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Too few specialist dementia nurses speak about death, suggests study

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Nurses must be instilled with greater confidence to speak about the terminal nature of dementia with patients and carers, researchers have warned as a new study shows too many professionals are avoiding the subject.

The research, published in the International Journal of Geriatric Psychiatry, found that three out of five specialists from memory services did not routinely tell family carers that dementia is a fatal condition.

“It’s shocking to see that these difficult but important conversations are often still not happening”

Sally Copley

Memory clinics assess and diagnose dementia and provide information and support to patients and those who look after them at home. They are usually staffed by a multi-disciplinary team including doctors, specialist dementia nurses, occupational therapists and psychologists.

The study found that, while health professionals routinely talked to families about legal arrangements such as finances (74%) and referred to dementia as being progressive (89%), just 41% routinely discussed the terminal nature of the condition.

However, most workers (89%) agreed conversations around death were in line with their role.

Commons reasons given for not broaching the topic included the belief that the condition had not progressed enough to discuss end of life or that the discussion was inconsistent with a “living well” approach to care.

Other commonly cited reasons were that people with dementia were resistant to the conversation and that discussions on spirituality crossing professional boundaries.

The study, carried out by a Marie Curie research team at University College London (UCL) and supported by the charity the Alzheimer’s Society, also found a service’s capacity to have follow-up conversations with carers impacted on its ability to tackle the subject of death.

The findings are consistent with European research, which shows only 43% of family carers considered dementia a disease you can die from.

“It’s vital that all healthcare staff receive the appropriate training and clinical support”

Kirsten Moore

Dr Kirsten Moore, senior research fellow at the UCL Marie Curie palliative care research department, called for healthcare staff to receive better training to help them talk about death with dementia patients and their carers.

She suggested that memory clinics could employ a dedicated clinician to have these conversations. 

University College London/Marie Curie

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Kirsten Moore

“It’s vital that all healthcare staff receive the appropriate training and clinical support to have the confidence and knowledge to talk to patients and their carers about death and dying,” Dr Moore said.

“Having a dedicated clinician to address these issues within the memory clinic may be one way of ensuring discussions become a routine part of practice,” she added.

“Often it is starting these conversations that is the difficult part,” she said. “If you can offer an opportunity for a discussion, many family carers will often have concerns or questions they have been unsure about who to ask.”

Sally Copley, policy director at Alzheimer’s Society, which part-funded the research, said: “We funded this research to find out if stigma persists around talking to people with dementia about the later stages of the condition, and it’s shocking to see that – at least in the memory clinics where this study took place – these difficult but important conversations are often still not happening.

“This is unfair and unacceptable: it doesn’t give people a chance to prepare, make decisions and take control of their future,” she added.

Ms Copley highlighted that the National Institute for Health and Care Excellence (NICE) had “clear guidelines” specifying that conversions about end of life should be offered early.

She said: “Better training needs to be put in place to create a culture shift, improving attitudes.”

Dementia is the leading cause of death in the UK, with 850,000 people currently diagnosed.

The study – titled The Role of the Memory Service in Helping Carers to Prepare for End of Life: A Mixed Methods Study – involved a survey and interviews with clinicians working in UK memory clinics accredited by the Memory Services National Accreditation Programme.

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