| Literature DB >> 33640979 |
Kenneth Hepburn1, Joe Nocera2, Melinda Higgins1, Fayron Epps1, Glenna S Brewster1, Allison Lindauer3, Darby Morhardt4, Raj Shah5, Kalisha Bonds1, Rachel Nash1, Patricia C Griffiths2.
Abstract
BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions.Entities:
Keywords: Alzheimer’s disease; Caregiver stress; Mastery
Mesh:
Year: 2022 PMID: 33640979 PMCID: PMC7989248 DOI: 10.1093/geront/gnab029
Source DB: PubMed Journal: Gerontologist ISSN: 0016-9013
Study Measures
| Measure | Instrument | Description | Validity/reliability | Cronbach’s alpha |
|---|---|---|---|---|
| Perceived stress | Perceived Stress Scale ( | A 14-item Likert-type questionnaire; higher scores reflect higher perceived stress | Internal consistency ranges reported at 0.84 or higher ( | 0.881 |
| Depression | Center for Epidemiological Studies— Depression ( | A 20-item Likert scale scored 0–3 with somatic and psychological subscales | Alpha = 0.85 for the general population; validity well-established ( | 0.902 |
| Anxiety | State–Trait Anxiety Inventory (STAI; | A 20-item, 4-point Likert scale sensitive to changes in transitory anxiety | STAI state sensitive reliability reported at 0.94 ( | 0.949 |
| Burden | The Zarit Burden Inventory ( | A 22-item, 4-point Likert scale widely used in caregiving studies | Used in multiple studies with well-established validity ( | 0.906 |
| Caregiver mastery | Pearlin Mastery, Loss, and Competence ( | Six brief (three to six items) Likert scales assessing mastery and loss dimensions | Alpha coefficients from 0.71 to 0.92 ( | Caregiver competence = 0.762 |
| Situation management = 0.446 | ||||
| Behavioral and psychological symptoms in dementia | Revised Memory and Behavior Problem Checklist ( | A 24-item Likert scale instrument that assesses patient behaviors and caregiver responses to them | Reliabilities of 0.84–0.90 are reported for behavior and reaction ( | 0.883 |
Figure 1.Tele-Savvy Consolidated Standards of Reporting Trials (CONSORT) chart.
Description of Trial Participants
| Overall | Active | Attention control | Waitlist control | |||
|---|---|---|---|---|---|---|
| Measure | Mean ( | Mean ( | Mean ( | Mean ( |
| |
| Age—caregiver | 64.6 (11.2) [29–89] | 66.0 (10.9) | 63.8 (11.6) | 63.7 (10.7) | .281 | |
| Age—person cared for | 74.6 (9.8) [50–94] | 75.1 (8.6) | 74.4 (10.6) | 74.4 (10.3) | .875 | |
| Person cared for | Spouse | 172 (65.9%) | 69 (71.9%) | 68 (61.3%) | 35 (64.8%) | .270 |
| Caregiver gender | Female | 184 (70.5%) | 72 (75.0%) | 73 (65.8%) | 39 (72.2%) | .332 |
| Caregiver race | White | 192 (73.6%) | 78 (81.3%) | 75 (67.6%) | 39 (72.2%) | .081 |
| AA/Black | 57 (21.8%) | 15 (15.6%) | 27 (24.3%) | 15 (27.8%) | ||
| Asian | 4 (1.5%) | 1 (1.0%) | 3 (2.7%) | 0 (0%) | ||
| No answer | 1 (0.4%) | 0 (0%) | 1 (0.9%) | 0 (0%) | ||
| Other | 7 (2.7%) | 2 (2.1%) | 5 (4.5%) | 0 (0%) | ||
| Caregiver ethnicity | Non-Hispanic | 250 (95.8%) | 92 (95.8%) | 104 (93.7%) | 54 (100%) | |
| Employed | Yes | 100 (38.6%) | 34 (35.8%) | 45 (40.9%) | 21 (38.9%) | .754 |
| Education | ≥BA/BS | 108 (41.4%) | 41 (42.7%) | 46 (41.4%) | 21 (38.9%) | .901 |
| Area live in | Urban | 93 (35.9%) | 22 (22.9%) | 49 (44.5%) | 22 (41.5%) | .013 |
| Suburban | 116 (44.8%) | 55 (57.3%) | 40 (36.4%) | 21 (39.6%) | ||
| Rural | 50 (19.3%) | 19 (19.8%) | 21 (19.1%) | 10 (18.9%) | ||
| Anyone else help? | Yes | 151 (57.9%) | 60 (62.5%) | 59 (53.2%) | 32 (59.3%) | .387 |
| How much help from others? | Almost no help | 71 (27.3%) | 23 (24.0%) | 37 (33.3%) | 11 (20.8%) | .156 |
| Caring for others in your family? | Yes | 110 (42.1%) | 47 (49.0%) | 45 (40.5%) | 18 (33.3%) | .160 |
| Strife added by family/friends | Only helpful | 100 (38.8%) | 40 (42.1%) | 37 (33.6%) | 23 (43.4%) | .342 |
Note: SD = standard deviation; AA = African American; BA/BS = Bachelors of Arts/Bachelors of Science degree.
