Telling it as it is: involving people with dementia and family carers in policy making, service design and workforce development

Abstract

Purpose

The purpose of this paper is to highlight the need for proper involvement of people with dementia and carers in policy making and to suggest practical ways to achieve this.

Design/methodology/approach

Drawing from personal experience derived from a long career in service development in health and social care, the author outlines the importance of recognising that people with dementia and family carers are experts by experience and the merits of involving people at an early stage.

Findings

The best ideas come from involved people. Without the insights gained through the lived experiences of people with dementia and family carers, policy makers and professionals run the risk of developing costly services that do not meet the needs of those who will be using them.

Practical implications

A number of key practical pointers are developed and summarised. Engagement and one-off consultations are not enough. Real involvement has to be part of everyday practice, at all levels. It requires investment to enable people with dementia and carers to have a seat at the table, speak about what matters to them and help professionals develop relevant services that meet their needs.

Originality/value

The author is able to draw on particular insights gained as Programme Lead for Dementia at the Department of Health during the development of the first English National Dementia Strategy and, more recently, experience of developing engagement strategies in various localities. This included supporting people with dementia and family carers before, during and after key events at which they shared their experiences with commissioners and service providers.

Citation

Eley, R.M. (2016), "Telling it as it is: involving people with dementia and family carers in policy making, service design and workforce development", Working with Older People, Vol. 20 No. 4, pp. 219-222. https://doi.org/10.1108/WWOP-09-2016-0026