| Literature DB >> 35904843 |
Oleg Zaslavsky1, Jasmine Kaneshiro1, Frances Chu1, Andrew Teng1, Kimiko Domoto-Reilly1, Annie T Chen1.
Abstract
BACKGROUND: Compared to other types of dementia, family caregivers of people with Lewy body dementia (LBD) report higher stress levels and more severe depressive symptoms. Although several digital support interventions for caregivers of persons with dementia exist, few target LBD specifically or leverage a fully remote and asynchronous approach suitable for pandemic circumstances.Entities:
Keywords: Lewy bodies; Lewy body; burden; caregiver; caregiving; dementia; depression; depressive symptom; didactic training; digital health; digital intervention; discussion forum; discussion group; discussion platform; distress; eHealth; feasibility; informal care; internet based; loneliness; lonely; mental health; online discussion; online support; peer support; remote intervention; spousal care; stress reduction; support group; web-based
Year: 2022 PMID: 35904843 PMCID: PMC9377445 DOI: 10.2196/37108
Source DB: PubMed Journal: JMIR Form Res ISSN: 2561-326X
Figure 1Landing page of Virtual Online Communities for Aging Life Experience (VOCALE)–Lewy Body Dementia.
Figure 2Virtual Online Communities for Aging Life Experience–Lewy Body Dementia sample weekly discussion prompt. LBD: Lewy body dementia.
Figure 3Virtual Online Communities for Aging Life Experience–Lewy Body Dementia persona page.
Figure 4Flowchart for study screening, enrollment, and completion. LBD: Lewy body dementia.
Participant demographics (baseline; N=15).
| Variables | Values | ||
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| Female | 14 (93) | |
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| Male | 1 (7) | |
| Age (years), mean (SD) | 65.8 (8.3) | ||
| Caregiver relationship: spouse or partner, n (%) | 15 (100) | ||
| White, not of Hispanic/Latino ethnicity, n (%) | 15 (100) | ||
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| High school diploma or General Educational Development | 3 (20) | |
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| Vocational or associate’s degree | 3 (20) | |
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| Baccalaureate degree | 1 (7) | |
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| Master’s degree | 5 (33) | |
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| Doctoral degree | 3 (20) | |
| Time spent as a caregiver (years), mean (SD) | 3.8 (2.5) | ||
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| Up to 8 hours | 1 (7) | |
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| 20-39 hours | 2 (17) | |
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| ≥40 hours | 12 (80) | |
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| Very uncomfortable | 2 (17) | |
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| Neutral | 1 (7) | |
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| Somewhat comfortable | 6 (40) | |
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| Very comfortable | 6 (40) | |
Participant engagement (posts per week).
| Participant ID | Posts, n | Total posts, n | ||||||||
|
| Week 1 | Week 2 | Week 3 | Week 4 | Week 5 | Week 6 | Week 7 | Week 8 |
| |
| 1 | 3 | 4 | 2 | 4 | 7 | 7 | 5 | 5 | 37 | |
| 2 | 9 | 3 | 2 | 3 | 3 | 6 | 1 | 2 | 29 | |
| 3 | 2 | 5 | 2 | 2 | 2 | 4 | 2 | 3 | 22 | |
| 4 | 2 | 3 | 2 | 2 | 3 | 1 | 0 | 1 | 14 | |
| 5 | 4 | 7 | 3 | 1 | 3 | 0 | 0 | 0 | 18 | |
| 6 | 8 | 5 | 15 | 3 | 1 | 3 | 3 | 6 | 44 | |
| 7 | 4 | 2 | 0 | 0 | 0 | 0 | 0 | 0 | 6 | |
| 8 | 15 | 12 | 8 | 2 | 8 | 10 | 2 | 7 | 64 | |
| 9 | 4 | 6 | 5 | 2 | 4 | 3 | 3 | 2 | 29 | |
| 10 | 3 | 3 | 4 | 2 | 4 | 2 | 2 | 2 | 22 | |
| 11 | 6 | 12 | 5 | 5 | 8 | 10 | 6 | 5 | 57 | |
| 12 | 4 | 5 | 5 | 2 | 4 | 2 | 3 | 4 | 29 | |
| 13 | 3 | 6 | 9 | 4 | 2 | 8 | 2 | 5 | 39 | |
| 14 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
| 15 | 3 | 3 | 2 | 3 | 3 | 3 | 3 | 4 | 24 | |
| Weekly total | 70 | 76 | 64 | 35 | 52 | 59 | 32 | 46 | 434 | |
Baseline, postintervention, and change scores (N=15).
| Parameters | Baseline, mean (SD) | Postintervention (n=12), mean (SD) | Change (n=12), mean (SD) |
| Depressive symptoms | 13.3 (9.0) | 10.9 (9.9) | –3.0 (6.0) |
| Health self-efficacy | 21.5 (3.3) | 21.8 (3.6) | –0.6 (4.3) |
| Perceived stress | 16.2 (7.2) | 13.0 (9.0) | –2.9 (6.8) |
| Loneliness | 5.4 (1.7) | 5.0 (1.7) | –0.33 (0.8) |
| Social support | 32.3 (7.9) | 33.08 (7.1) | –0.33 (4.2) |
| Caregiving burden | 39.1 (10.8) | 36.3 (17.0) | –8.3 (16.6) |
Clinically significant changesa (N=12).
| Variable | Improved, n (%) | Worsened, n (%) | Net improvementb, n (%) |
| Depressive symptoms | 8 (70) | 2 (17) | 6 (50) |
| Health self-efficacy | 3 (25) | 4 (33) | –1 (–8) |
| Perceived stress | 5 (42) | 2 (17) | 3 (25) |
| Loneliness | 4 (33) | 0 (0) | 4 (33) |
| Social support | 3 (25) | 2 (12) | 1 (8) |
| Caregiving burden | 5 (42) | 2 (17) | 3 (25) |
aClinically significant improvement and worsening was defined as an unadjusted standardized change of ≥0.5 SD from baseline to follow-up.
bNet improvement = participants who improved – participants who worsened.
Benefits of participating in the study (N=12).
| Question or response categories | Participants, n (%) | |
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| Not at all | 0 (0) |
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| Some | 3 (25) |
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| A great deal | 9 (75) |
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| Not at all | 1 (8) |
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| Some | 5 (42) |
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| A great deal | 6 (50) |
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| Not at all | 2 (17) |
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| Some | 7 (58) |
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| A great deal | 3 (25) |
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| Not at all | 1 (8) |
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| Some | 7 (58) |
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| A great deal | 4 (33) |