Inclusion of People with Dementia in the Design of Services
Research team
Steve Milton, Innovations in Dementia CIC.

Inclusion of People with Dementia in the Design of Services

Creating responses that support people with dementia, should be informed by people with dementia, as their insight and perspective of living with dementia and the challenges it presents is a contribution that has obvious value. 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, representatives from the HSE & Genio Dementia Programme came together in a one day workshop titled “Inclusion of the Person with Dementia”. This workshop, provided an opportunity to share learning through collective exploration of experiences of involving people with dementia in service design and development. They considered what worked well, what was challenging and how these challenges were overcome.

The paper highlights the following key points which emerged from the workshop;

  • It is increasingly recognised that people with dementia should have the right to a say in decisions that impact them and a sense of ownership, investment, responsibility and of connectedness to the services which are available to them.
  • Key to their successful inclusion of people with dementia is a response that supports their needs so that they can optimise their engagement.
  • By having a range of methods available to support engagement, and choosing which one or combination of these is appropriate will take account of the needs of the individual that you wish to engage with.
  • A listening culture and a supportive organisational environment will help successful engagement.
  • Inclusion also helps create a sense of purpose, builds confidence, empowerment and increased self-esteem and can improve health and wellbeing.
  • Participation in service design enables people to leave a legacy.
  • By recognising people’s skills and experience and their unique expertise from the ‘lived experience’, people living with dementia have a role and maintain a sense of value and purpose.


Key Points
  • People living with dementia should have input into decisions and services which impact them.
  • Having this input can provide a sense of ownership, investment and connectedness to the services.
  • Key to the successful inclusion of people with dementia is a response that supports their needs and optimises engagement.
  • By recognising each person's unique expertise, people living with dementia can maintain a sense of value and purpose.

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