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 are investigating if non-drug interventions result in positive changes in behaviour associated with dementia in people with a learning disability.
This project page tells the story of our research – what we are doing, how we did it and what we found. Our work doesn’t finish until 2020 so please keep coming back for updates. The research is funded by the Alzheimer’s Society.
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.
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?
Louise, Jack, Matthew and Andrew are using 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 uses a range of other research methods to find out if non-drug supports lead to positive changes for individuals. This includes taking measures before, during and after the interventions, talking to staff and to participants and using an intervention log.
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.
Some of the non-drug supports we use are talked about in the book Jenny’s Diary. Before we could even start to see if they worked, we faced some barriers.
Two of the barriers were:
A lot of people with a learning disability and dementia don’t have internet access. This means some non-drug supports cant be used.
People with a learning disability and dementia were taking between 3-10 different medicines each. Sometimes staff thought changes in behaviour were because of dementia. However, the changes might have been because of the side effect of the medicines. We asked some participants to have a medication review.
The seven participants in cycle 1 had a recent diagnosis of dementia and were able to decide their own interventions over the six-month period. When findings are published we will add a link here with an easy read version.