Taking Part In Research: A Carers Perspective

Taking Part In Research: A Carers Perspective

Taking Part In Research: A Carers Perspective

In the UK, 1 in every 10 people are carers – that’s around 7 million of us who provide regular or round the clock care for loved ones and family members.

This army is largely unpaid and receives little to no respite, with a demographic comprising of carers both young and old, saving the UK economy £60bn a year. Being a carer for someone you love can really take its toll mentally, as the impacts of the condition extend beyond the sufferer and are naturally experienced by those around them. The responsibility of caring tends to disproportionately impact women, who can expect to take on this role more than a decade earlier than men.

According to the Alzheimer’s society, there are around 700,000 people in the UK acting as primary carers for people with dementia, and their input in research is incredibly important. Most memory studies we run here at St Pancras Clinical Research will require what is called a “study partner”. This is someone who spends at least 7 hours a week with the person who is taking part in the study, and there are several reasons this is required and why the presence of carers and study partners can have an overwhelmingly positive effect on the participant during the study process.

Firstly, due to the nature of Alzheimer’s disease and how it changes the way our brains’ process risk, we cannot expect all of our Alzheimer’s patients to safely make their way to the clinic on their own, particularly if they are in the advanced stages of the disease and are travelling a long distance. The presence of a study partner helps greatly reduce any risk of harm, and provides familiarity, support and reassurance to our vulnerable patients who need this type of consistency during their time with us.

Why might you need a study partner?

A study partner is just as important away from the clinic. We need someone to be able to monitor this person cognition, and provide our researchers with valuable information that is only accessible to this person as their  caregiver. The need for the input of a study partner increases as memory loss worsens, as the study partner becomes essential to the collection of accurate data which the person with Alzheimer’s may be unable to relay to the standard required by our researchers.

The emotional support and stress relief provided by the study partner has been shown to be hugely beneficial for the general well being of a person on an Alzheimer’s trial. Deciding to take part in research is quite a big step, and we know that there will be some days that are easier than others. As a study partner, there are some things you will be asked to do that will help us with our assessments and understanding of the person with dementia in your care.

For example, you will be asked to accompany the Alzheimer’s study participant to several, if not all of their appointments at the clinic.  You will also be asked to observe and track any change in their behaviour at home to help support the clinic team’s regular assessments.

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