1. Meaningful Activities and Sources of Meaning for Community-Dwelling People Living with Dementia.
- Author
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Allison, Theresa A, Gubner, Jennie M, Oh, Anna, Harrison, Krista L, Pham, Kevin, Barnes, Deborah E, Johnson, Julene K, Covinsky, Kenneth E, and Smith, Alexander K
- Subjects
Humans ,Dementia ,Adult Children ,Cognition ,Quality of Life ,Adult ,Aged ,80 and over ,Female ,Male ,Independent Living ,Surveys and Questionnaires ,Meaningful activities ,caregiving relationships ,dementia ,ethnography ,personhood ,Behavioral and Social Science ,Aging ,Clinical Research ,Brain Disorders ,Alzheimer's Disease ,Acquired Cognitive Impairment ,Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD) ,Neurodegenerative ,Neurological ,Clinical Sciences ,Nursing ,Public Health and Health Services ,Geriatrics - Abstract
ObjectivesTo examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life.DesignEthnographic study design using semistructured interviews, participant-observation, and ethnographic analysis.Setting and participantsHome 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.MeasurementsWe 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.ResultsTwenty-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 implicationsFor 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.
- Published
- 2022