Physical Activity Promotion and Support: Meeting Caregivers’ Unique Needs

The benefits of engaging in regular physical activity are extensive and can have a profound positive effect on one’s overall health (1). Numerous recent scientific reviews (2) further underscore the important role physical activity plays in achieving optimal health and preventing noncommunicable disease. For example, physical activity reduces risk of several types of cancer (3), ischemic heart disease, ischemic stroke, heart failure, and premature mortality (4). Among older adults, physical activity can improve cognitive functioning (5), reduce the risk of fall-related injuries, and delay the loss of physical function and mobility (6). According to Healthy People 2030, the nation’s health agenda, one of the goals is to improve the health, fitness, and quality of life for people of all ages through regular physical activity (7). Among the 23 physical activity objectives are aims to increase the proportion of adults who meet current minimum guidelines for aerobic physical activity and muscle-strengthening activity (PA-05) from current estimates of 24.0% to 28.4% and to reduce the proportion of adults who engage in no leisure-time physical activity (PA-01) from 25.4% to 21.2% by the year 2030. As the population ages and experiences a higher prevalence of chronic conditions (8,9), diligence must ensue to ensure that all individuals can be physically active, regardless of barriers such as a lack of time and support. Caregivers who assist friends or family members with physical, mental, or social health needs are one such group in need of special attention and support when it comes to engaging in their own self-care behaviors, such as physical activity (10,11). Caregivers are a growing part of the U.S. population with more than one in five adults 18 years and older (53.0 million; 21.3% of population) serving as a caregiver (12). Further, the need for caregivers is projected to increase while availability of caregivers is projected to decrease, thus placing higher demand and expectations on younger caregivers to fill those needed roles (8,9,13).Caregiving is an important role that affects the quality of life for the recipients of care as well as those who provide the care (8,10,14,15). Results of numerous studies have found both positive and negative effects on health for the caregivers. For example, positive outcomes such as strengthened bonds between the caregiver and the recipient as well as an improved quality of life and a sense of gratitude and recognition for caregiving have been documented (10,16,17). These positive aspects of informal caregiving have been associated with lower mortality for caregivers compared with noncaregivers (16–18). The negative outcomes of caregiving have been documented as well (19). In fact, a recent Centers for Disease Control and Prevention (CDC) survey conducted during December 6–27, 2020, and February 16–March 8, 2021, of 10,444 adults in the United States indicated that those adults who were parents, unpaid caregivers of adults, and parents in addition to being caregivers had significantly worse mental health conditions such as depression, anxiety, COVID-19 trauma- and stressor-related disorder (TSRD), or suicidal ideation than adults who were not parents or caregivers (20). Caregiving can place physical, emotional, and economic stress on the caregiver (15,19). More than half of caregivers experienced a decline in their own personal health, thus negatively affecting their ability to provide care (13), and almost one-fourth of caregivers indicated that caregiving made their own health worse (12). Caregivers often neglect their own needs (13). Thus, the health of caregivers is a public health priority. It is imperative to the recipient of care as well as the caregiver that the caregiver be supported in achieving and maintaining their own personal health. The health and fitness professional is in a prime position to support caregivers in the adoption and maintenance of physical activity into their lives. PURPOSE The purpose of this Clinical Applications column is to help the health and fitness professional better understand the role, challenges, and health risks posed to informal caregivers, and how they can use strategies to incorporate physical activity into their daily lives. WHO ARE CAREGIVERS? PREVALENCE AND TRAJECTORY OF CAREGIVING Although caregiving is often thought of as providing care to older adults as they age or manage illnesses often associated with older age such as Alzheimer’s disease, caregivers also provide assistance to individuals of all ages with disability or chronic conditions, such as stroke, cancer, or ALS (10). Caregivers can be “formal,” referring to those who are reimbursed for their services, or “informal,” referring to those who are not financially compensated for their services, and are usually unpaid family members or friends (15). Informal or unpaid caregivers are often middle-aged and older adults who provide long-term care in the recipients’ home (10). The caregiver’s roles can be time consuming and may include many physically and emotionally exerting responsibilities. Caregivers 18 years and older overspend an average of almost 24 hours a week providing care, and one-fifth of caregivers have a separate full-time job of 40 hours or more per week (12). The activities of daily living (ADLs) that caregivers may assist with or provide are broad — meal preparation and feeding, bathing and toileting, assisting with mobility from chairs, beds, and walking, etc. It is estimated that caregivers assist with 1.7 of the 6 ADLs (i.e., getting in and out of beds and chairs, getting dressed, getting to and from the toilet, bathing or showering, feeding, and dealing with incontinence). The most reported ADL, getting in and out of beds and chairs, can be physically taxing on the caregiver’s body (12).According to the 2020 Caregiving in the United States report, a nationally representative survey conducted in conjunction with the National Alliance for Caregiving and American Association of Retired Persons (AARP), an estimate of 19% of