Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
Dementia and Comorbidity
People with dementia are at risk of having a range of other health conditions known as comorbidities, alongside their dementia.
Having dementia can make these other conditions more difficult to manage. Healthcare is often delivered in condition-based ‘silos’ where other conditions a person has, such as dementia may not be considered properly, if at all. Our work in the area of dementia and comorbidity has focussed particularly on cancer and dementia as a comorbidity. It has highlighted the importance of recognising dementia in oncology services and tailoring care to support a person’s individual needs.
Life with Dementia & Cancer - A Personal Perspective Expert by Experience Maria Walsh and her daughter Nadia talk about Maria’s experiences of receiving a cancer diagnosis when living with dementia.
Current and recent funded research and evaluation:
Living with dementia alongside other long-term conditions
This study is developing an innovation hub based on Engineering Better Care principles, which uses modelling and simulation to articulate how people with multiple long-terms conditions alongside dementia and their carers/supporters access and navigate health and care services. It will also explore factors that impact patient outcomes. The study involves:
- Reviewing literature about accessing healthcare for people with dementia
- Holding workshops with people with dementia and their carers/supporters to look at how services work and agree what a good service experience might look like
- Building simulation models that make mathematical calculations to work out what outcomes might be expected for people with different characteristics and needs who access different models of services
Chief Investigator: Professor Claire Goodman, University of Hertfordshire
Leeds Beckett Investigator: Professor Claire Surr
Funder: National Institute for Health and Care research
Funded amount: £197,954
This study is exploring experiences of general hospital outpatient care for people living with dementia and how they could be improved. It aims to be the first study to develop and test approaches to optimising hospital outpatient care for people living with dementia.
Chief Investigators: Dr Rachael Kelley and Professor Claire Surr
Leeds Beckett Investigators: Dr Nicky Taylor, Dr Andrew Papworth, Dr Anne-Marie Bagnall
Funder: National Institute for Health and Care Research, Research for Patient Benefit Funding Programme (RfPB)
Funding amount: £253,635
The care and support needs of those with both cancer and dementia
One in two people in the UK develop cancer in their lifetime, mostly when older. People who have dementia are more likely to have cancer diagnosed when it is more advanced, as an emergency, or not until after death, which leads to poorer outcomes and experiences. They are also less likely to have cancer symptoms such as pain managed well.
When someone has dementia it makes it more difficult for that person and others to recognise and communicate potential cancer symptoms and for GPs to decide if hospital referral for diagnosis and potential treatment is the best course of action. It also complicates and makes it more difficult for families and supporters to care for the person and to manage any cancer related symptoms or treatment side effects. However, there is little research to inform the care GPs and other community-based practitioners give to this patient group and their families.
This study aims to advance our understanding of an to identify ways to potentially improve cancer recognition, referral and management for people with dementia and their families in primary and community care. We have interviewed people with cancer and dementia, their family members/supporters and staff working in primary care and community care based roles who support this group.
We are currently analysing the data and will have findings and recommendations for practice available later in 2024.
Chief Investigator: Professor Laura Ashley
Leeds Beckett Investigators: Professor Claire Surr, Dr Rachael Kelley
Funder: National Institute for Health and Care Research (NIHR) Research for Patient Benefit Programme (RfPB)
Funding amount: £153,461
This study aimed to describe the size, demographics and health resource use of the population of people with comorbid cancer and dementia and to understand their cancer care, treatment and support needs.
To read more about the study please visit the project page.
Chief Investigator: Professor Claire Surr
Leeds Beckett investigators: Dr Laura Ashley, Dr Rachael Kelley, Dr Alys Griffiths
Funder: National Institute for Health Research, Research for Patient Benefit Programme (NIHR RfPB)
Funding amount: £155,116
This funded doctoral research study examined the care and support needs of nursing home residents who are living with comorbid cancer and dementia, using ethnographic methods. It found that decision-making around cancer diagnosis referral, treatment and care was complex and required triadic decision-making including the resident, their family and heath and care home staff. Decisions were made complex by the challenges associated with attending secondary care for oncology appointments and balancing this against the potential benefits or not of receiving a formal cancer diagnosis. Frequently decisions were made not to refer a care home resident for a formal cancer assessment and diagnosis and clinical diagnoses of suspected cancer were made. Many care home staff had incomplete knowledge about a resident’s cancer diagnosis and struggled to balance cancer and dementia care needs. This resulted in dementia focussed care, risking an overlooking of cancer symptoms, these being inefficiently managed or misattributed as dementia-related. The study made recommendations for practice in caring for this resident group in nursing homes.
PhD student: Olivia Robinson
Leeds Beckett University Supervisors: Dr Laura Ashley, Professor Claire Surr
Funder: The Abbeyfield Research Foundation
This funded doctoral research study is examining the experiences of and ways to optimise acute oncology services for people who are living with dementia, using ethnographic methods.
PhD student: Rebecca Platt
Leeds Beckett University supervisors: Dr Laura Ashley, Professor Claire Surr, Dr Rachael Kelley
Funder: Alzheimer’s Society
This study led by Michelle Collinson at the University of Leeds aimed to estimate the UK population sizes and describe the demographic, clinical and healthcare resource use characteristics of people with cancer and a wide range of comorbidities as recorded on the Quality Outcomes Framework (QOF) Disease Registers.
Chief Investigator: Michelle Collinson, University of Leeds
Leeds Beckett Investigators: Professor Claire Surr, Dr Laura Ashley
Funder: Macmillan Cancer Support
Funding amount: £19,211
