“Nothing about us without us” - designing services that people with dementia actually want

Fiona Murphy's picture

“Nothing about us without us” is a slogan increasingly expressed by people with dementia and it is being recognised that they should have the right to a say in decisions that affect them; as well as a sense of ownership, investment, responsibility and of connectedness to the services which are available to them.

A new Learning Paper: Inclusion of People with Dementia in Service Design offers a practical guide to the many ways that people at varying stages of dementia can be supported to contribute to the design of services in a meaningful way.

Informed by the HSE & Genio Dementia Programme

Projects involved with the HSE & Genio Dementia Programme have sought to gain the perspective of people with dementia through the course of their work. People with dementia were provided with real opportunity to contribute to the design of initiatives at development stage, and throughout the lifetime of the project as initiatives were planned and implemented. How this engagement can occur and be effective when seeking the input of people with dementia at varying stages of the dementia journey is the focus for this paper.

In 2015 project representatives from the HSE & Genio Dementia Programme came together in a one day workshop titled “Inclusion of the Person with Dementia”. This workshop, facilitated by Innovations in Dementia, provided an opportunity to share learning through collective exploration of experiences in involving people with dementia in their project’s design and development. They considered what worked well, what was challenging, how were these challenges overcome?

Innovations in Dementia supported this learning opportunity by providing input from their learning in the United Kingdom working with over 60 groups of people with dementia. This paper has been informed by the discussions that took place at this workshop.

The Learning Paper can be downloaded here.