Rosalyn Carter once 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” (National Family Caregivers Association, n.d., para. 1). A caregiver is “one who contributes the benefits of medical, social, economic, or environmental resources to a dependent or partially dependent individual” (Mosby’s Dictionary, 2006, p. 313). Caregivers may include spouses, family members, or friends who provide unpaid care to an adult or child recipient with special needs (Johnson & Weiner, 2006; C.J. Lee, 2009; M. Lee, 2008; National Alliance for Caregiving [NAC], 2009). In 2009, there were 66 million caregivers in the United States, a figure that is expected to rise as the number of chronic illnesses increases within the Baby Boomer population (NAC, 2009).
Sixty-six percent of all caregivers are married women with an average age of 49. These same women, who will spend more than 20 hours each week caring for a chronically ill loved one, will simultaneously be caring for children or grandchildren living in the same home. This type of situation will typically continue for an average of 4.6 years (NAC, 2009). A caregiver frequently spends his or her time arranging and providing multiple services for the care recipient, including but not limited to: transportation, meal preparation, activities of daily living, housekeeping, and managing finances and medications (NAC, 2009, n.d.). Caregivers are invaluable to society because they provide essentially free services to the care recipient. In 2009, these services were estimated to be valued at $375 billion per year in the United States, nearly twice as much as home care and nursing home services combined (Evercare & NAC, 2009). In the absence of a formal caregiving system in the United States, informal care provided by family and significant others is universally recognized as the foundation of the long-term care system (Office of the Assistant Secretary for Planning and Evaluation [ASPE], 2007; Schacke & Zank, 2006).
Caregiving can be a rewarding and positive experience but it can also be extremely demanding and stressful. It can also have a negative effect on the caregiver’s overall health and well-being. The term caregiver stress reflects the actual or perceived physical or emotional strain experienced by the caregiver as a result of caregiving activities (Fredman, Cauley, Hochberg, Ensrud, & Doros, 2010; WomensHealth.gov, 2008). Several factors can lead to caregiver stress, including the level and intensity of the care recipient’s needs, physical strain, behavior and attitudes of the care recipient, sleep disturbances, emotional factors, financial hardship, and lack of support from others (Fredman et al., 2010; NAC, 2009; Office of the ASPE, 2007).
Several theoretical models have been used to predict the significant long-range impact of caregiver stress on caregiving. The Caregiver Stress Theory developed by Tsai (2003) proposes that demographic characteristics, caregiving burden, stressful life events, social support, social roles, and relationships affect caregivers’ perceptions of caregiver stress and depression. In turn, depression and perceived stress affect outcomes such as health and wellness, physical function, self-esteem, interpersonal relationships, role enjoyment, and marital satisfaction. As caregivers are exposed to stressors, they go through a process of appraisals of demands and adaptive capacities. If demands are too high or too threatening—or their support resources are too limited—the caregiver perceives increased stress. As caregivers perceive stress and assess their adaptive capacities, they respond in adaptive or maladaptive ways. Prolonged, unresolved stress leads to maladaptive emotional and behavioral responses, which increase caregiver depression, illness, morbidity, and mortality.
Caregiver stress is often unacknowledged by health care providers, and scholars suggest this is caused by significant knowledge deficits. Specific deficits include the failure of the health care team to understand caregiver roles and caregiver-care recipient relationships; a lack of recognition and understanding of caregiver stress signs and symptoms; and the failure to recognize potential for mistreatment, neglect, and abuse, all of which have especially broad implications for practice (Acton & Carter, 2006; Blake, 2008; Carretero, Garcés, & Ródenas, 2007; Cloutterbuck & Mahoney, 2009; Honea et al., 2008; M. Lee, 2008; Sandford, Johnson, & Townsend-Rocchiccioli, 2005; Zarit & Femia, 2008). Other knowledge deficits among health care providers include recognition of the need for services to assist caregivers, recognition of gaps in service, resources available regarding caregiver stress, how to access community resources for caregivers, interventions to decrease and prevent caregiver stress, and understanding that faster decline of dependent care recipients occurs when caregiver stress exists (Family Caregiver Alliance [FCA], 2009; Honea et al., 2008; Martin-Carrasco et al., 2009; Mossello et al., 2008; Sandford et al., 2005; Schacke & Zank, 2006; Zarit & Femia, 2008).