Americans provided unpaid care for another adult during the previous 12 months and 24% of these caregivers reported caring for more than one person (see Table). Furthermore, according to the CDC’s Behavior Risk Factor Surveillance Study data of more than 450,000 adult interviews each year, making it the largest and longest continuously conducted health survey system in the world (10), there was a higher prevalence of caregiving of a friend or family member because of a health problem or disability among women (25.4%) than men (18.9%). Almost one in three caregivers (31.3%) provided 20 or more hours per week of care, and more than half (53.8%) have given care or assistance for 24 months or more (10) (see Figure). TABLE - National Alliance for Caregiving and American Association of Retired Persons Data: Prevalence of Caregiving by Age of Care of Recipient, 2020 Compared to 2015 (12) 2020 Prevalence (%) Estimated Number of U.S. Adults Who Are Caregivers 2015 Prevalence (%) Estimated Number of U.S. Adults Who Are Caregivers Overall 21.3* 53.0 million 18.2 43.5 million Caregivers of recipients ages 0–17 5.7* 14.1 million 4.3 10.2 million Caregivers of recipients ages 18+ 19.2* 47.9 million 16.6 39.8 million Caregivers of recipients ages 18–49 2.5 6.1 million 2.3 5.6 million Caregivers of recipients ages 50+ 16.8* 41.8 million 14.3 34.2 million *Significantly higher than in 2015. Figure: CDC’s Behavior Risk Factor Surveillance Study data: adults 45 years and older who reported being a caregiver (10).PHYSICAL, EMOTIONAL, AND ECONOMIC EFFECTS OF CAREGIVING The physical, emotional, and economic effects of caregiving (15) can lead to chronic stress and can have negative effects on health and increase the risk of illness (21). Caregivers must balance caregiving with personal, work, and family roles, which can lead to secondary stress (22). Furthermore, the scope and duties of the caregiver can change from day to day, which may result in additional strain on the caregiver (7). Caregivers also typically do not make their own health a priority and practice fewer health promoting self-care behaviors when compared with noncaregivers, placing them at an increased risk for chronic disease and stress related illness (11). Previous research has observed negative associations between caregiving and various health measures. Informal caregiving can result in negative emotional health effects for caregivers (23), unhealthy behaviors (24,25), and negative longer-term physical health outcomes (26). Caregivers who are spouses, who are older, and who provide care for individuals with dementia are most likely to experience the negative effects of stress (18,19,27,28). Studies have consistently reported higher levels of depressive symptoms and mental health conditions among caregivers when compared with noncaregivers (19). Distress and depression in caregivers can lead to coexisting anxiety disorders, substance abuse, impaired health habits, and chronic disease (22). In addition to the psychological effects, physiological effects such as higher levels of stress hormones and lower antibody response have been seen in caregivers (21). Finally, the physical stress of caregiving (e.g., lifting, maneuvering, bathing, and walking assistance) can lead to muscle strain, injury, or other sources of discomfort and pain (29). Caring for others also can have negative economic and time implications. Many informal caregivers experience financial pressures when balancing work and unpaid caregiving responsibilities (15). Caregiving can be time consuming and may limit opportunities for full-time employment and may receive minimal or no financial assistance for caretaking (15,18). Lastly, caregivers report neglecting preventative care activities such as routine medical, dental, and visual exams, and flu shots (30). STRATEGIES FOR PROMOTING AND SUPPORTING PHYSICAL ACTIVITY WITH CAREGIVERS The constant, and sometimes round-the-clock, care means that many caregivers face physical, emotional, economic, and time overload when they try to meet everyday demands. Although physical activity may have once been a priority, having someone to care for can quickly replace habits and intentions. To improve caregiver health, self-care interventions should focus on saving time, relief from caregiving duties, stress reduction, and making them feel cared about and valued (30). In a study, caregivers said they would be more likely to follow through with preventative measures and self-care if someone, such as a health coach, encouraged them to focus on their own health behaviors (30). Health and fitness professionals can promote physical activity among caregivers, as encouraged by the National Association of Chronic Disease Directors (NACDD) and CDC’s Caregiving for Family and Friends — A Public Health Issue (10) report through strategies such as messaging that emphasizes the important role of caregiving and the importance of engaging in self-care to maintain personal health and well-being. Special emphasis may need to be placed on the importance of prioritizing their own health. PERFORM A THOROUGH EXERCISE PREPARTICIPATION HEALTH SCREENING As previously noted, many caregivers are at an increased risk for or already experience existing chronic diseases (10); therefore, the health and fitness professional should perform a thorough preexercise evaluation and preparticipation health screening before prescribing a physical activity program. This should include a health and physical activity history, a cardiovascular risk factor assessment, and the ACSM preparticipation screening algorithm to determine if the client needs medical clearance before beginning a physical activity program. It is also an opportunity for education and lifestyle counseling on other health behaviors such as stress and balanced nutrition as well as a time to discuss CVD risk reduction (31). EXERCISE PROGRAMMING AND INCORPORATING PREVENTATIVE EXERCISES INTO THEIR PROGRAM It is important that exercise recommendations are aimed to promote the most benefits; therefore, when developing a program for the caregiving client, follow ACSM guidelines based