Article Text
Abstract
Background People living with dementia in care homes were severely negatively impacted during the COVID-19 pandemic. Those from Black, Asian and Minority Ethnic (BAME) groups were disproportionately affected. High rates of mortality, levels of social isolation, loneliness and responsive behaviours have increased as all external visiting ceased, including visits from creative practitioners. The Culture Box project responded by providing interactive creative activities every week for use between a resident with dementia and a member of care staff. The Culture Boxes also included appropriate public health guidance.
Methods Participatory Action Research (PAR) provided a dynamic and cyclical method that involved 1. Planning, 2. Action, 3. Evaluation and 4. Reflection. The Planning phase involved co-design with stakeholders including people living with dementia and those from BAME communities. Action included production and delivery of Culture Boxes every week (1 via post, followed by 3 digital boxes each month) for 12 months. Evaluation involved collection of baseline and follow data survey data on social isolation, responsive behaviours and personal preferences regarding creative activities. Dialogic interviews, photos and videos were collected at 3 time points. The Reflection phase included project team notes and discussions, and alteration of materials provided if warranted.
Results Eighty-nine people with dementia and 33 staff members participated. Nine percent of residents were from Black and Asian ethnic groups and 89% were White British. Baseline survey findings in July 2020 indicated that 56% of residents felt isolated and 40% reported feeling lonely. Thematic findings from interview data suggest that the Culture Box materials elicited interaction, socialisation, and relationship development. For staff, Culture Boxes provided much needed inspiration and materials at a time of unprecedented stress. Most care home staff were obliged to use their own (corporate or branded) pandemic guidance so did not use the public health information provided. Art making, musical and nature-based activities were particularly valued.
Conclusion The Culture Box project successfully provided interactive, stimulating, and culturally-sensitive materials during the pandemic. The PAR method was adapted to support responsive change to the dynamic context of the pandemic. The project demonstrates the utility of hybrid research activity, working across a wider geographical area, and creative provision for diverse communities. Staff attrition and digital poverty were key challenges experienced.