Nurses in particular need to identify signs and symptoms of caregiver stress, recognize the impact of caregiver stress on patient-family dynamics, and decrease its negative effects by using evidence-based practice interventions. The purpose of this article is to define caregiver stress, discuss the impact that caregiving has on a caregiver, provide assessment principles to identify caregiver stress, and include evidence-based interventions that support health-promoting behaviors among caregivers.
Signs and Symptoms of Caregiver Stress
Caregiver stress—actual or perceived—can have a negative impact on the caregiver’s psychological and physical health, family dynamics, and financial interests (American Psychological Association, n.d.; Au et al., 2010; Campbell, 2009; Evercare & NAC, 2009; Johnson & Wiener, 2006; King & Semik, 2006; C.J. Lee, 2009; MetLife Mature Market Institute, 2011; NAC & Evercare, 2006; The White House, Office of the Press Secretary, 2010; Schultz & Sherwood, 2008; WomensHealth.gov, 2008). The NAC (2009) conducted interviews with a random sample of more than 1,480 caregivers and found that the longer a caregiver provided care, the more likely he or she was to report psychological stress. When caregiving intensifies or a caregiver is overwhelmed with the responsibilities of caregiving, the caregiver may develop feelings of sadness, grief, guilt, or anger, any of which can lead to depression (Alzheimer’s Association, n.d.; Mayo Clinic, 2010; NAC & Evercare, 2006). Table 1 includes the signs and symptoms of caregiver stress.
Table 1: Signs and Symptoms of Caregiver Stress
The longer a caregiver provides caregiving activities, the more likely that his or her physical health will worsen (Au et al., 2010; Mausbach et al., 2010; NAC, 2009; Schultz & Sherwood, 2008). Physical health of the caregiver can be compromised with exposure to chronic stress. Research by Mausbach et al. (2010) suggested that chronic stress from caregiving may be linked to increased risk of cardiovascular disease in older caregivers. In addition, risky health behaviors such as poor diet, substance abuse, and/or reduced self-care behaviors may contribute to increased risks for high blood pressure, heart disease, obesity, and diabetes (Hartke, King, Heinemann, & Semik, 2006; Mayo Clinic, 2010). Studies by C.J. Lee (2009) and Sanford et al. (2005) suggested that physical symptoms (Table 1) were frequently experienced by caregivers. The physical health of a caregiver deteriorates with physically demanding tasks such as heavy lifting, as well as with feelings of distress and depression. The caregiver’s perspective of physical health may be related to psychological health. A study by Au et al. (2010) revealed that the caregiver’s perception of personal physical health was predictive of depressive symptoms. The study recommended implementation of interventions that promote the perception of positive physical health with the purpose of maintaining good psychological well-being.
Impact of Caregiver Stress
Family dynamics, the ways in which family members communicate and relate to one another, can also be negatively affected by caregiver stress. In a study conducted by White et al. (2010) involving 567 families in the United States, Finland, and Iceland, in general, families in the United States and Iceland had more negative family dynamics during chronic illness. In the United States, larger families with less education that lacked services, economic supports, and had limited access to the health care system experienced isolation, disorganization, and role conflict. In contrast, younger families whose members were educated, communicated clearly, were flexible, and contributed mutually to caregiving responsibilities had more positive family dynamics. The findings from the study also suggest that families in Finland and Iceland rated higher than the United States in dimensions of family dynamics related to mutuality, flexibility, and communication. The authors concluded that this finding may be due to differences in health and social policies.
The economy, combined with the costs of caregiving, can increase financial hardship, which may add additional stressors to caregivers. According to the survey by Evercare and NAC (2009), the downturn of the economy has added financial stress to the caregiving role. Caregiving costs increased for 13% of these caregivers, leading to a struggle for personal basic needs. The impact of financial stress led to one in five caregivers moving into the same home as the care recipient to cut expenses, turning caregiving into a 24-hour-per-day job. Another 47% of those surveyed used all or most of their own savings, and 15% lost their jobs (either due to caregiving responsibilities or layoffs), further decimating funds that had been saved for personal retirement (Evercare & NAC, 2009). Over the course of a lifetime, the financial consequences to a non-professional female caregiver are approximately $659,139 (FCA, 2009). The MetLife Mature Market Institute (2011) found that Baby Boomers caring for their aging parents lost an estimated aggregate in wages, pension, and Social Security benefits totaling $3 trillion.