aAnalysis of variance (ANOVA) tests were performed to compare continuous numerical age differences between the three randomization groups.
bChi-square tests of independence were performed to compare proportions of categorical responses between the three randomization groups.
Multilevel Model Results Comparing the Three Randomization Groups Over Time for Key Outcomes
| Change from baseline | Effect size | Effect test | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Measure | Group | Time |
| Mean ( | Mean ( | Cohen’s | Number improved from baselineb | Multilevel model effect |
|
|
| Perceived stress | Active | Baseline | 96 | 23.50 (8.93) | Time |
| .172 | |||
| 3 months | 71 | 20.77 (6.93) | 3.21 (7.20) | 0.45 | 48/71 (67.6%) | Group |
| .429 | ||
| 6 months | 72 | 20.72 (7.10) | 3.09 (7.36) | 0.42 | 44/72 (61.1%) | Group × Time |
| <.001 | ||
| AC | Baseline | 111 | 22.66 (8.21) | |||||||
| 3 months | 83 | 21.24 (7.63) | 1.46 (5.58) | 0.26 | 47/83 (56.6%) | |||||
| 6 months | 80 | 22.14 (8.08) | 0.96 (6.06) | 0.16 | 41/80 (51.3%) | |||||
| WLC | Baseline | 54 | 21.73 (7.71) | |||||||
| 3 months | 43 | 23.86 (6.74) | −2.38 (4.80) | −0.50 | 2/43 (27.9%) | |||||
| 6 months | 46 | 23.50 (7.36) | −1.81 (5.74) | −0.32 | 18/46 (39.1%) | |||||
| Depression | Active | Baseline | 96 | 13.14 (9.98) | Time |
| .129 | |||
| 3 months | 71 | 10.45 (9.23) | 2.63 (8.58) | 0.31 | 45/71 (63.4%) | Group |
| .946 | ||
| 6 months | 72 | 10.51 (8.16) | 2.37 (7.47) | 0.32 | 46/72 (63.9%) | Group × Time |
| .032 | ||
| AC | Baseline | 111 | 12.06 (10.09) | |||||||
| 3 months | 83 | 10.52 (9.18) | 1.18 (7.36) | 0.16 | 44/83(53.0%) | |||||
| 6 months | 81 | 11.65 (10.08) | 0.48 (8.70) | 0.05 | 35/81 (43.2%) | |||||
| WLC | Baseline | 54 | 11.08 (8.25) | |||||||
| 3 months | 43 | 12.07 (8.60) | −0.67 (6.13) | −0.11 | 19/43 (44.2%) | |||||
| 6 months | 46 | 12.93 (9.28) | −1.82 (6.27) | −0.29 | 17/46 (37.0%) | |||||
| Anxiety | Active | Baseline | 96 | 35.07 (11.96) | Time |
| .330 | |||
| 3 months | 71 | 32.90 (12.31) | 2.30 (9.50) | 0.24 | 37/71 (52.1%) | Group |
| .853 | ||
| 6 months | 72 | 31.22 (9.97) | 3.22 (11.14) | 0.29 | 42/72 (58.3%) | Group × Time |
| .079 | ||
| AC | Baseline | 111 | 34.61 (13.13) | |||||||
| 3 months | 83 | 32.96 (11.50) | 1.60 (8.67) | 0.18 | 41/83 (49.4%) | |||||
| 6 months | 81 | 34.07 (11.83) | 1.12 (9.28) | 0.12 | 35/81 (43.2%) | |||||
| WLC | Baseline | 54 | 33.41 (11.61) | |||||||
| 3 months | 43 | 35.00 (12.15) | −0.91 (9.97) | −0.09 | 22/43 (51.2%) | |||||
| 6 months | 46 | 35.41 (12.93) | −1.43 (11.31) | −0.13 | 20/46 (43.5%) | |||||
| Burden total | Active | Baseline | 96 | 37.34 (13.77) | Time |
| .729 | |||
| 3 months | 69 | 35.26 (13.03) | 2.29 (8.15) | 0.28 | 47/69 (68.1%) | Group |
| .770 | ||
| 6 months | 72 | 35.54 (13.63) | 1.43 (9.27) | 0.15 | 42/72 (58.3%) | Group × Time |
| .147 | ||
| AC | Baseline | 111 | 35.78 (14.66) | |||||||
