Finding out how pain affects people living with dementia is one of the results expected from new research in Nottingham.
Clinical and academic experts in pain, dementia, mental health and geriatrics at the University of Nottingham and Nottingham University Hospitals NHS Trust (NUH), are working alongside members of the public to help develop more effective treatments.
More than 940,000 people in the UK are living with dementia. It affects more than one in every 11 people aged 65 and over. Around one in two people living with dementia will have issues with pain, and many people living with dementia will have mood and behaviour change symptoms at some point in their illness (such as, depression, anxiety, and disturbed sleep) which may be linked to pain. This combination of problems can make pain much more difficult to recognise and treat.
Currently, the treatments available for pain among people living with dementia are not as effective as they could be. The way pain is experienced is complex and varies between individuals. The purpose of this study is to explore how pain, mood and behaviour change symptoms are related, and how these impact on quality of life. This research is important because it will help clinicians to understand how people living with dementia experience pain and important associated symptoms, and will enable research into more targeted, effective treatments.
The CAPPPeD (central aspects of pain and neuropsychiatric symptoms of dementia) Study – which has received £150,000 in national research funding – is now inviting people with dementia and their families to take part and help the team to find answers.
Dr Alison Cowley, a physiotherapist and associate Chief Allied Health Professional at NUH and Honorary Associate Professor at the University of Nottingham, said: “Dementia is increasingly common in the UK and many people and their families will have been touched by this debilitating disease in some way or other.
“The way pain is experienced alongside dementia is complex and varies from person to person. However, it may include depression, anxiety, disturbed sleep, fatigue, poorer concentration, sensitivity to heat, and cold.
“This can affect people’s ability to take part in social activities that are important to them, and affect their everyday activities such as washing, dressing and walking. This research will help to find out more about these differences and identify better treatments.”
Dr Jemima Collins, Clinical Associate Professor in the Care of Older People at the University of Nottingham and a Consultant Geriatrician said: “Currently, the treatments we use for pain are only partly effective for people living with dementia. This research will help us understand how people living with dementia experience pain and other symptoms and enable research into more targeted and effective treatments. In addition, it will help us understand the experiences and perspectives of carers and family members.”
The CAPPPeD study, funded by the National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) programme, will last for 16 months.
If you are interested in taking part in the study, or would like to know more, you can contact the CAPPPeD team including by email CAPPPeD@nottingham.ac.uk Phone 07577 197497. You can follow CAPPPeD on social media via X/Twitter: @capppedstudy