UCL Queen Square Institute of Neurology


What’s that study? Uncertainty and Caregiving

1 November 2018

This article has been reproduced from Join Dementia Research.

We caught up with Alan Galvin, Chief Investigator for the ‘Uncertainty and Caregiving Study: Intolerance of Uncertainty and Strain in the Caregivers of People with Dementia’.

What are the main aims of this study?

The majority of care for people with dementia is provided by informal family caregivers. While experience of caring can be positive and rewarding, it can also be very stressful.

This project aims to explore why some family members might be more prone to stress. It will look particularly at how reactions to uncertain events might result in higher levels of stress.

What does the study involve for a participant?

Participants will be asked to complete an online survey. This survey will ask about:

  • their caregiving duties (if any)
  • their relative’s symptoms and disabilities
  • their mood, stress, and health
  • their reactions and attitudes to uncertain events
  • how their caregiving duties might interfere with other activities.

The survey takes 20-30 minutes to complete.

How long is the study for?

Participation is open until February 2019.

What do you hope the outcomes of the study will be?

It is hoped that this research will help to improve understanding of caregiver wellbeing. This data can then be used to inform further research and to support relatives’ health and wellbeing.

Where is the study based?

The study is based at Newcastle University and NHS services in Cumbria and Northumberland Tyne and Wear, but we are recruiting throughout England and Wales.

Interested participants can find out more and take part by visiting the Newcastle University School of Psychology website.

Who can take part?

We’re looking for family members who provide care for a person with dementia who lives in the community. Unfortunately for this research project we cannot include relatives who care for somebody who resides in a long term residential care facility.