Understanding and helping cancer services improve care and treatment experiences of people living with dementia
In recognition of Dementia Awareness Week 2021, Professor Claire Surr discusses this study undertaken by the CanDem research team.
The risk of developing dementia increases with age, with one in six people over the age of 80 living with the condition. Over 200,000 people a year develop dementia – one every three minutes. In the UK someone is diagnosed with cancer every two minutes with more than half of new diagnoses in people aged 50-74 and 36% in people aged 75 and over. Therefore, many older people are likely to live with both cancer and dementia, but until recently there has been little research in this area.
The studies exploring how many people live with both conditions gave very different estimates due to the different and sometimes unreliable methods being used. Research suggests people with cancer and dementia experience worse outcomes than people with cancer or dementia alone. However, this too had not been looked at in any detail in the UK.
We carried out a study (CanDem), which aimed to understand the size and characteristics of the UK population of people with cancer and dementia, and to understand more about how people with dementia experience receiving cancer treatment and care. In this blog we will share what we found.
What did we do?
We analysed anonymised data from GP records for people aged 50 and over who were recorded as having a diagnosis of cancer, or dementia or both. We looked at their characteristics and also what health services they used and compared these across the three groups – people with cancer alone, people with dementia alone and people with both cancer and dementia.
How many people have cancer and dementia?
In people aged 75+ who have cancer 1 in 13 also have dementia.
In people aged 75+ who have dementia 1 in 13 also have cancer.
What are their characteristics?
The most common types of cancer in people who had both cancer and dementia were prostate, breast, bowel and lung cancer. Although 40% had another type of cancer. These were similar to people who had cancer alone, although we saw a slightly bigger percentage of people with breast and prostate cancer in the cancer and dementia group.
People who had both cancer and dementia were older than people with cancer alone, and slightly older than those with dementia alone.
People with cancer and dementia were more likely to have other chronic illness as well, compared to people with cancer or dementia alone.
What about health services use?
People with cancer and dementia have more appointments at their GP surgery each month than people with cancer or dementia lone. They also have on average a greater number of prescribed medications.
What is cancer care and treatment like when you have dementia?
To find out about people’s experiences of cancer treatment and care when they have dementia we interviewed or observed the cancer treatment and care experiences (or both) of people with cancer and dementia, their relatives and staff members working in hospital cancer services in two NHS Trusts in northern England. We also looked in the medical records of people who agreed to be observed. The events we observed included consultations, treatments (chemotherapy and radiotherapy), scans and follow-up appointments.
We found that living with dementia made cancer treatment and care more complex across five key areas:
- Sharing and understanding information
- Navigating cancer treatment and care
- Making decisions about care
- Involving families and supporters in care
- Balancing the needs of the person and the service
What can cancer services do to better support people with dementia?
We identified lots of ways (many of which have no or little cost) that cancer services can support people living with dementia and their families.
- Ensuring that cancer services staff ask if someone has dementia, record this clearly in their medical records and share it with other appropriate colleagues
- Providing simple personalised information to people with dementia and their family member about their diagnosis and treatment to help with decision-making and remembering.
- Ensuring family members who are supporting the person with dementia are included in all correspondence and communication (with the consent of the person with dementia) and receive appropriate support for their own needs.
- Making sure (where possible) the person with dementia is seen by the same staff and in the same treatment rooms to support familiarity
- Make the physical environment in cancer departments more ‘dementia friendly’ e.g. signage, providing things to do in waiting areas
- Being flexible with appointment times and lengths to allow consultations and treatment to run at the person’s pace
- Providing extra support around transport to and from hospital – for example volunteer staffed ‘drop off’ and ‘pick up’ areas, at hospital entrances, reserved parking spaces close to oncology departments and access to dementia friendly waiting areas when waiting for Patient Transport
- Ensure cancer services staff have access to dementia specific training
You can view a webinar where we presented the results of this study here.
Acknowledgements & funding
The CanDem project was a collaboration between the research team from Leeds Beckett University, University of Leeds and Birmingham City University, the Lay Advisory Group and two NHS trusts in North England. The study team are Laura Ashley, Fiona Cowdell, Michelle Collinson, Amanda Farrin, Alys Griffiths, June Hennell, Ann Henry, Hayley Inman, Liz Jones, Rachael Kelley, Ellen Mason, Margaret Ogden, Claire Surr and Maria Walsh.
The CanDem study was independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0816-20015). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Claire's research focuses on ways to improve the experience and support of people affected by dementia with a focus on developing formal dementia services and dementia education and training for the health and social care workforce.