Care recipients can also be negatively affected by caregiver stress. Certain behaviors of the care recipient, such as psychological aggression and physical assault, can add to the stress of the caregiver and possibly lead to physical abuse or neglect of the care recipient (Famakinwa & Fabiny, 2008; Wiglesworth et al., 2010). In a Korean study, M. Lee (2008) noted elder abuse by caregivers who experienced personal changes in psychological/physical health, family, or finances, or who cared for recipients with cognitive impairment. In addition, abuse increased when caregivers used informal social support, defined as help from secondary primary caregivers versus formal social support from visiting nurses, paid home care, or day care programs. Unfortunately, the impact of caregiver stress on the caregiver often results in premature institutionalization of care recipients with chronic illness (Campbell, 2009; Carretero et al., 2007; Office of the ASPE, 2007; Sandford et al., 2005).
Caregiver Stress Assessment
A caregiver stress assessment is a systematic process of gathering information and recognizing, respecting, and addressing caregiver needs about a caregiving situation. A thorough caregiver stress assessment helps practitioners understand the caregiver’s situation. Specifically, the assessment yields information about roles, skills, and abilities of the caregiver to provide care to a family member, eligibility of available services, and caregiver health needs that may impact caregiving. In addition, the assessment provides information on potential risk factors for caregiver stress and opportunities for referrals. The initial assessment should be arranged at a location and time convenient to the caregiver.
A formal assessment is completed for all new patients and can be initiated by a professional referral or a caregiver’s self-referral. Assessments should be conducted at the time of diagnosis or when there is a decrease in functional status, change in status, or an alteration in care transitions for the care recipients and/or the caregivers. Additionally, assessments are triggered when requested by the care recipient, when the caregiver has health or workplace issues, or when concerns are expressed from other family members or friends. Prior to completing an assessment, nurses need to identify the primary and informal caregivers. When multiple caregivers are involved, conflict identification and intervention may be a necessary part of the assessment process. The assessor explains the assessment process so that the caregiver knows explicitly what information is being collected and why. Ideally, the assessment team is intraprofessional in nature and should include physicians, nurses, social workers, and case managers familiar with available resources. When a team is not readily available, the nurse needs to be able to take the initiative in the assessment and refer as needed. An assessment conference, which is multidimensional and reflective of culturally competent practice, results in a plan of care that indicates measurable outcomes. Reassessment is an ongoing process that should occur, at a minimum, every 3 to 6 months (FCA, n.d.) or when there is a change in patient or caregiver status (Table 2).
Table 2: Components of a Comprehensive Caregiver Assessment
Several formal tools are available for caregiver assessment. The Daily Tasks Appraisal is a 20-item self-report tool that provides a quick assessment of functioning capacities and abilities of the caregiver to complete everyday life tasks (State of New Jersey, Department of Health and Senior Services, 2005). The Caregiver Self-Assessment Questionnaire (CSAQ) was developed by the American Medical Association (n.d.) to measure caregiver emotional and physical distress.
The Tailored Caregiver Assessment and Referral (TCARE), accessible at http://www4.uwm.edu/tcare, provides a systematic process for assessing caregiver needs, caregiver burden, and depression (Montgomery & Kwak, 2008). This questionnaire includes 32 items that relate to caregiver activities, obligations, and resources, as well as the physical and mental condition of the care recipient (Montgomery & Kwak, 2008). The main feature of TCARE is a set of maps or algorithms that guide the nurse to make decisions about specific needs of caregivers. Nurse use the TCARE tool to complete an assessment and select one of six decision maps to identify goals, strategies, and services. Nurses can then discuss the assessment findings with the caregiver, provide options for obtaining services, and develop a comprehensive care plan.
Pearlin’s Caregivers’ Stress Scale assesses stress, family roles, and caregiving competence (Hilgeman et al., 2009). It consists of 15 questions using 3-point to 5-point scales and includes topics on primary stressors (cognitive status, problematic behavior, overload, relational deprivation), secondary role strains (family conflict, job-caregiving conflict, economic strains), secondary instrapsychic strains (role captivity, loss of self, caregiving competence, personal gain), and mediators (management of situation, management of meaning, management of distress, expressive support). While several caregiver assessment tools are available, it is important these tools be approved by the organization for nursing use and that policies and procedures for their use are established.
Roberta (all names are pseudonyms), a 60-year-old married woman, has been providing unpaid 24-hour care for 8 months to her husband, Tom. Tom has early Alzheimer’s disease and chronic obstructive pulmonary disease (COPD). Tom has a frequent productive cough, becomes dyspneic with mild activity, and has a history of frequent upper respiratory infections. Roberta repeatedly reminds Tom to properly use and dispose of tissues filled with mucus, but she finds them everywhere.
