Recognising, assessing & treating pain in dementia: the experiences of caregivers

Background & Aim: Pain presents a major challenge for people with dementia (PwD)and their caregivers. This thesis aimed to investigate the experiences of informal caregivers (IFCs) and care home(CH) staff supporting PwD, exploring how they recognise, assess, and treat pain among this population. Method: This thesis is composed of two empirical studies. Study 1undertook 18 interviews, exploring IFCs and CH staffs’ experiences relating to pain among PwD. Study 2implemented a mixed methods survey, expanding findings from Study 1, recruiting 115 IFCs, CH staff and nursing students. The survey consisted of open-ended questions exploring pain recognition and pain practices, and a quantitative component in the form of The Pain Knowledge and Beliefs Questionnaire (PKBQ) (Zwakhalen et al., 2007). Findings: Qualitative data from Study 1 and 2 generated four main themes: Deciphering Dementia; Relieving Suffering; Autonomy vs. Dependence; and The Pain of Caring. Physical pain and its treatment were not a primary concern for caregivers. It was overshadowed by competing needs, normalised, and complicated by dementia-related changes, noncompliance, and uncertainty about pain medication. Pain was recognised and assessed informally, through individualised approaches, dyadic relationships, and interpretation of bodily narratives. A reliance on simple pain medication and non-drug approaches was described. Caregivers’ roles, and responsibilities for pain identification and treatment were delineated by a hierarchy.

Name dc:type.qualificationname

phd

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

University of Greenwich

Year dc:date.issued

2021

Author dc:creator

• Chandler, Rebecca

Advisors dc:contributor.advisor

• Robinson, Oliver
• Corney, Roslyn

• RA Public aspects of medicine

Language dc:language

en