Abacoa & Alton Neighbors - May 2025

M AY 2 0 2 5 | A B A C O A & A LT O N N E I G H B O R S 13 R ecognizing that family caregivers had urgent, substantive needs for resources and support, the late Rosalynn Carter founded her Institute for Caregivers in 1987. The extent of the need was proposed by Mrs. Carter as she said: “there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” According to the Alzheimer’s Association, in 2024 more than 800,000 family caregivers in Florida provided more than one billion hours of unpaid care for loved ones with Alzheimer’s disease or a related dementia-causing disorder. Alzheimer’s Community Care (ACC) is the largest single provider of community-based, dementia-specific services in Florida. We know that the burden of caregiving is physical, emotional, and financial. Our specialized adult day centers provide vital respite and a nurturing, therapeutic environment for loved ones. Our nursing and social work professionals support and guide caregivers. The American Medical Association (AMA) advises physicians of the toll these burdens impart to caregivers, and the risk that caregivers will experience “burnout,” a condition the AMA defines as “a state of physical, emotional, and/or mental exhaustion that can create negative and unconcerned caregiver attitudes.” Healthcare providers caring for patients with Alzheimer’s disease or a related neurocognitive disorder must recognize that there is a second “patient,” the family caregiver. Though one often hears the term “patient-centered” care, a comprehensive, responsible approach must address both patient and caregiver with interventions and resources that are truly “family-centered.” Unfortunately, our current healthcare system often leaves caregivers’ needs unmet. The value in dollars of care provided by families may be surpassed by the value in quality of life for the patient. While it is challenging to place a dollar value on quality of life, the benefits of living at home with family clearly outweigh placement in a residential facility. In a 2024 publication, the Centers for Disease Control and Prevention (CDC), reported that one in five adults in the United States provides care for a family member or friend and that supporting this significant segment of the population is a “public health priority.” The 2022 National Strategy to Support Family Caregivers, a federal program of the Administration for Community Living was created to address this public health concern, support family caregivers in all age groups, and meet their diverse caregiving needs. The program’s report to Congress in September 2024 stated that 350 federal actions in the Strategy had either been completed or were in progress and that 40 new initiatives were added. Notably, the Strategy addresses the need to bolster caregiver health and wellbeing, in addition to providing resources for the caregiving journey. This is vital as family caregivers for loved ones with Alzheimer’s disease or a related disorder perceive greater stress and burden than that of caregivers for loved ones not experiencing dementia. As COMMUNITY - By Dr. Karen L. Gilbert DNP MS RN CDP, Alzheimer’s Community Care Vice President of Education and Quality Assurance ARE YOU A CAREGIVER? IF YES, YOU HAVE SPECIAL NEEDS AND UNIQUE VULNERABILITIES! reported by the Alzheimer’s Association is its 2024 Annual Facts and Figures Report, this stress and burden translates to greater prevalence of depression, anxiety, social isolation, and chronic health conditions, such as diabetes, heart and cardiovascular disease, cancer, obesity, and stroke in family caregivers. The costs to quality of life and to the healthcare system are substantial. As the National Strategy to Support Family Caregivers continues to advocate and advance caregiver focused programs, our system of primary care must become more robust in identifying the caregiver role as a risk to health, much as any of the aforementioned chronic conditions, social isolation, and clinical depression compromise health. Though identification of common chronic conditions follows recognized standard guidelines, no such standard exists for evaluating the impact of caregiving. There is, of course, no lab work or X-ray to identify that one is a caregiver; healthcare providers need to ask. The same list that asks a patient to check whether they have history of one or more of a long list of diseases, conditions, allergies, surgeries, etc., needs to ask, “Are you a caregiver?” If yes, follow-up questions should identify whether the person is already linked with community and/or government resources, and provide those resources if not. In 2020, the Journal of the American Medical Association, in a publication reflecting a study of four primary care practices, noted high variability in identifying caregiver needs and associated risks to health. This is unacceptable. The stresses and burdens of caregiving can pose as much risk to a caregiver’s health as smoking, a sedentary lifestyle, diabetes, heart disease, cancer, and sustained, elevated stress that raises levels of inflammation in the body, weakens the immune system, and makes one susceptible to clinical depression, chronic diseases, and even cognitive impairment. At ACC, we’ve been at the forefront of prioritizing the needs of caregivers through our core services. We work hard to give caregivers peace of mind through our programs like specialized adult day centers and our ID Locator services that provide patient tracking devices to families at no cost. We know the importance of alleviating caregiver stress, and it is time for primary care providers to recognize caregiving as a health risk, and for the development of clinical practice guidelines for identifying caregivers and offering guidance for linking caregivers with vital support and resources. Are you a caregiver? Make certain your healthcare providers know, and incorporate guidance to maintain your health and well-being, and support your caregiving journey. Dr. Karen L. Gilbert, DNP MS RN CDP, based in West Palm Beach, is vice president of education and quality assurance for Alzheimer’s Community Care. Alzheimer’s Community Care is dedicated to promoting and providing community-based, family-centered care for patients and their caregivers living with neurocognitive disorders, through the belief that where there is help, there is hope. To learn more, visit: alzcare.org.