It is one of the few jobs you can’t train for. There are no university studies, no online preparation for this daunting, sometimes debilitating task. And what’s more, it's difficult to say no.
Caring for a loved one with cancer
Caring for a loved one is an exercise in advanced family dynamics, a labor through often complex channels of healthcare on a grueling physical and emotional journey. Millions of people around the world are compromising their personal and professional lives to care for family members with cancer. It is a duty that comes with scant reward and, often, little support.
Olga Budimir is just one of the millions. She gave up her demanding job in advertising to care for her father who was diagnosed with Mantle Cell Lymphoma. She had spent weekends traveling 170 miles from her home in London, UK, to look after him and her mother who suffers from osteoporosis, arthritis and anemia before taking on the role full time.
“He was diagnosed at the age of 91. He had his first chemo a month later on his 92nd birthday,” says Olga, 58. “I had no social life and I had to give up living at home for a long period. I cooked the food they liked, I did the things they liked, I went where they wanted to go.”
“At first it wasn't difficult as I was just trying to get into a routine of hospital visits and treatment paths. But after about four months I started to struggle with my identity. All I seemed to be was my father's carer and everything I did was about him.”
“Mum and Dad were scared of what lay ahead (as was I) and so sometimes could be difficult to deal with. I also felt that I was dealing with the impending death of my father and yet the emotional impact on me wasn’t considered. I did manage to maintain a hobby marshalling with motorbike racing due to the support of my siblings and it was one of the few things that I had that was about me. It kept me balanced. I initially didn’t see myself as a carer, so didn't look for advice for me.”
The emotional and physical impact of cancer
The sense of solitude combined with the demanding task of negotiating with big institutions for social and healthcare can take a fearful toll. Carers UK, a charity dedicated to supporting more than 6.5 million carers, revealed that 61% of carers are at increased risk of poor physical health, while 70% see their mental health deteriorate, and 51% let their own health problems go untreated.
The unsung heroes of cancer care are not only putting their lives on hold; they are putting them at risk. Medical science and diagnostics are charging ahead with therapies that decode the most complex cancers while diagnostics and monitoring systems are streamlining care and making it easier for patients to take treatment at home and preserve their independence.
Yet, the carers have been, until recently, left adrift.
Advancements in health tech: introducing a new approach to care
Although social care continues to be spread thin, technology is providing a lifeline for carers. Olga got vital help from the Carers UK app, Jointly, which co-ordinates a range of tasks from hospital appointments through medication regimes.
It is part of a growing field of technology developments that is being harvested for the carer.
“Almost all of us will care at some point in our lives but very few of us are prepared for it,” says Madeleine Starr, Carers UK’s Director of Business Development and Innovation. “Our research shows that carers missing out on support can result in negative health consequences. Carers often give up work and their finances also take an even bigger hit. Technology has a significant role to play in preventing these challenges facing carers.”
The charity Macmillan Cancer Support identified that the number of people caring for someone with cancer in the UK has soared from 1.1 million in 2011 to 1.5 million in 2016, and the average number of hours they spend looking after someone has risen from 15 hours to 17.5 hours.
It has devised the Electronic Holistic Needs Assessment (eHNA), a free tech tool, downloaded via a tablet or smartphone, that allows carers’ needs to be accounted. Danny Bell, Macmillan’s specialist advisor for Treatment and Recovery, says: “The eHNA also captures carer concerns, for example, if the patient has caring responsibilities or is worried about someone caring for them. The assumption is that as the eHNA improves the experiences of people living with cancer, it will have a positive impact on carers too.
“For healthcare professionals, the eHNA allows them to give people personalized support as well as providing an electronic record of the HNA and care plans. The use of user-friendly technology means easier and more efficient communication and leads to more joined up care – this is incredibly beneficial for both professionals and patients. The data provided can also be instrumental in identifying trends and local service development needs."
Breast Cancer Care, the UK charity, has also developed an app, BECCA, which helps women with breast cancer and their families move forward after treatment ends.
Recognizing the impact on carers is gathering momentum and the European Cancer Patient Coalition and the European Association Working for Carers are working with the European Union to improve conditions at both policy and practical levels. They advocate enshrining carer rights and promoting access to training, health and social support for what they estimate to be Europe’s 100 million carers.
