Volunteer stories: Andy and Tish

Andy's experience

When I was diagnosed in Feb 2020 with mild cognitive impairment due to Alzheimer's disease, I was asked if I would like to join a research study programme, with my wife as my study partner. I agreed as I felt this was a great opportunity to contribute to the work being done on increasing our understanding of brain activity in the early stages of Alzheimer's disease.  

In early March, Jemma Pitt from the NTAD study team phoned for an initial telephone screening, during which she asked various safety questions (about medication, recent surgeries and so on) just to make sure I was fully eligible to participate.

Due to the COVID-19 pandemic our first physical meeting was delayed until November. I arrived for this meeting at the Warneford hospital in Oxford feeling apprehensive, but Jemma quickly put me at ease, explaining in detail what would take place at each stage of the study. This meeting included a physical examination, a blood sample, and various memory and cognitive tests.

Over the next three visits, I underwent various scans including a PET scan, a MEG scan, an MRI scan, and further memory and cognitive tests. Most of these took place at the Oxford Centre for Human Brain Activity on the Warneford site, and the PET scan at the nearby Churchill hospital in Oxford. 

Jemma explained travel and parking arrangements, so everything was easy and straightforward, with all costs reimbursed.

The PET scan involved no personal interaction and I nearly fell asleep during the 45 minutes it took! I thought the MEG scan looked like Frankenstein's hairdryer, but it was a fun experience – a bit like semi-reclining on a beach lounger whilst playing a computer game! The preparation took a long time and involved about 70 electrodes being placed on a 'swimming cap' I wore. There was no discomfort involved and the whole atmosphere was positive, informative and friendly. The last scan was the MRI, which was straightforward and didn't take long. My final visit involved cognitive assessments (with frequent breaks) such as games, memory tasks and so on.

Although the whole process was delayed by the pandemic, Jemma kept in frequent contact to reassure and update us, making us feel fully involved. Whilst living with a challenging condition, the experience of taking part in this programme has been very positive.

Tish's experience

It has been interesting to be Andy's study partner for the NTAD study. Jemma has been really helpful, reassuring and informative throughout, making us both feel welcome, relaxed and fully involved.

A highlight for me was being able to see the whole process of the MEG prep and scanning – fascinating! Especially good was Andy's interest and enjoyment of the process, which he found fun.

The upset due to the pandemic will have been far more disruptive to the NTAD team than to us, yet we were kept in the loop regularly – I take my hat off to this professional and friendly team, with a special mention to Jemma who was fantastic throughout.

It is wonderful that funding was made available for this study and I hope it proves effective and useful, so specific help may become available for those living with this condition in future.