Pain and dementia

This information is sourced from Scottish Palliative Guidelines and Dr Jo Brady

Pain in advanced dementia is common, under-recognised and under-treated. 

As a person's ability to communicate reduces, unusual behaviour (e.g. wandering, agitation, shouting or aggression) MAY be a sign of distress or pain. 

There are many causes of troubled behaviour in advanced dementia (e.g. anxiety, boredom, unfamiliar surroundings or people, hunger or thirst) which is why it is often difficult to assess whether someone is in pain. 

An approach to assessing pain in advanced dementia

  1. Ask the person simple questions such as 'is it sore' or 'does it hurt'
  2. Talk to whoever knows the person best - family or carers usually know the behaviour that means the person has pain
  3. Assess pain at rest or on movement as the cause may become more obvious
  4. Using a pain assessment tool may be helpful (but not always) for some e.g. the Abbey pain tool. A certain level of understanding is needed to respond.

Questions to consider

  • What does their face look like? - Are they grimacing or clenching their teeth?
  • Are they rubbing or pulling at a particular part of their body?
  • Are they more irritable, crying, groaning, shouting ?
  • Body language - are they stiff, rocking, restless or guarding part of their body?
  • Are they moving less?
  • Do they seem to be seeing things or to be frightened? 

Possible causes of pain or distress

  • Sore mouth, toothache, ill fitting dentures
  • Being lifted or moved in an uncomfortable way
  • Difficulty in going to the toilet ? Constipation can be painful and distressing
  • Painful joints
  • Uncut finger or toenails
  • Earache
  • Being in an uncomfortable position or same position for a long time

What can you do for someone’s pain

This depends on the severity of the pain and whether you have identified a cause. To start you could try simple approaches such as changing their position. Touch and massage for aches and pain in the muscles, cold compresses or warmth can help. Consider a trial of simple pain medication such as paracetamol and give this regularly if pain is ongoing. Do review and consider whether the pain relief has helped.

If there is significant discomfort stronger prescribed pain medication will be required. 


Scottish Palliative Care Guidelines - Pain Assessment - Cognitive Impairement

Published 18th April 2022


Related Services

24 hour Advice Line Michael Sobell Hospice

24 hour Advice Line Michael Sobell Hospice

T. 0203 824 1268

Offers support and advice on palliative care issues to GPs, Care Homes, District Nurses and hospital doctors.

It is also an Advice Line for patients and families who live in Hillingdon and need advice on any aspect of palliative care. 

The Advice Line is answered by hospice nurses in the Inpatient Unit and queries are escalated to the on-call palliative medical team if needed.

Admiral Nurse Dementia Helpline

The Admiral Nurses at Dementia UK provide information, advice and support with any aspect of dementia.

The specialist dementia nurses offer free and confidential support via the Helpline for you when you need help.

Alzheimer’s Society

The Alzheimer's Society dementia advisors can help people living with dementia and their carers. They can provide practical help and emotional support via the telephone support or the online community connecting those in similar situations.

Brent Carers Centre

Brent Carers Centre deliver a whole range of support services to address the social, emotional and financial issues that carers experience.

Care Place

London Borough of Hounslow publishes a regular factsheet called Information for Carers. It lists local, national and council services, voluntary organisations and other sources of advice and support that may be useful if you look after someone as an unpaid carer.

Carers Network

Carers Network is an independent local charity reaching over 5,300 unpaid carers in the most isolated and deprived pockets of the City of Westminster, the London Borough of Hammersmith and Fulham and the Royal Borough of Kensington and Chelsea. We have been proudly supporting carers in central London since 1991.

There is help for new carers and a carer's assessment to discuss how to maintain your health and balance your caring responsibilities with other areas of your life. It may also help you get financial support.

Carers Trust Hillingdon

Carers Trust Hillingdon offer support and guidance to unpaid carers of all ages throughout the London Borough of Hillingdon.

They provide information, advice, training and support and a range of Fact Sheets on their website.

Telephone advice centre open every day 10am to 4pm or email with enquiry to email address above.

Benefits and legal advice also available.

They have a team specifically to support young carers.

Community Action on Dementia Brent

The Dementia Hub Project  in Brent offers tailored support to people living with dementia and their families. The team can provide advice about benefits, the social care system and how to access wellbeing support such as Dementia Cafés.

Harrow Carers

Harrow Carers is an independent charity and voluntary organisation and has been the lead carers’ support agency in Harrow since 1996. Support and services are available to anyone who cares for people in the community who are ill, frail, disabled and disadvantaged.

Marie Curie

Marie Curie provide support for patients and carers through terminal illness.

Find information and support through the telephone helpline and online chat via their website.

Other services include Marie Curie nurses, Hospice care, helper and companion services.

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