A recent systematic review published in The Gerontologist highlights the benefits of financial compensation for family caregivers under Medicaid’s self-direction program, revealing improved well-being and increased intention to continue caregiving.
Image by Matheus Ferrero
Money changes everything, including relationships with siblings and other members of a care teamBB
Imagine a 53-year-old woman named Melissa who, six months after beginning to receive a salary for serving as her father’s personal care attendant, feels generally satisfied with the arrangement. Although she only earns $13 an hour for helping him with dressing, grooming, and getting around his apartment, as well as cleaning and cooking for him, the money she makes allows her to afford her father’s medical copays, cans of protein supplement and basic repairs to his house where she now lives with him. She also keeps a portion of her wages for herself to offset the income she lost by leaving her better-paying job as an administrative assistant to become his full-time paid family caregiver.
A recent systematic review of research studies in the September 2024 edition of The Gerontologist seems to confirm Melissa’s impressions. The studies analyzed were all about family members who received monies for caring for a family member under a state-run self-direction program, which allow Medicaid recipients to pick who is hired to care for them; many choose family members. (Other family caregivers whose care receivers don’t qualify for Medicaid may still be paid an agreed-up sum directly by their care receivers or other relatives.) The review found, not surprisingly, that paid family caregivers experience improved personal and social well-being. It also noted that paying them increased their intention to continue caregiving.
We can interpret these conclusions to mean that money matters materially and psychologically for family caregivers. Even a modest salary may help support a caregiving household. It may help family caregivers feel acknowledged and valued, not taken for granted as many unpaid family caregivers do.
The review was not entirely positive, however. It found that paid family caregivers experience more “emotional strain” than personal care attendants who are not related to the care receiver. That suggests that caring for someone with whom they have a familial bond causes more stress (though this is also likely true for unpaid family caregivers). It is also possible that getting paid may complicate family dynamics.
For example, without coming right out and saying it, Melissa’s two brothers seem to resent her for profiting from Dad’s decline as if she is some sort of greedy mercenary rather than his loving daughter. Since she started receiving a salary, they drop by the house less often and rarely offer to help her. It is as if they believe the family caregiving job is now hers and hers alone.
Family caregivers should be able to earn a wage for their hard work without family drama. How is that possible? Here are some ideas:
First, do homework
There is not one self-direction program implemented throughout the country for paying family caregivers; every state has its own or several different ones, and they vary in terms of who is eligible and how they are run. For instance, in some states, spouses can be paid for caring for a partner; in others, not. Some require family caregivers to undergo specified training; others don’t.
To figure out which program rules may apply to you in the state where your care receiver resides, you can put the name of that state and the term “self-direction” (or “consumer-direction” or “participant-direction,” also commonly used for the same type of program) into an internet search engine to find an online site with information. Alternatively, you can call the state’s Medicaid department (often called the Department of Human Services) or the care receiver’s local Area Agency on Aging (AAA) to obtain information. (You can look up which AAA to contact by going to the Eldercare Locator and putting in the care receiver’s ZIP code.)
Set clear role expectations
Paid family caregivers don’t stop being first and foremost family members. That means they should make clear to care receivers and other family members that they aren’t employees who are obliged to jump at every barked order; they are family caring for family and deserve respect.
If Melissa’s father becomes demanding, impatient, or irritable with her, she can tell him that she expects him to treat her politely just as she might in any father-daughter interaction. If one of her brothers expresses his resentment that she is raking in a “fat” salary, she can tell him she expects he will be a supportive sibling.
Be open and frank
There should be no family secrets about money in family caregiving. Paid family caregivers should inform care receivers and other family members about exactly how much they are getting paid for completing which duties and what portion of that amount is being put toward paying for services that benefit care receivers. It should be evident that the primary caregiver is not reaping riches from a relative’s decline. And paid family caregivers needn’t feel guilty or shy about asking for help. Receiving a wage doesn’t give them superpowers to manage what can be an overwhelming job; they still need support. Other relatives aren’t suddenly exempt from all responsibility toward the care receiver or the paid family caregiver. Money changes many things, but not that.
family caregivers, financial compensation, Medicaid self-direction, caregiver well-being, gerontology research, caregiver intention, family support programs
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