Tom’s cognitive status has declined. He is forgetful, has difficulty performing complex tasks, and becomes withdrawn in challenging situations. Most recently, Tom went outside to water his garden but did not come back into the house. When Roberta went to look for him, she found the water running but Tom was not in the yard. She could see Tom leaning against a pole down the street. As she came within reach of him, she noticed he was crying, wheezing, and short of breath. When Roberta approached him, he asked her if she knew where he lived. He did not recognize her.
Tom is admitted to the hospital for COPD exacerbation. Tom’s nurse, Marianne, initiates a caregiver assessment on admission. Roberta tells Marianne:
Tom forgets things sometimes so I help him wash, get dressed, and decide what to wear every day. I watch my 4-year-old granddaughter when my daughter goes to work, and sometimes she’ll remind Tom to eat. He gets so distracted sometimes. Tom can’t remember any of his doctors’ names, phone numbers, or where their offices are located, so I have to arrange and drive him to his appointments. I do not like to leave him alone because I don’t know what he’ll do or where he will go, but I work part time. When I am at work, there isn’t anyone at home to make sure that Tom wears his oxygen, takes his medicine, or gets his nebulizer treatments. When I am home, Tom and I take our medicine at the same time. I take medicine for high blood pressure and cholesterol.
To help Roberta analyze her own behavior and health risks, as well as identify needed services that would be beneficial to her and Tom, Marianne asks Roberta to complete the CSAQ and encourages her to talk more about what is happening in her life. Although hesitant at first to talk about her situation, she gradually discusses her feelings:
I feel so alone and overwhelmed. I know I am overweight and don’t take care of myself, but I am so tired and my body aches all of the time. Besides, it would be selfish of me to be thinking about going to the gym or hairdresser when Tom needs me so much. I know I shouldn’t complain.
Roberta starts to cry and apologizes for becoming emotional. Marianne shares the findings of the CSAQ with Roberta. The results suggest that Roberta is experiencing a high amount of caregiver stress, which is increasing her own health risks. Roberta acknowledges her roles as a spouse, mother, and grandmother but does not recognize herself as a caregiver. Roberta needs support but does not know where to go for help. She is entirely unaware of the community services that are available.
Sharing the knowledge gained from the caregiver stress assessment with the caregiver promotes recognition of the need for assistance in caregiving. Nurses need to educate, encourage, and assist caregivers to seek appropriate resources and services.
Marianne assures Roberta that her caregiving role is valued and indicates health care professionals are available to assist in addressing her caregiver burden. Recognizing that an intraprofessional approach is needed, Marianne calls a team meeting that includes Tom’s physician, nursing, social services, case management, Roberta, and her daughter.
Involving caregivers in the choice of interventions and development of a long-term plan of care promotes adherence to treatment plans, support for care recipients, and healthy lifestyle behaviors (McMillan et al., 2006). Provision of multidisciplinary services and support for caregivers and care recipients is essential (Campbell, 2009; Honea et al., 2008; Zarit & Femia, 2008).
The team discusses several Internet resources such as the Alzheimer’s Association and Medicare, as well as caregiver support groups, community resources, and caregiving assistance available regarding adult day care at the local Council on Aging, Meals on Wheels, and personal care/homemaker services that are provided by a local agency. The nurse and Roberta create an individualized intervention plan. The nurse lists the names, addresses, telephone numbers, and websites of all of the agencies discussed and gives them to Roberta. The nurse encourages Roberta to use these services so that Tom will be in a safe environment while she is at work and so she can have respite and time to care for herself.
Meeting Caregiver and Care Recipient Needs
Nursing interventions are tailored to meet the specific needs of caregivers and care recipients. These interventions include the use of multidimensional resources to address emotional and physical caregiver needs and encourage the use of a range of services and support to assist in providing care for the care recipient (Bakas, Pressler, Johnson, Nauser, & Shaneyfelt, 2006; Blake, 2008; Honea et al., 2008; Loue, Lowder, Buzney, & Buzo, 2006; Martin-Carrasco et al., 2009; Mioshi et al., 2009; Mossello et al., 2008; Zarit & Femia, 2008). Nurses should assist caregivers in locating available services (Table 3). Services designed to assist caregivers and care recipients include:
- Assistance with care management, personal care, homemaker services, and shopping.
- Treatments, medications, supplies, and education/training.
- Mobility assistance, physical therapy, and home modifications.
- Adult day care, activity planning, and transportation.
- Assistive technology for symptom monitoring and emergency response.
- Child care, emotional support, and respite.
