Supporting carers of people with both dementia and cancer

Mollie Price, researcher at the Leeds Beckett University is working with Alzheimer’s Society to support the carers of people with dementia as well as cancer. Here she tells us why she’s taken on this vital and unique area of research and how you can get involved.

Dementia and Cancer

As a population we are living longer, which has led to more and more people living with more than one long-term condition. Cancer and dementia are conditions that affect many older people. Despite this, the needs of people with both conditions are not well understood.

Research shows that people who have dementia as well as cancer are diagnosed later, receive less treatment, and have poorer survival rates than people who have cancer but not dementia. 

Research into care for carers

Carers play a vital role supporting people with dementia, particularly in helping them to navigate healthcare systems. I was inspired to focus my research on supporting family carers as, although the care they provide is incredibly important it is often forgotten. 

Carer: 'This is the big, big issue. When someone is living well with dementia, but when another condition comes along, the person with dementia cannot assist a clinician to make the right diagnosis.' 

Dementia and cancer

Carers are not only invaluable to the people they care for, but also have an invaluable economic role in society. It would be financially impossible for the health and social care systems to replace the care they provide. I believe it’s important to create and improve support for carers of people with dementia and cancer so that they can continue to support their loved ones. 

I recently interviewed family carers of people with dementia and cancer to find out about the experiences and challenges they face as well as the support they need. I have used their experiences and insights to find a way to support them and to make recommendations of how the health and social care could be improved.

A safe space for carers

I have now teamed up with Alzheimer’s Society to launch a forum on their online community ‘Talking Point’. The forum is dedicated to dementia and cancer to help support carers of those affected by both conditions. Through the forum, we want to provide carers of people with dementia and cancer with a social support network of others who understand the unique challenges they may face. 

We hope it will be also be a space for them to share their own experiences and seek practical and emotional support from others. As this stage the forum is a 6 month pilot and I will be asking for feedback and ideas from carers using the forum.

Talking Point
Visit our online community to get advice, share experiences, connect.

Carer: 'When your partner has dementia, you’re fighting it alone. You really are. And you’re pulling a weight with you, which is lack of cognition that your partner has. And also seeing him suffer, and not being able to help it or even to explain it in a way that he could truly understand or retain the knowledge, he might understand it in the moment but then he would forget. And that’s very hard to see. In many ways I imagine it’s like having a child and not being able to make them understand why they have to suffer.' 

We will be hosting a ‘Question and Answer’ session on the forum with experts in dementia and cancer, such as an Oncology Research Nurse and a Macmillan Dementia Nurse. I hope these will be extremely valuable and informative for those affected by dementia and cancer. 

How can people get involved?

If you are a carer of someone with dementia and cancer, join the discussion on Talking point.

We will be hosting dementia and cancer Q&As in the new year, so we would love to hear your suggestions and requests for specific  topics. We'd also like to hear from experts and potential Q&A hosts on the forum.

For more information about this project, feel free to email me, Mollie Price at [email protected]

Through the online support forum, I hope to provide carers of people with dementia and cancer with peer support from others experiencing this unique situation. I hope carers will find it a space where they can find information and practical support for coping with dementia and cancer.

Caring for a person with dementia and cancer

Join our forum on Talking Point. A place for people who are caring for someone who has both dementia and cancer.

This space will provide a support network and a place to seek practical and emotional support, tailored information and Q&A events.

Join the discussion
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Good Morning I have a sister who is profoundly deaf since birth she has hearing aids but has always found it easier to understand people better by lip reading as well. Her Husband has myeloma and has dementia which I am lead to believe is accelerating fast, although my sister(who is carer) has people to help she is finding it increasingly difficult to understand all the advice she is now receiving as her advisors cant seem to grasp her disability, by talking to fast, talking with head turn so she cant read lips, etc. Is there any advice you could give me to help her with this spiralling problem. Kind Regards Mr V Howton

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