Living with dementia can be challenging enough, but what’s it like if you also have a diagnosis of cancer too? We speak to Admiral Nurse Debby Veigas about the challenges faced by those caring for someone with dementia and cancer
Over 850,000 people in the UK are living with dementia, 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.
Admiral Nursing provides specialist dementia nurses who give expert practical, clinical and emotional support to families living with dementia; my role is funded by Dementia UK.
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 to be made about planning for the future and treatment.
Support and co-ordination
As an end of life care Admiral Nurse specialising in palliative care, I provide support and co-ordination to help the person with dementia, and their families, navigate these challenging times. This includes access to good symptom management, emotional 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 in every direction emotionally.
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 the management of 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 so that they can make the most of the present moment and 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.