Experiences of caregivers of community-dwelling older persons with moderate to advanced dementia in adapting the Namaste Care program: a qualitative descriptive study

Abstract

Plain language summary As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family and friend caregivers to accomplish their daily activities. Caregivers, however, often report a lack of preparation for their caregiving role. There are few programs focusing on skill-building and positive interactions that can be delivered by caregivers of older persons with moderate to advanced dementia at home. Namaste Care is a program originally created for long-term care that provides multisensory stimulation for persons with dementia through activities such as music, massage, aromatherapy, and nutrition. It has not yet been adapted for use by caregivers in the community. There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement. The purpose of this study is to explore the experiences of caregivers who participated in workshops to adapt Namaste Care for older persons with moderate to advanced dementia at home. A qualitative descriptive design was used. Six caregivers from Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) and completed individual post-workshop interviews. Interviews and notes were analyzed for themes. Key findings were that caregivers had a positive experience by learning how to improve their caregiving skills and being supported to engage in research through numerous strategies such as flexible scheduling and an inclusive environment. Findings support the need to improve caregiver research engagement by ensuring that caregivers experience benefits from their involvement and empowering them to value their contributions in adapting interventions.

Keywords

• Dementia
• Caregivers
• Family
• Older persons
• Workshop
• Namaste Care