Who are “adult children of aging parents”?
November 19, 2015 § Leave a comment
They are men and women, in their 20s, their 40s, their 60s, and older. They live in cities and suburbs and small towns. They represent all ethnic, religious, and socio-economic groups. Sometimes their parents live with them. Sometimes their parents live far away. Many have full-time jobs and kids of their own.
“They” are adult children of aging parents. Sometimes known as “caregivers,” they are a large and diverse group, a group that plays a critical role in our healthcare system.
Earlier this year, Commonwealth Care Alliance conducted some research to better understand the needs, aspirations, and frustrations of caregivers. Through the research, we learned a great deal about the world of caregivers.
A range of emotions
For example, discussions revealed that adult children of aging parents experience complex emotions when fulfilling their caregiving duties. Some said they felt “overwhelmed” or “frustrated,” or “sad.” But, at the same time, many caregivers said that helping their parents made them feel “proud” and that caregiving fits with their sense of personal responsibility and cultural identity.
One caregiver described the conflicting emotions that come with supporting a loved one: “Most of the time you’re always thinking of what you’re dealing with yourself. You’re like ‘I got to do this for mom, I got to do this for dad, I got to do this,’ and it’s inside your head that you’re trying to do so much.”
The need to know more
Beyond emotions, the discussions uncovered a range of practical considerations that face caregivers. For example, many expressed the desire for more and better information. As one participant put it: “You can find the information online, it’s just fragmented. It just takes a lot of work. Sometimes you have to go through a lot of different websites.”
Specifically, focus group participants said that they need to know more about health insurance eligibility and coverage, conditions, treatments, and medication. They also had questions about home care, housing, senior services, transportation, legal needs, and finding appropriate providers.
A call for help
In the focus groups, many participants said that, despite their efforts to take control and of their parent’s care and stick to a regular schedule of visits and communication, many factors can quickly and dramatically change their plans. The parent’s health, other family situations, poor weather, traffic, and a host of other factors frequently complicate caregiving, they reported.
Several caregivers reported that they lacked reliable support systems within their family, forcing them to take on more responsibilities or investigate external services and supports. A need for help – while still maintaining control and responsibility for their parents’ care – was a common theme in the focus groups.
As one caregiver explained: “I think for me I’m just more looking for someone that can do the communication, be a middle person between us and the hospital so you don’t spend so much time on the phone trying to research or call the facilities or trying to figure out what it is. Someone that just takes initiative to take that part off your plate.”
Caregivers are a crucial part of the healthcare system
AARP estimates that there are about 44 million adults serving as caregivers in the US today, or about 21% of the adult population. In all, AARP says that caregiving takes place in some 22.9 million American households. It’s a dramatic understatement to say that caregivers play a critical role in our elder care system.
While our research uncovered the stresses and challenges of this work, we also heard many stories of compassion, satisfaction, and joy. Caregiving is, at times, a burden and a source of frustration, but more often than not, it’s a deeply rewarding “labor of love.” At Commonwealth Care Alliance, we look forward to learning more about caregivers, finding better ways to work with them, and creating more and more opportunities to recognize and reward them for their vital contributions.