on the caregiver’s health and any chronic conditions. Because of the nature of their duties, caregivers may be at an increased risk of musculoskeletal injury or aggravation of existing conditions such as arthritis (29). Become familiar with the caregiver’s typical caregiving duties during the initial intake to incorporate preventive exercises into their physical activity program. This may include teaching proper lifting techniques, assessing for muscular imbalances, and targeting strength and flexibility exercises for specific muscle groups used in heavy lifting, for instance, the legs and core, to help them safely and effectively perform their caregiving duties. RECOGNIZE AND ADAPT PROGRAMMING TO MEET CAREGIVERS’ UNIQUE NEEDS It is important to understand the caregiver’s stressors, environment, and daily schedule to provide a reasonable and attainable program that fits into the caregiver’s lifestyle and needs. If a traditional 30- to 60-minute exercise session is not attainable, encourage them to intermittently accumulate this time over the course of the day. This can be accomplished through shorter 10-minute bouts of activity performed multiple times per day (32). Engaging in any type of physical activity for any length of time whatsoever, even if it’s less than 10 minutes, is associated with improved health outcomes, which includes all-cause mortality (33). The health and fitness professional can help the caregivers to brainstorm appropriate strategies for finding time to incorporate activity, for instance, when their care recipient is otherwise engaged (e.g., napping or watching TV). If time away from the care recipient is difficult to obtain, encourage coactivity if possible. Coactivity occurs when caregivers engage in activities where they can be active with their care recipient, such as going on a walk together (34). This will allow for unstructured exercise and, if applicable, may address the physical activity needs of both the caregiver and the recipient. If a gym is not accessible or time restrictive, technology can allow for individuals to engage in many forms of exercise in the convenience of their own home. Programs with a wide range of formats and session lengths can be accessed free online through sites such as YouTube, or through pay-stream services such as BeachBody, Peloton, or Glo. Furthermore, a variety of mobile apps may be beneficial in helping track nutrition, sleep, and exercise habits. These technologies also may effectively aid the caregiver in goal setting, instructions, prompts, and social support. The health and fitness professional should aim to implement a whole person approach when working with the caregiver, with particular consideration to their current environment, schedule, stress levels, and overall health. Remember that it is important to address physical activity from an ecological approach, meaning taking the time to get to know their day-to-day activities, caregiving obligations, environmental factors, and discuss any barriers to physical activity (35). The health and fitness professional can help empower the caregiver by encouraging them to take care of themselves through a variety of activities such as exercise, meditation, healthy eating, preventative medical exams, rest, and respite when needed. Begin by educating and reassuring the caregiver that taking time for self-care is not a selfish act, but a way to ensure they have the capacity to continue in their role as a caregiver. For instance, taking time for physical activity not only improves health outcomes and reduces risk of chronic disease but also helps manage stress, prevent depression, and give the caregiver time for practicing self-care. SCOPE OF PRACTICE It is recommended that health and fitness professionals stay within their scope of practice when providing guidance. For instance, a health and fitness professional may want to recommend a licensed counselor or support groups for stress, anxiety, or depression symptoms; a physical therapist for injuries; or a registered dietician for those with chronic conditions who require medical nutrition therapy. Furthermore, if the caregiver needs additional local resources, such as adult day programs, in-home assistance, support groups, respite care, and meal delivery, encourage them to speak with their social worker, case manager, or care coordinator if they have one designated. Navigating the health care system to determine benefits available to the recipient of caregiving and themselves can be a frustrating and time-intensive process as benefits and processes vary by insurance company and by state. They can reach out to their health care provider for resources on how to get started exploring local resources or visit https://www.aarp.org/caregiving/local/info-2019/national-resources-for-caregivers.html for a list of national agencies and organizations that offer education and assistance to caregivers. Finally, encourage the caregiver to have regular checkups with their health care provider to maintain their health and prevent or management chronic illness. CONCLUSION Caregivers are at a high risk for health complications and chronic conditions because of the physical, emotional, and financial demands of caregiving. The time-intensive nature of caregiving responsibilities can present barriers to maintaining a healthy lifestyle, which include being physically active, eating a nutritious diet, managing stress appropriately, and getting adequate sleep. As health and fitness professionals, it is important to understand caregivers’ unique needs, circumstances, and lifestyles to be more creative and helpful in implementing strategies to meet their physical activity and health goals. Caregivers should aim to meet the physical activity recommendation guidelines for all adults with an understanding that some health benefits still exist from increasing physical activity even below the recommended levels. Understanding their caregiving circumstances will allow for health and fitness professionals to give appropriate guidance and recommendations to support the adoption and maintenance of a physically activity lifestyle.