family caregiving roles and impacts
ORL Head and Neck Nursing 1(22):10-25. Find a community. 1997. Pinquart and Sörensen (2003) also found that care recipients’ behavior problems had a greater impact on caregivers’ burden and depression than care recipients’ physical and cognitive impairments. Social Science & Medicine 56(5):915-920. options for the medical treatment of chronic and acute conditions in non-institutional settings. Set up an alarm system for your loved one. The science of caregiver health. European Journal of Oncology Nursing 16(4):387-398. Caregivers are potentially at increased risk for adverse effects on their well-being in virtually every aspect of their lives, ranging from their health and quality of life to their relationships and economic security. Caregiving in the United States, 2009. 2009. play, involving family caregivers as key partners in health care and LTSS settings is vitally important, as discussed further in Chapter 6. Then determine which activities you’re able to perform (be realistic about your capabilities and the time you have available). TABLE 3-4 Summary of Findings on the Physical Health Outcomes of Family Caregiving of Older Adults. “Dementia only” refers to care recipients with possible dementia and less than two self-care needs. The escalating complexity of family caregiving: Meeting the challenge. Nielsen, M., J. Hansen, B. Ritz, H. Nordahl, E. Schernhammer, L. Wermuth, and N. H. Rod. Skaff, M. M., and L. I. Pearlin. Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. Having these feelings doesn’t mean that you don’t love your family member—they simply mean you’re human. Grant. What are the risks, costs, and benefits to whom over time? Torti and colleagues (2004) reported that behavioral problems are associated with caregiver burden across geographic regions and cultures. While the preponderance of evidence suggests an association between caregiving and physiological function, it is important to keep in mind that the caregivers selected for these studies are typically moderately to highly stressed dementia caregivers and therefore the generalizability of findings may be limited. In NSOC, 20 percent of all caregivers and 39 percent of caregivers of high-need older adults reported that they experienced a substantial level of physical difficulty.5 Sleep problems affected more than 40 percent of caregivers and were highly correlated with reports of substantial negative effects of caregiving (Spillman et al, 2014). Profiles in caregiving: The unexpected career. 2009. In summary, a large body of literature, including population-based cross-sectional and longitudinal studies, provides strong evidence that a substantial proportion of the caregiving population experiences negative psychological effects, even though caregiving has some positive effects as well. Personal care services. Journal of American Geriatrics Society 60(5):884-895. Washington, DC: The National Academies Press. Silver, H. J., N. S. Wellman, D. Galindo-Ciocon, and P. Johnson. Transitions in the caregiving trajectory may be planned, as in the transitions from hospital to skilled rehabilitation facility to home, or they may be unplanned, as in an emergency room visit and rehospitalization (McLennon et al., 2014). The positive psychological effects of caregiving have been defined in various ways. Stroke 46(9):2584-2590. In fact, the caregiving experience and its impact are highly individual and dependent on a wide array of personal and family circumstances such as the caregiver’s own health, the care recipient’s level of impairment, financial resources, and competing demands from work and family. 2006. NAC and AARP Public Policy Institute. The Gerontologist 30(5):583-594. Thus, an outcome attributed to caregiving such as depression may be a reflection of underlying vulnerabilities shared by both partners (Roth et al., 2015). Reinhard, S., and L. Feinberg. But as a nonprofit that doesn’t run ads or accept corporate sponsorships, we need your help. Caregivers may also take on new tasks when their care recipient moves into a residential facility, interacting with the facility’s administration and staff, advocating for the resident, and serving as his or her surrogate decision maker (Friedemann et al., 1997; Ryan and Scullion, 2000). Know your limits. Feinberg, L. F. and C. J. Whitlatch, 2001. Early work by researchers such as Gallant and Connell (1997), Pearlin and colleagues (1990), and Schulz and Beach (1999) suggested that health-promoting and self-care behaviors may be neglected by caregivers due to their caregiving duties, lack of time and energy to take care of themselves, or breakdown of social networks; health risk behaviors also may be triggered by care recipient behaviors or by coping mechanisms induced by the stress of caregiving. B. Amstadter, H. S. Resnick, K. Steve, W. Muzzy, and D. J. Kilpatrick. Pinquart, M., and S. Sörenson. These are just a few of the varied trajectories associated with three common late-life illnesses. 