How do persons with dementia participate in decision making related to health and daily care? A multi-case study

Many countries have passed laws giving patients the right to participate in decisions abouthealth care. People with dementia cannot be assumed to be incapable of making decisions ontheir diagnosis alone as they may have retained cognitive abilities.The purpose of this study was to gain a better understanding of how persons with dementiaparticipated in making decisions about health care and how their family carers andprofessional caregivers influenced decision making.

Methods: This Norwegian study had a qualitative multi-case design.

The triad in each of the ten casesconsisted of the person with dementia, the family carer and the professional caregiver, in all30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older(2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3)able to communicate verbally.

The family carers and professional caregivers were then askedto participate.A semi-structured interview guide was used in interviews with family carers and professionalcaregivers. Field notes were written after participant observation of interactions betweenpersons with dementia and professional caregivers during morning care or activities at a daycentre.

How the professional caregivers facilitated decision making was the focus of theobservations that varied in length from 30 to 90 minutes. The data were analyzed usingframework analysis combined with a hermeneutical interpretive approach.

Results: Professional caregivers based their assessment of mental competence on experience and noton standardized tests.

Persons with dementia demonstrated variability in how theyparticipated in decision making. Pseudo-autonomous decision making and delegatingdecision making were new categories that emerged.

Autonomous decision making did occurbut shared decision making was the most typical pattern. Reduced mental capacity, lack ofavailable choices or not being given the opportunity to participate led to non-involvement.Not all decisions were based on logic; personal values and relationships were also considered.

Conclusions: Persons with moderate dementia demonstrated variability in how they participated in decisionmaking.

Optimal involvement was facilitated by positioning them as capable of influencingdecisions, assessing decision-specific competence, clarifying values and understanding thesignificance of relationships and context.

Author: Kari Lislerud SmebyeMarit KirkevoldKnut Engedal
Credits/Source: BMC Health Services Research 2012, 12:241

Published on: 2012-08-07

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