Brian, aged 83 a retired English electric engineer, married his wife Sue in 1962; they have been happily married for 58 years. They met when they were living in the same town. Although they vaguely knew each other, it was not until Sue became single that they started their relationship and, as they say, the rest is history. Sue worked as a shop assistant, when Brian moved up to Lancashire to work, she retrained as a secretary to the director of PE at a local university. We spoke to Sue and Brian about their experience living with dementia and their involvement in our recent dementia clinical study.
Prior to Sue being diagnosed what was your knowledge of dementia?
I will be honest I knew very little about dementia until Sue was diagnosed with it following a minor stroke. Now I am aware dementia is not a natural part of ageing and feel I have a better understanding. When she had been diagnosed with dementia, we spoke about it at a garden party with some of our acquaintances and someone overheard. The man mentioned his wife had struggled with dementia for many years and came round the following day to our home with some pamphlets for MAC Clinical Research.
How has the diagnosis impacted day to day life?
Day to day living can occasionally be challenging, but with everything going on with COVID-19, whose daily living has not been completely changed?! We would both certainly like to be getting out much more. I realise behaviors and things may get more difficult in later stages of dementia; thankfully, however, Sue still has a lot of independence.
Why did you decide you wanted to take part in a clinical research study?
You have got to be optimistic. We both know there are not any cures available for dementia. This was one of the main reasons we choose to get involved with research at MAC. It was a sensible way to take back control, actively getting involved in helping refine future treatments for the next generation. We have kept in regular touch with Dr Penny Foulds regarding the study, and future studies. It is fantastic to hear there is very promising research in the pipeline. MAC Clinical have been first class and helped us maintain our hopeful outlook.
How do you feel about your experience with MAC?
Fantastic. Everything was explained carefully, step-by-step. At all stages we were informed of procedures and the reasons why they were in place. There was never any doubt about what was happening, and nothing was rushed. The staff are very friendly, they made her feel so comfortable and any queries they were more than happy to help.