The problem with someone with dementia, especially in the middle to later stages, is that they may be unable to tell you they are hurting, tired or feeling ill. This may be because they have forgotten they fell and hurt themselves earlier or they have difficulty or are unable to communicate what is wrong.
Pain – both physical and emotional - is one of the reasons why people with dementia exhibit agitation or aggressive behaviour. This could include pacing, confusion, calling out, anxiety, waking up in the night or wandering. Pain should always be taken into account as a possible cause. It is estimated that 50% of the elderly population suffer with chronic pain, with this figure increasing to 80% in care home settings.* Too often the behaviour can be attributed to the dementia and the real cause ignored.
What should you look out for?
- Your knowledge of the person is very important. How did they react in the past when in pain? Did they rub a knee, fidget or find it difficult to settle, withdraw, quickly become angry or swear? Is this what is happening now?
- Have they stopped eating? Could they have toothache, infected gums or ill-fitting dentures?
- Do they seem depressed? Being in constant pain could be the cause.
- Does the person become fearful of you touching a particular part of the body?
- Are they too hot or running a temperature? Could they have an infection or might they be constipated? Do they have a history of migraines?
- Do they groan, grimace, push you away, cry or become tearful when they move, resist moving or move differently from what is normal for them? They might have painful joints, sores or overlong finger or toenails. While aiding them, you might be lifting or moving them in an uncomfortable way. Often sitting in the same or an uncomfortable position for a long period can be painful. A former injury or condition such as arthritis, ulcers or constipation might be the cause.
There are also a number of other possible reasons for agitated or different behaviour such as boredom, frustration, hunger, thirst, feeling tired or neglected. Might they be missing someone or something – a person or a pet?
Investigating the cause
You have observed that something is wrong, you now need to investigate further. Use simple and straightforward language reinforced by facial expressions. Point to the knee or arm and ask ‘Does it hurt?’, ‘Are you too hot?’, ‘Do you feel sad?’ etc. Use questions that can be answered with ‘yes’, ‘no’ a nod or communicated with an expression.
Don’t forget that if the person has poor short-term memory they may only be able to tell you that they are in pain at that particular moment. They may or may not be able to communicate to you how severe the pain is, how often or when it occurs. To check the frequency it is helpful, once you have become aware of something, to record it and then check at regular intervals to find out if it is constant or occurs only at certain times. It is also useful to record what helps to make the pain better or worse. This will provide you with helpful information for the doctor.
There are pain scales available which you can use to help with this. One of these is the Abbey Pain Scale. Basically, the tool asks you to assess six possible signs the person may be in pain. These are:
- Vocalisation such as whimpering, groaning, crying.
- Facial expressions such as looking tense, frowning, grimacing, looking frightened.
- Change in body language such as fidgeting, rocking, guarding part of the body, withdrawn.
- Behavioural change such as increased confusion, refusing to eat, alteration to usual patterns.
- Physiological change such as temperature, pulse, or blood pressure outside normal limits, perspiring, flushing or pallor.
- Physical changes such as skin tears, pressure areas, arthritis, contractures, previous injuries.
You can use the Pain Scale as a guide to investigating the cause of the pain, its severity and when it occurs. Though do bear in mind that asking someone with confusion to rate their pain on a scale of 1 to 10 as requested on the form is unlikely to give any sort of accurate indication. There are too many choices and different interpretations. We all have different pain and sensation tolerances and experience them differently. You may need to rely on your knowledge of their behaviour in reaction to pain and facial expressions as indicators. If the source of the pain is not obvious, your loved one will need an examination by a doctor.
To get some information about how the Abbey Pain Scale can be used in pain management and a copy go to http://www.wales.nhs.uk/sitesplus/documents/862/FOI-286f-13.pdf
Relieving the pain
Once you know what is causing the pain, the process is straightforward. Do whatever you can to eliminate the source. Address any suspected medical issues such as possible infections, dental pain, angina, haemorrhoids, etc. If it is an ongoing condition such as arthritis, work with your medical practitioner to decrease and control the pain.
Keep in mind that if the person is going to do something that you know will cause them pain such as have a shower, you will need to give them their pain medication prior to doing it. For example, paracetamol, commonly prescribed for pain relief, can be given an hour before the person is moved. When constant pain is present you will need to make sure medication is taken at regularly prescribed times. If the person has memory difficulties you cannot rely on them doing this themselves.
Ask your GP for advice on different aspects of pain management in order to address your loved one’s issues. Other professionals who can give you advice include palliative care nurses, physiotherapists or pain specialist teams. For example, a physiotherapist can give advice about gentle exercises to relieve stiff joints and ensure you use the best and safest techniques.
What else can you do?
Other things which can help include:
- Letting the person know you are aware of their pain. Explain what you are doing or going to do to help them, even if they don’t appear to understand.
- Making sure the person is positioned so they are comfortable in a chair or bed
- Using air cushions to relieve pressure
- Distraction – to relieve boredom and focus attention away from the pain.
- Enabling the person to have social contact
As stated earlier, knowing the person and how they react to pain will give the best indications that something is wrong. Investigate the problem as early as possible so that action can be taken before the pain becomes excruciating and beyond what any currently prescribed medication can deal with.
Even if your loved one is in a care or nursing home, you have a vital role in observing and reporting suspected pain to staff. They will not have your knowledge of the person and how they react to pain unless you tell them. Remember those statistics, 50% of the elderly population suffer with chronic pain, rising to 80% in care home settings. And it may well be the cause of that agitation, disrupted sleep or other uncharacteristic behaviour. Ensure your loved one is as pain free as possible.
*The International Association for the Study of Pain. Fact sheet: Facts on ‘Pain in Older Persons’. http://www.iasp-pain.org/files/Content/ContentFolders/GlobalYearAgainstPain2/20062007PaininOlderPersons/fspainolderpersons.pdf. Also, Schofield P. Managing chronic pain in older people. Nursing Times 2013; 109:30, 26-27.
This article was written for Carewatch by Robin Dynes. Robin also wrote our Activity guides for people with dementia to help carers enrich the lives of those they support.
Robin has worked in the National Health Service, Social Services and Adult Education for over 30 years as a counsellor and trainer. His main role has been to develop innovative services to meet the needs of older people and others who are vulnerable.