Patti LaFleur, an experienced caregiver, faced an unexpected crisis in April 2021 when her mother, Linda LaTurner, fell and broke her hip. LaTurner, who had been living with early-onset dementia, relied on LaFleur for managing her diabetes, assisting with daily tasks, and ensuring her well-being. When LaTurner underwent hip replacement surgery, LaFleur was informed that her mother would never walk again. Upon LaTurner’s return home, LaFleur received minimal assistance and felt unprepared to handle her mother’s care, such as changing diapers and preventing bedsores. The lack of training made an already challenging caregiving role even more difficult for LaFleur. Sadly, LaTurner passed away in March 2022.
In response to the longstanding issue of inadequate support for family caregivers of older adults, the Centers for Medicare & Medicaid Services (CMS) has proposed a new initiative. This proposal aims to authorize Medicare payments to healthcare professionals who can provide training to informal caregivers. The training would cover medication management, assistance with daily activities, and the use of medical equipment. Recognizing the crucial role of family caregivers in safeguarding the health of older adults, this proposal is a significant step forward. In 2020, approximately 42 million Americans provided unpaid care to individuals aged 50 and older, with a substantial number undertaking medical and nursing tasks. However, less than 30% of caregivers have meaningful discussions with healthcare professionals, and only 7% receive any formal training.
Nancy LeaMond, chief advocacy and engagement officer for AARP, has firsthand experience with the lack of caregiver support. As a caregiver for her husband with amyotrophic lateral sclerosis (ALS), she struggled to find certified health aides who could assist with specialized tasks like operating feeding tubes. LeaMond and her sons had to rely on online videos to educate themselves. She acknowledges that until recently, there has been insufficient attention given to the role of family caregivers and the need for their support within the healthcare system.
While CMS’s proposal is encouraging, there are still details to be finalized. The definition of a family caregiver, the frequency of training, and the location of training delivery all require careful consideration. Advocates suggest a broad definition that includes multiple individuals involved in caregiving, even if they are reimbursed by family members. The frequency of training should be flexible, tailored to the specific needs of older adults and the skills of caregivers. Training should ideally take place in the home, as recommendations from healthcare professionals may require adjustments for implementation.
Several caregivers have shared their personal stories, highlighting the challenges they faced without adequate training. Nancy Gross, whose husband received a stem cell transplant for leukemia, had to manage complex medical procedures without proper education. Cheryl Brown, caring for her husband with ALS, questions the effectiveness of paying professionals for training since experienced caregivers like herself need hands-on support at home.
As the CMS proposal progresses, public input is sought on defining caregivers and determining training frequency. The expectation is that Medicare will begin covering caregiver training in the near future. Caregivers are encouraged to voice their opinions during the public comment period.
In conclusion, while CMS’s proposal is a significant step towards supporting family caregivers, further refinement is necessary. The unique needs of caregivers and older adults must be considered, along with the practicality of training delivery. Ultimately, caregivers require accessible and comprehensive training to provide optimal care for their loved ones.
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