Leo and his wife Pat engaged in a trial of an experimental treatment for Alzheimer’s disease at the NIHR/Wellcome Trust Manchester Clinical Research Facility (CRF).
I have been caring for Pat since she was diagnosed with Alzheimer’s disease in 2010 and we were both very interested in taking part in research, so we asked our consultant to refer us to any trials we were eligible for.
Nurses came to our home and explained in detail the study and how we would be involved. It was fairly and very delicately done so we felt it was completely voluntary.
We came to look forward to our visits to the CRF. The doctors and nurses were very friendly and caring and took the time to listen to us, offering help and advice where they could. I was impressed particularly with their extensive knowledge of how Alzheimer’s affects a couple’s daily life, and it was comforting to deal with people who understood our situation and had time to discuss it with us and its impact, including on me as a carer.
Overall, the experience was an enjoyable one, which may seem a strange thing to say about a medical project, but that’s down to the people and the atmosphere. We were almost sad in a way when the trial came to an end, but we came away feeling we’d done something worthwhile and hopefully, in some small way, we had contributed to what may someday halt the progression of – or even prevent – Alzheimer’s disease.
Watch: Leo, Pat and other research participants talk about their research experience
Participants in research trials and family members from Capsool on Vimeo.
Video originally produced for Live Well Dementia.