Cici and Izzy’s story – “I hope sharing our experience helps other young carers”
Cici (28) and Izzy (23) share their experiences of having a parent living with young onset dementia and becoming a carer at a young age.
While dementia itself does not cause pain, people with dementia can sometimes perceive pain more intensely. Dementia often causes confusion, fear and disorientation. This heightened emotional distress can make pain feel more severe.
Pain can be hard to recognise in a person with dementia, which may mean it is underestimated or missed entirely. If the person you care for seems more confused or distressed than usual, consider whether they may be in pain.
Why pain can go unnoticed in people with dementia
Pain sometimes gets overlooked in people with dementia. This can mean their pain is not treated properly, which can cause further discomfort and distress. The reasons for this include communication challenges, differences in how people with dementia express pain, and not recognising the causes of distress.
Communication challenges
Dementia can cause communication challenges, and this can make it difficult for a person with dementia to let others know they are experiencing pain. For example, they might jumble up their sentences or struggle to find the right words. They might use the wrong words to explain how they feel – for example, saying ‘injection’ rather than ‘indigestion’.
Someone with dementia might also find it difficult to recognise and express that what they are feeling is pain. They may not be able to describe where the pain is coming from, and even say “No” if you ask if they’re in pain.
Differences in expressing pain in people with dementia
People living with dementia may express pain differently than you expect. Instead of saying that they are in pain, they may start moving or behaving differently. For example, they might seem agitated or restless, or they might make sounds of discomfort like sighing or moaning.
Misunderstanding behavioural changes
It can be difficult to know whether changes in behaviour are symptoms of a person’s dementia or caused by pain. Sometimes, symptoms of pain are misunderstood as dementia symptoms. If the person you care for seems more confused or distressed than usual, it is a good idea to consider whether they may be in pain and seek advice from their GP.
Signs of pain in people with dementia
If you are looking after a person with dementia, you are likely to know them well. If you can, think back to past times when you knew they were in pain. How did they react then? Does that help you interpret their behaviour now?
The most obvious way to find out if a person with dementia is in pain is to ask them – but as their condition progresses, they may have difficulty telling you.
It is a good idea to check the person with dementia over for visible signs of injury or inflammation, such as swollen joints, cuts or bruises, pressure sores or mouth ulcers.
There are also various non-verbal signs of pain in dementia that you can look out for.
Agitation or aggression
The person with dementia may be trying to communicate that they’re in pain if you notice:
- signs of stress such as calling out, groaning or shouting – especially if this is new behaviour, or has increased recently
- signs of aggression – especially if these are new or have increased recently
- seeming frightened or distressed during personal care, like washing and dressing
Body language and physical changes
Changes in a person’s body language and movements may indicate that they are in pain, for example:
- fidgeting, restlessness, twitching, rubbing a body part or tensing up
- physical changes like sweating, appearing flushed or pale, fast pulse and/or changes in temperature
- making repetitive movements, such as rubbing or twitching
- showing discomfort when moving, or being less willing to move
Facial expressions
Facial expressions like grimacing and frowning can be signs of pain in a person with dementia.
Changes in appetite
Changes in appetite, such as starting to refuse food, could indicate that the person with dementia is in pain.
Changes in sleep patterns
If the person with dementia is sleeping more or less than usual or at different times, or waking at night, consider whether they might be in pain.
Sources of pain in people with dementia
Trying to find out why the person with dementia is in pain will not only help you make them more comfortable, but can also prevent medication being prescribed unnecessarily. For example, some symptoms could be relieved by treating the pain instead of prescribing medications for restlessness or agitation.
Health conditions
People with dementia, particularly older people, often have other health conditions, such as osteoporosis and sciatica, which may cause pain. It is important to keep up with regular health checks and help the person take any prescribed medication correctly to try to keep them as well as possible.
Mouth problems
Gum disease and other mouth problems can be extremely painful. People with dementia may find it hard to maintain good oral health, but with support, they can brush their teeth daily, use mouthwash, and visit the dentist regularly. Read our information on mouth care for more advice.
Arthritis
Arthritis becomes more common as people get older and can cause pain in the hands and feet, limbs, neck, spine and sometimes torso. If you notice swelling, redness or stiffness in the joints, speak to the person’s GP or a pharmacist for advice.
Constipation
Constipation can cause pain and discomfort and is more likely to occur if the person has a limited diet or is becoming less mobile. It can also be a side effect of some common painkillers, like co-codamol and morphine.
Try to encourage them to eat a balanced diet with plenty of fresh fruit and vegetables, and ensure they are drinking enough fluids. This can help to prevent headaches caused by dehydration. Our information on eating and drinking for people with dementia may be useful. If you think the person is constipated, speak to their GP or a pharmacist, especially if this happens often.
