Accepted for/Published in: JMIR Research Protocols
Date Submitted: Mar 15, 2024
Date Accepted: Jul 5, 2024
Intervention for the management of neuropsychiatric symptoms to reduce caregiver stress: Protocol for the Mindful and Self-compassion Care (MASC) intervention for caregivers of persons living with dementia
ABSTRACT
Background:
Stress related to Alzheimer’s Disease and Related Dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress.
Objective:
We describe the development of the Mindful and Self-Compassionate Care program (MASC), the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL study).
Methods:
The SOCIAL study has two phases, both within the NIH stage 1 model. Phase 1 (NIH stage 1A) includes focus groups and the development of MASC. Informed by these results, Phase 2 (NIH stage 1A) will include an open pilot with exit interviews of MASC. Phase 3 (NIH stage 1B) will consist of a feasibility RCT of MASC versus a time and dose matched Health Education Program control. Primary outcomes include feasibility of recruitment and data collection. Secondary outcomes include acceptability, credibility, fidelity, and signals of preliminary efficacy.
Results:
Phase 1 has been completed. Findings from rapid data analyses (5 focus groups, N=28 stressed individuals who cared for persons with ADRD and challenging behaviors) informed the development of MASC (6 sessions). Caregivers reported interest in a brief, virtual stress management program. They had misconceptions of mindfulness and self-compassion but after detailed explanation thought these skills would be helpful. Formal qualitative analyses are in progress. Phase 2 and phase 3 will be completed over the next 2 years.
Conclusions:
We describe the protocol for the SOCIAL study, as well as the development and feasibility testing of the MASC intervention. Future work will include a fully powered efficacy-effectiveness RCT. Clinical Trial: This trial is registered with ClinicalTrials.gov: #NCT05847153, #NCT06276023
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