Utilization, effect, and benefit of the individualized meeting centers support program for people with dementia and caregivers

Abstract

Purpose: There are few interventions on an individual basis to support community-dwelling people with dementia to continue to fulfill their potential in society and to support their informal caregivers via e-Health. This study explored the effectiveness of the individualized Meeting Centers Support Program (iMCSP) consisting of DemenTalent (people with dementia work as volunteers in a society based on their talents), Dementelcoach (telephone coaching), and STAR e-Learning for caregivers, compared to regular MCSP and No day care support. Method: An explorative randomized controlled trial with pre/post measurements (M0-M6) and two groups (iMCSP and regular MCSP). In addition, a comparison was made between iMCSP and a reference No day care control group. Standardized questionnaires were administered on self-esteem, neuropsychiatric symptoms, experienced autonomy and quality of life of the person with dementia, and on caregiver’s sense of competence, quality of life, and happiness. Results: The iMCSP interventions resulted in a broader group of participants utilizing the Meeting Centers. Compared to regular MCSP, DemenTalent had a moderate positive effect on neuropsychiatric symptoms, which also proved less severe. Positive affect of participants improved within the DemenTalent and regular MCSP group after six months. Caregivers of DemenTalent participants experienced less emotional impact of neuropsychiatric symptoms. No differences were found in experienced burden, sense of competence, or quality of life in caregivers using iMCSP or regular MCSP. Compared to those receiving No day care support, caregivers of DemenTalent participants and caregivers using Dementelcoach or STAR e-Learning proved happier. Post-hoc analyses, accounting for potential between-group differences in outcome measures at baseline, generally showed results in the same direction. People with dementia and caregivers highly appreciated iMCSP and regular MCSP. Conclusion: iMCSP can be effectively applied as alternative or additional support via regular Meeting Centers for people with dementia and caregivers who prefer individualized activities/ support. DemenTalent decreased the severity of neuropsychiatric symptoms of people with dementia and emotional burden of caregivers. All iMCSP interventions tended to result in caregivers being happier compared to those receiving no support. Larger-scale studies are needed to investigate the effect of iMCSP on other domains of quality of life of participants.