Consultant role bridges the gap

Little is known about how many people in the UK have both cancer and dementia, and support for patients is lacking. Macmillan Cancer Support and The Christie NHS Foundation Trust have created a new nursing role to improve service provision for people with this joint diagnosis and understanding of the issues they face.

The risks of developing cancer and dementia increase as people get older, but there is little research into how many people in the UK are living with this joint diagnosis.

According to the charity Macmillan Cancer Support, there is often poor recognition and understanding of the issues faced by people with both cancer and dementia, and support is woefully lacking.

Lorraine Burgess (pictured right): ‘Dementia is often blamed when patients become distressed, when they might be in pain or discomfort from the cancer’

Picture credit: John Houlihan

To address this, Macmillan joined forces with The Christie NHS Foundation Trust in Manchester, one of the largest cancer treatment centres in Europe, to create a new nursing role. The first Macmillan dementia consultant nurse in the UK, Lorraine Burgess, was appointed in July last year.

A dementia care specialist, Ms Burgess is passionate about bridging the gap in service provision for patients with dementia and cancer. Her role involves supporting patients and undertaking palliative care work, as well as training and educating health professionals.

‘I want to give staff the skills, knowledge and confidence to improve the service,’ she says.

‘Dementia is often blamed when patients become distressed or agitated, when they might be in pain or discomfort from the cancer or the side effects of treatment. If they cannot articulate this, they suffer in silence.’

People with dementia are also at greater risk of experiencing delirium, says Ms Burgess, a risk that increases when they are admitted to hospital.

‘I make sure staff are alerted when a patient with dementia arrives on a ward,’ she says. ‘I check that the patient has regular pain relief, is getting enough to eat and drink and is not constipated.’

Consent to treatment

If an oncologist or clinical nurse specialist is concerned that a patient does not have the mental capacity to give informed consent, they can refer the patient to Ms Burgess. If a patient has not yet been diagnosed with dementia, she can carry out cognitive tests to assess mental function.

A male patient about to start chemotherapy at home was referred to Ms Burgess because he seemed to be struggling to understand how he might be affected by the treatment. Although he feared he had dementia, he did not want to know.

‘We talked about his risk of developing dementia, and about the risks associated with chemotherapy that could affect his concentration and memory. I was happy that he understood the key issues, so he went ahead with the treatment,’ she says.

Ms Burgess adds it is vital that healthcare professionals look at the bigger picture and do not blame dementia for every symptom or behaviour. ‘Get to know as much as possible about your patient and their life history, and always listen to their carers,’ she says.

‘If a wife says her husband has dementia but has never been this confused, it is a clue that acute physical illness may be the cause. And never underestimate the impact of pain’.

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