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Meaningful Activities and Sources of Meaning for Community-Dwelling People Living with Dementia
- Source :
- Journal of the American Medical Directors Association, vol 23, iss 7, J Am Med Dir Assoc
- Publication Year :
- 2022
- Publisher :
- eScholarship, University of California, 2022.
-
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.
- Subjects :
- Gerontology
Adult
Male
medicine.medical_specialty
Aging
personhood
Clinical Sciences
Nursing
Neurodegenerative
Alzheimer's Disease
ethnography
Article
Social support
Quality of life (healthcare)
Cognition
caregiving relationships
Clinical Research
Intervention (counseling)
Surveys and Questionnaires
Behavioral and Social Science
medicine
80 and over
Acquired Cognitive Impairment
Dementia
Humans
General Nursing
Aged
Aged, 80 and over
Geriatrics
Meaningful activities
business.industry
Health Policy
Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)
General Medicine
Caregiver burden
medicine.disease
Brain Disorders
Spouse
Neurological
Quality of Life
Public Health and Health Services
Adult Children
Female
Independent Living
Geriatrics and Gerontology
Thematic analysis
business
Subjects
Details
- Database :
- OpenAIRE
- Journal :
- Journal of the American Medical Directors Association, vol 23, iss 7, J Am Med Dir Assoc
- Accession number :
- edsair.doi.dedup.....7c3e1f49ad3de139cdd460dd3ef1401a