DEMENTIA DIARIES
Steve Milton - Director.
National Lottery Community Fund.
United Kingdom.
Program Description
“We wanted people with dementia to believe they had a right to be heard and to expect the same opportunities to live well as others.”
“One of our first projects was to make films with people with dementia. We originally wanted people with dementia to present a series of videos about dementia as way of challenging stereotypes about what they were capable of doing. …but people told us they were frankly bored with talking about dementia and wanted instead to make films about things they find more interesting.”
“The thoughts and experiences shared here chart the frustrations and opportunities that arise from living with the many different forms of dementia that we have between us. They are shared with you in the hope that our honesty will help to inform the way you engage with those living with the condition – as friends, family, service providers and decision-makers. These are our diaries.”
-dementiadiaries.org
People with Dementia record their experiences, thoughts, and musings in diaries through audio or video recordings directly from their smart phone and submit them to Innovations in Dementia volunteers to be transcribed and published on their website.
Recordings by those with Dementia cover topics such as:
Having a Voice
Policies and Rights
Poetry
Nature
Daily Challenges Living with Dementia
Diagnosis and Dementia
Family and Friends
Health and Social Care
Dealing with Loss
Public Perceptions
Memories
Diaries are meant to inspire and inform people affected by dementia as well as communities and organizations.
The program aims to reframe the way people think about people with dementia by promoting a more realistic view demonstrating that a Dementia diagnosis does not have to be life ending. The project hopes to encourage discussion around the wide range of experiences of people with dementia, to dispel dementia myths and provide a shared space of support for those with dementia, their caregivers and loved ones.
Innovations in Dementia provides training and consultancy, conducts Dementia related research and initiates innovative projects in partnership with universities, public bodies or charitable funders.
Diaries are used publicly to increase awareness and by researchers looking for insight into the lived experience of dementia.
Innovations in Dementia is a part of One Dementia Voice a collaboration of organizations driving change in dementia support in the UK with the goal of promoting the rights of people living with dementia. The collaboration has produced a publication entitled ‘The Dementia and Hope Booklet’ with the aim of driving change in how dementia is seen and supported by decision makers. The booklet initiates the conversation that “We must focus not only on the medical aspects of dementia, but also on the many other barriers which disable those affected. We must address these societal and environmental barriers proactively, thinking more about rights, citizenship, inclusion and equality.”
One Dementia Voice includes the following organizations:
Alzheimer’s Research UK
Alzheimer’s Society
Dementia UK
Innovations in Dementia
John’s Campaign
Lewy Body Society
Rare Dementia Support
Together in Dementia Everyday (tide)
Young Dementia Network
source:dementiadiaries.org
Dementia Assistance and Activities Programs
Dementia Films
WATCH VIDEO ON DEMENTIA DIARIES |
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WATCH VIDEO ON HOW TO RECORD A DIARY SUBMISSION |
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