Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
Advancing Healthcare for People with Dementia
People with dementia are frequent users of healthcare services, making it important that healthcare staff are well prepared to meet their needs.
People living with dementia often have other healthcare conditions alongside their dementia (such as diabetes, cancer or heart conditions), meaning they frequently use healthcare services. The range and complexity of care and support needs that come with dementia can make accessing and providing healthcare more challenging. For example, healthcare staff may not have the right information or knowledge to meet the needs of someone with dementia, or having dementia may make attending and understanding healthcare appointments more difficult. As a result, experiences and outcomes of healthcare provision can be less positive for people living with dementia than it is for patients without dementia.
Our healthcare-focused research responds to this need to improve experiences and outcomes of healthcare for people living with dementia and their families. Our research ranges from exploratory work to identify current care experiences and how these might be improved, including for specific conditions such as cancer, through to the development and evaluation of interventions to improve healthcare provision for people living with dementia.
Our research has driven guidance development and led to advances in services and support for people living with dementia who are using healthcare services. For example, it has:
- Informed the content of nationally available information and guidance for people affected by cancer and dementia in collaboration with Macmillan Cancer Care
- Provided key contributions to guidance from the Society and College of Radiographers on working with people living with dementia
- Led to the development, in collaboration with the Alzheimer’s Society, of a specialist online support space for people affected by dementia and cancer
We use inclusive methods (such as the use of 'ethnography' - observing and spending time with people in healthcare settings) to ensure the experiences and views of people with dementia are included in our research.
Life with Dementia & Cancer - A Personal Perspective xpert by Experience Maria Walsh and her daughter Nadia talk about Maria’s experiences of receiving a cancer diagnosis when living with dementia:
We also work with NHS Trusts and other organisations to share the findings of our research and develop recommendations, toolkits and guidance for improving care based on the findings.
Our portfolio of research in this area is predominantly funded by the National Institute for Health and Care Research (NIHR) but also by other funders, such as the Alzheimer's Society.
Please see below for our current and recent research on advancing healthcare for people with dementia.
Current and recent funded research and evaluation:
Around 90% of people with dementia have one or more other long-term conditions (such as heart disease, kidney disease or diabetes). They regularly use hospital outpatient services. The limited existing evidence suggests they experience many challenges when doing so, including difficulties accessing, understanding and making decisions about their care. No interventions have been developed to optimise outpatient care for PLWD and many aspects of existing inpatient-focused interventions are not applicable to outpatient settings.
This study aimed to explore experiences of outpatient services for PLWD, families and staff, including examples of good practice and potential improvements. This information was used to co-design and feasibility test a toolkit to improve outpatient care for PLWD and their families.
To read more about the study, and for the study outputs and resources, please visit the project page.
Chief Investigators: Dr Rachael Kelley and Professor Claire Surr
Leeds Beckett Investigators: Dr Nicky Taylor and Professor Anne-Marie Bagnall
Funder: National Institute for Health and Care Research (NIHR) Research for Patient Benefit Programme (RfPB)
Funding amount: £253,635
Hospital staff report difficulty using person-centred care during routine care activities despite increased access to training and resources. Managing patient safety, such as reducing a person's risk of harm from falls, is a priority for hospitals and staff. A common activity used to address risk of harm in people with dementia is constant observation. This involves allocating a member of staff to one patient, or a small group of patients, in one area of a hospital ward. The quality of care during this activity varies. This study mapped the use of constant observation for people with dementia and co-designed and tested the acceptability and feasibility of an intervention that supports person-centred care for people with dementia during constant observation.
Chief Investigator: Dr Melanie Handley, University of Hertfordshire
Leeds Beckett Investigators: Professor Claire Surr, Dr Nicky Taylor
Funder: Alzheimer's Society
Funding amount: £316,381
Study outputs: The use of constant observation with people with dementia in hospitals: a mixed methods systematic review.
