Caregiver–provider communication about pain in persons with dementia

Abstract

Background Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient’s symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication. Methods In-depth, semi-structured interviews were conducted with family caregivers ( n = 18) and healthcare providers involved in dementia care ( n = 16). Interviews focused on three specific content areas: (1) caregivers’ roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis. Results Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication—receipt of inadequate information and interpersonal conflict about the care recipient’s pain—and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver–provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize a team-based decision-making. Conclusion Receipt of inadequate information and interpersonal conflict are key challenges to caregiver–provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.

Pain management for people with dementia: a cross-setting systematic review and meta-ethnography

“…Care workers, particularly in care homes, but also in hospital settings, reported a process that because they engage in more personal care activities such as washing and toileting, they were better able to make early, timely detection of pain. 3 , 24 , 29 , 41 , 48 , 54 , 56 , 57 This would be reported to senior colleagues. However, there is some reluctance to do so regarding carer’s perceived qualification in some instances.…”

“…Thirteen studies gathered data from a variety of healthcare professionals. This included nine studies of 325 healthcare professionals based in hospitals, 24 , 25 , 33 - 35 , 39 , 42 , 44 , 51 four studies with 364 healthcare professionals working in community services, 28 , 40 , 54 , 57 whilst collected data from 31 healthcare professionals working in either hospital or community settings. The professional roles of healthcare professionals are outlined in Table 2 .…”

“…In total, data were collected using focus groups in four studies, 34 , 35 , 40 , 44 interviews in four 25 , 39 , 51 , 54 and survey methods in four studies. 28 , 33 , 42 , 57 Combined focus group and interview methods were used by Chang et al, 37 whilst focus groups and surveys were used together by Minaya-Feire et al 24 …”

“…There was moderate certainty evidence from nine studies that familiarisation with the person, their preferences, routines and behaviours were key factors to being able to detect pain. 32 – 34 , 38 , 41 , 42 , 45 , 54 , 57 This was acknowledged in care home staff, 32 , 41 , 45 community healthcare 54 , 57 and hospital settings. 34 , 42 This familiarisation was also recognised as facilitating other causes of agitation which were not pain-related.…”

Family Involvement in Pain Management for People Living With Dementia: An Integrative Review

“…• Maintenance doses of safe medications and evaluation for physical pain should be done (Buffum & Haberfelde, 2007) • Trials with therapy and reassessment (Lichtner et al, 2016) • Reliance on pharmacological treatments and increased concerns of side effects, interactions, and polypharmacy (Bullock et al, 2020) • Treatment challenges and concerns: lack of treatment/under medication, medication side effects, fear of addiction to opioids, lack of alternatives to medications (Martin et al, 2005) • Family members can present challenges to clinicians, especially when clinicians involve them in the pain management decision-making process, such as the use of opioid analgesia, as they are fear of the medication side effects (Riffin et al, 2022)…”