This story was originally featured on the NIHR CRN website.

The Minocycline in Alzheimer’s Disease Efficacy Study (MADE) is a multi-centre, randomised, controlled trial in very mild Alzheimer’s Disease. It aims to determine whether an antibiotic called Minocycline is effective in reducing the rate of cognitive decline over a 2-year period and to assess the safety and tolerability of Minocycline.

Sue took part in MADE as a study participant, this is her story.

 

Sue was diagnosed with Alzheimer’s disease (AD) last year and was referred to her local Memory Clinic at the West Suffolk Hospital (WSH) in Bury St Edmunds. Supported by husband, Phil, she attended the clinic and it was there that the couple were contacted by a member of the team working on the NIHR-funded MADE (Minocycline in Alzheimer’s disease) study.

Minocycline is an antibiotic drug that has been shown to slow down deterioration in some animal types of the condition and the MADE study team are investigating it to see if it could benefit humans too. Patients with very early AD who choose to take part in the trial are given either Minocycline or a placebo over a 2-year period. The team needs to connect with patients soon after diagnosis which is, understandably, already a challenging time when patients and their loved ones are being forced to come to terms with this life changing event.

l-r: Research Nurse, Louise McCarthy with Phil and Sue

l-r: Research Nurse, Louise McCarthy with Phil and Sue

Sue decided to find out more about taking part in the trial and it was at this point that she was contacted by Louise McCarthy, a Research Nurse who works for Norfolk and Suffolk NHS Foundation Trust based at WSH. Louise sent Sue an information pack but then made time to visit the couple in their home on a couple of occasions as well. Whilst there, she spent time listening to their concerns and answering their questions, and making sure they had all the facts, including that of the couple’s freedom to stop at any point.

Sue made the decision to go ahead with the trial and began taking a daily dose. Louise was on hand whenever the couple needed her. After approximately two months, although it is not known whether Sue had been taking the drug or placebo, she decided to stop as was experiencing what could have been side effects such as an upset stomach and headaches. She is now clear of these symptoms but is still very glad to have taken part. More than that, she and Phil felt such gratitude to Louise for her guidance and support they wrote a letter of commendation about her to the doctor leading the study.

Among other compliments, they wrote, “From the very beginning she has been so professional, polite and understanding. Everything has been explained regardless of the time needed. Nothing is too much trouble. She is a credit to you and the department in which she is employed.”

Louise was very grateful to Sue and Phil but also significantly humbled. She said, “Sue and Phil have got busy lives, but they’re still thinking of others by getting involved and making a difference, if not for themselves, then for the next generation. I think that sort of altruism really is something to be admired.”

When asked how she felt about taking part now Sue said, “I’m glad I did it”. Phil added “we can’t cure Sue but if we could find something that in 5 or 10 years’ time will help you, our children or our grandchildren, it’s worth it, isn’t it?”.

Like Sue, patients who get involved will always be absolute heroes but this story goes to show that sometimes, for a moment, a researcher can be theirs too.

 

To read more about the MADE Study, take a look at this case study from Join Dementia Research champion Wendy Mitchell.


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