| 3 months | 83 | 36.28 (13.49) | 0.69 (8.66) | 0.08 | 46/83 (55.4%) | |||||
| 6 months | 80 | 35.91 (12.96) | 1.22 (7.71) | 0.16 | 43/80 (53.8%) | |||||
| WLC | Baseline | 54 | 35.94 (15.99) | |||||||
| 3 months | 43 | 37.82 (15.80) | −1.23 (7.54) | −0.16 | 17/43 (39.5%) | |||||
| 6 months | 45 | 37.48 (17.31) | −1.70 (7.11) | −0.24 | 19/45 (42.2%) | |||||
| BPSD reaction | Active | Baseline | 96 | 13.84 (9.78) | Time |
| .566 | |||
| 3 months | 70 | 10.36 (7.90) | 3.47 (7.77) | 0.45 | 45/68 (66.2%) | Group |
| .244 | ||
| 6 months | 70 | 11.30 (8.26) | 2.88 (8.50) | 0.34 | 38/68 (55.9%) | Group × Time |
| .031 | ||
| AC | Baseline | 110 | 12.34 (11.89) | |||||||
| 3 months | 79 | 11.60 (9.01) | 0.85 (7.96) | 0.11 | 35/79 (44.3%) | |||||
| 6 months | 78 | 12.28 (9.82) | 0.22 (8.63) | 0.03 | 34/78 (43.6%) | |||||
| WLC | Baseline | 53 | 13.47 (12.30) | |||||||
| 3 months | 42 | 14.50 (10.33) | −1.74 (9.14) | −0.19 | 13/42 (31.0%) | |||||
| 6 months | 43 | 15.00 (12.96) | −1.28 (11.15) | −0.11 | 16/43 (37.2%) | |||||
| Pearlin caregiver competence | Active | Baseline | 96 | 12.11 (2.12) | Time |
| <.001 | |||
| 3 months | 71 | 13.21 (1.46) | −1.39 (1.51) | −0.93 | 54/71 (76.1%) | Group |
| .166 | ||
| 6 months | 72 | 13.07 (1.71) | −0.97 (1.88) | −0.52 | 38/72 (52.8%) | Group × Time |
| <.001 | ||
| AC | Baseline | 111 | 12.44 (1.94) | |||||||
| 3 months | 83 | 12.49 (1.98) | −0.12 (1.73) | −0.07 | 30/83 (36.1%) | |||||
| 6 months | 81 | 12.62 (2.15) | −0.27 (1.72) | −0.16 | 30/81 (37.0%) | |||||
| WLC | Baseline | 54 | 12.31 (2.14) | |||||||
| 3 months | 43 | 11.98 (2.27) | 0.26 (1.88) | 0.14 | 16/43 (37.2%) | |||||
| 6 months | 46 | 12.52 (2.19) | −0.17 (2.01) | −0.09 | 19/46 (41.3%) | |||||
| Pearlin management of situation | Active | Baseline | 96 | 11.27 (2.12) | Time |
| .297 | |||
| 3 months | 71 | 12.03 (2.06) | −0.65 (1.66) | −0.39 | 39/71 (54.9%) | Group |
| .629 | ||
| 6 months | 72 | 11.93 (2.21) | −0.54 (2.02) | −0.27 | 37/72 (51.4%) | Group × Time |
| .004 | ||
| AC | Baseline | 111 | 11.63 (2.00) | |||||||
| 3 months | 83 | 11.35 (2.39) | 0.27 (2.10) | 0.13 | 32/83 (38.6%) | |||||
| 6 months | 81 | 11.78 (1.94) | −0.04 (1.65) | −0.02 | 28/81 (34.6%) | |||||
| WLC | Baseline | 54 | 11.43 (1.93) | |||||||
| 3 months | 43 | 11.40 (1.56) | −0.26 (1.56) | −0.16 | 19/43 (44.2%) | |||||
| 6 months | 46 | 11.22 (1.59) | 0.17 (1.50) | 0.12 | 17/46 (37.0%) | |||||
Note: BPSD = behavioral and psychological symptoms in dementia; SD = standard deviation; AC = attention control; WLC = waitlist control.
aSome questionnaires with missing or skipped items had missing scores for one to two participants at some time points beyond missing data due to attrition. These additional missing scores were minimal.
bNegative ranks that indicate improvements from baseline are shown for all measures except for the two Pearlin measures for which positive ranks indicate improvement from baseline.