“They don’t know the whole picture”: Improving cancer care for people with dementia and their families

Dr Laura Ashley is a Reader in Health Psychology at Leeds Beckett University, specialising in applied psychosocial health research, particularly with people affected by cancer. She is a past Chair of the British Psychosocial Oncology Society, and together with Professor Claire Surr (Head of Leeds Beckett’s Centre for Dementia Research), co-leads a programme of research focused on improving cancer care for people with dementia. Their latest paper was recently published in Age and Ageing. Laura tweets @Dr_Laura_Ashley

One in two people in the UK will develop cancer in their lifetime, and as cancer incidence rises with age, a significant number of cancer patients will have pre-existing dementia. Research shows that people with dementia, compared to those without:

• are more likely to be diagnosed with cancer at a later stage, during an emergency presentation, or postmortem;
• receive less cancer treatment;
• are more likely to experience complications and hospitalisations during treatment;
• have poorer survival. 

Funded by the National Institute for Health Research (NIHR), our recent study sought to understand and identify ways to improve hospital-based cancer care and treatment for people with dementia. In two National Health Service (NHS) Trusts, we undertook interviews, observations, and medical record review, involving people with dementia and comorbid cancer, informal caregivers, and hospital staff.

We found that dementia complicates cancer care in a range of ways across the cancer pathway. Oncology staff were often working ‘without the full picture’, due to variable documenting of dementia in medical records and limited dementia training. These professionals can struggle to provide the highly individualised, flexible care required by people with dementia in high volume, tightly scheduled, protocol-driven oncology environments.

Dementia-friendly, that was our main concern. Some of the doctors, him that removed me from that room, he doesn’t have that personal touch, yes. He didn’t know that she had dementia [Sister of a lady with dementia and comorbid cancer]

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 [Consultant Oncologist]

We also found that people with dementia and their families could feel confused and uninformed due to difficulties understanding, retaining, and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home.

P1: a Doctor, Professor, you think well you've got to take your dictionary in with you, but he came down to our level…

P2: And my level

[Lady with dementia and comorbid cancer and granddaughter]

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 [Consultant Surgeon]

Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. But the emotional and practical burdens could weigh upon caregivers, and some relatives found treatment decision-making stressful, especially if there were disagreements between stakeholders.

Can’t see how you would ever be able to treat someone with dementia, if you didn’t have, sort of, support from either an advocate, or a carer, or a family member. Because if these patients can’t verbalise any problems, then it’s dangerous [Lung Clinical Nurse Specialist]

They might push to say, well she should have the operation…when you’ve got family, everyone has got an opinion, but they don’t know the whole picture [Daughter of lady with dementia and comorbid cancer]

We are pleased to say that our findings suggest there are several practical strategies and interventions with the potential to improve cancer care and treatment for people with dementia and their families. We detail these in our paper in Age and Ageing. Though some strategies require longer-term planning and financing by service managers, many are immediately implementable by individual staff at minimal or no cost. For example, providing accessible take-away summaries of key information, perhaps by using visuals such as a body outline marked to help explain tumour location and size. Other options include signposting carers and patients to the growing number of free supportive resources designed specifically for people coping with both cancer and dementia, such as a new online peer-support forum, developed by our team and hosted by the Alzheimer’s Society, for carers of people with dementia and comorbid cancer.

Read the Age and Ageing paper Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study