“I don't think pills solve anything”: Exploring the experience of pain and pain management among community-dwelling people with dementia

Problem

Community-dwelling people with dementia are equally likely to experience painful conditions as similar aged people without dementia. However inappropriately managed pain in this group can exacerbate dementia symptoms. Clinical features of dementia such as cognitive deficits and diminished language capabilities can mean that pain, and pain management, may pose challenges to informal caregivers and primary healthcare professionals. Evidence on pain identification and management is well developed in nursing home, palliative, and acute care settings, but research in community-dwelling people with dementia is minimal. This study explored experiences of pain and pain management in community-dwelling people with dementia from the perspective of the person with dementia themselves and informal caregivers of people with dementia.

Approach

Ethical approval obtained. Participants were recruited through Join Dementia Research. Dyadic, semi-structured interviews were conducted with people with dementia and informal caregivers. The Iowa Pain Thermometer and an abridged version of the CASP-19 quality-of-life measure generated discussion and added context to interviews. Interviews were digitally-recorded and transcribed verbatim. Thematic analysis, with constant comparison was used to analyse the data.

Findings

People with dementia expressed their enduring pain, with pain being perceived as an inherent part of ageing that they “live” or “deal” with. In regard to pain assessment, whilst people with dementia expressed an ability to “self-report” their pain, caregivers highlighted inconsistencies and variability in this due to the clinical impact of dementia. To overcome these problems caregivers often monitored non-verbal cues (e.g. mood, personality changes, facial expressions, body language, and changes in bodily function) in order to disentangle the “true” pain experience.Non-pharmacological and distraction strategies were commonly mentioned by caregivers to manage pain. People with dementia and caregivers often reported a reluctance to take analgesics, questioning the efficacy of such treatments. As-needed (PRN) analgesic medication was typically prompted by the caregiver rather than initiated by the person with dementia. Some people with dementia and caregivers expressed no need for family, health, or social support for pain. However many others expressed a need for health and social support for pain, however perceived support for pain as an unmet need.

Consequences

The results highlight challenges in pain and pain management for community-dwelling people with dementia and it is important that primary care clinicians are aware of these perceptions, experiences, and challenges regarding pain and pain management. If unaware of such challenges, pain may remain unidentified and inappropriately managed for this vulnerable population, possibly contributing to/exacerbating difficult to manage behaviours.