[A version of this item appears in: Dementia: the Latest Evidence Newsletter (RWHT), Volume 3 Issue 2, September 2012].
People with dementia have the right to participate in decisions about their health and social care. This Norwegian qualitative multi-case study attempts to develop a better understanding of how persons with moderate dementia participate in decision-making about their health care, and how family carers and professional caregivers influence this decision-making.
Professional caregivers tend to base their assessment of mental competence on experience, rather than on standardised tests. People with dementia tend to vary in how they participate in decision-making. Pseudo-autonomous decision-making and delegating decision are not uncommon. Autonomous decision-making exists, but shared decision-making is more typical. Not all decisions are based on cold logic, because personal values and relationships are important.
Factors contributing to non-involvement on the part of the patient include reduced mental capacity, lack of available choices and not being allowed opportunities to participate. Optimal involvement is facilitated by “positioning” the dementia sufferer as being capable of influencing decisions, assessing their decision-making competence, clarifying values and understanding the importance of relationships and context.
Smebye, KL. Kirkevold, M. [and] Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services Research, August 7th 2012, Vol.12(1), pp.241. (Click here to view the PubMed abstract).