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Dementia
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Freedom of choice and decision-making in health and social care

Views of older patients with early-stage dementia and their carers

Jeanne Tyrrell

Nathalie Genin

Michele Myslinski

Université Pierre Mendès France

People with dementia represent a significant and growing proportion of patients, but little is known about their involvement in making choices about their health or social care. This study explored the experiences of French older patients with dementia and their caregivers about their participation in decision-making. Individual semi-directive interviews were conducted with patients (n= 21) and their primary carer focusing on a recently made decision (to accept professional help at home, to attend a day centre, or to move into residential care). Five aspects of decision-making were explored: information received; being listened to; expression of opinion; time allowed to reflect on decision; and possibility of changing one's mind. Carers tended to be more satisfied than patients on most criteria. Many patients felt they had not been listened to sufficiently, and had limited freedom to participate in decision-making. Continuing education may help professionals to improve their ability to involve patients with dementia in decision-making concerning their care arrangements.

Key Words: communication • decision-making • dementia • evaluation • patients' and carers' views

Dementia, Vol. 5, No. 4, 479-502 (2006)
DOI: 10.1177/1471301206069915
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