Freda and Jim participated in a research project at the Institute of Psychiatry, Psychology & Neuroscience and Freda has kindly written an account of her experience for others thinking of taking part in research.
"Five years ago (aged 66) I started to forget where I had left my car and where my friends lived. The GP referred me to the Croydon Memory Clinic and 12 months later they confirmed I had Alzheimer's. This came as a welcome relief. I had thought I had been going crazy but their diagnosis of my condition 'with a name' brought immediate freedom from the stress of not knowing what was happening to me. My husband and I ensured our friends and family were informed. This was helpful and stimulated many informative conversations.
"I was prescribed Donepezil and the support given by the Croydon Memory Clinic was brilliant. I attended courses alone and with my husband. He also attended a special six-week course just for carers. We developed a very clear understanding of the position and learned a series of actions, techniques and mnemonics to minimise difficulties. An issue which shocked both of us was the low percentage of funds devoted to the research of Alzheimer's and dementia, a condition which cripples so many lives.
"When the Croydon Clinic indicated the Institute of Psychiatry, Psychology & Neuroscience was undertaking research, we jumped at the chance. We wanted to help in any way possible and agreed to a series of home interviews, separately at three-monthly intervals over a period of two years.
"Our researcher Nicola was very sensitive and became almost a family friend. We would look forward to her visits. Each interview session took between two to three hours. My husband was interviewed first, partly about his perceptions of me and partly as an analysis of the way in which he was coping. His answers were then used to trigger questions to me together with the more standard and universal systems of testing assessment. At the end of each session Nicola calculated my MMSE scores (memory test) and brought us up-to-date with the latest research. This was reassuring.
"I am, of course, frightened about the future. I have no false hopes or illusions and intend to remain active and enjoy the remains of my intelligent life. I think the drugs are slowing down the pace of my deterioration, but I would be better able to cope if I knew I could have choices at the end of my life.
"Taking part in research was thoroughly enjoyable for both myself and my husband and I would recommend it to anyone, especially as the more research is done, the closer we are to new treatments."