Table 1 Examples of interview questions and key themes supported by illustrative participant quotes

How do you recognise/identify when a person with advanced dementia who is approaching their last few months, weeks, days and hours of life is in pain?

Are there any factors that make it difficult to tell if someone with advanced dementia is in pain? How do you overcome these challenges?

Theme: recognising pain

“We use a lot of body language to ascertain if they’re in pain. We had a gentleman recently who’d had a fall. He was refusing to eat and this went on for a few days and I actually phoned his GP. The gentleman was obviously in pain because he was in bed all day, every day, he was drawing his knees up, he was grimacing, rocking and certainly even just from the fact that he must have been hungry as well, we knew he had some form of pain”. HCA06 Nursing Home

“It would be difficult if you didn’t know the patient, you know? Once the patient’s with you for a while you can read their moods and sometimes just by looking at them you know they’re in pain. It would be difficult if it was a new patient to you and you hadn’t got to see the wee signs or understand the non-verbals from the patient. It would be difficult then, yes”. HCA03 Hospice

Describe your experiences of reporting and discussing pain in residents with advanced dementia with other healthcare professionals.

Theme: reporting pain

“ Any changes in a patient’s condition I refer to the nurse-in-charge”. HCA014 Hospital

“I would go to a staff nurse or a doctor and say you: this seems different to me, this is unusual, do you think this patient would be in pain?” HCA03 Hospice

“Whenever—see if a resident gets say paracetamol, well then you can be monitoring for like two to four hours afterward and if you feel that the person has settled, well then obviously it’s working but if the person hasn’t settled, well then obviously the paracetamol isn’t working on her. So we would go back then and again you contact the doctor”. HCA08 Nursing Home

Do you think further/additional training in managing pain in patients with advanced dementia is required for healthcare professionals? How do you think this should be delivered?

Theme: training and upskilling

“Maybe some ideas and tools that could be put in place to help us assess pain appropriately and deal with it appropriately”. HCA05 Hospice

“I think we can be maybe that bit more hands-on with pain assessment when the nurse has, you know a lot to do with her role. We can be there by the bedside and as I say, any changes I would see in a patient’s condition, I would make sure I pass on”. HCA013 Hospital

“We should, we should be given more training. Probably how to recognise it [pain] better cause’ there’s so many different ways to tell if somebody is in pain and if there was anything that we could instead of always having to go to the nurse”. HCA011 Nursing Home