Helping to improve the cancer care and treatment experiences of people living with dementia
September is World Alzheimer’s Month – and in this blog post, Professor Claire Surr shares her team’s research into what it is like for the many older people who are living with both cancer and dementia – and what services can do to better support them.
As people age they are at greater risk of developing long-term health problems. Cancer and dementia are two such conditions. Statistics show that over a third of new cancer cases are in people aged 75 or over and around 95% of all people with dementia are aged over 65.
Therefore, many older people are likely to live with both cancer and dementia, known as comorbidity. However, until recently there has been little research exploring how many people are living with both cancer and dementia or the care experiences and support needs of this group. The limited available research available suggests that people with dementia, have worse cancer outcomes compared to those without dementia, including later diagnosis, greater risk of complications during treatment and poorer survival rates.
In our recent study, named CanDem, we 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 does the population of people with dementia and cancer look like?
We looked at anonymised data (from 2005 to 2016) of people who were aged 50+ and had a diagnosis of cancer and/or dementia between from 391 GP practices (which is around 5% of practices in England). We compared people who had cancer and dementia with those who only had cancer or only had dementia.
We found that for people aged 75+
- 1 in 13 people who had a cancer diagnosis also had dementia, and
- 1 in 13 people with a dementia diagnosis also had cancer.
What is cancer care and treatment like for people affected by dementia?
This study involved 17 people with cancer and dementia, 22 relatives and 19 staff members working in hospital cancer services in northern England. We used observations, informal conversations, and interviews with participants to find out about their experiences. We also looked in the medical records of people who agreed to be observed. We did 37 interviews and conducted over 46 hours of observations within two hospital cancer departments which provided a range of cancer services. The events we observed included consultations, treatments (chemotherapy and radiotherapy), scans and follow-up appointments.
We found that living with both cancer and dementia led to an ‘accumulated complexity that made many aspects of cancer treatment and care more difficult for people with both conditions, their family members and oncology staff. We identified five key areas where this complexity was particularly clear;
There were many decisions involved in in cancer treatment and care, all of which led to concerns for people living with cancer and dementia, families and staff about whether the right decision had been made. This might include how to share the cancer diagnosis, if and what treatments to have and whether to continue with treatments if the person became distressed.
Navigating cancer care
Getting to and from hospital for treatment particularly difficult for people with dementia and their supporting family members. Attending by car, could mean navigating rush hour traffic and difficulties finding a suitable place to park close to the entrance. Users of the Patient Transport Service were very grateful for the service; however they sometimes had long waiting times after being dropped off sometimes hours before their appointment and then afterwards for their return home. If bookings were not made correctly, the person’s family member might not be able to travel with them, leading to distress and risks for them and transport and oncology staff.
Balancing the needs of the person vs the needs of the service
We found that cancer service staff worked hard to deliver care individualised to the person, and this did make a difference to people’s experiences. This could sometimes be difficult when limited information about the person was passed on by the GP or other services. We saw staff offering flexible and longer appointment times and also sending clinic letters to relatives where everyone agreed to this. Staff discussed how this often took more time, which was difficult within process and target focussed cancer services.
Reliance on supportive networks
Families and friends were vital to supporting people with dementia through every step of their cancer diagnosis, treatment and care. However, not all families were in a position to easily support to their relative, for example due to their own poor health or because of disagreements between family members about decisions around treatment and care. Many families felt guilt, stress or alone and unsupported. Where no family network was available, finding someone to meet this support gap (i.e. a social worker, formal carer) was difficult and could mean a person with dementia was not able to access cancer treatment.
‘Working without the full picture’
People with dementia and cancer sometimes felt that they did not always have all of them information they needed to understand their diagnosis and treatment. Likewise, cancer services staff were not always aware that the person had dementia, as this was not always clearly recorded in referral letters, medical records or clear from talking to the person. Staff also felt they would benefit from greater dementia knowledge and access to dementia specific training.
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 a person’s dementia diagnosis is recorded in medical records, referral letters and in other cancer service documentation.
- Ensure cancer services staff have access to dementia specific training
- Providing simple personalised information to people with dementia and their family member about their diagnosis and treatment to help with decision-making and remembering.
- Being flexible with appointment times and lengths to help with transport issues and time to allow consultations and treatment to run at the person’s pace.
- Make the physical environment in oncology departments more ‘dementia friendly’ e.g. signage, providing things to do in waiting areas and providing volunteer staffed ‘drop off’ and ‘pick up’ areas, at hospital entrances allow people with dementia to wait while their travelling companion is parking/collecting the car.
- 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.
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.
You can also view a webinar where we presented the results of this study.
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.