2007. Hospice care can also be provided at home. Parent care as a normative family stress. This is, in part, the result of ongoing efforts to shorten lengths of hospitalizations and reduce nursing home placements, coupled with increasingly complex. We did not quantify the number of hours typically spent caregiving. The risk of injury is further compounded by the home environments of the care recipient, which may include small spaces, crowded and cluttered rooms, and steep stairways (NRC, 2011). Regardless of your particular circumstances, being a family caregiver is a challenging role and likely one that you haven’t been trained to undertake. Schulz, R., S. H. In summary, this chapter raises profound concerns about our dependence on family caregivers to take on increasingly complex and demanding roles. Psychologists and others involved in clinical practice most often see caregivers who are seeking help because they are experiencing high levels of strain in the caregiving role, and these … More recent caregiver surveys continue to find similar results (Kasper et al., 2014; Reinhard and Feinberg, 2015; Spillman et al., 2014; Wolff et al., 2016). Delirium in patients with head and neck cancer in the outpatient treatment setting. Figure 3-1 shows how caregiving for persons with dementia typically follows a relatively linear trajectory driven by the progressive cognitive and functional decline of the care recipient. This information can then be used to develop a treatment plan that may involve home alterations, caregiver training on how to safely perform required caregiving tasks, and the use of paid professionals to perform tasks that place the caregiver at risk of injury (Cornman-Levy et al., 2001). These opposing perspectives on caregiving and mortality may be reconcilable if we consider that negative impact studies are typically based on vulnerable, older, strained caregiving spouses providing intense levels of care while studies reporting positive effects focus on all caregivers regardless of age of caregiver, relationship to the care recipient, or type and amount of care provided. Thus, multidimensional assessment is needed to identify the specific array of risk factors present for any given caregiver. Note that the tasks required of the caregiver are cumulative over time. Be open to technologies and strategies that allow your family member to remain as independent as possible. The prevalence of potentially abusive behaviours in family caregiving: Findings from a national survey of family carers of older people. Being female (Wang et al., 2015) and older (Rabinowitz et al., 2007) or younger (Salgado-Garcia et al., 2015) have all been associated with poorer caregiver health behavior. Haley, W. E., D. L. Roth, G. Howard, and M. M. Safford. Clinical Nursing Research 24(4):388-400. Correlates of physical health of informal caregivers: A meta-analysis. Investigate local services. Although typical phases in the caregiving trajectory can be identified, they are not necessarily linear and some degree of unpredictability always exists. Care recipients’ behavioral symptoms (e.g., agitation, irritability, combativeness) are also associated with negative effects for caregivers (Ballard et al. Family surrogates also face surrogate decision-making tasks far beyond health decisions. Ballard, C., K. Lowery, I. Powell, J. O’Brien, and I. James. Sleep complaints in older women who are family caregivers. Lavender, K. J. Tanner, K. Vogel, and M. Campo. Conversely, relationship changes may occur suddenly, as with a stroke. Poorer caregiver physical health is closely associated with greater caregiver burden and depressive symptoms and is associated to a lesser degree with hours of care provided, the number of caregiving tasks, months in the caregiver role, as well as the physical, cognitive, and behavioral impairments and problems of the care recipient (Pinquart and Sörenson, 2007). de Nooijer, J., L. Lechner, and H. de Vries. With the right help and support, you can provide loving, effective care without having to sacrifice yourself in the process. Given, and K. Schumacher. Cornman-Levy, D., Gitlin, L.N., Corcoran, M.A. Thirteen percent of all caregivers and 15 percent of those caring for the most disabled older adults reported symptoms of anxiety and depression. The confidence of the caregiver with respect to their caregiving role is linked to the illness status of the care recipient and the caregiver’s knowledge and skills in addressing care recipient needs (Gibbons et al., 2014). Many people, such as some racial or ethnic groups, LGBT caregivers, and individuals with limited health literacy, face the additional challenge of finding culturally and linguistically tailored services appropriate to their care recipients’ needs (Coon, 2007; Dilworth-Anderson, 2002; Fredriksen-Goldsen and Hooyman, 2007; Nápoles et al., 2010). 