Talking about cancer and dementia

A researcher has joined forces with our online community to create a supportive area for people who care for someone who has both dementia and cancer.

The number of people living with dementia in the UK is set to rise to one million in the next three years.

By then, almost half of the population can expect to be diagnosed with cancer during their lifetime. Clearly, a growing number of people with dementia will also have cancer at some point.

Not much is known about what life is like for people who have both dementia and cancer – very little research has explored their unique experiences and needs.

The same goes for the experiences of family members and friends who care for them, and the specific challenges they face.

Mollie Price is a psychology PhD student at Leeds Beckett University. Interviewing the carers of people with dementia and cancer has allowed her to piece together a better understanding of their experiences, challenges and needs.

walking together

‘Many carers said that, although they were given information about cancer and about dementia, they received very little information about this specific combination of conditions and how they might interact, with poor co-ordination between specialists.'
- Mollie Price, psychology PhD student

Mollie goes on to say, 'They wanted tailored information and to speak to others caring for a person with dementia and cancer, and to read their experiences.’

Mollie has now teamed up with Serena Snoad, who manages Talking Point – our online community where 65,000 members have free, round-the-clock access to ask and answer questions, offload concerns and share experiences.

Mollie and Serena launched a specific area on Talking Point dedicated to people caring for someone living with both dementia and cancer.

‘One of the benefits of online support is that it is easily accessible 24/7 from home.'
- Mollie Price, psychology PhD student

This addresses some of the barriers of face-to-face support groups, which can be difficult to attend due to caring responsibilities, particularly when caring for a person with multiple conditions.

‘We hope that, by creating a designated area, these carers can access a social support network of others who understand the unique challenges they face.

This project is part of a larger dementia and cancer research programme at Leeds Beckett University. Other projects are looking at effective hospital-based cancer treatment, and the care and support needs of people living independently or in a care home.

Our healthcare system typically assumes that people have one long-term condition, and there is a lack of support for people affected by more than one.

The dedicated area on Talking Point is, to our knowledge, the first digital research project of its kind.

It gives carers the chance to talk about their experiences and find practical and emotional support.

Mollie will find out what aspects of the area have been most useful and what support these carers would like to see in the future, drawing on the online conversations and through a survey.

During the project, people will get the chance to have their questions answered by cancer and dementia experts through the special area. The first of these Q&A events took place in January with Lorraine Burgess, a Macmillan dementia nurse consultant at the Christie Hospital in Manchester.

Join Talking Point

Join Talking Point and search 'cancer and dementia' to find the dedicated area.

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Care and cure magazine: Spring 19

Care and cure is the research magazine of Alzheimer's Society is for anyone interested in dementia research.
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Care and cure is the research magazine of Alzheimer's Society is for anyone interested in dementia research.
Subscribe now
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