Intolerance of uncertainty and caregiver strain in dementia care
Research type
Research Study
Full title
Intolerance of uncertainty and strain in caregivers of people with dementia.
IRAS ID
254699
Contact name
Rachel Opit
Contact email
Sponsor organisation
Cumbria Partnership NHS Foundation Trust
Duration of Study in the UK
1 years, 8 months, 25 days
Research summary
This study aims to investigate the role that a psychological characteristic called “intolerance of uncertainty” might have on the amount of strain experienced by informal caregivers of people with dementia. The burden which often results from caregiving is associated with numerous negative mental and physical health outcomes, and also worse caregiving outcomes, including breakdown of care and abuse. Therefore, providing more effective support to informal carers could improve their own and the person with dementia’s quality of life, as well as delivering possible economic benefits in delaying the need for placement in a formal care facility.
Many factors are likely to influence perceived burden and mental health in dementia caregiving, yet research in this area is currently relatively sparse. However, caregiver characteristics appear to be relatively more important than the objective care needs of the individual with dementia. One potentially important carer characteristic is their ability to tolerate uncertainty. Intolerance of uncertainty is a psychological characteristic associated with negative beliefs about uncertainty. It is linked to multiple mental health problems and is emerging as an influential factor on carer wellbeing in relation to other chronic conditions, such as autism. However, it has not before been investigated in carers of people with dementia, despite this being an experience full of uncertainty.
This study aims to find out more about experiences of uncertainty throughout the caregiving journey. Firstly through focus groups with caregivers and secondly, through a survey asking about attitudes and responses to uncertainty, and other relevant aspects of health and wellbeing, accessible both online and via post. Participants will be informal caregivers of people with dementia, contacted predominantly through NHS services. The aim is to recruit a minimum of 129 participants for the survey (8 for the focus groups), allowing for statistical analysis to accurately assess the relationship between uncertainty and strain.
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
19/WM/0147
Date of REC Opinion
3 Jun 2019
REC opinion
Further Information Favourable Opinion