Dr Mollie Price, a researcher at Leeds Beckett University is working with Alzheimer’s Society to support carers of people living with dementia and cancer. Here she tells us why she’s taken on this vital and unexplored 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 both conditions that affect many older people, and a significant number of people are living with both conditions.
Despite this, the needs of people with dementia and cancer are not well understood.
Research shows that people with dementia are more likely to be diagnosed with cancer at a later stage, receive less treatment, experience more treatment complications, and have poorer survival, compared to people with cancer without dementia.
Care and support for carers
The presence of dementia can make many aspects of cancer treatment more complex. For example, making decisions on cancer treatments, or managing symptoms and side effects.
Carers therefore play a vital role supporting people with dementia through the cancer care and treatment pathway.
Despite this, the experiences of carers of people with both dementia and cancer are particularly under-researched. Understanding the unique challenges faced by this carer group is necessary to developing appropriate support services.
‘I think it’s important to emphasise that living with dementia and cancer, is a very different issue from living with say cancer and a heart condition. The difficulty when somebody has short-term memory loss is that they can’t help clinicians to understand [their symptoms], and that’s where the carer comes in'
- A carer of someone living with dementia and cancer
I was inspired to focus my research on supporting family carers as, although the care they provide is incredibly important, it is often forgotten.
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.
As part of my research, I 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 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 'double' emotional burden
In the interviews, carers described their crucial role in the recognition and management of cancer symptoms; performing difficult cancer-related care; and treatment decision-making.
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. They wanted tailored information, and to speak to and learn from others caring for a person with dementia and cancer.
Carers spoke of the ‘double’ emotional burden of dementia and cancer. Many of their loved ones had a reduced insight into their cancer diagnosis and prognosis, particularly in the later stages of dementia, with carers feeling they were carrying the weight of the emotional burden alone:
One carer said:
'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.'
Need for peer support
Carers expressed a desire to connect with others who understand the unique challenges of this combination of conditions, and to read their experiences.
Despite this, none of the interviewed carers knew anyone else caring for a person with both dementia and cancer. While some had found dementia-only peer support groups beneficial, many spoke of the barriers to attending face-to-face groups, and the need for support specific to the combination of dementia and cancer.
Another Carer told me:
‘I think meeting with other carers and learning from each other is important, and sadly there are not enough opportunities for this. There seems to be no organisation that exists to help carers of people with dementia with cancer, and if someone would start it then I think it would be wonderful.’
A particular benefit of online support is that it is easily accessible 24/7 from home. This addresses some of the barriers of face-to-face support groups, which can be difficult to attend due to caring responsibilities, particular when caring for a person with multiple conditions.
An online peer support community can also facilitate bringing carers of people with dementia and cancer together, providing a community that they may not otherwise have access to offline.
A safe space for carers
I teamed up with Alzheimer’s Society to launch a forum on their online community ‘Dementia Talking Point’.
‘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.’
This is a space to share your own experiences and seek both practical and emotional support for coping with dementia and cancer.
We have previously hosted ‘Question and Answer’ sessions on the forum with an expert in dementia and cancer, Lorraine Burgess, the only Macmillan Dementia Nurse Consultant in the UK.
The dementia and cancer dedicated area on Dementia Talking Point is, to our knowledge, the first of its kind. Through the online support forum, I hope to provide carers of people with dementia and cancer with a peer support network of others who understand their unique situation.
How can people get involved?
If you are caring for someone with dementia and cancer, join the discussion on Dementia Talking Point.
Caring for a person with dementia and cancer
Join our forum on Dementia Talking Point. A place for people who are caring for someone who has both dementia and cancer.
This space provides a support network and a place to seek practical and emotional support.