Responding to the pain experiences of people with a learning difficulty and dementia

Kerr, Diana; Cunningham, Colm; Wilkinson, Heather

doi:10.1016/s2171-9748(11)70002-2

Cited by 15 publications

(62 citation statements)

References 36 publications

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“…Staff may not recognize pain experienced by persons with ID and dementia. Waking at night because of pain may be attributed to a general characteristic of dementia and remain untreated (Kerr, Cunningham, & Wilkinson, 2006). The literature on end‐of‐life care also raises issues and suggests the need for staff training involving dying, death and bereavement, communication with palliative care services, and the involvement of individuals and family members in decision‐making (McKechnie, 2006; Service, 2002; Watchman, 2005).…”

Section: Carer Issuesmentioning

confidence: 99%

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

Courtenay

Jokinen

Strydom

2010

Policy Practice Intel Disabi

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Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997–2008 on the current knowledge on social‐psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level between the person and their carer and organizational and interorganizational supports have an impact on the quality of care provided. However, the lack of robust evidence to meet the needs of adults with ID affected by dementia means that service organizations often have to extrapolate from the evidence base of dementia care practices in the general population. The review showed that concerns over staff burden, behavioral interventions, and staff training, and applications of models of care were emerging, but were not systematically studied. Authors noted that pharmacological agents and nonpharmacological, psychosocial techniques were being used to assist carers manage behavior, but the evidence base of both nonpharmacological and pharmacological interventions that can help people with ID and dementia and their carers is insufficient because of the absence of systematic and robust studies. The authors note a need for an international research agenda that begins to address gaps in knowledge. With more adults projected to be affected by dementia, a robust evidence‐based body of literature on dementia care in people with ID can help with planning for and providing quality dementia‐capable services.

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Section: Carer Issuesmentioning

confidence: 99%

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

Courtenay

Jokinen

Strydom

2010

Policy Practice Intel Disabi

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“…People with intellectual disability and dementia experience the same age‐related health conditions as the general population such as arthritis (Doody & Bailey, ; McGuire & Kennedy, ). While many people with intellectual disability live healthier lives than previous generations, they are more likely to experience health conditions than the general population which increase the likelihood of experiencing pain, for example due to musculoskeletal problems (De Knegt & Scherder, ), gastro‐oesophageal reflux and dental/oral disease (Kerr, Cunningham, & Wilkinson, ). Gastrointestinal disorders including gastro‐oesophageal reflux and constipation are common in people with intellectual disability and can cause changes in presentation due to pain (British Pain Society, ).…”

Section: Introductionmentioning

confidence: 99%

Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Dillane¹,

Doody

2019

Journal of Clinical Nursing

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Aims and objectives To explore the current evidence of nurses caring for people with intellectual disability and dementia who experience pain. Background People with intellectual disability are ageing and are experiencing age‐related health conditions including dementia and conditions associated with pain, but at an earlier age. Addressing the needs of people with intellectual disability who develop dementia is a new challenge for nurses. Design An integrative literature review. Methods A systematic search of databases: CINAHL, MEDLINE, PsycINFO, Cochrane, EMBASE, Academic Search Complete, Scopus and Web of Science between 27 October 2017–7 November 2017. Hand searching and review of secondary references were also undertaken. Quality appraisal (Crowe Critical Appraisal Tool), thematic data analysis (Braun and Clarke, Qualitative Research in Psychology, 3, 2006, 77) and reporting using the PRISMA guidelines. Results Seven papers met the inclusion criteria, and three themes emerged from this review: nurses knowledge of ageing, dementia and pain; recognising pain in people with intellectual disability and dementia; and the role of nurse education. People with intellectual disability and dementia have difficulty communicating their pain experience compounded by pre‐existing communication difficulties. Conclusions A pain experience can present similar to behavioural and psychological symptoms of dementia, and diagnostic overshadowing often occurs whereby a pain need is misinterpreted as behavioural and psychological symptoms resulting in inappropriate treatment. Nurses need greater knowledge about the presence of pain and potential causes in people with intellectual disability and dementia, and education can be effective in addressing this knowledge deficit. Relevance to clinical practice Pain assessment tools for people with intellectual disability and dementia need to include behavioural elements, and baseline assessments are required to identify changes in presentation. Nurses need to recognise and respond to pain based on the evidence in order to deliver quality care.

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“…However, the experience of pain is compounded if an individual cannot voice their discomfort, as is frequently the case for those who are cognitively impaired or persons with intellectual disability. It is acknowledged that pain within the intellectual disability population is often not recognised or managed well (Breau, Salsman, Sarsfield Turner, & Mullan, ; Malviya et al., ), pain relief is inadequate (Kerr, Cunningham, & Wilkinson, ; McKenzie, Smith, & Purcell, ) and that chronic pain is highly prevalent due to associated physical disabilities (Baldridg & Andrasik, ; McGuire, Daly, & Smyth, ).…”

Section: Introductionmentioning

confidence: 99%

Pain and pain assessment in people with intellectual disability: Issues and challenges in practice

Doody

Bailey

2017

Brit J Learn Disabil

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Accessible summary Pain is difficult to identify when people cannot communicate. If pain is not identified, it cannot be managed and causes stress. Pain assessment is essential in order to identify pain. Pain assessment requires a combination of knowledge, health assessments and observations. Abstract BackgroundIndividuals with intellectual disability experience the same chronic diseases and conditions as the general population, but are more likely to have physical and psychological co‐morbidities, resulting in a higher risk of experiencing pain and having more frequent or severe pain. MethodThis position paper aims to highlight the importance of pain assessment for people with intellectual disability. ResultsAs people with intellectual disability live within the community and/or remain in the family home, they are accessing a wide range of healthcare services. This necessitates that nurses across all care settings are knowledgeable regarding appropriate/alternative pain assessment methods for people with intellectual disability. While many pain assessment tools are available for use with the intellectual disability population, they are often not well established or infrequently used to establish their validity. ConclusionAlthough self‐report is the gold standard in pain assessment, pain assessment for people with intellectual disability is often challenging as they may be unable to self‐report their pain due to their levels of communication or cognitive ability. Assessment requires a combination of approaches amalgamating: pain assessment, health assessment and observation of behaviours.

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Responding to the pain experiences of people with a learning difficulty and dementia

Cited by 15 publications

References 36 publications

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Pain and pain assessment in people with intellectual disability: Issues and challenges in practice

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