- Support groups, family counseling, and management of behavioral issues.
- Legal and financial information and planning.
Table 3: Additional Resources on Caregiver Support
Marianne assists Roberta in identifying which resources and services would be most helpful for her and Tom. After talking with Marianne, Roberta decides she will speak with spiritual counsel through her church for her own emotional support. She and her daughter will apply for reduced rate child care services. When her husband is discharged from the hospital, the plan is for him to go to short-term rehabilitation for 1 to 2 weeks. Roberta will arrange for a home health aide for Tom’s daily care and housekeeping when he comes home. Roberta also decides to arrange for adult day care 4 days per week and requests services to address his behavioral issues related to his Alzheimer’s disease.
Benefits of community support services include reduction in and better management of caregiver stress, enhanced care recipient function and caregiver role maintenance, support of family dynamics, reduced gaps in caregiving, and improved illness management (Martin-Carrasco et al., 2009; Mioshi et al., 2009; Mossello et al., 2008; Office of the ASPE, 2007). Assisting caregivers in selecting community programs sensitive to family values decreases early nursing home institutionalization and reduces care costs and hospitalizations (Choi, Tirrito, & Mills, 2008; Mossello et al., 2008; Office of the ASPE, 2007; Schacke & Zank, 2006).
Caregivers perceive many issues and challenges in the caregiving role. Caregivers have reported that consistent support services and resources may be limited or unavailable (Blake, 2008; Carretero et al., 2007; Martin-Carrasco et al., 2009). In addition, caregivers often lack time to seek out services due to constant caregiving burdens. Caregivers also acknowledge reluctance to use services due to reasons such as fear of strangers in the house, alterations in care recipient routines, and lack of control (Cloutterbuck & Mahoney, 2009; Mioshi et al., 2009). Nurses must be aware of these barriers to educate caregivers (Table 4). Caregivers often insist on providing all aspects of care themselves; therefore, they need encouragement to use services (Bakas et al., 2006; Blake, 2008; Carretero et al., 2007; Cloutterbuck & Mahoney, 2009).
Table 4: Barriers to Acceptance of Community Support Services and Resources
Marianne contacts the discharge planning nurse to discuss available community services with Roberta and encourages her to express her concerns and fears about using services. Based on this information, the discharge planning nurse facilitates family meetings with service agency representatives to help positively support Roberta and Tom and influence their perceptions and decision to use services.
Improving Caregivers’ Well-Being and Coping Skills
Health-promoting self-care behaviors maintain optimal functioning and increase general well-being (Acton & Carter, 2006; Blake, 2008; Choi et al., 2008; Honea et al., 2008, C.J. Lee, 2009; M. Lee, 2008). Interventions for assisting caregivers to improve coping skills and health promotion include formal cognitive behavioral psychotherapy (Blake, 2008; Honea et al., 2008; McMillan et al., 2006; Martin-Carrasco et al., 2009).
Marianne consults with the psychiatric clinical nurse specialist to work with Roberta in developing adaptive coping skills. Marianne discusses the benefits of complementary and alternative therapies, such as massage and healing touch, that have been shown to be effective (Honea et al., 2008). Marianne also encourages Roberta to use respite services where she can go to stay for a day or two to allow herself time to rejuvenate from the stresses of caregiving. The nurse also discusses the need for Roberta to take care of herself and to get adequate sleep, nutrition, and exercise.
Advocating for respite from caregiving, a primary need for caregivers, has been found to be effective (Blake, 2008; McMillan et al., 2006). Research has also shown additional beneficial interventions to improve caregivers’ well-being include promoting sleep, nutrition, exercise, use of formal and informal support groups, spiritual support, and finding time for self (Acton & Carter, 2006; Choi et al., 2008).
Before Tom is discharged to the short-term rehabilitation facility, the nurse reviews the caregiving intervention plans with Tom and his family. Roberta is able to identify major caregiver stress areas. She acknowledges the team’s deliberation regarding the importance of her caregiving role and the nurse’s support that has been instrumental in helping her find ways to decrease stressors. Roberta recognizes the signs and symptoms of caregiver stress and adaptive methods to decrease her stress by identifying a plan for taking care of herself and keeping communication open with family and friends. An adult day care center, which specializes in Alzheimer’s disease behavioral issues, will be used to provide Roberta some respite. Concerns and reluctance about using services have been addressed, and Roberta has spoken at length with the service agency representatives. Roberta is receiving spiritual counsel through her church and emotional support through a local support group, and her daughter has found part-time child care services with affordable rates.
