Evidence
Alert

Practical changes in cancer care could reduce fear and confusion among people with dementia

People with dementia face unique challenges when they need cancer treatment. In a new study, researchers explored the difficulties faced by people with dementia, their carers and healthcare professionals.  They interviewed and spent time with these groups and came up with practical measures which could help.

Dementia causes problems with memory, communication and decision-making. Many people with dementia found hospital visits confusing and frightening; they had difficulty retaining information and in understanding what was happening. Staff working in cancer services (oncology) said they lacked training on dementia, and that dementia was often not flagged in medical records. People with dementia who had supportive family carers were more likely to receive appropriate cancer care and treatment. But it placed a burden on carers.

The researchers suggest several strategies which could make cancer care more accessible and individualised for people with dementia. Involving carers more would help, along with longer appointments and simpler written explanations, with pictures, for people to take home. Staff working in cancer services could benefit from training on dementia. And it needs to be easier for people to travel to hospitals, and to find their way around them.

What’s the issue?

Cancer and dementia both become more common as people get older. Therefore, many people have these two diseases in later life. Healthcare systems are typically organised around single diseases and cancer services may struggle to meet the needs of people with dementia who are receiving cancer treatment.

However, there is little research on the experiences and care needs of this group. Receiving cancer care is difficult for anyone; having dementia could bring extra challenges. Previous research suggests people with dementia are diagnosed with cancer later than older people with cancer who do not have dementia. They also have worse outcomes: they are less likely to receive cancer treatment, have more complications if they do, and are more likely to die

Researchers gathered the experiences of older people with cancer and dementia, their carers and healthcare staff.  They learnt about the challenges faced by all of these groups, and identified measures that might help improve hospital-based cancer care.

What’s new?

Researchers observed 12 people with dementia when they attended hospital for cancer treatment. They talked to them and their families about their experiences as they were happening - and attended consultations and treatments, including radiotherapy and chemotherapy. The researchers then interviewed 13 people with dementia, 22 family carers and 19 members of staff.

The main finding was that dementia complicated all aspects of cancer treatment and care for the patients themselves, their carers and staff. Dementia increased the practical and emotional burden on patients and their families. It made treatment decisions more complex. It added to the difficulties staff had in meeting patients’ psychological and social needs in the clinic and monitoring their symptoms outside of hospital. 

The researchers identified five areas of concern. 

1. Sharing information - People with dementia, their carers, and oncology staff all felt they lacked the full picture. Dementia was not always recorded clearly in medical records so staff did not always know a person had the condition. Staff said their knowledge of, and training in dementia, was limited. Patients and carers often felt uninformed and confused. They found that information about a cancer diagnosis, treatment options and potential side-effects was sometimes explained too quickly or in ways that were too complicated.

A clinical nurse specialist said of one man: "... to someone who didn’t know him, he was absolutely fine … it wasn’t until we saw his medication history [that we knew he had dementia]." 

2. Decisions about care - When people with dementia did not have capacity to make an informed decision about cancer treatment, this fell to family and clinicians. Families were concerned about the responsibility and there were sometimes disagreements amongst family members. They were concerned that people with memory loss would have to re-receive the news they had cancer at each appointment, or re-observe changes to their body from treatments. This could distress them time and again.

A consultant surgeon said: “If they’ve had for instance, a breast removed, they may have forgotten why that’s been done. They may feel that they’ve been mutilated against their will.” 

3. Balancing the needs of patient and service - Cancer services have targets to meet in terms of how many patients they see and treat. This was at odds with the slower, individualised approach that many people with dementia said they needed during their cancer treatment. They wanted simple explanations, and to see the same staff in the same environment, each time.

A consultant oncologist said: “It’d be nice if the system would say, actually, Jane’s got dementia, she needs a two hour, an hour slot, and if we had the capacity to do that, we don’t.” 

4. Navigating services - People with dementia could be confused and overwhelmed by logistical challenges. These included attending multiple hospital appointments, organising transport, finding the correct department and waiting in busy and unfamiliar places. 

A patient who had come to the hospital alone forlornly and tearfully told the doctor: “[I have been] lost all morning... I didn’t know where I was…..[I am] worried about where my husband is ..[and about] getting home.”

5. Involving families and supporters - People with dementia relied on family members to get through cancer care. Carers organised attendance, provided emotional reassurance and information, monitored symptoms and side-effects. When there was no family network, it was unclear who should provide this support. 

A researcher noted of a woman from a care home who appeared to have dementia and had come to the clinic alone: "So difficult for doctor to get any information, lady is muddling-up current and previous problems and unable to explain her situation."

Why is this important?

This research suggests people with dementia who also need cancer treatment face considerable challenges getting the care and support they need.

The researchers suggest ways that cancer care could be improved for people with dementia. 