Urinary tract infections (UTIs)
UTIs are common in people with dementia and can cause significant discomfort. Symptoms may include pain or a burning sensation when peeing, stomach or lower back pain, and increased confusion or sudden changes in behaviour. In people with dementia, a UTI can sometimes lead to delirium: a sudden and severe state of confusion that can be frightening and distressing.
To help prevent UTIs:
- encourage the person with dementia to drink regularly throughout the day to help prevent infections
- watch for changes in behaviour, mood or physical symptoms that might be signs of a UTI
- contact the GP promptly if you suspect a UTI, as early treatment can prevent complications
There is also some evidence to suggest that drinking cranberry juice may help to prevent UTIs. However, it’s best to consult a pharmacist or GP as some medications such as warfarin may be affected by cranberry juice.
Inactivity
Lack of movement can contribute to pain, especially leg and back pain. If the person you care for spends long periods in bed or in a chair, encourage them to get up regularly, if possible. Try supporting them to take a walk to the kitchen for a drink, or just around the room.
Poor positioning in a chair or bed
Being poorly positioned can also cause pain, so check that the person’s chair or bed is supportive, and use cushions to help them sit or lie down comfortably. You can request a free needs assessment to identify any equipment or home adaptations that may improve their comfort and mobility.
Young onset dementia and pain
People with young onset dementia (where symptoms develop before the age of 65) may have different causes of pain. They may injure themselves at work, during sports, lifting heavy objects or doing DIY. If they still menstruate, they may experience period pain. Or if they are going through menopause, they may have uncomfortable symptoms like headaches and migraines, joint and muscle aches, or vaginal dryness and pain.
If you know of or suspect any of these causes of pain, try talking to the person’s GP or pharmacist to see if they can help.
Pain assessments
Assessing pain in a person with dementia is complex. But there are ways to determine whether someone is in pain, even if they cannot vocalise it.
Questions to ask someone with dementia
Initially, you can try asking the person with dementia questions to find out if they are in pain, and where. Because people with dementia can struggle to recognise and express pain, it may help to:
- use different words, such as ‘hurt’, ‘ache’, or ‘sore’
- name specific body parts you think might be hurting
- point at different places or encourage the person to point to where it hurts
Examples of questions you could ask include:
“Is your arm aching?”
“Does it hurt here?”
“Does it sting?”
“Is your leg sore?”
Pain assessment in advanced dementia (PAINAD) scale
The PAINAD scale is one tool healthcare professionals can use to determine if someone with dementia is in pain. After observing the person’s behaviour for at least five minutes, the professional assigns a score between zero and two in each of the five different categories, based on what they have seen.
This gives a final score out of 10, which indicates whether or not a person may be in pain.
| Behaviour | 0 | 1 | 2 | Score |
| Breathing independent of vocalisation | Normal | Occasional laboured breathing short period of hyperventilation | Noisy laboured breathing Long period of hyperventilation Cheyne-Stokes respirations | |
| Negative vocalisation | None | Occasional moan or groan Low-level speech with a negative or dissaproving quality | Repeated troubled calling out Loud moaning or groaning Crying | |
| Facial expression | Smiling or inexpressive | Sad Frightened Frown | Facial grimacing | |
| Body language | Relaxed | Tense Distressed pacing Fidgeting | Rigid Fists clenched Knees pulled up Pulling or pushing away Striking out | |
| Consolability | No need to console | Distracted or reassured by voice or touch | Unable to console, distract, or reassure | |
| Total score |
The Abbey Pain Scale is another method for assessing pain in people who cannot verbalise what they are feeling. It looks at six criteria and asks healthcare professionals to give a score between zero and three for each, resulting in a final score out of 18.
The categories assessed are:
- vocalisation such as whimpering, groaning, crying
- facial expressions that look tense, frowning, grimacing or frightened
- changes in body language such as fidgeting, rocking or guarding part of the body
- behavioural changes such as increased confusion or refusing to eat
- physiological changes such as temperature pulse, blood pressure or sweating
- physical changes such as skin tears, pressure sores, arthritis or injuries
The person is assessed in each category with one of the following scores:
- absent: 0
- mild: 1
- moderate: 2
- severe: 3
The final score and information from the Abbey Pain Scale assessment help a healthcare provider decide on the best pain management or treatment for the person with dementia.
How to look out for signs of pain
Regular monitoring
It is important to regularly monitor someone with dementia to pick up any signs of pain. If you regularly notice and record their behaviours, this will help you establish what is normal for the person, so you will be able to see if something has changed.
You can also check in with them and ask them regularly about whether they’re in pain, not just when you have seen signs. This could help you identify any new or worsening pain early and notice if it seems to be getting worse.
Recording behavioural changes
Keeping a written record of the person’s behaviour and any changes may help you notice signs of pain, as well as trends and patterns.
