The CanDem Study
Understanding the care and support needs of people with comorbid cancer and dementia.
The study aimed to identify the size, characteristics, cancer treatment and care needs of people living with cancer and dementia. We examined the healthcare records of 116,388 people with cancer, dementia, or both conditions. We undertook qualitative interviews and observations with people living with cancer and dementia, their families, and oncology staff. The project ran from May 2018 to August 2019, with dissemination and writing up currently underway.
A summary of the key findings can be found below.
Funding: £155,116 The National Institute for Health Research, Research for Patient Benefit.
Cancer and dementia are both common conditions in older people. In the UK half of all people with cancer are aged over 75 and there are currently 850,00 people living with dementia. However, we do not know how many people in the UK are living with both conditions. Or what their cancer care and support needs are, or how these could best be met.
To identify the size, characteristics, cancer treatment and care needs of people living with cancer and dementia in the UK.
We undertook two inter-linked studies; a quantitative study (using GP records) and a qualitative study (using interviews and observations).
- Study One
We used anonymised data from the GP records of 116,388 people with cancer, dementia, or both conditions living in the UK. We compared data for each group of people, including demographic information (such as gender, age, place of residence) and clinical information (such as comorbidities, visits to the GP, and prescriptions).
- Study Two
We used observations, interviews and hospital records to understand the cancer care experiences of 17 people living with dementia and 22 of their families, as well as the experiences of 19 staff members providing support to them. In total, we carried out 37 interviews and undertook 46 hours of observation.
Summary of the results
We found that a significant minority of people are living with cancer and dementia; of people aged 75+, 7.5% were living with both conditions. We also found that people living with cancer and dementia differ in important ways from people with cancer alone. For example, they are older, more likely to live in a care home, more likely to have additional comorbidities (alongside having cancer and dementia) and use more healthcare resources (e.g. GP appointments and prescriptions).
Having dementia adds a great deal of complexity to cancer treatment and care. For example, decision making around cancer treatment becomes more complex. There are challenges around capacity, understanding and retaining information, and balancing quality against quantity of life. Cancer clinicians did not always know if someone had dementia and most staff had little or no access to dementia training. However, we also found many examples of cancer services providing a range of approaches to support people with dementia and their families to navigate cancer care. These included consistent staffing across appointments, tailoring of information and appointments to suit the person’s needs and recognition of the need to support and include sometimes highly burdened family members as well as the person with dementia.
Getting the findings into practice
We are currently developing ways to share the findings with clinicians in order to help improve the cancer care experiences for people with dementia and their families. For example, we are working with the Society and College of Radiographers, several cancer charities and local cancer services to translate best practices identified during the study into practice.
We would be pleased to hear from any organisations or services who would be interested in using the findings to improve the care and support cancer services offer to people living with dementia.
Online summaries of the results
- Summaries of the study suitable for people living with dementia, families and staff
- A webinar covering providing an overview of the project and the key findings
For more information about the study, including information and support around using the findings in clinical practice, please contact Professor Claire Surr (Chief Investigator): Email: firstname.lastname@example.org Tel: (0113) 812 4316.
Journal articles and publications
As part of our dissemination work with the Society and College of Radiographers we have written an article for their Synergy News publication summarising the findings of CanDem.
This research was led by a team from the Centre for Dementia Research (Professor Claire Surr, Dr Rachael Kelley, Dr Alys Griffiths) in collaboration with Professor Amanda Farrin1, Michelle Collinson1, Ellen Mason1, Professor Fiona Cowdell2, Dr Ann Henry1,3, Hayley Inman4, Amanda Proctor3, June Hennell5, Maria Walsh5, Liz Jones5, Margaret Ogden5.
1 School of Medicine, University of Leeds; 2 School of Nursing and Midwifery, Birmingham City University; 3 Leeds Teaching Hospitals NHS Trust; 4 Bradford Teaching Hospitals NHS Foundation Trust; 5 CanDem Lay Advisory Group
This research was funded by the National Institute for Health Research (NIHR) RfPB programme (project reference PB-PG-0816-20015). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.