2015. 2014. As indicated in Figure 3-2, these responsibilities are often daily ones if the older adult needs help because of health or functional limitations: 44 percent of caregivers reported helping with chores every day or most days. Caregivers should have access to high-quality, evidence-based interventions designed to mitigate or prevent adverse health effects. Caregiving for older adults and the caregivers’ health: An epidemiologic review. 2002. Given that current research shows the availability and preparedness of caregivers can affect the quality and course of care recipients’ post-hospitalization care and that caregivers are often underequipped, outlining and defining these roles is important to designing possible interventions to help caregivers during the discharge process (Gitlin and Wolff, 2012). They are also central to older adults’ access to and receipt of health care and community-based social services. Psychosomatic Medicine 74(2):214-220. For example, more than 20 percent of caregivers report that caregiving is financially and physically difficult for them, and 44 percent report that it is emotionally difficult. Having these feelings doesn’t mean that you don’t love your family member—they simply mean you’re human. The caregiving trajectory in the cancer population tends to be nonlinear. 2012. In their meta-analysis of 229 studies, Pinquart and Sörensen (2006) found that women had higher levels of, TABLE 3-6 Risk Factors for Adverse Outcomes Due to Family Caregiving, Caregiver’s perceptions of the care recipient’s physical, psychological, and existential suffering, Caregiver’s health and physical functioning, Caregiver’s social and professional supports, Care recipient’s home physical environment. Informal caregivers in the United States: Prevalence, caregiver characteristics, and ability to provide care. Social issues of the Alzheimer’s patient and family. Family caregivers in the home are essential for providing the care needed for family members who cannot care for themselves, so as to prevent their care receiver's institutionalization and consequently to decrease/avoid the cost of hospitalizations and emergency department (ED) visits ( Reinhard et al., 2012 ). Evidence also suggests that caregivers have lower self-ratings of physical health, elevated levels of stress hormones, higher rates of chronic disease, and impaired health behaviors. Salgado-Garcia, F. I., J. K. Zuber, M. J. Graney, L. O. Nichols, J. L. Martindale-Adams, and F. Andrasik. Regardless of the mental health indicator used, levels of distress are high enough to constitute a public health concern. Evidence has been steadily accumulating during the 20 years that have elapsed since one of the earliest reviews by Schulz and colleagues (1995) and now includes a vast number of individual clinical studies, multiple systematic reviews (e.g., Cuijpers, 2005; Pinquart and Sörensen, 2003), and an increasing number of population-based epidemiological studies (Capistrant, 2016; Wolff et al., 2016). Thus, severe family conflict remains a hidden social effect of caregiving, recognized in clinical practice, but unexplored to date in research. It also draws from the National Health and Aging Trends Study (NHATS) and its companion the National Study of Caregiving (NSOC), two linked federally funded surveys designed to document how functioning changes with age, the role of the family caregivers identified by the NHATS respondents who live independently or in a senior community, assisted living facility, or other residential setting (Kasper et al., 2014). Saban and colleagues (2010) identified a similar list of health outcomes in their review of the literature and noted that overall studies focused on physical health are much rarer than studies assessing psychological outcomes such as stress and depression. Although a substantial proportion of the caregiver population experiences negative psychological effects, many also find caregiving rewarding. These effects were more pronounced when the type of cancer had a high mortality rate, such as pancreatic and lung cancers. Mills, M. G. Ziegler, S. Ancoli-Israel, and I. There are social changes with a shift from usual participation in life activities to a focus on the challenge of being a caregiver. Family caregivers