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Improving experiences of radiotherapy for people living with dementia and their families

18 October, 2019
Rachael Kelley, Claire Surr and Alys Griffiths
Left to right Rachael Kelley, Claire Surr and Alys Griffiths.

A new study has found that a significant proportion of older people using radiotherapy services may have dementia.

Led by the Centre for Dementia Research at Leeds Beckett University, researchers have been looking at the prevalence of co-morbid cancer and dementia, as well as the experiences of patients with dementia who are receiving cancer treatment and care.

The 15-month long study looked at anonymised records from 391 GP practices to identify the prevalence of dementia amongst people with cancer.

The research found 7.5% of people aged 75+ with cancer had a dementia diagnosis. The researchers also discovered that people with both conditions had more complex care needs. They are more likely to have other co-morbidities and to be living in a care home than people with cancer alone.

The interviews and observations also identified complexities around providing cancer care. For example, making decisions about radiotherapy treatment is particularly complex, with challenges around capacity, understanding and remembering information, determining what is in the person’s best interests, as well as coping with treatment and potential side effects. It also made the many trips to unfamiliar hospital environments and meeting different staff more difficult to deal with.

Families play a key role in assisting people through their treatment, often on top of providing other day-to-day support. When family care is not available, it was unclear who else could provide this, with oncology staff often relied on to fill the gaps. However, staff often felt they had little or no training around how to support people living with dementia.

Additionally, dementia was not always recorded in medical records, making identification of patients who may need additional support more difficult.

Despite these challenges, the study found many examples of staff taking positive steps. These included:

  • Ensuring continuity of staff wherever possible
  • Providing simple written information about the person’s diagnosis and treatment
  • Using pictures and images to aid explanations
  • Building extra time and support into appointments
  • Organising additional preparation visits to the department

The study findings suggest departments should ensure that:

  • Oncology staff are trained to support people with dementia
  • Staff ask about and record a diagnosis of dementia in care records and radiotherapy systems
  • Both the person and their family are supported and involved in care
  • Additional needs of people without family support are considered
  • Radiotherapy environments use dementia friendly design principles

Further information

The study team are Drs Rachael Kelley and Alys Griffiths, both research fellows at the Centre for Dementia Research, Leeds Beckett University, and Professor Claire Surr, the centre's director.

The team are happy to share the study findings.

The research was carried out in collaboration with the University of Leeds, Birmingham City University, Leeds Teaching Hospitals NHS Trust, and Bradford Teaching Hospitals NHS Foundation Trust. It was funded by the National Institute for Health Research RfPB programme (project reference PB-PG-0816-20015). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.



SCoR guidance for caring for people with dementia in clinical imaging and radiotherapy is being updated. Lindsay Batty-Smith, a member of the core update development team, said, "SoR members should be mindful of the requirement to comply with the Mental Capacity Act (2005). If available, the importance of obtaining and reading a person with dementia’s ‘This is me’ information or hospital passport is also highlighted by the issues raised in the study."



Guidance on mental capacity decisions in diagnostic imaging and radiotherapy
Royal College of Nursing and The Alzheimer’s Society 'This is me' leaflet

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