Self-management and social participation in community-dwelling people with mild dementia: a review of measuring instruments.

BACKGROUND

In order to evaluate interventions promoting social health in people with dementia it is essential to have reliable and valid measures. The present review aims to provide an overview of available instruments for the assessment of two domains of social health in community-dwelling people with mild dementia, i.e., the ability to manage life with some degree of independence (self-management) and participation in social activities.

METHODS

An electronic search was conducted in the following databases: PubMed, CINAHL, and PsycINFO. Characteristics of the instruments, feasibility and psychometric properties of the instruments included are reported on.

RESULTS

We identified eight instruments measuring aspects of self-management and three instruments measuring social participation. Validity and reliability of self-management instruments varied between moderate and good. Little information was found on the psychometric properties of the instruments for social participation. In general, feasibility and responsiveness data regarding application in community-dwelling people with dementia were scarce for both types of instruments.

CONCLUSIONS

Future research into assessment tools for social health should focus on the development of instruments for self-management that also cover the areas of coping with and adapting to the emotional consequences of the disease; instruments for social participation covering the involvement in social interactions that are experienced as meaningful by the person; and on the psychometric properties and responsiveness of instruments. More attention should also be given to the feasibility (ease of use) of these instruments for people with mild dementia, professionals, and researchers.