The challenges of living with both cancer and dementia
Admiral Nurse Debby Veigas on the challenges that caring for someone with dementia and cancer brings.
Over 850,000 people are living with dementia in the UK, and over 350,000 people are diagnosed with cancer each year. Inevitably, there will be crossover, meaning there are people living in the community with both conditions. This puts our health and social care systems, and the families which they support, under intense strain. Throughout my years working in Specialist Palliative Care and latterly as an End of Life Care Admiral Nurse, I have seen first-hand the challenges that a dual diagnosis of cancer and dementia can bring.
I hear only too often that families feel that they have “been given two life sentences” or are trying to navigate through systems that are not set up for more than one illness – the emotional and practical burden is immense.
One of the challenges of advanced dementia is that people who are diagnosed can sometimes find it difficult to communicate. This can present a problem when the person with dementia needs to express any pain or distress due to cancer symptoms. Symptom history can sometimes be mixed up, or even forgotten by the individuals and clinicians as a result.
Family carers meanwhile can be overwhelmed by separate or even joint appointments and check-ups for their cancer and dementia. There are also tough decisions about planning for the future and treatment.
As an End of Life Care Admiral Nurse specialising in Palliative Care, I provide support and coordination to help the person with dementia and their families navigate these challenging times. This includes access to good symptom management, emotional and support, advance care planning (which enables people to make plans about their future healthcare) as well as education about dementia and its interaction with other conditions.
I recently supported a person with cancer and dementia and their family. Communication was difficult because of the person’s advanced dementia, but also because their cancer was in a private area of their body. This meant that managing pain and wound dressings on the tumour also became complicated not just for the family but for the healthcare professionals too. The family were getting pulled emotionally in every direction.
On my very first visit, I listened to their journey and carried out an assessment to ensure that symptoms, treatment options and future care were discussed as early as possible. Following this, there was a marked improvement in managing symptoms and the care they received. Having all of these decision plans in place meant that at the end of life the family member died peacefully in a hospice, their preferred place of death.
The role of an Admiral Nurse is about giving families vital emotional and practical support to make the most of the present moment and to feel more secure about the future. We look at myriad factors which allows the person and their families to be seen as individuals with specific needs. Whether a family is facing a diagnosis of dementia, cancer or even both, we should never allow these diagnoses to define them in a life which is multi-faceted and rich in experience.