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Improving the understanding of how pain affects people with dementia

Pain is one of the most common symptoms that people with dementia experience. However, often it is poorly recognised and undertreated in dementia. The main reason for this is that, as dementia progresses, the person’s ability to communicate their needs becomes more difficult.

It is essential then that we improve the understanding of how pain affects and changes the behaviour of people living with dementia and according to Philip Daffas, CEO of medtech company PainCheck it must form part of the education available to healthcare professionals and family members.

Speaking on World Alzheimer’s Day (September 21), which this year focuses on the ‘power of knowledge’ surrounding dementia and how it affects behaviour and memory, Philip Daffas, CEO of medtech company PainCheck said pain tops the list of physical reasons for behavioural changes in people living with dementia, but it is often poorly recognised and undertreated because of cognitive and communication challenges.

“This leads to behavioural and psychological issues, unnecessary prescribing of antipsychotics, and decreased quality of life. Effective assessment and management of pain is crucial to better support high-quality care,” he said.

“With the global population of people living with dementia set to triple by 2050, everyone, especially the social care workforce, urgently needs support and information about the signs and impact of pain. This also includes how to identify and manage it, to enhance quality of life for people living with dementia and improve the understanding of their carers and loved ones.”

Knowledge is power when it comes to pain assessment

Daffas said more needs to be done to educate the thousands of people touched by Alzheimer’s Disease and other forms of dementia:

“Pain causes significant distress and discomfort for everyone, and for people living with dementia, untreated pain is a significant problem that affects their quality of life and behaviour as they are very often unable to communicate their pain. It is a daily challenge for carers and healthcare professionals to assess pain in non-communicative individuals,” he explained.

“Knowledge is power when it comes to pain assessment; and the use of technology to generate and collect meaningful data holds the key to addressing the shortfalls in pain assessment and helps stakeholders to better understand the individual needs of each person living with dementia.”

Daffas believes ensuring those living with dementia and potentially in pain are effectively assessed is critical.

Why do people with dementia typically receive poor pain relief

There are a number of reasons why people with dementia receive poor pain relief. The most obvious is that the person with dementia may lose the ability to tell us they are in pain. Additionally, carers and care staff often do not recognise when a person is in pain or do not know how to help. People may think that some behaviours are due to ‘the dementia’ rather than to pain. For example, calling out for help repeatedly. Some believe that people with dementia do not experience pain or that because their memory is so poor, they forget the experience.

Abbey Pain Tool

There are a number of different resources available to help care staff establish whether a person with dementia is in pain, especially if the person cannot tell you in words. One example is the Abbey Pain Tool . The tool asks us to look for other ways in which the person may be letting us know they are in pain, perhaps through screwing up their face or rocking back and forth.

The Abbey Pain Tool can be used by care staff and suggests six possible signs of pain in a person with dementia.

Summary

Pain causes significant distress and discomfort for people living with dementia, and untreated pain presents a significant problem that affects their quality of life and behaviour, as they are very often unable to communicate their pain.

Effective assessment and management of pain is crucial if people are to receive pain free quality care. We need to gain more knowledge in understanding when people are in pain and the Abbey Pain Tool can support staff to identify issues of pain. However, we need research to harness the use of technology and investment in staff training if we are to improve the means of staff to identify when a person in pain and provide the necessary support to alleviate it.

Albert Cook BA, MA & Fellow Charted Quality Institute Managing Director Bettal Quality Consultancy

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