Meaningful Activities and Sources of Meaning for Community-Dwelling People Living with Dementia

Theresa A. Allison, Jennie M. Gubner, Anna Oh, Krista L. Harrison, Kevin Pham, Deborah E. Barnes, Julene K. Johnson, Kenneth E. Covinsky, Alexander K. Smith

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Objectives: To examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life. Design: Ethnographic study design using semistructured interviews, participant-observation, and ethnographic analysis. Setting and Participants: Home setting. People living with dementia were recruited through 3 geriatrics programs in the San Francisco Bay Area, along with 1 primary live-in care partner for each. Participants were purposively sampled to maximize heterogeneity of dementia severity and life experience. Measurements: We asked participants to self-identify and report meaningful activity engagement prior to dementia onset and during the study period using a structured questionnaire, semistructured dyadic interviews, and observed engagement in activities. Home visits were audio-recorded, transcribed, and inductively analyzed using thematic analysis. Results: Twenty-one people living with dementia (mean age 84 years, 38% women) and 20 care partners (59 years, 85% women), including 40% professionals, 35% spouse/partners, and 15% adult children. Overarching theme: specific activities changed over time but underlying sources of meaning and identity remained stable. As dementia progressed, meaningful activity engagement took 3 pathways. Pathway 1: Activities continued with minimal adaptation when engagement demanded little functional or cognitive ability (eg, watching football on TV). Pathway 2: care partners adapted or replaced activities when engagement required greater functional or cognitive abilities (eg, traveling overseas). This pathway was associated with caregiving experience, nursing training, and strong social support structures. Pathway 3: care partners discontinued meaningful activity engagement. Discontinuation was associated with severe caregiver burden, coupled with illness, injury, or competing caregiving demands severe enough to impact their ability to facilitate activities. Conclusions and Implications: For people living with dementia at home, underlying sources of meaning and identity remains stable despite changes in meaningful activity engagement. Many of the factors associated with adaptation vs discontinuation over time are modifiable and can serve as targets for intervention.

Original languageEnglish (US)
JournalJournal of the American Medical Directors Association
DOIs
StateAccepted/In press - 2021
Externally publishedYes

Keywords

  • caregiving relationships
  • dementia
  • ethnography
  • Meaningful activities
  • personhood

ASJC Scopus subject areas

  • Nursing(all)
  • Health Policy
  • Geriatrics and Gerontology

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