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.
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.
J Am Med Dir Assoc. 2022 Jul;23(7):1191-1196.e1. doi: 10.1016/j.jamda.2021.08.009. Epub 2021 Sep 2.
To examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life.
Ethnographic study design using semistructured interviews, participant-observation, and ethnographic analysis.
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.
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.
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.
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.
研究居家痴呆症患者如何参与有意义的活动，这是生活质量的关键组成部分。
采用半结构化访谈、参与式观察和民族志分析的民族志研究设计。
居家环境。通过旧金山湾区的 3 个老年病项目招募痴呆症患者，每位患者配 1 名主要的常住护理伙伴。参与者采用目的性抽样，以最大限度地增加痴呆症严重程度和生活经历的异质性。
我们使用结构化问卷、半结构化的双人访谈以及观察活动参与情况，让参与者在痴呆症发病前和研究期间自我识别并报告有意义的活动参与情况。家访进行录音、转录，并使用主题分析进行归纳分析。
21 名患有痴呆症的患者（平均年龄 84 岁，38%为女性）和 20 名护理伙伴（59 岁，85%为女性），包括 40%的专业人员、35%的配偶/伴侣和 15%的成年子女。总体主题：具体活动随着时间的推移而变化，但意义和身份的潜在来源保持稳定。随着痴呆症的进展，有意义的活动参与有 3 种途径。途径 1：当参与活动只需要很少的功能或认知能力时，活动继续进行，几乎不需要调整（例如，在电视上看足球）。途径 2：当参与活动需要更高的功能或认知能力时，护理人员会调整或替换活动（例如，出国旅行）。这种途径与护理经验、护理培训和强大的社会支持结构有关。途径 3：护理人员停止有意义的活动参与。停止与严重的护理人员负担有关，加上疾病、伤害或其他严重到足以影响他们促进活动能力的护理需求。
对于居家痴呆症患者，尽管有意义的活动参与发生变化，但意义和身份的潜在来源保持稳定。随着时间的推移，许多与适应或停止相关的因素是可以改变的，可以作为干预的目标。
