As of 2020, AARP reports that there are roughly 53 million family caregivers in the United States, which translates to one in five Americans giving unpaid non-professional care to a loved one in need. These caregivers are widely seen as essential to the health and wellbeing of their care recipient, but they usually find themselves without support (physical, emotional, financial, or otherwise). Due to the immediate needs of the care recipient, medical professionals tend to ask about and treat the patient, but very little (or no) attention or assessment is given to the caregiver. This often leaves the caregiver isolated, drained, and more vulnerable to mental and physical health challenges. Let’s explore the needs of a family caregiver so we can take a step forward in proposing a solution to this problem.
Family Caregivers Need Health Support
23% of caregivers report feeling unable to care for their own health. Their responsibilities are often all-consuming, leaving them with little time to think about or tend to their own needs.
“40.7% of caregivers self-report dealing with two or more chronic diseases.” The average age for caregivers is roughly 50 years old, and many of them suffer from their own chronic and (often debilitating) health concerns. These conditions often get worse as a result of caregiving.
Family Caregivers Need Financial Support
Caregivers surveyed by the MIT AgeLab indicated that direct caregiving takes up an average of 30.8 hours per week per caregiver, and the vast majority of these respondents report having been providing care for multiple years.
This time commitment often is only possible with the sacrifice of full-time or part-time work, leaving caregivers financially depleted at worst, or set back at best. In addition to the loss of income, there are also high financial burdens caregiving can create. Caregiving costs, on average, $7,000 per year out-of-pocket per caregiver.
Family Caregivers Need Access to Education, Training, and Resources
A study conducted in the EU emphasized that family caregivers often have little-to-no training in their role, and their lack of knowledge can be a significant source of stress.
A quote from a researcher in the study makes this point clear, “[The Caregiver] knows that the urine becomes more concentrated with age. However, she does not know how much fluid she should give to avoid dehydration. She asks me [The Researcher] how much fluid she should give and what the signs and symptoms of dehydration are.”
This points to the need for caregivers to receive support in learning how to navigate their role. For the benefit of both the safety of the loved one in their care and their own mental health. One of the probable causes of the gap between information and caregivers is that family caregivers often don’t know how or where to access the information that is out there.
Physical Support
There are many extremely physical tasks that come with the day-to-day role of a caregiver. Examples such as lifting someone out of bed, getting them bathed, helping them dress, etc. can be very difficult (or impossible) tasks for many caregivers to manage – especially if their care recipient is larger than they are.
In addition to the literal physicality of some tasks, there are also less strength-based, but equally physical tasks (cooking, cleaning, driving, etc.) that caregivers could use support and help with.
Unfortunately (compounding the issue), caregiving is a time-consuming task that takes away from the amount of time caregivers are able to dedicate to the relationships with people who would normally help them. This leads to caregivers feeling unsupported and isolated.
Emotional Support
Family caregivers are at a much higher risk for mental health challenges as a result of providing care. There are prevalent stressors in the role (especially if the loved one in their care is battling a cognitive disorder), isolation concerns, and complicated emotions like grief that a family caregiver will likely experience. This is why we propose that family caregivers should regularly be screened for developing or potential issues by the team of medical professionals involved in their case.
Continued Research
It’s time, we believe, to pull caregivers’ needs out from the shadows. By reviewing only the needs of the care recipient, the impact of aging is only partially realized.
Organizations like CareHive (through the MIT AgeLab) are conducting ongoing research about what the life of a family caregiver is like. If you provide care to a loved one and would be interested in having your opinion on this topic heard, consider contacting CareHive.
Closing Thoughts
There is solid evidence for the needs of caregivers as we’ve outlined, but the topic is complex, and relatively little research has been completed to fully identify these needs. If you’re a family caregiver, consider voicing your opinion on the topic. If you know someone providing care, read this article to find impactful ways you can help the caregiver in your life.
The California Caregiver Resource Centers are a network of eleven independent 501(c)3 not-for-profit organizations across California that were created to be a free resource for caregivers in the state of California. We would love to connect the family caregiver in your life with their local Center, where they can talk more about local programs for caregivers, answer questions, and explain how they can best support the caregiver in your life.
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