There are some diseases whose reach extends beyond the person who has it.
Says American Cancer Society chief cancer control officer Dr Richard Wender: “Cancer is a disease in the entire family, it’s not just a disease affecting the person who has it.”
It demands emotional, financial, mental, physical and temporal investment on the part of the patient’s loved ones, and no one more than the patient’s primary caregiver.
Due to the nature of the disease and its treatments, most cancer patients often need someone by their side to help care for them.
In Malaysia, Malaysian Oncological Society president Dr Matin Mellor Abdullah shares that there are three such types of persons: paid professional carers, who are usually trained nurses; paid domestic help, i.e. maids; and unpaid voluntary carers, who are usually family members.
The consultant clinical oncologist and radiotherapist notes: “As far as unpaid carers are concerned, no one plans to be one – you’re kind of thrust into the position by virtue of the fact that by some ill luck, someone in the family has gotten cancer and they are entrusted to look after this patient.
“Obviously, the stress of the fact that they are untrained (to handle the situation) makes it very difficult.”
Despite the critical importance of the caregiver’s role in the cancer patient’s journey, they have not always been given the attention they deserve.
As Brazilian Federation of Philanthropic Breast Health Support Institutions (Femama) president Dr Maira Caleffi points out: “A few years back, we used to say that the metastatic cancer patients were invisible.
“Now, we’ve found another group (the carers).”
A heavy burden
Unsurprisingly, many caregivers prioritise the welfare of the cancer patient, even at the expense of their own.
According to the Embracing Carers international survey, 42% of the unpaid cancer carers surveyed put the health of the person they are caring for ahead of their own.
In addition, not only do 54% of carers not have the time to attend, or even book, their own medical appointments – despite 55% feeling that their physical health had suffered due to their role – but over one-fifth (21%) even feel worried about asking for help to address their own health!
“They are like the mothers who put everyone in the family ahead of themselves,” comments Dr Caleffi.
It’s really no surprise that more than half of the caregivers surveyed feel their health had declined when three in five cannot find the time to exercise, almost half have experienced fluctuations in their weight as a direct consequence of caregiving, and 58% regularly find it difficult to sleep.
When it comes to their job, over one in five carers had to reduce the number of hours they work in order to care for the cancer patient, while the same number felt that their career had been negatively affected by their caregiving.
Perhaps that is why 30% feel that their financial situation has been affected by their caregiving role.
And while 85% felt that they are supported in their role by their family, 21% think that their relationship with their family has been negatively affected by their caregiving duties.
Likewise, while 83% of carers feel supported in their caregiving role by healthcare professionals, almost three in 10 feel that their role is not recognised by their healthcare system. Over a quarter (26%) have not received any information and/or practical support in the last 12 months.
“Most of the time, the feeling is insecurity, because they have never been trained to do that (take care of a cancer patient). And they are 100% in charge of the patient,” says Dr Caleffi.
Nearly half of the carers (47%) surveyed also reported feelings of depression, with 57% feeling that they needed medical support for their mental health.
The survey, initiated by pharmaceutical company Merck, included 3,516 unpaid and unprofessional carers aged 18-75 years old across a number of countries, including Australia, France, Germany, Italy, Spain, Britain and the United States.
Caregiving in China
China was the only Asian country included in the survey and had 500 respondents.
Merck Biopharma Taiwan general manager Ee Boon Huey points out that the country has the unique situation of one person potentially having to care for both their parents and four grandparents, due to China’s 35-year-long one-child policy.
“So, if you basically think about this burden to the carers, it is actually mindboggling. It is a huge burden that has to be discussed for China,” she says.
According to the survey, over two-thirds (68%) of Chinese carers play that role for either their parent or parent-in-law.
While almost all (98%) feel supported by their families, over half (55%) feel they do not get to spend as much time with their children as they would like due to their responsibilities.
Similarly, nearly half (48%) have had to reduce the hours they work in order to care for the cancer patient.
And over a third (35%) of carers living in suburban areas feel that their role has put pressure on their finances.
Related to their own health, over three-quarters (77%) of the carers feel tired most of the time and 43% have feelings of depression.
However, nearly two-thirds (65%) do not have the time to book or attend medical appointments for themselves. In fact, three-quarters of carers in rural areas say that it worries them to ask for help to address their own health.
Over half (58%) of rural area carers also feel a lot of pressure to be a caregiver, compared to less than a quarter (23%) in urban areas.
Sixty percent of carers rightfully see their caregiver role as a second job.
While a majority of the carers feel supported by both the Chinese government (83%) and their local health authority/services (88%), over half (54%) still feel that their role is unrecognised by their healthcare system.
Interestingly, Ee shares that close to 70% feel it is essential that they share their experiences with other caregivers through social media – in this case, likely through the messaging app WeChat, which is very popular in China.
“Over 700 million Chinese are connected on social media – they are very tech-savvy. And this includes the elderly who are more than 65 – they are on WeChat,” she says.
The international online survey was done as part of Merck’s Embracing Carers initiative, which aims to better recognise and support cancer caregivers in their role.
Dr Wender, Dr Caleffi and Ee were speaking at the Mobilising Oncology Carers Globally session sponsored by the company at the World Cancer Congress 2018 held in Kuala Lumpur from Oct 1 to 4, 2018.