Annals of Long Term Care

In his article “Long-Term Care for the Stroke Patient in Family Home Care,” the author relates the exemplary care of an older woman who sustained a stroke at the age of 84. The family provided care for this stroke survivor admirably until her death 10 years later. The woman’s disabilities included right-sided paralysis, dysphasia, dyspraxia, and aphasia, as well as complications specific to enteral tube feedings, seizure activity, and urinary elimination. In the United States, approximately 780,000 Americans suffer a new or recurrent stroke each year. The median survival time after a first stroke for individuals age 60-69 years is 6.8 years for men and 7.4 years for women; for those older than age 80 years, the median survival time is 1.8 years for men and 3.1 years for women. Fifty percent to 70% of stroke survivors regain functional independence; 15-30% are permanently disabled.¹

Most healthcare professionals and laypersons would likely agree that older adults want to and should be cared for in their homes, with institutional care being envisioned as a last resort. Unfortunately, this home care comes at a price. The author presents well the burden that home care placed on the family of this 84-year-old stroke survivor, highlighting the important role of the physician in creating a gratifying versus an unpleasant experience in home care. Indeed, the majority of stroke survivors in the United States will receive long-term care from family members in their own homes; over a 10-year period such as that presented by the author, the overwhelming majority of that care will be family-centered unless the family has the financial wherewithal to provide skilled and custodial care. The family caregiver may experience financial difficulty, social isolation, as well as anxiety and energy depletion related to unfamiliar care situations. Caregivers may ultimately suffer poor physical and mental health subsequent to their investment in caregiving. Caregivers need emotional support, information, knowledge, and skills to overcome the uncertainty and challenges that evolve over the course of home care, whether it is 60 days or 10 years. They need guidance to anticipate and prioritize needs and to learn coping strategies and problem-solving. Yet, in one study of 99 family caregivers of patients with stroke (n = 95) and brain injury (n = 4), unpaid family caregivers reported feeling unprepared and inadequately supported by home health agencies, whose services were often terminated abruptly.²

The economic value of these unpaid informal family caregivers of stroke patients has been conservatively estimated at $6.1 billion, based on a population age 70 years and over.³ Considering even these modest cost savings to the healthcare system, it seems prudent that the U.S. healthcare system should nurture and care for the caregivers themselves. Informational resources for caregivers abound through local agencies, as well as through computer resources and websites. Financial compensation from Medicare, Medicaid, and private/supplemental sources for human and material resources, however, is usually short-term and would definitely not encompass the 10-year period noted in the author’s article. Additional agencies/services over time may include adult daycare, adult foster care, respite care, and others. These often are out-of-pocket expenses to the patient and to the family caregiver. Even in the best of situations, the family caregiver is often left in a quandary, not knowing where to begin or how to navigate the system.

To whom does the caregiver turn for help? Physician involvement in home care is mandated through Medicare. Yet, the extent of physician involvement is ultimately up to the physician as to whether that entails home visits, active planning, or merely oversight of care.