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Case study: Learning from people living with dementia

Fiona McGhee from Lewes in East Sussex recognises the importance of dementia research and encourages people with dementia, and their carers, to take part. At the age of 80, Fiona’s mother was diagnosed with Alzheimer’s disease in 2012. Over the past three years they have both been active in various research studies.

Fiona says: “In 2016 the manager from my mother’s care home asked me if we would like to take part in a study from University College London (UCL). I agreed – after what I’d been through with my mother I would do anything to help. So this was when I first met Sharne Berwald, who now works at the Dementia Research Unit in Crowborough, and this was the first time I got involved in research.

“Sharne then put Dr Stephanie Daley from the Centre for Dementia Studies in touch with me. Stephanie was compiling a questionnaire for the C-DEMQOL project and I was able to give her some pointers from my point of view as a family relative of someone with dementia.”

The questionnaire aimed to measure the quality of life of family carers looking after people with dementia in order for healthcare professionals to evaluate their needs. Fiona continues: “Since my involvement with the C-DEMQOL project, I’m now a member of the Centre for Dementia Studies’ Dementia Consultation Group for research. This involves researchers talking to us about their research proposals to gain feedback before they apply for funding. Currently we meet up about four times a year and you have to be someone who has looked after someone with dementia, or has a diagnosis of dementia.

“Late last year I took my mother to the dentist and we had an awful experience as the staff did not know how to behave around her. So when I was asked if two student physiotherapists could talk to my mother and me as part of the Time for Dementia project I jumped at the opportunity. The study sounded very relevant as it teaches people new to the medical profession how to deal with people with dementia in a different way. I’m proud to participate because I want people to be aware of how a person with dementia acts and how they react to people around them.

“My mother is thrilled to meet the researchers who visited and she adored the two students. She loves time with people on a one-to-one basis. It was delightful to see and hear her laugh with the students and to know she was enjoying it all.

“I want people to understand dementia. I don’t want it to be a hidden subject. So many people are frightened of dementia, admitting to having it or frightened or ashamed that a family member has it. I want people to know there is help out there and being involved with research helps you feel connected to others and valuable in that you are helping others to find a cure for this awful disease.

“Research is not necessarily a clinical trial testing news drugs; the research is about you as a person. The impact of research on a person with dementia is big as it gives them a better quality of life. Also when a researcher is talking to someone with dementia it gives their carer a bit of a break. Researchers respect your privacy, your time and the privacy of your loved one with dementia. You can also stop your involvement with a research project at any point.

“If local researchers need somebody to interview for research I always put my hand up. People can learn a lot from people with dementia. I would volunteer my mother again as it is important for researchers and others to learn from her.

“There is not a cure for dementia at the moment but with enough research it will be stopped in its tracks.”