Shifting Paradigms for Dementia: Involving People Living with Dementia Across Research, Policy and Practice

The number of people affected by dementia is growing rapidly and is projected to more than double within the next 30 years. The projected rise in people affected by dementia poses a key political, social and economic challenge for Scotland. Dementia costs the UK £23 billion per year – more than heart disease, cancer and stroke combined. This challenge has also arisen against a backdrop of global economic and political uncertainty, which has led to questions about how far public health and social care services will be able to meet the needs of a growing population of people living with dementia. Unsurprisingly then, dementia is currently a politically hot topic, with attention focusing predominantly on how we might cure it and how we might treat it. Yet while the search for effective treatments goes on, the wider question of the role people with dementia will play in society, and what they will need to support their continuing involvement have been neglected. Yet, current research by the applicants and their networks has underlined a significant lag between person centred and rights-based policy regarding people with dementia and actual practice on the ground. People with dementia report facing social, political, cultural and physical barriers to their community participation, still have problems accessing mainstream services and have a limited say over how such services operates. As a result and despite the rhetoric, the interests of people with dementia are frequently overlooked the level of health and social care delivery, as well as at a broader community level.