    • Making sure oncology staff know a person has dementia by asking about memory problems at the first appointment and clearly recording this in medical records.
    • More dementia training for oncology staff. 
    • Keeping communication about cancer diagnosis and treatment clear, jargon-free, and at a comfortable (slow) pace. Giving written, personalised information for patient and carer to take home. Providing leaflets with photos of the equipment that will be used, and offering pre-treatment visits to see it.  
    • Flexibility in the length of appointments; people with dementia often need longer than others. Also flexibility in the location; some follow-ups could be by phone. Where possible, the same clinician should see the patient, in the same treatment room.  
    • Making sure the family member is included at every step (with the patient’s permission), but without excluding the patient. For example, sending a copy of letters to the family member as well as to the patient. Or allowing carers to settle the patient on the table for radiotherapy, and speak to them over the intercom to provide reassurance during treatment.
    • Making the hospital environment more dementia-friendly. Volunteer staff at hospital entrances could wait with patients while a carer parks the car, signage could be improved, other navigation aids could be introduced, quieter seating areas made available. 

What’s next?

Some recommendations will be easier to put into place than others. Further research should determine how much difference the changes make to patient experiences. Some have been implemented already: Leeds Teaching Hospital NHS Trust now has coloured chairs in a long corridor in their radiotherapy department to serve as a resting point and wayfinding aid for people with dementia. They have staff ‘dementia champions’ in cancer services and are reviewing the information they collect about the individual needs of people with dementia. 

The researchers presented the findings to staff from various departments at both sites in the study. Their findings are included in the Society and College of Radiographers updated practice guidelines on working with people with dementia

However, many questions remain. For example, the small patient sample in this study was mainly White British. Further research should explore the experiences of people with cancer and dementia from more diverse communities. Plus, the study followed people’s experiences after they had been diagnosed with cancer; it would be useful to explore how people and their families decide whether to seek diagnosis. 

People who attended appointments alone were reliant on busy oncology staff to support them and show them where to go. The researchers suggest that future research could explore whether volunteers could help them, as navigators. Patient navigators are used in the US and Canada.  

You may be interested to read

The full paper: Ashley L, and others. Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study. Age and Ageing 2021;50:1

The project website: Cancer and Dementia in Hospitals (CanDem)

Blog by lead author Laura Ashley: “They don’t know the whole picture”: Improving cancer care for people with dementia and their families. British Geriatrics Society, 2020

Webinar by co-authors Claire Surr and Alys Griffiths: The cancer care needs and experiences of people living with dementia. Dementia Researcher, 2020

Dementia UK and Macmillan Cancer Support booklet: Cancer and Dementia - A guide for carers

Macmillan's information and support pages for individuals caring for someone who has cancer and dementia

Dementia UK guide for carers of individuals with cancer and dementia

 

Funding: This research was funded by the NIHR Patient Benefit Programme.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

We knew very little about people’s experiences of cancer treatment and care when they have dementia. We were surprised by how difficult it was to identify people with dementia who were attending oncology services, particularly initially, given its importance in considering treatment options. Dementia was often inconsistently or poorly-recorded in medical records,

Both hospitals we worked with had some excellent dementia initiatives in place, including good training programmes, and they had research ongoing into their in-patient services. Even so, there was little or no knowledge of dementia among oncology staff, who were not aware of and therefore not accessing the training or dementia expertise that was available in the Trust.

Claire Surr, Research Professor, School of Health & Community Studies, Leeds Beckett University 

Dementia UK 

A double diagnosis of cancer and dementia can put a huge emotional and practical burden on families. The pressures are intensified when they try to navigate through two disparate health and social care systems which are seemingly at breaking point.

‘One of the challenges of dementia is that people who are diagnosed can find it difficult to communicate. This can make it difficult for them to explain what cancer symptoms they are experiencing, any pain which may result from these symptoms and for their clinicians to explain to them what is happening. Family carers meanwhile can be overwhelmed by appointments, check-ups and medication. There are also tough decisions about planning for the future and treatment.

‘Families need access to good symptom management, emotional support, advance care planning (which enables people to make plans about their future healthcare) as well as education about dementia and its interaction with other conditions. Specialist dementia Admiral Nurses are ideally placed to provide this.

Karen Harrison Dening, Head of Research and Publications, Dementia UK 

Public contributor 

Clinicians in all areas of healthcare delivery use jargon and confuse patients, irrespective of whether they have dementia. All staff need training on dementia but cancer patients with dementia undoubtedly need more support. Upskilling cancer support nurses to roll out some of the good recommendations from this research would help. Patient records should be flagged appropriately.

COVID-19 has meant that many follow up appointments have been virtual. For many people with multiple conditions, it can be a relief not to have to attend a busy hospital. This could be a benefit moving forward.

Deborah Bellamy, Public Contributor, Reading 

Healthcare strategist  

These recommendations could inform the design of outpatient and cancer treatment services. They are not just for oncologists, but for all staff involved in cancer care, hospital facilities, accommodation leads, carers, and charity organisations.

I want to take action in my hospital trust based on this research. We need to investigate how to support people with dementia, and how we identify as early as possible if our older patients are in this group. Memory problems could become part of an assessment for patients when cancer is suspected.

I would like to look at how family and informal carers are supported; we might need to improve our holistic assessments. The points about documentation of dementia, and outpatient facilities not helping people with dementia, are fairly new to me and highlight an important issue.

More work may be warranted to look at more diverse communities. The possible influence of dementia on the treatment offered might also be an issue.

Charlotte Williams, Director of Strategy, Mid & South Essex NHS Foundation Trust