Across all cultures and generations, caregivers have long served an integral role supporting the health of family members’ or friends in need of long-term care (LTC). In many cases, these caregivers are unpaid individuals without formal training — often a spouse, partner, family member, friend or neighbor.
According to a 2020 report by AARP and the National Alliance for Caregiving, nearly 1 in 5 American adults are informal caregivers for family or friends living at home or in the community. Compared to 2015, a greater proportion of caregivers of adults are providing care to multiple people now, with 24% caring for two or more recipients. Americans continue to step up to provide unpaid care to family, friends and neighbors who might need assistance due to health or functional needs.
Among those who require an informal caregiver for assistance are the 3 million Medicare beneficiaries living at home or other community settings considered to have LTC needs. This group of people have trouble performing typical activities of daily living such as bathing, eating, or dressing. Informal caregivers lend a hand by cooking a meal or assisting with teeth brushing and other hygiene. Now, as more people choose to stay at home even as they become more medically complex, an increasing number of caregivers must perform tasks nurses typically perform.
Another challenging aspect for informal caregivers is medical and prescription management. About 75% of Medicare beneficiaries with LTC needs who live at home or in the community require an average of 14 prescriptions per year. Managing these required drugs is necessary since Medicare beneficiaries with LTC needs have a much higher prevalence of chronic health conditions, such as diabetes, heart or lung disease, and mental illness. In fact, 39% of Medicare beneficiaries with LTC needs who are community-dwelling suffer from four or more chronic conditions, compared to only 15% of those without LTC needs. Because of this, informal caregivers are responsible for tasks like administering injections, facilitating breathing treatments, checking blood sugar and giving medicines, although they may be unprepared to do so.
LTC pharmacy limitations
Research increasingly demonstrates that key LTC pharmacy services for community-dwelling beneficiaries improve patient outcomes, reduce health care costs, and keep people in their homes longer. But results from a recent ATI Advisory and the Senior Care Pharmacy Coalition study highlight the fact that existing policy is biased toward institutional care. This situation limits LTC pharmacies’ ability to help care for people in their homes.
LTC pharmacies offer a more tailored approach to dispensing medication through regular medication review to decrease the number of prescriptions, patient and caregiver education, and specialized medication packaging, among other services. Importantly, community-dwelling Medicare beneficiaries with LTC needs are more likely than those without to have expensive medical events such as hospitalizations and emergency department visits due in part to their clinical complexity.
Although LTC pharmacies exist to take care of individuals with cognitive and functional frailty and provide services designed to meet the complex needs, Medicare beneficiaries with LTC needs and older Americans who choose to live at home do not have access to their services, forcing these individuals to depend upon caregivers.
Family caregiving cost
As it seems caring for an aging parent or loved one is here to stay, we need to consider the impact on caregivers. The cost of caring for a loved one is high, and caregivers report physical, emotional and financial strain.Nearly two-thirds of informal caregivers are employed, meaning they are juggling caregiving responsibilities with their job. According to RAND Corp. research shows informal caregivers lose $522 billion in wages each year while caring for a close relative or friend.
The financial toll is made worse by the emotional and physical strain. Unfortunately, 1 in 4 informal caregivers reported they find it difficult to take care of their own health and a similar proportion report caregiving has made their own health worse (23%).
Intensifying all of these issues faced by informal caregivers is the fact that staffing shortages for paid long-term nurses and caregivers is only worsening. Nursing homes are able to accept fewer patients as they continue to struggle to recruit and retain employees. Since the COVID-19 pandemic nursing homes have lost 238,000 positions, about 15% of their workforce, industry groups say, even as employment in other healthcare settings has rebounded. And while nursing home occupancy climbed to 77.6% in the first quarter of 2022 — up from a pandemic low of 74.1% — it’s still well below the pre-pandemic level of 86.6%, according to research by the National Investment Center for Seniors Housing & Care.
As noted in a report published in the National Academies of Sciences, Engineering, and Medicine, workers in nursing homes are often underappreciated, undercompensated and underprepared for their roles in providing increasingly complex care. Decades of evidence support the need to enhance training, salaries and working conditions, yet little progress has been made. As a result, the industry isn’t attractive for employees. To help ease the burden already felt by many informal caregivers, it will be essential to improve compensation and training to combat the oncoming wave of people who will need long-term care.
Recognizing a need to support these caregivers and the vital role they play, policymakers must be wary of the strain of disease or disability on a family unit. Many find caregiving to be incredibly rewarding, but it is also a tough job that can result in high costs, both financially and emotionally. As the complexity and intensity of caregiving for older adults is only increasing, it is imperative that we recognize how LTC pharmacies may help relieve informal caregivers by taking on the skilled nursing activities more are asked to perform including injections, tube feedings, catheter and colostomy care, and many other complex care responsibilities.
The U.S. Congress and the Centers for Medicare & Medicaid Services must consider adopting new policies and remove barriers to allow LTC pharmacy services to expand beyond facilities into homes and communities where they can help patients as well as their informal caregivers in need.
Alan Rosenbloom serves as president and CEO of the Senior Care Pharmacy Coalition (SCPC), the only trade group in Washington dedicated exclusively to the political and public policy interests of long-term care pharmacies. Rosenbloom has spent his entire professional career in healthcare, including stints as president of the Alliance for Quality Nursing Home Care; president and CEO of the Pennsylvania Health Care Association; and acting president, executive vice president and chief operating officer of LeadingAge.