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Journal of the American Medical Directors Association
07, 2022;23 (7): 1191-1196.e1.

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
Author Information
  1. Theresa A Allison: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; University of California, San Francisco Department of Family and Community Medicine, San Francisco, CA, USA; San Francisco VA Health Care System, San Francisco, CA, USA. Electronic address: theresa.allison@ucsf.edu.
  2. Jennie M Gubner: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; University of Arizona, Fred Fox School of Music, Tucson, AR, USA; Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, USA.
  3. Anna Oh: San Francisco VA Health Care System, San Francisco, CA, USA.
  4. Krista L Harrison: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, USA.
  5. Kevin Pham: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; John A. Burns School of Medicine, University of Hawai'i at Manoa, Honolulu, HI, USA.
  6. Deborah E Barnes: San Francisco VA Health Care System, San Francisco, CA, USA; University of California, San Francisco Department of Psychiatry, San Francisco, CA, USA.
  7. Julene K Johnson: University of California Institute on Health and Aging, School of Nursing, San Francisco, CA, USA.
  8. Kenneth E Covinsky: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; San Francisco VA Health Care System, San Francisco, CA, USA.
  9. Alexander K Smith: University of California, San Francisco Division of Geriatrics, Department of Medicine, San Francisco, CA, USA; San Francisco VA Health Care System, San Francisco, CA, USA.
PMID: 34481793 DOI: 10.1016/j.jamda.2021.08.009

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.

Keywords

Meaningful activities caregiving relationships dementia ethnography personhood

Grants

  1. K24 AG068312/NIA NIH HHS
  2. K01 AG059831/NIA NIH HHS
  3. L30 AG060590/NIA NIH HHS
  4. T35 AG026736/NIA NIH HHS
  5. P30 AG044281/NIA NIH HHS
  6. K23 AG062613/NIA NIH HHS

MeSH Term

Adult
Aged, 80 and over
Female
Humans
Male
Cognition
Dementia
Independent Living
Quality of Life
Surveys and Questionnaires
Adult Children
Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

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