The creative research project giving people with dementia a voice

Research volunteer Mollie Virgo explains how the IDEAL project's creative approach is helping to shine a light on studies into living well with dementia.

Helping people to live well with dementia is one of Alzheimer’s Society’s top priorities. But what does 'living well' actually mean? What factors influence this?

We've partnered on a ground-breaking research project called, ‘Improving the experience of Dementia and Enhancing Active Life’ (IDEAL), which is working to answer these questions.

allotment-of-time-IDEAL-projectSarah and Barrie were two of the participants involved in the creative research project

What is the IDEAL project?

The IDEAL project involves over 1,500 people with dementia and their carers, aiming to identify what helps them to live well. We're also funding a second study called IDEAL 2, with a focus on understanding the concept of quality of life and “living well”.

IDEAL 2 will continue to follow participants from IDEAL as well as including the experiences of people with rare dementia types and those from black and minority ethnic backgrounds. This will offer insight over a six year period into the factors that influence living well and quality of life. That might be loneliness, for example, or a lack of understanding of dementia within communities.


Photographs, cartoons and poems were used to capture people's experiences of dementia

Creating Chapbooks

At the beginning of 2016, people with dementia, carers and relatives took part in a project related to IDEAL called 'A life more ordinary'. The goal was to create a tangible, visual output of what it means to live well with dementia.

People affected by dementia worked with artists over a series of creative workshops and shared stories from the past and present. These stories were collected in ‘Chapbooks’, which, historically, would contain tales of popular heroes, legends and folklore. The chapbook of 'A life more ordinary' comprises a collection of photographs, cartoons and poems connected by a running theme.

IDEAL project chapbook
People with dementia collaborated with artists to bring their stories to life

The first Chapbook, called 'The Allotment of Time', was recently published. Reading it I was struck by how this light-hearted book could cause such an emotional response. The creative approach moves away from the facts of the condition focusing instead on the person behind the diagnosis. The humorous tone provides a new angle on dementia and a more positive outlook on living with the condition.

Making research personal

The project bridges the gap between the complex, scientific nature of research and the feelings and everyday experiences of people affected by dementia.

The researchers hope to reflect the key findings from the IDEAL project in a series of Chapbooks. They will also produce a research archive highlighting the key findings using extracts. These books will help bring the research findings to life, giving the project an important personal touch.

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2 comments

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I particularly like the fact that the academic (and so sometimes mysterious) world of research is being explicitly linked to everyday experiences of dementia.

A really interesting initiative.

There is help available from NHS to enable people to "live well" with dementia. Its called Continuing Healthcare , & provides a Personal Budget to pay for qualified Carers to come daily to your Home , & assist with Personal Care & Social Care . This will help enormously to live better .

Unfortunately NHS do not make it easy to qualify for this benefit as a detailed Assessment is required , & they decide the outcome behind closed doors in the local Clinical Commissioning Group.

I launched a website following the death of my Wife Pauline to help people obtain this benefit if their needs were sufficient . The Society have a link , but you can find it direct on https://continuinghealthcare.wordpress.com/

I hope everyone gets the help they need . Best wishes.

Peter Garside

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