaluate the effectiveness of drugs is not sufficiently relevant or meaningful to users and carers. Findings from a study exploring the views of users and carers also demonstrate that professionals are willing to utilize the users’ and carers’ evaluations of the drug treatments for dementia. We suggest that reliable and valid measures are developed which explicitly explore the views of users and carers. This will go towards ensuring clinical trials are relevant and meaningful to the users and carers and not to professionals alone.

Key Words: outcome measures • quality of life • user perspective

Dementia, Vol. 3, No. 2, 145-159 (2004)
DOI: 10.1177/1471301204042334
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