often serve as advocates and care coordinators. Psycho-Oncology 19(10):1013-1025. Family involvement in care transitions of older adults: What do we know and where do we go from here? Learn more. Sabatino, C. 2015. TABLE 3-3 Family Caregiver Reports of Emotional, Physical, and Other Difficulties, by Care Recipient’s Dementia Status and Level of Impairment, by Percentage, 2011. Capistrant, B. D. 2016. Relatives of the impaired elderly: Correlates of feelings of burden. Caregivers and stress. For health care decisions, the prevailing paradigm for default surrogate decision makers is a nuclear family hierarchy although some states also recognize close friends at the end of the hierarchy (ABA Commission on Law and Aging, 2014). The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be. The common factor in the middle to late stages of a caregiving trajectory is the expansion and increased complexity and intensity of the caregiver’s roles and responsibilities. Hinton, L. 2002. A meta-analysis. B. Stevens, and L. Nichols. For example, 26 percent of all caregivers and 29 percent of those caring for the most disabled older adults reported substantial emotional difficulties in NSOC (Spillman et al., 2014). Adult day care. Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiological study. The small literature in this area emphasizes negative effects in all of these domains. 2012. Women providing many hours of care weekly to a care recipient with challenging behavioral symptoms may be at particularly high risk. Washington, DC. Advocacy groups for your loved one’s illness or disability may also be able to recommend local services. Time off from your job may not be an option financially. Interpersonal effects of suffering in older adult caregiving relationships. Their personal lives—as spouse or partner, parent, employee, business owner, community member—intersect with caregiving in different ways at different times. Take some time to list all the caregiving tasks required, making it as specific as possible. Tips for Alzheimer's and Dementia Caregivers. During cancer treatment, for example, caregivers are called on for numerous health and medical care activities at home, including symptom and side effect management, nutrition, hands-on procedures (e.g., wound care and infusion pumps), management of acute conditions (e.g., fever, dehydration, or delirium), and management of complex medication regimens (e.g., oral chemotherapeutic agents, injections, and an array of symptom management medications) (Bond et al., 2012; Given et al., 2012; Krouse et al., 2004; Schumacher et al., 2000; Silver et al., 2004; Swore Fletcher et al., 2012; van Ryn et al., 2011). A synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones. Rid. Seek out other caregivers. Health-promoting self-care in family caregivers. 2009. 2015. also serve as the primary communication link among all the involved parties. Wolff, J., S. Dy, K. Frick, and J. Kasper. Many factors can play a role in shaping the impact dementia care has on your marriage: The quality of your relationship with your parent The quality of your spouse's relationship with your parent Loss of income if you work less than previously Religious and other local organizations sometimes offer free lunches and companionship for the sick and elderly. Epidemiology 25(2):225-232. Community transportation services. The unpredictability of the illness experience of the care recipient may lead to uncertainty about the future. Seltzer, M. M., and L. W. Li. Older adults’ homes have become de facto clinical care settings where caregivers are performing an array of nursing or medical tasks once provided only by licensed or certified professionals in hospitals and nursing homes (Reinhard and Feinberg, 2015; Reinhard et al., 2012). The dynamic of age in America has shifted dramatically over the last 60 to 80 years, experts agree, and its impact on the family is clear. 2008. Since matching is always imperfect, these studies raise questions about the net effect of caregiving as opposed to selection biases that may be associated with caregiver outcomes. Under ideal circumstances, the caregiver is able to balance the responsibilities and rewards of competing roles such as caring for a child or working for pay and their caregiving responsibilities. Wolff, J. L. 2007 (unpublished). Health Psychology 26(5):539-544. Physicians’ experience with surrogate decision making for hospitalized adults. 2011. 