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Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers

Published online by Cambridge University Press:  19 March 2013

Kritika Samsi  and
Jill Manthorpe
Kritika Samsi*
Affiliation:
Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK
Jill Manthorpe
Affiliation:
Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK
*
Correspondence should be addressed to: Kritika Samsi, Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK. Phone: +00 44-20-7848-1665; Fax: +00 44-20-7848-5056. Email: [email protected].
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Abstract

Background: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored.

Methods: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts.

Results: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers’ active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this.

Conclusions: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

Keywords

decision-makingdementiacarersautonomy
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 6 , June 2013 , pp. 949 - 961
Copyright
Copyright © International Psychogeriatric Association 2013

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