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

Abstract

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.

Keywords: dementia; education; integrative review; intellectual disability; pain.