Analysis: managing pain for patients living with dementia remains a challenge for healthcare professionals

By Deirdre Harkin, Vivien Coates and Donna Brown, Ulster University

Everyone at some time in their life experiences pain. It is a very personal experience that we talk to family, friends and healthcare professionals about. However, what happens when we are unable to explain our pain? How can pain be managed then? Every person has a fundamental human right to the treatment of pain, but managing pain for patients living with dementia in acute care remains a challenge for healthcare professionals.

Every three seconds, someone in the world develops dementia. Globally, it is estimated that over 50 million people are living with dementia and these figures are estimated to increase by 10 million per year. Dementia is the name used to describe the symptoms that a person has when their brain has been damaged by certain types of diseases or conditions.

Many different types of disease and conditions cause dementia, but the most common are Alzheimer's and Vascular dementia. As the disease progresses, the person will develop problems with their memory and they will have difficulties communicating. Eventually, it will affect the person’s ability to carry out their everyday tasks.  Yet, the person with dementia does not lose the ability to feel pain, although they may lose the ability to verbally communicate it to others.

From RTÉ Radio 1, Let's Talk Dementia presented by Fionnuala Sweeney looks at every aspect of dementia, from diagnosis, to carers, to end of life care

Untreated pain comes with an emotional cost to the person with pain and dementia and their families and loved ones. There is also a cost to the healthcare provider as persons with dementia tend to stay longer in hospital and have poorer outcomes than those who do not have dementia. This is compounded by research showing us that the pain management of patients with dementia is frequently inadequate, or their pain can go untreated as they journey from the emergency department to the acute ward setting.  

When the person with dementia attends the emergency department, it is usually as a result of them not feeling well or as a result of an injury. Typically, it is acute pain that alerts the person or their carer to seek help. Pain can help assist healthcare professionals to identify what is wrong with patients, but they often find it difficult to understand and manage pain for the patient living with dementia. When they have lost the ability to communicate verbally, they may use behavioural signs to show that they are in pain. These non-verbal signs of pain may include agitation, guarding part of their body, shouting out, becoming withdrawn, looking frightened and crying etc.

Although all these behaviours may be caused by something other than pain, it is important to rule pain out as the primary cause. This is because the signs and symptoms of pain may be misinterpreted by others as symptoms of dementia or aggression. As a consequence, the person with dementia is at risk of having their pain untreated and deteriorating in their condition which can cause a spiral of adverse effects.

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There is a need for the person living with dementia to have their pain managed well when they are in hospital. To improve this pain management, research is required to examine the barriers and enablers to good pain management.  There is a need for all our healthcare staff to be informed in both dementia and pain management to recognise signs of pain in this group of patients within acute care.

Our research study was designed to examine how pain management can be improved for the person living with dementia as they progress through the acute care settings, from admission to discharge. The aim was achieved through working closely with patients, families and healthcare staff using a participatory action research approach.  

We began by looking at the research already available and carrying out an audit in the emergency department to record in detail the pain management of two patients as they progressed through the hospital. Using what we had learned, three focus groups were held with healthcare staff asking them to consider what helped or got in the way of managing pain for the person living with dementia in acute care.  Staff then came up with ways to try and improve this area of care. Our work with patients, families and staff resulted in them helping to develop a novel training package on pain management to help us to work with patients experiencing dementia.

This research study and further research is required if we are to ensure all patients living with dementia receive appropriate access to good pain management within acute care settings.

Deirdre Harkin is a PhD Researcher at the School of Nursing at Ulster University and a nurse in the Trauma & Orthopaedic Unit at Altnagelvin Hospital, Co Derry. Prof. Vivien Coates is the Florence Nightingale Foundation Professor of Clinical Nursing Practice Research at the School of Nursing at Ulster UniversityDr Donna Brown is a lecturer at the School of Nursing at Ulster University

The views expressed here are those of the author and do not represent or reflect the views of RTÉ