People with dementia feel pain the same as all of us but their deteriorating brain function can mean that they can’t clearly communicate their distress; instead they may be agitated, restless or shout out. By working together as a multi-disciplinary team, looking for non-verbal signals and acting quickly we can control their pain and help each individual feel comfortable and content.

Is pain different in dementia?

Dementia as a disease doesn’t actually cause pain, however those with moderate to severe Alzheimer’s are far more likely to suffer conditions that are painful owing to the diificulties of accurately assessing the pain. Falls, pressure injuries/ ulceration, arthritis and many medical conditions can all contribute to their pain and distress.

It was previously thought that the brain damage in dementia stopped pain sensation. But recent research looking at MRI scans has confirmed that they feel the sensation of pain the same as those without the disease; they just can’t always adequately express the presence of pain, especially in the later stages of the disease when their functions of cognition and communication have declined.

It has been shown that people with dementia, especially those in residential care actually report less pain and have less analgesia, although this result is likely to be a red herring. In reality, the lower reporting rates are likely to be due to the difficulties those caring for residents with dementia have in accurately identifying and assessing pain, combined with a reluctance of GP’s to prescribe regular pain relief.

Additionally, some individuals with dementia report becoming hypersensitive to certain stimuli due to the brain’s declining ability to deal with multiple concurrent stimuli, whether that be auditory, tactile or other.

Reporting pain

In the early stages of dementia, people may still be able to verbally report pain but their declining ability to understand and communicate may make it more difficult to pin-point the location and severity of their symptomsin order to reliably ask for and take medication. It is for this reason that regularly administered analgesia is far more effective than PRN administration in managing pain in this population. 

It’s not just dementia that can stop people reporting pain. There are many other factors; they may be frightened, not want to be a burden, be depressed or have cultural or religious beliefs that pain should be bravely tolerated. It is important to have appropriate reliable strategies in place to assess pain. Simply asking if everything’s OK may not be enough, even if their communication is still good.

Those assessing should enquire about the possible presence of pain by using alternate descriptors such as ache, discomfort, tension and actively look for potential sources of pain. Pain assessment should always involve movement of the body over a period of time, as pain can be missed if assessments are completed when the resident is static.

Non-verbal signs of pain

Non-verbal signs can be really helpful in assessing pain at all stages of dementia. Many behaviours of concern seen in those with dementia can be caused by emotional distress or part of normal disease progression but pain should always be ruled out as a possible cause. Non-verbal cues include: 

• Vocal signs: moaning crying or shouting or sometimes unusual silence.
• Body Movement: The movement may be limited or slow, they may keep a body part still or protect and guard a specific area.
• Signs of distress: They may grimace, be restless and make gestures of suffering.
• Physical signs: Their observations may show an increased heart rate or blood pressure. You may notice sweating or a change in skin colouration.
• Emotional signs: They may seem angry, irritable or aggressive. Some people in pain withdraw and become flat, quiet and uncommunicative.
• Sleep disturbance: This can be reflected in agitation and sleeplessness or on the other hand lethargy, low energy and increased sleeping.
• Appetite: You may notice decreased appetite, eating less and weight loss.

Missing the signs of pain

If pain isn’t recognised, a person will not only suffer unnecessarily but they may also be treated for the wrong thing. Restless or disruptive behaviour may result in sedation with anti-psychotics, silent withdrawal may be interpreted as depression. Any medications given will have side effects and won’t get to the root of the problem. Musculoskeletal pain can decrease mobility, interfere with activities and increase the likelihood of falls. Persistent pain of any kind can worsen the symptoms of dementia and profoundly impair their quality of life.

 Assessing pain

For individuals with dementia it is particularly tricky as they may not fully understand the questions and struggle to explain their symptoms. Assessing the presence of pain should be completed by a professional that has the required expertise. To assist us to adequately and reliably assess, The Australian Pain Society suggests that we use pain rating scales such as Abbey, The Brief Pain Inventory or Painad pain scales to complement a full physical examination.

Treating pain

Wherever possible we need to treat the cause of the pain and for chronic, on going pain, management should be an essential part of the care plan. Extra medication can be added for any breakthrough symptoms.

At Agestrong Physio we use a number of non-drug therapies to ease discomfort, these include massage, hot and cold packs, active exercise, stretching, education and other proactive self management techniques. Postural care is an important element in eleviating discomfort, so regularly reviewing our clients seating, pressure care & support surfaces to ensure they have enough body and neck support can have a dramatic effect. Relaxation techniques and engagement in regular leisure activities can also be useful.

Pain can be debilitating, especially when an individual has difficulty communicating their suffering. But by watching, assessing and treating we can prevent discomfort and distress.