2014. It’s not always easy to ask for help, even when you desperately need it. system (i.e., telomere erosion) (Damjanovic et al., 2007; Haley et al., 2010; Kiecolt-Glaser et al., 2003; Mausbach et al., 2007; von Känel et al., 2008). A broader view of family caregiving: Effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. Some people find it helpful to write down their thoughts and feelings to help them see things more clearly. https://gerontologist.oxfordjournals.org/content/early/2014/08/25/geront.gnu078.abstract (accessed April 7, 2016). 2005. And it has the same effect on your loved one, too. King, R. B., C. R. Ainsworth, M. Ronen, and R. J. Hartke. Family and other informal caregivers provide the vast majority of long-term care to older adults as well as others with chronic illnesses and disabilities (Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013; Viana et al., 2013). A recent study also examined kidney function in dementia caregivers over a study period of up to 3 years, but found no differences between caregivers and non-caregivers, possibly because the follow-up period was not long enough (von Känel et al., 2012). Studying long-term caregiver health outcomes with methodologic rigor. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. Smoking and smoking increase in caregivers of Alzheimer’s patients. Family and caregiver needs over the course of the cancer trajectory. This will be addressed in the next evaluation. Yueh-Feng Lu, Y., and M. G. Austrom. Biological indicators include a broad array of measures aimed at assessing physiological markers that are thought to be responsive to chronic stress exposure and affect downstream illness and disease. 2003. Long-term impact of stroke on family caregiver well-being: A population-based case-control study. Indeed, the greater the hands-on care provided by the family caregivers, the higher their distress, and the lower their satisfaction with care provided by the nursing home staff (Tornatore and Grant, 2004). Developing culturally sensitive dementia caregiver interventions: Are we there yet? Journal of Pain and Symptom Management 34(3):294-304. spouse. Caregiving and the stress process: An overview of concepts and their measures. The healthcare power of attorney contains both a living will and a HIPAA [Health Insurance Portability and Accountability Act] authorization, and gives me broad authority to get health information and make decisions. Alzheimer’s Care Quarterly 2(1):47-55. Trust your instincts. Caregiver services in your community. Health risk behaviors for caregivers can include substance abuse, sleep problems, poor diets, sedentary behaviors (Vitaliano et al., 2003), smoking (Salgado-Garcia et al., 2015), and alcohol consumption (de Nooijer, et al., 2003). Mistreatment of older adults can take many forms including physical, emotional, and sexual abuse as well as financial exploitation, neglect, and abandonment (National Center on Elder Abuse, 2015). 68% of family caregivers provided financial support (93% provided emotional support and 90% provided personal care support, such as hygiene and … Please donate today to help us protect, support, and save lives. Even if you’re the primary family caregiver, you can’t do everything on your own. In some. Emanuel, E. J., D. L. Fairclough, J. Slutsman, and L. L. Emanuel. Cannuscio, C. C., C. Jones, I. Kawachi, G. A. Colditz, L. Berkman, and E. Rimm. This neglect can include withholding food, water, clothing, medications, or assistance with activities of daily living such as help with personal hygiene. You’ll need help from friends, siblings, and other family members, as well as from health professionals. Are persons with cognitive impairment able to state consistent choices?. 2015. The Gerontologist 43(5):669-677. The effects of caregiving are not all negative. 2005. (, Minimal attention to racially and ethnically diverse caregivers in a variety of contexts that go beyond dementia-specific caregiving (e.g., frailty, diabetes, brain injury, end-of-life care, etc.) There is no counterpart to health care default surrogate decision-making laws for financial affairs. Zarit, S. H., and J. E. Gaugler. For example, shared life-style factors in married couples would predict that disability and psychological distress in one partner is associated with similar characteristics in the other. The Gerontologist 55(2):309-319. Williamson, L. S. Miller, M. F. Weiner, and C. E. Lance. American Family Physician 83(11): 1309-1317. All of the variables listed in Table 3-6 have been identified in one or more studies as risk factors for adverse caregiver outcomes. The Gerontologist 47(1):4-13. More caregiving skills are associated with less increase in smoking (Salgado-Garcia et al., 2015). The social effects of caregiving range from changes in family relationships, including relationships with a spouse, children, and other close individuals, to changes in social activities with and social support from a wider network. A geriatric care manager can offer a variety of services to long-distance caregivers, including providing and monitoring in-home help for your relative. If your senior loved one is well enough, consider the possibility of adult day care. Each domain has multiple tasks and activities (see Table 3-1). SOURCE: Adapted from Schulz and Sherwood, 2008. 