There are 53 million adults in the United States who care for an elderly parent/relative or special
needs child according to a report from the Centers for Disease Control and Prevention (CDC)
in 2021. This is an increase of 10 million caregivers from 2015. Many of these caregivers work
full-time jobs in addition to providing care. I will be focusing on caring for seniors in this post.
Demand is growing for unpaid care due to recent inflation and economic pressures. The direct
cost of caregiving on the United States' economy is close to 44 billion dollars according to
leading economists. Time spent caregiving is increasing as well. In 2021, caregivers spent 26
hours on average caregiving versus 9 hours in 2020 according to the Harvard Business Review
(2022). The American Association of Retired Persons (AARP) reports that in 2020, one in five
Americans provided unpaid family care.
Older adults, mainly parents, are receiving 41% of the care with 29% being a special needs child
and 18% are spouses or partners. Currently and historically women are more affected by
providing care at 56% with men providing 44% of care to family. Many of these caregivers are
caught in what is referred to the “sandwich generation” referring to those caregivers who have
children at home and who are also caring for an aging parent or relative.
Due to the pressures of caregiving, many of these caregivers experience both physical and
mental health issues. Because they focus on caregiving, they do not attend to their own health
needs such as exercise, check-ups, etc. When counseling caregivers, I use the analogy of putting
on your own oxygen mask during an airplane emergency before assisting others. Caregivers are
prone to burn-out and need breaks in order to keep their own physical and mental health in
check. A recent study by the CDC showed a 2.3% increase in mental distress in caregivers. Other
physical impacts included obesity, asthma, chronic obstructive pulmonary disease and arthritis.
AARP released a report in March 2023 titled “Valuing the Invaluable 2023 Update:
Strengthening Supports for Family Caregivers.” The report found that by 2034, adults 65 and
older will outnumber children under the age of 18. Generation Z and Millennial caregivers are
more likely than other caregivers to work outside of the home while performing their caregiving
responsibilities. Sixty-one percent of caregivers work either full or part-time. They also noted
only 11 states and the District of Columbia have paid family leave programs. However, it is not
all gloom and doom. Family caregivers in Virginia can get paid for their
services in some circumstances. Virginia offers self-directed Medicaid services for long-term
care. The Commonwealth can grant a waiver that allows qualified individuals to manage their
own long-term home care services which can include hiring a family member to provide care.
Unfortunately, the family caregiver must be 18 or older and not the spouse of the person needing
care. There is also the VA Caregiver Support Program whereby the Veterans Administration
offers a monthly stipend based on the veteran's condition, the amount of care they need and their
physical location.
Other options include long-term care insurance as some policies allow payment to family
caregivers. Some employers may pay family caregivers for time off. Working remotely can also
allow family caregivers to work from home while providing care to family members. If the
family member receiving care is able to pay the family caregiver, this is allowed but I encourage
you to have a personal care contract in place. As with any other job, the caregiver will need to
report all payment received as income.
A personal care contract is very important especially if the family member receiving care may
apply for long-term Medicaid in the future. The Medicaid eligibility worker may question payments
from the family member receiving care to the caregiver assuming it could be an uncompensated transfer. There is a five year look-back regarding uncompensated transfers when
applying for long-term care Medicaid.
In closing, family caregivers provide critical care to their aging parents and family members.
Many of these caregivers are uncompensated and provide care at the detriment of their own
physical and mental health. If you know such a caregiver and can give them respite, please
consider doing so. As the cost of care continues to rise, the need for family caregivers will also
increase. There are resources to assist caregivers including the Alzheimers Association and the
National Alliance on Mental Illness to name just a few. I will discuss special needs caregivers in
a future blog post.