Pain in advanced 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.
Pain is what the person says hurts.International Association of Hospice and Palliative Care.
This feature gives some ideas for what you can do to recognise pain in people with dementia, and what you can do to help people with dementia better manage pain.
What is pain?
Pain is defined as ‘an unpleasant sensory and emotional experience associated with actual or potential damage to the body’, for example a burn to the hand from an iron or a broken bone from a fall (IASP 1979). Pain is a very personal thing. This means that – as the International Association of Hospice and Palliative Care says – ‘pain is what the person says hurts’: that is, it is what the person describes and feels as pain. No other person can experience the pain, know what it feels like or how it really affects the person physically and emotionally.
Why do people with dementia receive poor pain relief?
There are a number of reasons why people with dementia typically receive poor pain relief. The most obvious is that the person with dementia may lose the ability to tell us they are in pain.
Also, 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 – for example, calling out for help repeatedly – are due to ‘the dementia’ rather than to pain (see the features in the ‘Difficult situations’ section). Some believe that people with dementia do not experience pain or that because their memory is so poor they forget the experience.
Common causes of pain in dementia People with dementia are usually older and therefore many of the causes of pain will be the same for all older people: osteoarthritis, a disease that can affect some or all of the bones joints pressure sores skin tears leg ulcer dressings stiffening of joints muscle rigidity constipation.
People often experience pain when a part of the body is moving, so for example a person is most likely to experience pain when they are being helped to turn in bed, get dressed or undressed or when a wound dressing is being cleaned or removed.
How can we know if the person is in pain?
Ask the person directly
The best thing to do is to ask the person directly. Many people with moderate or even advanced dementia may still be able to provide information on their pain. Keep questions simple, as some people may not understand what you mean when you use the word ‘pain’. You may need to use words like ‘Is it sore?’ or ‘Does it hurt?’. When a person has poor short-term memory they may only be able to tell you if they are in pain at that moment – they may not remember if they had pain five minutes or five hours ago. Asking how severe pain is may also be difficult: ‘Does it hurt a lot?’ or ‘How much?’ may not be helpful, as often the person will not be able to describe how bad the pain is or how often it occurs.
Be careful not to overload the person. If a person is asked a question again and again that they do not understand, they may become agitated and distressed.
Know the person well
Spend time finding out from relatives or close friends of the person the usual signs to look out for when the person is in pain, discomfort or distress. For one person it may be a shout out, for another it may be that they become very quiet and withdrawn. Knowing what to expect could make a big difference in your approach.
Be very clear on whether the person has any other conditions, for example, arthritis, ulcers, pressure sores, recent injuries, fractures, a history of constipation, chest pain or headaches. This information should be recorded in a safe place that is accessible for staff and easy to read.
Use a tested tool to assess pain
A number of different resources are 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 (for a copy of the Abbey Pain Tool go to: www.dementiacareaustralia.com). 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: vocalisations (or making sounds): whimpering, groaning, crying facial expressions: looking tense, frowning, grimacing, looking frightened changes in body language: fidgeting, rocking, guarding part of body, withdrawn behavioural changes: increased confusion, refusing to eat, alteration in usual patterns bodily changes: raised temperature, pulse rate or blood pressure, perspiring, flushing or looking very pale physical changes: skin tears, pressure areas, arthritis, contractures, previous injuries.
Using a tool such as this can help in your assessment of the person’s pain. It can guide you to the cause of the pain, its severity, when it occurs and what helps to make the pain better or worse. It will give you evidence to show a nurse or doctor if the pain is present or gone. If the pain is still present, always inform a doctor or nurse to review the person’s medication.
What medication can be used to relieve pain in advanced dementia?
One of the most common and effective medicines to relieve pain in advanced dementia is paracetamol. Ensure medication (for example, paracetamol) is given as prescribed. This can be when it is needed – if pain is constant give it regularly. Paracetamol can be given one hour before someone is helped to move or before a dressing needs to be changed.
Other medications to relieve pain include antibiotics to treat infection, laxatives to relieve constipation, antacids (such as Gaviscon) to help indigestion, and peppermint water to relieve wind-type pain.
You can ask a range of professionals for advice on pain management: a tissue viability nurse, palliative care or district nurse, physiotherapist or massage therapist, or a GP or pain specialist team in your local area.
Other ways to tackle pain, without medication
Gentle exercises to relieve stiff joints (seek advice from a physiotherapist on the best and safest techniques to use) and massage to relieve tight muscles can help (but again seek advice first from a massage therapist).
Some people benefit from using heat pads, although be careful that they do not irritate, are too hot or used for too long.
Help position the person so that they are comfortable in bed or in a chair. Use an air mattress and air cushions to relieve pressure.
Distraction, relieving boredom, a calm, comfortable environment, social contact, treating anxiety and/or depression can all help to alleviate pain.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- QCF Mapping: Pain in advanced dementia
- Activity: Pain in advanced dementia
- What the research says: End of life care
Further reading Open
Abbey Pain Tool. For a copy of the Abbey Pain Tool visit www.dementiacareaustralia.com
About.com website (2006) ‘Assessing pain in dementia’. Available at alzheimers.about.com/od/treatmentoptions/a/pain.htm
International Association for the Study of Pain Subcommittee on Taxonomy. (1979). Pain terms: A list with definitions and notes on usage. International Association for the Study of Pain Subcommittee on Taxonomy, vol 6, no 3, pp 249–52.
National Council for Palliative Care (2012) How would I know? What can I do? How to help someone with dementia who is in pain or distress. London: NCPC.
North West Dementia Centre (2005) ‘Pain in dementia: factsheet’. Manchester: NWDC. Available from www.pssru.ac.uk/pdf/MCpdfs/Pain_factsheet.pdf
Pace, V., Treloer, A. and Scott, S. (2011) Dementia: From advanced disease to bereavement. Oxford: Oxford University Press.
Useful links Open
Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.
Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.
Difficult conversations: making it easier to talk to people with dementia about the end of life
The National Council for Palliative Care (NCPC) and the Dying Matters Coalition produced this booklet to help both professionals and carers of people with dementia to open up conversations about end of life wishes, particularly early in the dementia process. The booklet is available to download from the NCPC or Dying Matters Coalition website for a small charge.
End of life care for people with dementia living in care homes
This 2012 research briefing from SCIE looked at this issue from a range of perspectives, including people with dementia, family carers and care home staff, and found that more research and support is needed in this area.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Living and dying with dementia in England
This 2014 joint report from Marie Curie and Alzheimer’s Society investigates the barriers to people with dementia receiving good end of life care in England.
Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start conversations with people with dementia about end of life care, and it covers ‘What to talk about’ and ‘What happens if you don’t talk’, and ‘When to talk’.
Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.
Related pages from this section Open