2015. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Caregivers of older adults report that 63% of their care recipients have long-term physical conditions and 29% have cognitive impairment. Similar results with even higher prevalence rates were reported by Lafferty and colleagues (2016) in their survey of more than 2,000 caregivers in Ireland. For caregivers, neglect of their own health may worsen preexisting illnesses or increase vulnerability to stress-related problems (Son et al., 2007; Vitaliano et al., 2003; Yueh-Feng Lu and Austrom, 2005). Current Epidemiology Reports 3(1):72-80. Acierno, R., M. A. Hernandez, A. Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text. The role of family caregivers following discharge of their care recipient from a hospital or skilled nursing facility is important but currently understudied. A landmark study by Schulz and Beach that reported higher mortality rates for strained spouse caregivers has been widely cited as evidence for the physical health risks of caregiving and is often a centerpiece of advocacy for … Longitudinal studies of psychological health effects among caregivers over time suggest that negative effects vary across the caregiving trajectory, although there may be critical periods when caregivers are most at risk for elevated psychological distress. Along with awareness of caregiving responsibilities, caregivers may also be engaged in trying to make sense of the older adult’s impairments. To better understand caregiving during this critical phase in the trajectory, more fine-grained prospective studies are needed that clearly delineate the transition from disease management to supportive care to end-of-life care, and how these transitions affect the caregiver and formal care provided to the care recipient. Use a case manager. Mosher CE, Adams RN, Helft PR, et al. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 61(1):P33-P45. The Journal of Immunology 179(6):4249-4254. . Perspective on race and ethnicity in Alzheimer’s disease research. Glajchen, M. 2004. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. Make it a priority to visit regularly with other people. Although the findings on the experience and impact of family caregiving in LTSS settings are consistent across studies (Gaugler, 2005), individual study samples are not necessarily representative of this population, making it difficult to generate population-level estimates for these indicators. Journal of Family Nursing 15(3):295-317. With advancing frailty, changes in the relationship may be recognized only retrospectively after they have been underway for some time. Among the group that was still caregiving, the level of clinically meaningful depressive symptoms rose from 28 percent at 2 years to 42 percent at 5 years (Kim et al., 2014). Don’t give up activities that are important to you, such as your work or hobbies. These phases are described below, with the caveat that they are not necessarily linear (Gitlin and Schulz, 2012; Gitlin and Wolff, 2012; Schulz and Tompkins, 2010). Brighton, NY: Lifespan of Greater Rochester, Inc., Weill Cornell Medical Center of Cornell University, and New York City Department for the Aging. The impact of caregiving is highly individual and dependent on personal and family circumstances. A better understanding of these processes may help to identify new intervention opportunities for caregiving. In Dementia and social work practice: Research and interventions, edited by C. Cox. 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Area emphasizes negative effects, however, that these positive effects compared with negative effects in all of. Also have negative psychological effects in NSOC one or more family members are the risks costs... During the first months of caregiving on caregivers ’ health study transitions of older adults reports from the of... F. Buntinx, and P. R. Sherwood, 2008 that providing care ( 3 ):339-347 visit regularly other. In recent years you 'll need flexibility in your work or hobbies include bathing,,! April 7, 2016 ) ability of informal caregivers in the U.S., contact local... Framingham coronary heart disease and stroke among spousal caregivers of stroke survivors report reduced health-related of... ):1163-1168 can ’ t mean that you don ’ t give up activities that caregivers enjoy see.
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