Caregivers need assistance to identify ways that family members, friends, and religious/spiritual groups can offer emotional support. Recognition, acknowledgement, and understanding of each individual caregiver role, relationship, and circumstance are essential (Zarit & Femia, 2008). Caregivers need to be fully informed, have their needs recognized, have respite from caregiving, and have emotional support. Approaches to incorporate these into practice include:
- Involve the caregiver in identifying stressors, individual strengths, and caregiver stress symptoms.
- Facilitate a multidisciplinary approach to supportive interventions and care plan development.
- Assist the caregiver in identifying community resources/services and initiating referrals for use.
- Develop an ongoing evaluation plan with the caregiver.
Legislative Support for Caregivers
Nurses who remain informed about available legislative supports can use this knowledge in their practice to inform and better assist patients and caregivers. In addition, nurses who remain actively involved at the policy level (locally, regionally, or nationally) act as patient advocates. Nurses can make a difference in patient care by becoming members of nursing associations and organizations that legislate and support nurses and nursing practice. Nurses can also contact local political leaders to learn about current issues and ways to get involved in activities that will support important health care decisions regarding care transitions, chronic care, end-of-life issues, home-based services, intergenerational families, and long-term care.
Recognizing family caregivers as an important part of the nation’s long-term care delivery system, the federal government established the National Family Caregiver Support Program (NFCSP) in 2000. The NFCSP provides services that are directly targeted to family caregivers (e.g., adult day care, home care, home modifications) who are older individuals with the greatest economic or social need. In addition, provisions in the 2010 Patient Protection and Affordable Care Act (PPACA) will improve support systems for caregivers through the Community Living Assistance and Support Services program and will be implemented over the course of the next several years. This Act includes new voluntary long-term services and insurance support for care. The PPACA program will administer $68 million in funding to support older adults, individuals with disabilities, and caregivers (NAC, n.d.).
Nurses should be aware that the Elder Justice Act, part of the PPACA, authorizes funding for Adult Protective Services and provides grants for long-term care via the Caregivers and Veterans Omnibus Health Services Act (2009). Congress has also passed the National Alzheimer’s Project Act (2010), which will be implemented at the state and federal levels. This program provides better support to employed family caregivers through paid family leave programs, job protection, and paid sick time. At the state level, bills under this Act were introduced addressing the creation of Lifespan Respite Program coalitions and the creation of pilot programs within Medicaid to empower beneficiaries, and provide partial compensation to family caregivers. Additional funding is provided to the Medicaid Home and Community-Based Services, which allows more people to remain in their homes instead of moving into institutional care.
The Community-Based Care Transitions Program targets Medicare beneficiaries and is focused on creating and funding collaborations between hospitals and community-based organizations to facilitate care transitions. Under the Family and Medical Leave Act of 1993, caregivers who must take time off from work to care for a parent, spouse, or child with a serious health condition may do so without fear of jeopardizing their jobs (Colello, 2008). Finally the Caregiver Tax Relief Act, which continues to be introduced in Congress, amends the Internal Revenue Code to allow caregivers of family members or dependents with long-term care needs a refundable income-based tax credit of $2,500 for each such family member or dependent.
Given the anticipated growth in the number of chronically ill older adults with multiple comorbidities, the demand for family caregivers will only increase. Caregivers need to understand health and medical information, know how to seek out and use community resources, and navigate the increasingly complex, fragmented, and costly health care system. It is critical that nurses have an understanding of caregiver stress and take an active role in educating others about its existence. Nurses have a pivotal role in assessing for caregiver stress and using evidence-based interventions that assist caregivers in the caregiving process and the adoption of health-promoting behaviors.
- AARP Public Policy Institute. (2012). Assessing family caregiver needs: Policy and practice considerations. Retrieved from http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/caregiver-fact-sheet-AARP-ppi-ltc.pdf
- Acton, G.J. & Carter, P.A. (2006). Health promotion research: Addressing the needs of older adults and their caregivers. Journal of Gerontological Nursing, 32(2), 5.
