The untold cost of caregiving: We all have a role to play

There is a memory from my medical school days that has stuck with me for decades. It’s one I’ve shared often and may have played a hand in my professional path. I came home for a medical school break and was enjoying a visit with my grandparents. We were sitting around the dining room table as we had many times, but this time was different. My grandfather’s Alzheimer’s disease symptoms had progressed since my last visit. He was a silent bystander to our family conversation that day, until, without warning, he slammed his fist on table with such force that everything shook. He stood up, agitated and upset, and ran out the front door. I followed him as he wandered the neighborhood. Eventually, I was able to bring him back inside. This was a marked change from the quiet, gentle man I had known. Although I would learn more about the progression of Alzheimer’s disease symptoms, that day, I was sure of one thing. I turned to my grandmother and said, “you can’t do this by yourself anymore.” She had been caring for my grandfather all on her own for many years with little support. Shortly after, my grandfather was moved to long-term care.

Nearly half of caregivers in the U.S. who provide care for an older adult do so for someone living with Alzheimer's disease or dementia. As America ages, these numbers are expected to grow exponentially. During my decades of experience working with people who live with Alzheimer’s disease I’ve seen first-hand the detrimental impact this condition has on the family and caregivers. The impact is especially hard on the “sandwich generation,” a term describing people who are navigating the trifecta of caring for a loved one, juggling a career, and the pressures of parenting children of their own. The complexities of care, financial burden, and human toll it takes for someone to care for people suffering from Alzheimer’s disease are staggering. Worse, these challenges go largely unnoticed and unsupported by resources in our communities.

Half of sandwich generation caregivers caring for loved ones with Alzheimer’s disease or dementia feel as though they are drowning and unprepared for the role, according to a new survey conducted by Wakefield Research and sponsored by Otsuka America Pharmaceutical. Nearly two-thirds (65%) of caregivers surveyed say that their role is more stressful than any job they’ve held in the past. They have paid a heavy price, with caregiving taking a toll on nearly every aspect of their lives, putting their finances, mental health, and jobs on the line. The impact is even greater among sandwich generation caregivers with 72% reporting they have had to cut back on spending for necessities such as food, tapping into retirement or personal savings, or cut back on their own medical care expenses.

Despite the heavy load they are carrying, two thirds (66%) of Alzheimer’s disease and dementia caregivers report feeling undervalued by society, believing society values career over caregiving.

Alzheimer’s disease and dementia caregivers shoulder a heavy burden, struggling to manage it all, every day. Undeniably, being a family caregiver is not a responsibility that is chosen; it is circumstance and obligation that most, if not all, family caregivers, are thrust into. But that doesn’t make them any less worthy of support for the vital role they play. There are, of course, silver linings. Mixed in with the stress of this role, the majority (55%) of caregivers surveyed describe their role as the most important responsibility they’ve ever had. Seeing these numbers and reflecting on my own experiences, it’s clear family caregivers are lacking tangible, practical resources to help navigate hard moments. One in nine Americans aged 65 and older has Alzheimer’s disease, and millions of families in our country will be affected by Alzheimer’s disease at one point. Alzheimer’s disease and dementia are still not approached with the same priority and urgency as our physical health. Working at a company that recognizes the challenging and critical role family caregivers play for people living with Alzheimer’s disease has affirmed for me what’s possible when we all work together to raise awareness for the needs of caregivers. In November, Otsuka announced a corporate caregiver commitment, deepening the company’s work in advocating for visibility and support of caregivers, providing tangible tools to address their needs and to make a meaningful impact in their lives. The company is also introducing caregiver benefits to Otsuka employees. It has prompted me to think about what could be achieved if all come together to address the caregiver crisis, which will continue to grow as the population ages.

We have the potential to improve the future for caregivers if we all do our part. Caregivers shouldn’t have to live in crisis to do the most vital tasks in our society. My hope is our government officials will use their platforms to ensure caregivers are protected and supported. My ask of my peers in the medical community and fellow leaders in health care is that we commit to work together to ignite greater awareness for the gaps in support that have left Alzheimer’s disease caregivers in our country struggling to care for their loved one, often at the expense of their health. As for the rest of us, we all know a caregiver. The next time you speak to them, ask them how they’re doing. Ask them what they’re going through. The more we understand their challenges and needs, the more we can understand where they need support and the value they bring.

John Kraus, MD, PhD is the executive vice president and chief medical officer of Otsuka. With 25 years of experience in clinical, academic, pharmaceutical medicine and drug development, John is passionate about creating new products for better health worldwide.