Pain Assessment for Individuals with Advanced Dementia in Care Homes: A Systematic Review

Abstract

Pain is prevalent in older people, especially in those with advanced dementia who have communication impairments. Although pain is recognised to be present in this population, it is often under-assessed and ineffectively managed. The assessment of pain in advanced dementia is extremely challenging and complex, particularly in institutional settings such as care homes. This study systematically reviews the literature to examine and characterise the evidence for the use of pain assessment tools in care homes with individuals living with advanced dementia. Relevant publications were sourced from electronic bibliometric medical databases including AMED, CINAHL Plus, Medline, PsycINFO, EMBASE, TRIP Pro, Google Scholar, and HINARI. The database search was supplemented by screening citations and reference lists, in addition to a grey literature searches. The search identified 2221 studies, among which 26 were included in the review. The majority of the studies were observational, which created a rich source of data to create four major themes. The findings were informed and shaped by working with key stakeholders to develop a conceptual model that can contribute to developing evidence-based practice. This highlights the importance of a comprehensive, multi-disciplinary approach to pain assessment in this population, which is beyond the use of tools.

Analgesic medicines not administered to those with dementia in residential settings despite awareness of undertreatment of and susceptibility to severe pain

“…This study supports existing knowledge regarding the suboptimal management of pain in patients living with dementia in care homes 2–4. There was no differentiation made between residential and nursing home settings despite known variations in care provision and service availability for those diagnosed with dementia 1 5.…”

“…There was no differentiation made between residential and nursing home settings despite known variations in care provision and service availability for those diagnosed with dementia 1 5. Absence of information on healthcare workers baseline training, availability, patient ratio, skill mix and clarity on the use of pain assessment tools prohibited evaluation of key factors known to influence the management of pain 3 4…”

“…Since the COVID-19 pandemic the focus has shifted nationally towards deprescribing and the use of non-pharmacological approaches in managing chronic pain with periodic review, supported by primary care networks reviewing the needs of residents regardless of care home factors 1 4…”

Physicians’ and nurses’ experience of using the Abbey Pain Scale (APS) in people with advanced cancer: a qualitative content analysis

“…Self-reported scales are considered the most reliable means of pain assessment [4,5], but as the trajectory of cancer proceeds, many patients find it increasingly difficult to express their pain due to sedation, delirium, or imminent death [6]. Many observational scales exist for patients who can no longer selfreport [7,8], but none have been specifically developed for or evaluated for patients with cancer [3,9].…”

Efficacy of non‐pharmacological interventions to reduce pain in people with dementia: A systematic review and meta‐analysis

“…Pain assessment scales can be challenging to apply to people with dementia due to the presence of mental and linguistic barriers, such as difficulty with verbal communication or abstract comprehension (Achterberg et al, 2020). People with dementia require the use of additional evaluation strategies, such as observations of pain‐related behaviours and in‐depth pain examinations (Atee et al, 2017; Felton et al, 2021). The challenges to identifying and assessing pain among people living with dementia can leave this population vulnerable to pain (Achterberg et al, 2020).…”