- Alzheimer’s Association. (n.d.). Caregiver stress. Retrieved from http://www.alz.org/living_with_alzheimers_caregiver_stress_lwa.asp
- American Medical Association. (n.d.). Caregiver self-assessment questionnaire. Retrieved from http://www.ama-assn.org/resources/doc/public-health/caregiver_english.pdf
- American Psychological Association. (n.d.). Understanding chronic stress. Retrieved from http://www.apa.org/helpcenter/understanding-chronic-stress.aspx
- Au, A., Lau, K.-M., Sit, E., Cheung, G., Lai, M.-K., Wong, S.K.A. & Fok, D. (2010). The role of self-efficacy in the Alzheimer’s family caregiver stress process: A partial mediator between physical health and depressive symptoms. Clinical Gerontologist, 33, 298–315. doi:10.1080/07317115.2010.502817 [CrossRef]
- Bakas, T., Pressler, S.J., Johnson, E.A., Nauser, J.A. & Shaneyfelt, T. (2006). Family caregiving in heart failure. Nursing Research, 55, 180–188. doi:10.1097/00006199-200605000-00004 [CrossRef]
- Blake, H. (2008). Caregiver stress in traumatic brain injury. International Journal of Therapy and Rehabilitation, 15, 263–271.
- Campbell, J. (2009). A model of consequences of dementia caregivers’ stress process: Influence on behavioral symptoms of dementia and caregivers’ behavior-related reactions. Research and Theory for Nursing Practice, 23, 181–202. doi:10.1891/1541-65126.96.36.199 [CrossRef]
- Caregiver Tax Relief Act of 2010, H.R. 5491, 111th Cong. (2010). Retrieved from the GovTrack.us website: http://www.govtrack.us/congress/bills/111/hr5491
- Caregivers and Veterans Omnibus Health Services Act of 2010, S. 1963, 111th Cong. (2009). Retrieved from GovTrack.us website: http://www.govtrack.us/congress/bills/111/s1963
- Carretero, S., Garcés, J. & Ródenas, F. (2007). Evaluation of the home help service and its impact on the informal caregiver’s burden of dependent elders. International Journal of Geriatric Psychiatry, 22, 738–749. doi:10.1002/gps.1733 [CrossRef]
- Choi, G., Tirrito, T. & Mills, F. (2008). Caregiver’s spirituality: Its influence on maintaining the elderly and disabled in a home environment. Journal of Gerontological Social Work, 51, 247–259. doi:10.1080/01634370802039528 [CrossRef]
- Cloutterbuck, J. & Mahoney, D.F. (2009). African American dementia caregivers: The duality of respect. Dementia, 2, 221–243. doi:10.1177/1471301203002002006 [CrossRef]
- Colello, K.J. (2008). Family caregiving to the older population: Recent and proposed legislation. Retrieved from the Senate Special Committee on Aging website: http://aging.senate.gov/crs/aging11.pdf
- Evercare, & National Alliance for Caregiving. (2009). The Evercare® survey of the economic downturn and its impact on family caregiving. Retrieved from http://www.caregiving.org/data/EVC_Caregivers_Economy_Report%20FINAL_4-28-09.pdf
- Famakinwa, A. & Fabiny, A. (2008). Assessing and managing caregiver stress: Development of a teaching tool for medical residents. Gerontology & Geriatrics Education, 29, 52–65. doi:10.1080/02701960802074289 [CrossRef]
- Family and Medical Leave Act of 1993, H.R. 1, 103rd Cong. (1993). Retrieved from GovTrack.us website: http://www.govtrack.us/congress/bills/103/hr1
- Family Caregiver Alliance. (2006). Caregiver assessment: Principles, guidelines and strategies for change. Volume 1. Retrieved from http://www.caregiver.org/caregiver/jsp/content/pdfs/v1_consensus.pdf
- Family Caregiver Alliance. (2009). Caregiving. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2313
- Family Caregiver Alliance. (n.d.). When should a family caregiver assessment happen? Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1713
- Feinberg, L.F. (2008). Caregiver assessment. American Journal of Nursing, 108(9 Suppl.), 38–39. doi:10.1097/01.NAJ.0000336412.75742.6e [CrossRef]
- Fredman, L., Cauley, J.A., Hochberg, M., Ensrud, K.E. & Doros, G. (2010). Mortality associated with caregiving, general stress, and caregiving-related stress in elderly women: Results of caregiver-study of osteoporotic fractures. Journal of the American Geriatrics Society, 58, 937–943. doi:10.1111/j.1532-5415.2010.02808.x [CrossRef]
- Hartke, R.J., King, R.B., Heinemann, A.W. & Semik, P. (2006). Accidents in older caregivers of persons surviving stroke and their relation to caregiver stress. Rehabilitation Psychology, 51, 150–156. doi:10.1037/0090-55188.8.131.52 [CrossRef]
- Hilgeman, M.M., Durkin, D.W., Sun, F., DeCoster, J., Allen, R.S., Gallagher-Thompson, D. & Burgio, L.D. (2009). Testing a theoretical model of the stress process in Alzheimer’s caregivers with race as a moderator. The Gerontologist, 49, 248–261. doi:10.1093/geront/gnp015 [CrossRef]
- Honea, N.J., Brintall, R., Given, B., Sherwood, P., Colao, D.B., Somers, S.C. & Northouse, L.L. (2008). Putting evidence into practice: Nursing assessment and interventions to reduce family caregiver strain and burden. Clinical Journal of Oncology Nursing, 12, 507–516. doi:10.1188/08.CJON.507-516 [CrossRef]
- Johnson, R.W. & Wiener, J.M. (2006). A profile of frail older Americans and their caregivers: The Retirement Project (Occasional Paper No. 8). Retrieved from the Urban Institute website: http://www.urban.org/UploadedPDF/311284_older_americans.pdf
- King, R.B. & Semik, P.E. (2006). Stroke caregiving: Difficult times, resource use, and needs during the first 2 years. Journal of Gerontological Nursing, 32(4), 37–44.
