pain in people with dementia

Laurna Bullock, PhD Research Student

Pain conditions are increasingly common as we age, and this is equally true for those who also have dementia. Research shows that just under half of the people with dementia report “normal” everyday pain that affects their everyday life. However, as dementia progresses it may be more difficult for the person to communicate about their pain. As a result, pain in people with dementia may be incorrectly assessed and treated.

Most research in this area (pain in dementia) is focused on nursing home, end-of-life, and hospital settings where it is found that pain is often not recognised/undertreated. However, to date, very little research has been carried out in community settings, this is despite the fact that most people with dementia live at home, and are mainly treated by their GP.

This study aims to understand the views of pain assessment and treatment from people with dementia and informal caregivers of those with dementia. This research will be the first to explore pain for people with dementia living at home.

We spoke about the study with Laurna Bullock, PhD Research Student currently working on the Pain in People with Dementia (PIP-D) study.

What are the main aims of the study?

We want to explore the experiences of pain and pain management for people with dementia living at home and their caregivers.

What does it involve for a participant

Participants will be asked to complete an interview, which should take approximately 90 minutes to complete. This interview will involve an informal conversation about the pain and pain management for the person with dementia. The interview can be completed at a location of the participant’s choice (including their own home). Interviews with people with dementia must be completed jointly, with a caregiver. However, interviews can be completed with caregivers jointly with a person with dementia, or alone.

How long is the study for?

Recruitment will be open until November 2018. Participants will complete a one-off interview, taking approximately 90 minutes, at the participant’s preferred location.

What do you hope the outcomes of the study will be?

There will be no direct benefits to those taking part, however the results of the study will form part of a larger research project that aims to improve pain assessment and treatment for people with dementia living in their own homes, being treated by their GP.

The perspective of the person with dementia and caregivers will be used to understand the current experience of pain and pain management, and the adequacy of support they have received. Such findings will help to highlight positives and negatives regarding the current state of pain management for people with dementia living at home. This research will help us to understand more about the improvements needed to help people with dementia live at home, with appropriate pain management.

Where is the study based?

The study is based at Keele University, however we are recruiting from within the West Midlands area.

Who can take part? (eligibility criteria)

We are currently looking for participants with a diagnosis of dementia living in the community (including assisted living, old age communities, with family members, or alone in their own home). All people with dementia must have an informal caregiver willing to take part in the interview. The person with dementia must be willing to take part in an interview, and have the ability to communicate verbally. People with dementia should not take part if they are experiencing distress or upset, currently live in a nursing home, or can no longer communicate.


pain in people with dementiaYou can see if you are eligible for this study or others around the nation by logging into your Join Dementia Research account.

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