The detection and management of pain in patients with dementia in acute care settings: development of a decision tool


Aims: In this study, we propose to develop tools to help support staff who work in hospital settings recognise when a person with dementia has pain, and give them guidance on how to treat it effectively.
The aims are:

  • To improve the care that patients with dementia receive when they are admitted to hospital, by ensuring that their pain is effectively managed.
  • Develop tools to help support staff who work in hospital settings recognise when a person with dementia has pain and give them guidance on how to treat it effectively.
  • Identify what tools already exist, and explore how hospital staff currently identify, manage and record pain for patients who have dementia.
  • Examine how carers can be more involved in pain identification, helping and recording process by building on their knowledge of the person with dementia
  • Develop tools that can be used by staff and carers to help them to identify pain and manage it in patients with dementia who are being cared for in hospital. The exact nature of the tools we develop will depend on the findings of the first stages of our study. They may consist of checklists or algorithms for health care professionals to use, that can provide guidance on how to identify if someone may be in pain and guidance on what to do if they think they have pain.


The MRC framework for the development and evaluation of complex interventions has been used to guide the study design. The study has three components:

  •  systematic review of existing evidence: a synthesis of existing systematic reviews of pain tools used with individuals with cognitive impairment. 
  • A multiple case site study with embedded units of analysis (individual, ward, organisation). We will collect multiple sources of evidence including observation of practice, interviews with clinical staff, carers and managers, and audits of policies and procedures to provide an in-depth analysis of current pain detection and management practices. This phase will explore how carers are currently included in the process, and identify areas where it could be improved.
  • Development of decision support tool 


‘Dementia’ is a broad term, comprising a number of chronic neurodegenerative syndromes, including Alzheimer’s disease, vascular dementia and frontotemporal dementia. These syndromes are associated with multiple changes in the brain, causing deterioration in cognitive performance as well as changes in behaviour, personality and communicative functioning. Increasing age is a key risk factor for developing dementia and it is estimated that 1 in 14 people over 65 years have a diagnosis of dementia, increasing to 1 in 6 people aged over 80 years.

The number of people with dementia is increasing, and more are being treated in a hospital setting. A recent study has found that 42% of patients who are in hospital also have dementia. These individuals may also be experiencing pain, which can cause considerable distress, and may lead to a number of other problems such as poor sleep, problems with mobility and falling over. At the moment it is difficult for staff working in hospital settings to accurately find out the cause of distress in people with dementia, reducing their ability to manage it appropriately. Patients who have dementia may not be able to remember the reasons why they have pain and for how long it has lasted (which is important for staff to know so that they can treat the pain effectively). Also, hospital patients who have dementia may not be able to communicate well verbally, which makes it even harder for staff to recognise their pain, where the pain might be and what might be causing it. Carers, who know the person with dementia the best, find it difficult to alert staff due to a number of factors such as restrictive visiting times and ward layout. Carers are a potentially an asset in helping hospital staff identify pain in their loved one and helping to manage it effectively.


  • Dawn Dowding
  • John Keady
  • Jose Closs
  • Nick Allcock
  • Michelle Briggs
  • Caroline Swarbrick
  • Liz Sampson
  • John Holmes
  • Clare Hulme
  • Anne Corbett
  • Valentina Lichtner
  • Andrew Long

Funding body: National Institute for Health Research Health Services and Delivery Research

Contact: Professor Jose Closs