Families and Ageing: Working Towards a Positive Partnership with Services

Whilst older people with intellectual and developmental disabilities (IDD) are not a new population, higher numbers are now enjoying a longer life expectancy. More than ever this creates an opportunity for collaboration that encompasses the needs of services, preferences of families and the wishes of people with IDD themselves. Forward planning and tackling difficult conversations within families between parents, the adult with IDD and their siblings should be viewed as a starting point for partnership with professionals or service providers. This chapter explores two approaches to developing increased partnership between families and services based on two unique studies in Scotland. Firstly, the evaluation of a life story project delivered by Down’s Syndrome Scotland demonstrates how families can start the process of planning ahead by looking back, and how life story work can be a tool for enabling difficult conversations such as bereavement, loss and change. Secondly, in order to develop a meaningful partnership greater onus is required on understanding the perspective of the person with IDD. Findings are discussed from a novel participatory photovoice study co-led by four researchers with IDD to determine their perception of dementia highlighting what they are looking for from families and professionals.