Identifying and treating pain in people living with dementia

This information resource was developed to raise awareness of the importance of identifying and managing pain in people living with dementia.

It is intended to provide access to publicly available information and training resources related to the identification, assessment and treatment of pain in people with dementia. The content of all listed resources and information sources have been reviewed by Dementia Training Australia.

Disclaimer

Whilst Dementia Training Australia has taken all reasonable steps to ensure the veracity of the information contained in the resources and information listed in this document it does not accept responsibility for the content of any listed resource.

Background

Pain is common to all; everyone will experience pain over their lifetime. Yet pain is an intensely personal experience unable to be shared with others. Each individual reacts to, responds to and copes with pain differently but all rely on the ability to communicate they have pain and to describe its location, duration, type and intensity when seeking treatment.

It is now widely accepted that the pathological changes in the brain caused by dementia do not alter a person’s ability to feel pain (Guerriero et al,) meaning people living with dementia feel pain in the same way those without dementia do (McAuliffe, Brown & Fetherstonhaugh, 2012). However what does change is the person’s ability to control their responses to pain and to communicate being in pain to others (Ballard et al, 2011). People with dementia therefore frequently respond to and express pain through non-verbal body language or changed behaviours (Pieper et al., 2013). This leads to pain in people with dementia being under-recognised, under-reported and under-treated (Peisah, Weaver, Wong & Strukovski, 2014; Guerriero et al, 2016)

Health professionals and aged care workers have a responsibility to ensure those in their care are as pain free as possible (Aged Care Quality Agency) and this is no less so for people with dementia. Where the person with dementia is unable to self-report pain, the recognised gold-standard assessment method (Guerriero et al, 2016), the onus falls on the carer to identify the presence of pain. Doing so can be complex and difficult, requiring knowledge and skill.

This information resource provides summaries of, and links users to, a number of information and training resources which can be used by individuals seeking to increase their knowledge or to inform staff education programs.

Using this Document

Dementia Training Australia has collated this list of resources to provide ready access to publically available content. All listed resources have been reviewed by Dementia Training Australia and internet links were correct at the time of publication.

Organisation Title Brief Description
Websites
Australian Pain Society Australian Pain Society The website provides access to information and resources relating to pain and pain management.

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General Resources
National Council for Palliative Care How would I know? What can I do? This booklet provides information on how to help someone with dementia who is in pain or distress.

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Pete Moore The Pain Toolkit Designed to assist people self-manage pain this toolkit also provides useful information and resources for health professionals.

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Irish Hospice Foundation. Palliative Care for the Person with Dementia Guidance Document 5: Pain Assessment and Management. This guidance document provides information regarding the assessment and management of pain in people with dementia.

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Care Search-palliative care knowledge network Pain Key messages regarding pain

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Royal College of General Practitioners: Australian Family Physician Pain management in residential aged care facilities. This article provides general information regarding pain management in residential care facilities

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Hartford Institute for Geriatric Nursing Assessing Pain in Older Adults with Dementia. This best practice information sheet provides an overview of the PAINAD assessment tool.

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Guidelines
The Australian Pain Society Pain in Residential Aged Care Facilities Management Strategies Provides guidelines for the assessment and treatment of pain in residential aged care facilities.

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Royal College of Physicians UK The assessment of pain in older people: National Guidelines Provides guidelines for the assessment of pain in older people.
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Australian and New Zealand Society for Geriatric Medicine Position Statement No. 21: Pain in Older People Provides a summary of key points in regards to pain in older people.
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New South Wales Health Pain Management Decision Making Framework for nurses and care staff caring for people with advanced dementia. Provides a decision making algorithm and guidelines for the management of pain in people with advanced dementia.

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Fact Sheets
Dementia Australia Pain This Help Sheet discusses ways to recognise if a person with dementia is in pain and how to treat pain quickly and effectively

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North West Dementia Centre, University of Manchester Pain in dementia This fact sheet provides succinct information about identifying and managing pain in people with dementia.

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Presentation Slides
Dementia Collaborative Research Centres Translating what we know about pain recognition and management in people living with dementia Provides an overview of pain assessment and management in people with dementia and lists further resources.

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Videos
King’s College London Assessment and management of pain in dementia Recorded lecture

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Implementation Support Resources
United States Veterans Affairs Health Services Research & Development Service 0 – No pain A series of 7 videos that can be used for improving pain assessment skills for persons with dementia

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Curtin UniversityAustralian Pain Society The PMG Kit for Aged Care: An implementation kit to accompany The Australian Pain Society’s Pain in Residential Aged Care Facilities: Management Strategies This toolkit is designed to be used together with the Australian Pain Society’s Pain in Residential Aged Care Facilities: Management Strategies Guidelines (PMG) to assist residential aged care provider to better identify and treat residents’ pain.

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University of Queensland The palliative approach toolkit Module 3 This toolkit, designed to assist residential aged care facilities to implement a comprehensive, evidence-based palliative approach of care for residents includes information relating to pain management.

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Australian Centre for Evidence Based Aged Care Pain in older adults assessment survey (POAKS) The 24-item POAKS was developed to measure the knowledge of nursing and care staff about the experience, assessment and management of pain in older people (including people with dementia) for use in the residential aged care setting. Download questionnaire and notes.

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Citation
Open Access Publications
Guerriero, F., Sgarlata, C., Maurizi, N., Francis, M., Rollone1, M., Carbone, M. Rondanelli, M., Perna1, S., Ricevuti, G. (2016) Pain management in dementia: so far, not so good. Journal of Gerontology and Geriatrics 64: 31-39.

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Husebo, B.S., Achterberg, W., Flo, E. (2016) Identifying and Managing Pain in People with Alzheimer’s Disease and Other Types of Dementia: A Systematic Review. CNS Drugs 30: 481.

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Peisah, C., Weaver, J., Wong, L., Strukovski, JA. (2014). Silent and suffering: a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities. Clinical Interventions in Aging 9: 1767–1774.

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Courses/Further Study
University of Sydney

Master of Science in Medicine (Pain Management)

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Australian College of Nursing

Pain management

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References

Aged Care Quality Agency. Accessed March 2017 from https://www.aacqa.gov.au/providers/residential-aged-care/resources/brocah0011accreditationstandardsfactsheetenglishv14.1.pdf

Ballard C, Corbett A, Jones EL. 2011. Dementia: challenges and promising developments. Lancet Neurology 10: 7–9.

Guerriero, F., Sgarlata, C., Maurizi, N., Francis, M., Rollone1, M., Carbone, M. Rondanelli, M., Perna1, S., Ricevuti, G. (2016) Pain management in dementia: so far, not so good. Journal of Gerontology and Geriatrics 64: 31-39

McAuliffe, L., Brown, D., Fetherstonhaugh, D. (2012) Pain and dementia: an overview of the literature. International Journal of Older People Nursing. 7, 3, 219-226

Peisah, C., Weaver, J., Wong, L., Strukovski, JA. (2014). Silent and suffering: a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities. Clinical Interventions in Aging 9: 1767–1774

Pieper, M.J.C., van Dalen-Kok, A. H., Francke, A.L., van der Steen, J.T., Scherder, E.J.A., Husebø, B.S., Wilco P. Achterberg, W.P. (2013). Ageing Research Reviews. 12 1042– 1055

Margaret Winbolt

Senior Research Fellow Australian Centre for Evidence-Based Aged Care, La Trobe University

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