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

Yous, Marie-Lee; Ploeg, Jenny; Kaasalainen, Sharon; McAiney, Carrie

Background: Globally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family members and friends to complete their daily activities. Family and friend caregivers, however, often report a lack of preparation for their caregiving role. There are few psychosocial programs that can be delivered by caregivers of community-dwelling older persons with moderate to advanced dementia. Namaste Care is a psychosocial intervention, predominantly used in long-term care, to improve the quality of life of persons with advanced dementia. Namaste Care provides multisensory stimulation for persons with dementia through meaningful activities such as music, massage, aromatherapy, and nutrition. There have been limited attempts at adapting Namaste Care for use by caregivers in the community.There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement so that strategies can be put in place for a positive experience. The purpose of this study is to explore the experiences of caregivers who participated in workshop sessions to adapt Namaste Care for community-dwelling older persons with moderate to advanced dementia. Methods: A qualitative descriptive design was used. Six caregivers residing in Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) that were guided by the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework. Caregivers completed individual post-workshop interviews. Experiential thematic analysis was used to analyze interviews and post-interview researcher notes. Results: Key findings were that caregivers had a positive experience in adapting Namaste Care by learning how to improve their caregiving skills and being supported to engage in research through multiple facilitators such as flexible scheduling and an inclusive and respectful environment. Having designated time for discussions between caregivers was perceived as important to forming partnerships within the group to support co-creation of knowledge. Conclusion: Findings support the need to improve caregiver research engagement processes by ensuring that caregivers can benefit through learning opportunities and discussions and empowering caregivers to value their contributions in adapting interventions. 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.

ONTARIO; OLDER people; CAREGIVERS; PATIENT participation; DEMENTIA; QUALITY of life; FRAIL elderly

Research Involvement & Engagement, 2022, Vol 8, Issue 1, p1

2056-7529

Academic Journal

10.1186/s40900-022-00401-6