Pain and dementia: managing the two
Being pain free is widely accepted as a human right. A rights-based approach in dementia, now encompasses the legal obligations under national and international law as well as the medical and ethical obligation to do our utmost to manage pain effectively for those with a diagnosis of dementia.
Now, imagine having a toothache that bothers you for several days, think about how that constant pain would start to affect you. You may notice changes in your concentration, you may struggle to function properly at work or at home, you may develop a low tolerance for frustrations and present with uncharacteristic irritability or aggressions. You may just want to be left alone and withdraw or become clingy and seek reassurance and comfort from those around you.
You understand you are experiencing pain, where it was coming from and the level of that pain. You would also know to take some analgesia to relieve the pain and probably make an appointment with your dentist to have the issue resolved.
Now imagine the same scenario but you also have dementia and are no longer able to understand the sensation of pain, locate where it is coming from or how severe it is, and are unable to communicate this to the people around you. Just imagine how that experience would affect your wellbeing and quality of life!
This is not an unusual situation for people with dementia. The prevalence of pain in people with dementia is very high, with an estimated 50% regularly experiencing pain. However, assessing pain for those with dementia can prove challenging, as self-reporting, which is seen as the gold standard assessment, is not a reliable method due to the cognitive impairment many people with dementia will experience.
People living with dementia are also at an increased risk of experiencing pain as they are more likely to suffer from age-related medical conditions and can be more prone to accidents and injuries. Many people are now living longer which has increased the risk of co-morbid conditions that go on to cause disabilities that may consequently cause some level of pain. This can lead to the person with dementia presenting stress and distress behaviours such as aggression or withdrawal which can be misdiagnosed as behavioural and psychological symptoms of dementia. This can result in the inappropriate prescribing of antipsychotic medications which can have multiple and serious side effects for a person with dementia.
To some extent the myth that people with dementia can’t feel pain still exists, and of course this is not the case. In Melbourne, there was research carried out in pain in Alzheimer’s Disease using MRI Scanning. It examined the brain activity in people with Alzheimer’s disease and found that pain-related brain activity took place in the same regions as those without the diagnosis. The person with dementia still experienced pain but was unable to recognise or manage it, the same way you or I would, which often results in pain not being recognised or treated effectively.
It is essential that unpaid carers are made aware of the issues of pain and dementia and are given the knowledge and tools to recognise indicators of pain, so they can seek treatment as soon as possible. It is also important that carers are included in any discussion and assessment of pain so they are able to report any recent changes in the person such as routine, demeanour and behaviour.
If the person being cared for can no longer communicate they are in pain, there are things that carers can look out for that can help them to identify pain. It’s the nonverbal signs that become the crucial indicators of their pain and discomfort. Some of the signs to be aware of are:
- Facial grimacing
- Sighing, groaning
- Guarding a particular body part or reluctance to move
- Moaning or reacting with movement
- Slowed up movement or limited range of movement
- Increased heart rate, blood pressure, or sweating
- Restlessness and agitation
- Crying or shouting for help
- Increased or decreased vocalisations
- Lethargy or increased sleep
- Disrupted or restless sleep
- Decreased appetite and intake
- Increased confusion
- Anger, aggression, irritability
It is possible that some of these signs could relate to their dementia and other conditions, however pain should be considered as a possible cause as this has the potential to be treated promptly and effectively.
Several pain scale assessment tools have been designed to assist in overcoming the challenges of identifying pain in people with dementia. The Abbey pain scale is the tool that has the best evidence base for use with people who have dementia. This is available online and may be helpful for family carers to help them identify possible pain issues. Please see link below to access a copy.
It is very important that the management of pain becomes part of the care plan for the person with dementia. The pain should be reviewed regularly, and treatment should be tailored to what works best for them, and therapies should be adjusted when necessary. It is important that analgesics should be taken at regular intervals, rather than on an as required basis. Other non-pharmacological therapies can also be effective in pain management therefore should also be considered and should be discussed with the medical practitioner involved in the persons care.
Alzheimer’s society’s view on antipsychotic drugs. [Accessed: 29.06.21.]. Online: https://www. alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/antipsychotic-drugs
Cole LJ, Farrell MJ, Duff EP, Barber JB, Egan GF, Gibson SJ. Pain sensitivity and fMRI pain-related brain activity in Alzheimer’s disease. Brain, 2006, 129(Pt 11):2957-2965. Available at http://brain.oxfordjournals.org/
Lorraine Haining is a Specialist Practitioner at Dementia Carers Count. Lorraine’s background is in mental health nursing and she has specialised in dementia care for over twenty years. She holds the title of Queens Nurse Scotland, a social movement of nurses, selected by their local Health & Social Care Boards who are catalysts for change in their community. Lorraine has a range of experience that has allowed her to work across the UK. She enjoys the education arm of her work and knows acquiring knowledge and skills can be really empowering for family carers.