People who have dementia often get distressed when they are in hospital. Distress can be shown by agitation, aggression or calling out. How healthcare practitioners say things can calm or inflame a difficult situation, but this has not been studied in detail in this setting. ‘Conversation Analysis’ is a research method which looks at the fine detail of the language we use, including ‘body language’, and the responses to it. This study has used conversation analysis to identify approaches that work in reducing distress in video recording of interactions between staff and patients with dementia in acute hospitals. It has developed a training programme on communication approaches to help prevent and support distress. This is currently being delivered to staff who work on two wards in each of in three acute hospital NHS Trusts. It is using in-depth case studies to assess the impact of the training on staff communication and patient and staff outcomes.
Chief Investigator: Professor Rowan Harwood, University of Nottingham
Leeds Beckett Investigators: Professor Claire Surr
Funder: National Institute for Health and Care Research (NIHR), Health and Social Care Delivery Research programme (HS&DR)
Funding amount: £828,827
Study output:
- Implementation of dementia communication skills training in acute hospitals: a longitudinal, mixed-methods case study evaluation
- “I want to get out … I've got a child at home”: Intersubjectivity, reality disjunctures and distress in the care of people living with dementia in the acute hospital
- Two of the best ways to respond to people with dementia who think they are in a different time or place
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.
This study aimed to advance our understanding of, and to identify ways to potentially improve, cancer recognition, referral and management for people with dementia and their families in primary and community care. The study involved interviews with people with cancer and dementia, their family members/supporters and staff working in primary care and community care-based roles who support this group.
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. The study outputs include recommendations for practice to improve cancer care for people living with dementia.
To read more about the study, including the key outputs and recommendations, visit the project page.
Chief Investigator: Professor Claire Surr
Leeds Beckett investigators: Dr Laura Ashley, Dr Rachael Kelley
Funder: National Institute for Health and Care Research (NIHR), Research for Patient Benefit Programme (RfPB)
Funding amount: £155,116
The aim of this funded, doctoral ethnographic study was to examine acute oncology care needs and experiences of people living with dementia, their relatives and NHS staff who provided their care across two NHS Trusts in the north of England. Data generation methods included general and individual observations of acute cancer care and semi-structured interviews. The findings identify how dementia adds additional and cumulative layers of complexity to acute oncology care, and approaches to care provision that may help to address unmet needs and reduce the risks of further acute oncology care being required.
PhD student: Rebecca Platt
Leeds Beckett University supervisors: Dr Laura Ashley, Professor Claire Surr, Dr Rachael Kelley
Funder: Alzheimer’s Society
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
Study outputs: Understanding cancer care for nursing home residents living with dementia: An ethnographic study
Around 70% of people living in care homes have dementia, and approximately 21% have osteoporosis. It is therefore very likely that both conditions frequently co-exist among care home residents. Caring for both osteoporosis and dementia is challenging due to the complex intersection of these conditions, further confounded by high staff turnover and heavy workloads in care homes. This doctoral, ethnographic study will collect data via observations, conversations, interviews and documents to explore experiences of osteoporosis care for residents with and without dementia, including ways care could be improved.
PhD Student: Holly Dodsworth
Leeds Beckett University Supervisors: Professor Claire Surr, Dr Rachael Kelley
Funder: National Institute for Health Research (NIHR) Three School’s Dementia Programme
This study 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. The findings highlight the high prevalence of additional comorbidities in patients living with cancer (56% had at least one other comorbidity diagnosed in the two years preceding their cancer diagnosis) and the resulting additional needs that many cancer patients may have due to the presence of one or more comorbidities.
Chief Investigator: Michelle Collinson, University of Leeds
Leeds Beckett Investigators: Professor Claire Surr, Dr Laura Ashley
Funder: Macmillan Cancer Support
Funding amount: £19, 211
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 doctoral study is using ethnographic methods (observations and interviews) to explore experiences of using patient transport services for people with memory problems or dementia.
PhD Student: Lesley Butterworth
Leeds Beckett University Supervisors: Dr Rachael Kelley, Professor Claire Surr
This doctoral study, part of the Alzheimer’s Society Doctoral Training Centre, is exploring lived experiences of diabetes care for people with dementia, including people from diverse backgrounds.
PhD Student: Chidubem Ejiofor
Leeds Beckett University Supervisors: Dr Laura Ashley, Dr Rachael Kelley
Funder: Alzheimer’s Society
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
