Paper short abstract:

I will present an ongoing study exploring how people with dementia and carers manage multiple medicines. By combining ethnographic observation and video recording with creative diary data collection methods, this study promotes inclusion of participants with differing cognitive and linguistic skills

Paper long abstract:

The number of people living with dementia who experience polypharmacy (taking five or more medicines) is growing. Managing multiple medicines is increasingly recognised as ‘work’ that creates a burden for people with dementia and informal carers (family and friends) who support them. It is crucial to understand the experiences of people with dementia and informal carers as we seek to reduce this burden. Although the burden is gradually being recognised in research and health policy, the voices of people with dementia are largely absent from literature and professional guidance. In part, this is due to the choice of traditional interviews and focus groups to explore medicines experiences, methods which privilege intact memory and communication skills.

This paper presents an ongoing study using two innovative approaches to exploring experiences of people with dementia, linguistic ethnography (LE) and a modified diary interview method (Bartlett, 2012). LE draws together linguistic and ethnographic methodologies, integrating micro-analysis of language with detailed observations of the context. Modified diary interview method is a participatory method which combines creative methods in diary keeping – writing, photo or audio – with interviews based on diary artefacts, to support recall and provide openings into other ways of knowing.

Specifically, I will ask 1) how can these methods promote inclusion for people with dementia? 2) what challenges and limitations are there in combining ethnographic, linguistic and diary interview methods with people with dementia during the COVID-19 pandemic?