Who Cares for the Carers?

Teva’s research shows that approximately 43% of the global population are caregivers. But only when you look behind the numbers do you realise the true extent of what carers are doing – and what it’s doing to them.

“On good days he’s my dad, on bad days he hides under the duvet afraid of the world,” says Teena Gates, who is a full time carer for Terry, her 95-year-old father.

In 2018, Terry fell and suffered a serious head injury while out shopping with his daughter in Dublin, Ireland. This led to him developing vascular dementia.

At the time Teena was working full time as a journalist. She had a busy social life too, which included mountain climbing, amongst other things. All that is gone now.

“For me, at least, I found there are so many things that I had to wave goodbye to,” she says. “I would be lying if I didn’t say I miss those things, but Dad’s more important.”

In the dark

Teena is one member of a vast army of dedicated and often unheralded caregivers; an army so big that Teva’s research found approximately 43% of the global population supports a family member or loved one with chronic or long-term medical conditions 01.

“When I interviewed carers for news reports I thought I knew what caring 24/7 meant,” Teena says of her time working in TV and radio. “I now realise that I didn’t. Even with the greatest amount of empathy and imagination, it’s not until you find yourself living in the situation that you finally understand it.”

At Teva we have worked directly with patients for decades to better understand their experiences and how we can use our knowledge and resources to improve their lives.

We thought we understood caregivers too. But, just like Teena before her dad had his fall, we didn’t.

Only when we undertook global research into the magnitude of caregiving did we begin to get a sense of quite how extraordinary the breadth and impact of caring was.

Critical support

The fact that almost half the global population consider themselves carers is staggering. Setting aside their personal stories for a moment, just think about how they are helping us all; how critical their work is in supporting our healthcare systems. It’s difficult to think how our doctors’ surgeries and hospitals would cope without them.

But our survey also revealed the impact their efforts were having on carers’ own lives and health.

More than one in five (22%) say they have completely altered their daily routine as a result of becoming a carer, while almost a third (28%) say their role as a caregiver has negatively impacted their other relationships. A similar proportion (32%) say caring has taken a large emotional toll on them.

Marc Lawrence knows the effect caring can have on body and mind – and how time and experience often don’t improve that impact. He was thrust into full-time caregiving when his wife suffered a debilitating stroke at the age of 49.

“When you’re dealing with long-term chronic conditions, caregiving often doesn’t get easier over time,” he says. “In fact, it’s likely that you and the person you’re caring for are fighting a battle against time.”

The new normal

This fight has only been made more difficult by the COVID-19 pandemic. Indeed, caregivers are on the front line of the “new normal”, says Susanne White who cares for her parents in Brooklyn, New York.

It’s a front line they have no choice but to fight on.

“As all caregivers know, waving the white flag and surrendering to challenge is never an option. Already stretched thin and compromised by the role of caregiving itself, we are now presented with a new obstacle course,” Susanne says. “One with new rules, new territory to get through, and an ever-moving target.”

Teena, Susanne and Marc all share their experiences and offer peer-to-peer support for those in similar positions to them on Life Effects, a digital hub that forms part of Teva’s growing collaboration with carers.

Through collaborations like this, Teva has come to recognize just how important a role caregivers play in patients’ health, whether they are parents, children, siblings, friends or neighbors. In turn, we are learning more about how we can better support them to support patients.

The importance of empathy is one example of this, a point Marc makes powerfully in one of his articles.

“Sympathy is sharing someone else’s pain and is all in your head,” Marc says. “When it comes to caregiving, empathy is more powerful and helpful. Try to see the person’s life from his or her perspective and use that knowledge to improve the quality of life and care.”

Listen and learn

Insights like this help inform Teva’s new platforms and resources for carers, which are being developed alongside those we already provide for patients. Our colleagues are now pioneering caregiver programs around the world, from the Americas, to Europe, the Middle East, and Russia.

In Chile, we offer online guidance on coping with disease and developing relationships with healthcare professionals, as well as a web-based platform with videos showcasing the right questions to ask physicians.

Almost 14,000km away in Ukraine, we have created a new social media channel that reaches approximately 400,000 patients and caregivers each month. We have also developed user-friendly Q&As for 50 medicines that are available via QR codes on packages.

Using our data, we discovered that in Canada more than 80% of caregivers pick up medication for those they are looking after. This knowledge, combined with the fact that pharmacists are a highly trusted and accessible resource for carers, led us to launch the Caregiver-Friendly Pharmacy (CFP) program.

This initiative offers accredited training for pharmacy teams and online resources for caregivers. Further support comes from a mapping tool, which helps carers find a pharmacy in their local area that specializes in their needs.

We are also mindful of caregivers within our own ranks. In Israel we not only have a large caregivers’ Facebook community – a safe space where they can ask questions, share experiences and seek emotional support – but also extensive support for our staff who have caring duties. This includes:

• More flexibility in work hours;
• Increase in number of sick days taken to care for a family member (as part of the employees total sick leave)
• Economic benefits

No regrets

At Teva we’ve made great strides in understanding and helping carers, but we’ve only started out on our journey to help them – particularly the one-in-four (24%) who feel they do not have enough support to properly care for the individual they’re caring for.

“I have never doubted or regretted the decision [to become a carer] for an instant and seeing his blue eyes crinkle into a smile is the biggest reward I could ever hope for,” says Teena. “I love my dad and he loves me.”

We will continue to listen and to learn how we can do more with and for people like Teena. Not just because carers help keep our healthcare systems running and enable us to better understand patients and how to treat them. But because there are countless people out there, like Marc, Susanna, and Teena who go about their duties selflessly day-in, day-out. They don’t want our sympathy, but they do want our empathy. And, should they need it, they also deserve our help.

To read more about the reality of being a caregiver, visit the Patients and Caregivers section of our website, where there are additional resources and content available.

Footnotes

1. Back to contents.

   Teva Brand Research, 2020. Teva’s Primary Global Brand Activation Research. Switzerland: 2015-2020

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen. 

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