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Listening to people with dementia and their carers

A new listening programme to find out more about the experiences of people with dementia and their carers starts in England.

The Department of Health’s listening programme will include different ways of gathering people’s views and experiences, both in person and online.

The first part of this work is an online survey for people who have been diagnosed with dementia in the past 2 years (since November 2014), and people who provide unpaid care for them. The survey, which is open until 31 January 2017, asks about people’s experiences of dementia diagnosis, support and awareness. It has been produced in consultation with people with dementia, their carers and our partner organisations.

As well as the online survey, local dementia groups will be able to discuss the questions in groups or one to one and feed the results back to the department. To help with this, we have published guidance on holding discussions with people with dementia and carers. We want to make sure that we hear from as many people as possible, particularly those from diverse communities and those whose voices aren’t often heard. We will be organising specific discussion groups with these communities.

This survey, and our future plans for the programme, will help us to assess what difference the Dementia Challenge 2020 Implementation Plan is having and where further improvements to the delivery of services and support may be needed at a local level.

The programme’s scope will cover the 5 main themes in the Implementation Plan:

  • health and care
  • risk reduction
  • dementia awareness and social action
  • research
  • continuing the UK’s global leadership role

We’ll use the feedback, data and information that we gather to inform the formal review of the Implementation Plan in 2018.

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