Moving Pictures India: Co‐designing a digital dementia care intervention for low and middle income countries

Abstract

AbstractBackgroundDespite the rapid proliferation of smartphones in low and middle‐income countries (LMICs), few studies have explored how to harness this technology to improve dementia care. Using a case‐study from India, where 830 million people are smartphone users, we describe the co‐design of a fully digitalised dementia care intervention for family carers in a resource‐poor setting.MethodQualitative in‐depth video interviews were conducted in English, Hindi, and/or Kannada with 19 family carers and 25 health providers in Bangalore, India. Data were thematically analysed, then presented to 10 of the interview participants in a co‐design workshop, where they were asked to storyboard the data to form the basis of nine short films on dementia care.ResultWorkshop participants developed storyboards for nine films: signs of dementia and the diagnostic process; first steps and treatment; managing difficult behaviours; working with doctors and going to hospital; managing pain; eating, nutrition, and dental care; managing hygiene and incontinence; later stages and palliative care; and self‐care for carers. A proposed film on care pathways was deemed too broad and discarded. Instead, carers wanted greater specificity on routine, sleep, and pleasant activities as well as legal and ethical issues in dementia care. Overall, 11 films were proposed. Carers used the parent‐child analogy to describe their relationship with the person with dementia, utilised various surveillance technologies to keep their relative safe, and expressed differing views about institutionalised care. These cultural nuances and systemic issues associated with care will be reflected in the films. Once produced, the films will be member checked with all interview participants and community members for cultural salience and relevance before progressing to a full digital trial to evaluate its impact on reducing carer burden and improving carer’s mood and quality of life.ConclusionThe films will be available on a mobile‐optimised website, freely accessible, and bypass barriers of distance, being time‐poor, and semi‐literate. By co‐producing resources in country, this model is scalable, based on knowledge of local resources and burden of disease, and relevant to LMICs where substantive increases in dementia prevalence are anticipated to occur.