The Benefits of a Person-centered Social Program for Community-dwelling People with Dementia and Caregivers: An Interpretative Phenomenological Analysis

Abstract

This qualitative study aimed to explore the experience and impact of a person-centered, social program on community-dwelling people with dementia and their caregivers. I conducted semi-structured interviews with five dyads, each with a person with dementia and that person’s caregiver, 7-8 months after the program ended to assess persistence of the program’s impact. Interviews were analyzed using interpretative phenomenological analysis involving in-depth analysis of a small number of cases. Three themes emerged among people with dementia: 1) Participation in activities supporting self-identity; 2) The value of newly established intergenerational relationships; and 3) Empowerment and the student partner’s attitude. These findings suggest taking part in a person-centered, social program promoted participation in activities supporting the self-identity of people with dementia and establishment of satisfying relationships with student partners. The student partner’s attitude influenced the level of empowerment for the person with dementia in relation to participation in meaningful activities and relationships. Three themes also emerged among caregivers: 1) Benefits of the program for caregivers; 2) Initial expectations and the later perspectives of caregivers about the program; and 3) Conflicting values and perspectives between caregivers and spouses. Benefits identified by caregivers included feeling enjoyment and satisfaction of their spouses with dementia from participation in the program; having a fun time with a friend or alone separate from the spouse; and a chance to socialize with a younger person while assuming a role as an older friend or parent. Participation in the program provided a sustained benefit to one couple in particular even 7 months after the program ended, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing. Conflicting perspectives noted between people with dementia and the caregivers illustrate needs and desires expressed by both people with dementia and their caregivers need to be considered when structuring social partner activities. These findings address a gap in the literature by documenting how a person-centered, social program benefits both community-dwelling people with dementia and their family caregivers, with implications for providing insightful opportunities for social engagement as part of occupational therapy and other health care practices.