It can be useful to keep a diary, recording things like:
- how often the person seems to be in pain
- times of the day when they appear to be in pain
- changes in behaviour that might be signs of pain
- whether pain is brought on by particular movements or activities
This diary can be shared with health professionals to help them identify any patterns and decide on an appropriate treatment plan.
Pain management for people with dementia
If you believe the source of the person’s pain could be serious, please speak to their GP urgently, call NHS 111 for 24-hour advice, or go to A&E if necessary.
Painkillers
Painkillers may be helpful for managing pain, so consider making an appointment with the person’s GP to discuss a prescription. If medication is recommended, support the person to take it as prescribed and to attend any reviews with their GP or a nurse.
If the person has difficulty taking tablets, speak to the GP about other options, such as patches.
If healthcare professionals are unsure whether the person is in pain or what the source is, trialling painkillers and monitoring whether the signs improve can help determine if pain is causing the person’s behavioural changes.
Are there any risks to giving painkillers to people with dementia?
Two studies in 2018 found that opioid painkillers can cause side effects for people with dementia, such as personality changes, confusion and sedation. Opioids are a type of pain medication used to treat moderate to severe pain, usually for a short period of time. Common examples include morphine, codeine, tramadol and fentanyl. Opioids are considered the strongest type of painkiller and have a serious risk of addiction. They also carry risks of side effects such as itchy skin and gut problems like constipation. Risk of side effects from opioids are also increased when taken at the same time as some other medications.
A pharmacist or GP will be able to advise you on painkillers that are safe for people living with dementia and potential side effects.
Treating health issues
If the person with dementia has other health issues that are causing or may be causing pain, it is important to make sure these issues are well-managed and properly treated. Keep up to date with medical appointments, help the person take any prescribed medication and help them maintain a healthy lifestyle with a balanced diet and physical activity, if possible.
Similarly, if you suspect a new health issue alongside dementia, seek advice and support from the person’s GP.
Physiotherapy and massage
Physiotherapy may help with some types of pain, for example, bone, joint and muscle issues. A physiotherapist will assess the individual needs of the person with dementia, and may:
- guide the person through exercises to help them heal after an injury
- offer advice on positioning and support seating to ensure the person is as comfortable as possible
- help the person improve strength and balance, reducing the risk of falls and resulting injuries
- carry out massage to help relieve pain
- educate families, carers and caregivers on safe handling and adjustments within the home
- help with maintaining independence, with specific focus on daily tasks like dressing and managing stairs
If you think the person with dementia would benefit from physiotherapy, you can ask your GP for a referral. Some GP surgeries also have a first contact physiotherapist who you can see without a referral. Alternatively, you can find a private physiotherapist – but make sure they are registered with the Chartered Society of Physiotherapists (CSP).
Find a private physiotherapist on the CSP website
Gentle massage can be good for soreness, stiffness and general aches and pains, but it is important to explain what is going to happen and stop if the person seems in distress or discomfort.
You may be able to give the person with dementia a gentle massage yourself, but do not be too vigorous. If they see a professional massage therapist or physiotherapist, ensure they know that the person has dementia.
Intense, deep-tissue massage is unlikely to be a good idea for a person with dementia, as it can be painful and cause distress.
Heat or cold
Applying heat or cold can help with localised pain. Heat (such as a hot water bottle in a cover) is best for easing aches and stiffness. Cold (such as an ice pack wrapped in a tea towel) is better for treating inflammation like sprains and bruises.
When using heat or cold, always ask the person how it feels, and watch their face and body language to see how they react. Stop if you think the heat or ice pack is making things worse.
Gentle exercise
Gentle exercise can also be beneficial, but please seek advice from the person’s GP before trying anything new. If the person already exercises and wants to continue, ensure they do this safely. For example, they may not realise the need to warm up and down to prevent injury or rest a strained joint or muscle.
If a person with dementia is unable to take part in formal exercise, other forms of physical activity can still be good for their health. For example, stretches, gentle housework or just walking around the house.
Relaxation
Relaxation techniques such as breathing exercises or mindfulness can help with pain by distracting the person and helping to relax tense muscles and joints.
Chronic pain
Chronic pain is pain that lasts 3 months or more in the same area or areas of the body. It may be caused by another condition, or there may be no known cause. It can be isolated to one area, for example if arthritis affects particular joints. Or it can be felt all over the body, for example with fibromyalgia.
The pain management measures already discussed may help ease chronic pain for a person with dementia, especially if you know the source of the pain. If the source of the pain is unknown, this can be challenging, especially when combined with the communication difficulties a person with dementia can face.
This makes recording signs of pain and communicating regularly with healthcare providers to find treatments and management techniques especially important.
Sources of support
If you have any questions or concerns relating to dementia, call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or you can book a virtual appointment with an Admiral Nurse via phone or video call.
You may also find the following information useful:
Call the Dementia UK Helpline
Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia.
