Pain in Hospice Patients With Dementia

Abstract

Introduction At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia. Methods We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention. Results The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering. Discussion Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.

Factors influencing palliative care in advanced dementia: a systematic review

“…Data were mostly derived from care homes, hospitals, hospice care facilities, Specialists PC service, general practices and residential care homes (See supplementary file online). Out of all the studies, 29 derived data from healthcare professionals/providers [30-38, 40-53, 55-57, 59, 60, 62], 11 from managers/directors of care facilities [34-36, 43, 44, 46, 47, 52, 57, 60, 61], nine studies from carers/caregivers [29,38,42,45,54,[56][57][58][59], one study from the patient's perspective [54] and seven focused on the commissioner's and policy expert's perspectives [35,36,39,43,44,46,56]. See also barriers to provision of PC from different stakeholders' perspectives in the online supplementary file for further details.…”

“…Out of the 34 studies, 24 studies recognised PC as a management step in the care of advanced dementia [31,33,34,[36][37][38][40][41][42][43][44][45][46][47][49][50][51]56,57,[59][60][61][62], whereas 7 studies rejected PC as a management step [29,30,32,35,[52][53][54][55]] and 3 of them did not discuss it in their research [39,48,58].…”

“…Two studies specifically examined the barriers and the facilitators of pain assessment and management in advanced dementia. The most commonly reported challenges in these two studies are inability to diagnose pain and uncertainty about pain aetiology due to communication difficulties with the patients [37,58]. Other barriers included: lack of guidance and support, complex prescribing approaches and Adverse Drug Events (ADEs) [37,58].…”

“…The most commonly reported challenges in these two studies are inability to diagnose pain and uncertainty about pain aetiology due to communication difficulties with the patients [37,58]. Other barriers included: lack of guidance and support, complex prescribing approaches and Adverse Drug Events (ADEs) [37,58]. Moreover, administration of medication in people with advance dementia posed several dilemmas, which are associated with refusal to take medication, dysphagia, poor gut absorption, nausea and vomiting and impaired consciousness [37,58].…”

“…Other barriers included: lack of guidance and support, complex prescribing approaches and Adverse Drug Events (ADEs) [37,58]. Moreover, administration of medication in people with advance dementia posed several dilemmas, which are associated with refusal to take medication, dysphagia, poor gut absorption, nausea and vomiting and impaired consciousness [37,58]. Additionally, one of the two studies mentioned the lack of training in specific areas like distinguishing between pain and nonpain BSPD and managing pain in complex patients [37].…”