Its White Paper on cancer carers, published in October 2017, stated: “To develop effective policy for this shift in care, policymakers must look beyond traditional healthcare pathways and employment policies and acknowledge that carers continue to provide a substantial portion of care across Europe. While people with cancer are identified through diagnosis, cancer carers often remain largely anonymous despite the fundamental role they play in the healthcare pathway. Cancer carers form an integral part in the management of this devastating disease.”
The global impact of cancer
The scale of the problem is immense – the World Health Organization (WHO) reports that 14 million new cases of cancer are recorded every year with the figure predicted to rise by a staggering 70% over the next two years.
As such, the WHO has announced a series of initiatives to arrest the growing tide of morbidity and mortality of cancer but, with healthcare systems under intense financial strain, more people with cancer will be cared for by loved ones and at home.
Clinical papers have also demonstrated the high levels of strain on carers and the impact that radiates across their physical, psychological and financial well-being. But still they care.
Global figures on the number of carers are hard to define, but every country feels the burden and Canada estimates around eight million people have some role in caring.
“As technology has advanced and we’ve tried to reduce the number of hospital days for people, we’ve downloaded a lot of the work to family caregivers. You used to go into hospital the night before surgery, you used to stay in hospital longer. Now stays are shorter, more care goes on at home and we haven’t really acknowledged that,” says Vancouver palliative care specialist Dr. Romayne Gallagher.
Homer Pien, PhD, Chief Scientific Officer, Diagnosis and Treatment at Philips added, “In the case of cancer, better technology, improved understanding of disease, more effective treatment, availability of screening, as well as greater accessibility of information through the internet have all contributed to cancer patients living longer. This has made cancer a chronic disease, with many patients surviving for decades. In some instances, this has increased the need for longer-term care and that has an impact on carers.”
“Technology can alleviate that burden for carers in numerous ways. Technology provides information that eases some of the anxiety and stress for caregivers of cancer patients. They go to the hospital to find out answers to what is wrong and what can be done to treat it. The period of ‘not knowing’ can be very stressful for patients and families. Technology gives the physician the insights to provide those answers to make a confident diagnosis, and to do so more quickly and more accurately. Additionally, by putting more information at the patients’ and caregivers’ fingertips, we empower the patient to be more educated, to ask more relevant questions, to better understand the course of treatment, and overall gain greater control of the treatment regimen.”
“For example, Philips monitors, imaging systems, pathology systems, and informatics systems provide hugely valuable diagnostic information to the clinician. The Philips PerformanceBridge and the Illumeo adaptive intelligence technology is streamlining hospital procedures. These systems collectively improve both the wealth of diagnostic information, and the efficiency with which they are provided, leading to a new approach that benefits the physician, the patients and, ultimately the carers.”
“Collectively, with the availability of telemedicine, remote cameras, wearable sensors, intelligent medication dispensers, and other innovative technologies, we hope to continue helping to reduce the burden of caregivers by allowing the patients to do more, caregivers to not have to be present as often, and seek medical help more readily when needed,” adds Dr. Pien.
Olga’s father passed away last year and she is now working part-time while caring for her mother.
“I'm not sure there is a positive element of caring for a loved one other than at least I knew Dad was getting the best attention and help and it wasn't being left in the hands of Social Services. On the other hand I've never regretted my decision to give up work as my father gave his all to make sure I had a good life, so giving up work to look after him was the least I could do.”
It is technology’s task to relieve the burden and improve the lives of Olga and the millions of carers around the world.
Advice from Olga and other carers:
Recognize you are a carer
Explore information about cancer – it can help you feel in control of the situation
Be sensitive and understanding, show that you care
Consider their independence – with a new carer, the loss of this can be often difficult
Listen and take notes, and demonstrate that you are considering what they are saying
Connect with other care partners that are going through the same journey as you
Make time for yourself, even if you find it hard to at first
Seek support from your local carers organization, charity or doctor
About Innovation Matters
Innovation Matters delivers news, opinions and features about healthcare, and is focused on the professionals who work within the industry, as well as Philips as a cutting-edge health technology organization. From interviews with industry giants to how-to guides and features powered by Philips data, our goal is to deliver interesting, educational and entertaining content to empower and inspire all those who work in healthcare or related industries.
Danny Buckland is an award-winning health journalist who writes and broadcasts on healthcare technology, current affairs and features. He has worked for major national newspapers, including the Daily Mail, Daily Mirror and The Times, and magazines for more than 25 years.