Designing with and for people with dementia

With ca. 10.9 million people affected by dementia in Europe, with 20 million carers, and with no cure in sight, research into care to improve the quality of life of people with dementia is essential, to encourage and enable them to engage in activities that are in line with their interests and experiences. Characterised by progressive memory and cognitive degeneration, people who are affected by Alzheimer’s disease or other dementias often face cognitive, behavioural and psychosocial difficulties, including impairment and decline of memory and changes in identity. As a result, many have reduced physical activities or social engagement, or are unable to work. Emotionally, this can lead to uncertainty, anxiety and depression and a loss of sense of purpose. In this light, it is becoming increasingly apparent that it is not just care that is required but support for how to live well with dementia, whether in one’s own home or in residential care. This includes managing one’s own care and everyday tasks, as well as leisure activities and social engagement. Even small things such as whether and when to go out or what to wear can have important effects on people’s sense of self and wellbeing, contentment and happiness. Key to this is having choices and the ability to decide. Acknowledging the agency of people with dementia and understanding what can be done to support this is therefore a key question.