Coping with uncertainty as a carer of a family member with dementia

• Research type

  Research Study

• Full title

  ‘I don’t know what to expect or when?’ Coping with uncertainty as a caregiver of a family member living with dementia.

• IRAS ID

  291651

• Contact name

  Claire Cadger

• Contact email

  c.cadger2@newcastle.ac.uk

• Sponsor organisation

  Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust

• Duration of Study in the UK

  1 years, 3 months, 16 days

• Research summary

  Research Summary

  Background
  The number of people living with dementia in the UK is expected to rise from 850,000 to 1.6 million by 2040 and unpaid informal dementia carers save the UK economy £13.9 billion per year (Alzheimer’s Society, 2020). Caring for a relative with dementia can be extremely stressful and informal carers can struggle to access support. Uncertainty is common throughout the dementia trajectory with recent preliminary research indicating that perceived uncertainty (PU) and intolerance of uncertainty (IU) are important in predicting caregiver burden and distress (Opit, 2020).

  Aim
  The objective of this study is to develop and test a focused psychological intervention targeting uncertainty (PU and IU) to determine its effectiveness with informal dementia caregivers.

  Method
  We plan to undertake a single case experimental design study. Consenting participants will complete a baseline phase prior to starting the uncertainty intervention based on a new model of uncertainty distress (Freeston et al., 2020). Following completion of the intervention, participants will then repeat a baseline monitoring phase to determine any treatment effects, prior to being reviewed.

  Participants
  Participants will be self-identifying primary informal caregivers of a family member diagnosed with dementia. Participants will report a level of psychological distress related to their carer role. The study aims to recruit a maximum of six participants.

  Recruitment
  Various services have been identified to facilitate recruitment by distributing information to caregivers, inviting them to contact the research group, if they are potentially interested. These include local NHS older adult services and local dementia carer support groups that are sometimes associated with NHS services. This ethics application will cover carers where NHS services provide information about the study to potential participants.

  Summary of Results

  Study Title: ‘I don’t know what to expect or when?’ Coping with uncertainty as a caregiver of a family member living with dementia.

  Most care for people with dementia is provided by family caregivers. The experience of caring can be rewarding but it can also be very stressful.

  Research has shown that uncertainty is common in the experience of caring for a loved one with dementia. A research study found that the amount of uncertainty that people experience and intolerance of uncertainty (how uncomfortable or distressing this uncertainty is) could be two key influences which place dementia caregivers at greater risk of experiencing psychological distress.

  We piloted an uncertainty focused, individually delivered psychological intervention with five participants. Participants cared for a parent or spouse living with dementia and were experiencing some stress or strain within their caring role. They kept a diary during the study rating each day how they felt. We looked at how their personally defined difficulties changed over the course of therapy. Three participants completed all study phases.

  Combined results (including all participants) found that the new uncertainty distress intervention significantly reduced individual diary measures of:

  • Intolerance of uncertainty
  • Unhelpful uncertainty reducing behaviours
  • Distress
  • Adjustment difficulties

  The intervention, which was delivered online, was also rated positively by participants.

  The findings suggest that an intervention to target uncertainty could show promise in reducing distress when caring for a loved one with dementia. Further research is to be undertaken testing this intervention and to build its evidence base. In the long term, the hope is that services will be better able to support caregivers with uncertainty within caregiving.

• REC name

  North East - Tyne & Wear South Research Ethics Committee

• REC reference

  21/NE/0088

• Date of REC Opinion

  10 Jun 2021

• REC opinion

  Further Information Favourable Opinion