Listening to the voice of people with dementia

Our latest piece of engagement work has broken new ground by helping people with dementia explain to those commissioning and providing services what life is like for them.

While there is plenty of good information out there from carers, relatives and professionals about the issue of dementia, all too often the individual living with the condition is not listened to.

“Many people with dementia – particularly those in the early stages – have invaluable experiences to share and we felt it was right that their voices should be heard,” explained Dr David Sollis, Engagement Manager at Healthwatch Essex.

“We were asked by Essex County Council to help them understand the issues around dementia so that they could make the right decisions about the services and support they offer people living in our communities.”

The Council’s Cabinet Member for Health and Adult Social Care, Cllr John Spence, said, “It is vital that we listen to people living with dementia and understand the challenges they face. We must work together to shape how communities and the wider health and social care system respond to dementia.
“Healthwatch Essex helped us to hear from people directly affected, and we hope to continue these conversations and work collaboratively to support people to live well with dementia for as long as possible.”

With the support of the Alzheimer’s Society, Essex Dementia Cares and the Peaceful Place Day Centre, Healthwatch Essex spoke with five groups of people living with dementia.

The information that was gathered from the discussions has led to the publication of the charity’s new ‘Dementia Voices’ report. Some of the recurring themes and issues that came up from speaking to the different groups included how a good experience of diagnosis set the scene for living better with dementia; how people living with dementia really appreciate the care and support that they get from their families and others; and how they want to live as independently as possible for as long as possible.

The report was launched at an event held in Chelmsford on 28th June at which three people with dementia spoke about their experiences of living with the condition.

Heather Parish from Billericay and Tony Dunhill from Basildon both talked about their concerns for what the future holds and their changing relationships with partners and family members. David Lawton from St Osyth spoke movingly about the prospect of having to explain the impact of the condition to his nine-year-old daughter.

“For me it was really worthwhile because I believe sharing experiences will help others. I certainly hope so and that those who hold the money and make the decisions about support relating to dementia can take on board what was shared by everyone at the event,” said David.
One attendee at the event remarked, “The three speakers were so special, what wonderful personalities they have and they all spoke so eloquently. I hope they realise how much they will have helped others by telling their stories.”

Read the Dementia Voices report to find out more about this project.

For more information on the work of Healthwatch Essex visit and check out the Lived Experience training course.

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