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Life through a Lens

Introduction

Dementia matters to people with a learning disability. This may be because someone has a diagnosis themselves, or because a friend or a family member has a diagnosis of dementia.

Life through a lens is a participatory action research study. The team, including co-researchers with a learning disability, investigated if non-drug interventions resulted in positive changes and increased quality of life for participants with a learning disability and dementia. The research was funded by the Alzheimer’s Society.

This project page tells the story of our research and how the team worked together. Our findings and open access publications are further down this page. We are delighted that some of the study findings led to another grant application which was successful – watch this space!

Co-researchers with a learning disability have been involved from the start and have taken part in staff recruitment, research training, data collection, project advisory group. We have all shared the study findings at local, national and international events and helping to write publications and accessible findings.

You can listen to co-researchers Michael and Kate talking about the role of the project advisory group below.

You can watch co-researchers Louise and Kate talking about dementia below

What is non-drug support?

People with dementia sometimes take medication (drugs) to help with symptoms. There are other ways to support people that don’t involve medication. We want to find out if non-drug support can help people with a learning disability. This means that people may be able to take less medication. They may be able to have a better quality of life doing things that they enjoy. Social prescribing is when people are referred for non-drug support, on their own or in groups. This can be instead of medication. Social prescribing does not happen for people with a learning disability and dementia.

The non-drug supports each person with a learning disability and dementia engages with over a six-month period in the study has been personalised to them. This is based on their needs, the changing issues they have been facing as a result of dementia, and their own personal preferences and wishes. 

Non-drug supports included in the study to date are life story work, digital photo album, online reminiscence activities, a playlist for life (individualised music), environmental changes such as lighting or different flooring, aromatherapy, cookery and exercise.

 

A person reading a DVD case

Study Participant

It's like 'we'll try this drug, we'll increase that drug, we'll double the dose', but why are they not suggesting this instead?

Meet the research team

Co-researchers

Michael
Matthew
Kate
Jack
Karen

How we collected data

Photovoice

Co-researchers used a research method called Photovoice. This involves taking photographs and using their knowledge by experience of having friends with dementia. The team had training in photovoice and how to use the camera. This is why the research is called ‘Life through a Lens’.

The project used a range of other research methods to find out if non-drug supports led to positive changes for individuals. This included taking measures before, during and after the interventions, talking to staff and to participants and using an intervention log.

You download the following mp3 file and listen to co-researchers, Andrew and Kate talking about photovoice.

You can listen to co-researchers Michael and Kate talking about cycle 1 planning and interventions below.

Several cameras and notepaper on a table, in preparation for a workshop

Photovoice

Co-researchers with a learning disability have taken part in photovoice training. This is a method of data collection that captures everyday life through photographs.