Abstract
BackgroundCaring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home.MethodsThis study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12).ResultsThirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, − 0.44 – 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention.ConclusionsThe Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial.Trial registrationClinical Trials: NCT02806583, June 9, 2016 (retrospectively registered).
Highlights
Caring for people with dementia at home requires considerable time, organization and commitment
Participant recruitment and retention Of the 101 informal caregivers screened, 38 informal caregivers were eligible at the baseline and were incorporated into the analysis
The reasons for the exclusion of potential study participants were: lack of information regarding the medical dementia diagnosis of the care recipient (N = 8), care recipient with a frontotemporal dementia (N = 6), care recipient was admitted to a nursing home (N = 7), the weekly time spent on care by an informal caregiver was too short (N = 7), potential study participants were not the relative of the person with dementia (N = 2), the care recipient died during the recruitment phase (N = 2) and an psychiatric diagnosis (N = 1)
Summary
Caring for people with dementia at home requires considerable time, organization and commitment. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological healthrelated quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Informal caregivers remain the cornerstone for care recipients living at home [2], and half of those care recipients are people with dementia [3]. Supporting and caring for people with dementia requires time, personal engagement and day-to-day management. Due to their care responsibilities, informal caregivers of people with dementia often show higher stress levels than caregivers of physically frail elderly people [4] and have an increased risk of becoming physically and mentally ill. The care responsibility increases over the course of dementia, especially as challenging behaviors occur and cognitive abilities decline [5]
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