People with dementia as peer workers, challenges, and benefits: a thematic analysis and nominal groups study.

BACKGROUND

There are national initiatives to involve service users in service delivery. However, programs employing people with dementia as peer support workers (PSWs) in memory services are in their infancy. This study is the first to explore the challenges and benefits to staff and peers involved in such a program.

METHODS

Focus groups, structured based on nominal groups (NG) methodology were run with PSWs and clinical staff from two memory services. In total, there were 12 participants, with three focus groups: PSWs alone (n = 3); staff members alone (n = 6); and PSWs and staff members combined (n = 6). Data were analyzed through thematic analysis of recorded session content and the ranking of themes inherent in an NG approach.

RESULTS

Perceived benefits of the PSW program were similar for staff and PSWs and included personal benefits for PSWS and stereotype reduction for staff. More challenges were reported by staff than PSWs, but both groups agreed that role definition and dealing with the cognitive deterioration inherent in dementia were key issues.

CONCLUSIONS

The PSW program does have benefits for involved staff and PSWs. However, the challenges identified highlight the need for careful and consensual setup and consideration of power dynamics, with agreed roles and clear guidelines to deal with cognitive deterioration.