Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial

Abstract

Objectives Internet‐based interventions involving elements of cognitive behavior therapy, psychoeducation, relaxation and skills training for caregivers of people with dementia have been found to be promising in Western countries. Given these outcomes, the adapted version of a multi‐component online caregiver skills training and support program of the World Health Organization, called iSupport, was tested for feasibility and preliminary effectiveness in India. Methods One hundred fifty‐one caregivers of family members with a diagnosis of Alzheimer's disease or dementia were randomized to either the intervention arm (iSupport; n = 74) or to the control group (an education‐only e‐book program; n = 77). Participants were assessed using self‐rated measures of depression and perceived burden, which were the primary outcome measures, at baseline and 3‐month follow‐up. Person‐centered attitude, self‐efficacy, mastery and self‐rated health were also assessed. Results Fifty‐five caregivers (29 in the iSupport group and 26 in the control condition) completed the study. The recruitment and retention rate of the study were 44.67% and 36.42% respectively. No significant differences were found between the two groups at 3‐month follow‐up on the primary outcomes. Among the secondary outcomes, significant improvement was only seen in caregivers' person‐centered attitude towards persons with dementia in the iSupport group (t = 2.228; p < 0.05). Conclusions Despite efforts to recruit and retain participants to the online program, this study had a low recruitment and retention rate, which require closer attention and indicates a need for further adaptations of the Indian version of the iSupport program to improve its acceptability and accessibility. The lessons learned from this study will guide the further development of caregiver training and support interventions in India. The trial was registered with the Clinical Trials Registry‐India (Trial Registration No. CTRI/2017/02/007876).

Feasibility of an online training and support program for dementia carers: results from a mixed-methods pilot randomized controlled trial

“…Such differences might relate with participants not being blind to their allocation condition, as the control group might stay retained to access iSupport at the end of the study. The overall retention rate in this pilot is aligned to previous research [ 21 ] and is higher as compared to the Indian iSupport’s trial (36.42%) [ 35 ]. This suggests the feasibility of a full-scale RCT in Portugal.…”

“…A not-neglectable number of participants randomized to iSupport never registered into the program or visited a residual number of lessons (28.6%, N = 6). In India, 69% of carers completed less than 5 lessons [ 35 ], suggesting a higher adhesion among Portuguese carers participating on this pilot. Weekly email reminders implemented to prevent attrition may have had a role in prompting participation, as suggested by interviews.…”

“…RCTs aimed at determining the effectiveness of iSupport were completed in India [ 33 ] and the Netherlands [ 34 ]. Results published for the former 1 show improvements in the iSupport group on person-centered attitude towards persons with dementia, but not in other outcomes [ 35 ]. The trial had high attrition, hampering more robust conclusions [ 35 ].…”

Development of CuidaTEXT: a text message intervention to support Latino dementia family caregivers

“…We searched specifically for general caregiver support interventions considered evidence-based/informed by the Administration for Community Living (Knowles & Gould, 2019), PubMed literature results using the MeSH terms “Caregivers”, “Dementia” and “Hispanic Americans”, and recommendations on behavioral interventions from the research team. Content categories included dementia education, problem-solving skills training, social network support, care management, and referral to community resources (Alzheimer’s Association, 2021; Baruah et al, 2021; Baumel et al, 2018; Family Caregiver Alliance, 2021; Fitzpatrick et al, 2017; Gallagher-Thompson et al, 2015; L. Gitlin & Piersol, 2014; Gonyea et al, 2014; Grossman et al, 2018; Guerra et al, 2011; Hilgeman et al, 2009; Llanque & Enriquez, 2012; National Academies of Sciences & Medicine, 2016; National Institute on Aging, 2021; Parra-Vidales et al, 2017; Possin et al, 2019; Teri et al, 2003; Waller et al, 2017).…”

Empowering Dementia Carers With an iSupport Virtual Assistant (e-DiVA) in Asia-Pacific Regional Countries: Protocol for a Pilot Multisite Randomized Controlled Trial

“…iSupport has not been adapted for use in most countries in the Asia-Pacific Region (APR). The exception includes India, where study findings underscored the need to pay close attention to cultural adaptations of the program to improve its acceptability and accessibility [ 15 ]. However, cultural adaptation of the iSupport program requires resources, which may not be achievable in many LMICs in the APR.…”