- Lee, C.J. (2009). A comparison of health promotion behaviors in rural and urban community-dwelling spousal caregivers. Journal of Gerontological Nursing, 35(5), 34–40. doi:
- Lee, M. (2008). Caregiver stress and elder abuse among Korean family caregivers of older adults with disabilities. Journal of Family Violence, 23, 707–712. doi:10.1007/s10896-008-9195-2 [CrossRef]
- Loue, S., Lowder, J.L., Buzney, S.J. & Buzo, A.M. (2006). Caring for an adult child with cognitive disabilities: Meeting the dual needs of an adult and child. Care Management Journals, 7, 191–198. doi:10.1891/cmj-v7i4a004 [CrossRef]
- Martin-Carrasco, M., Martin, M.F., Valero, C.P., Millán, P.R., García, C.I., Montalbán, S.R. & Vilanova, M.B. (2009). Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer’s disease patients’ caregivers. International Journal of Geriatric Psychiatry, 24, 489–499. doi:10.1002/gps.2142 [CrossRef]
- Mausbach, B.T., Roepke, S.K., Ziegler, M.G., Milic, M., Von Känel, R., Dimsdale, J.E., Mills, P.J. & Grant, I. (2010). Association between chronic caregiving stress and impaired endothelial function in the elderly. Journal of the American College of Cardiology, 55, 2599–2606. doi:10.1016/j.jacc.2009.11.093 [CrossRef]
- Mayo Clinic. (2010). Caregiver depression: Prevention counts. Retrieved from http://www.mayoclinic.com/health/caregiver-depression/MY01264
- Mayo Clinic. (2011). Stress symptoms: Effects on your body, feelings and behavior. Retrieved from http://www.mayoclinic.com/health/stress-symptoms/SR00008_D
- McMillan, S.C., Small, B.J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L. & Haley, W.E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106, 214–222. doi:10.1002/cncr.21567 [CrossRef]
- MetLife Mature Market Institute. (2011). The MetLife study of caregiving costs to working caregivers: Double jeopardy for baby boomers caring for their parents. Retrieved from http://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf
- Mioshi, E., Bristow, M., Cook, R. & Hodges, J.R. (2009). Factors underlying caregiver stress in frontotemporal dementia and Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders, 27, 76–81. doi:10.1159/000193626 [CrossRef]
- Montgomery, R. & Kwak, J. (2008). TCARE: Tailored Caregiver Assessment and Referral. American Journal of Nursing, 108(9), 54–57. doi:10.1097/01.NAJ.0000336418.50193.74 [CrossRef]
- Mosby’s dictionary of medicine, nursing and health professions (7th ed.). (2006). St. Louis: Mosby Elsevier.
- Mossello, E., Caleri, V., Razzi, E., DiBari, M., Cantini, C., Tonon, E. & Masotti, G. (2008). Day care for older dementia patients: Favorable effects on behavioral and psychological symptoms and caregiver stress. International Journal of Geriatric Psychiatry, 23, 1066–1072. doi:10.1002/gps.2034 [CrossRef]
- National Alliance for Caregiving. (n.d.). 2010. Retrieved from http://www.caregiving.org/legislation/year-2010
- National Alliance for Caregiving, & Evercare. (2006). Evercare® study of caregivers in decline: A close-up look at the health risks of caring for a loved one. Retrieved from http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf
- National Alliance for Caregiving (with AARP). (2009). Executive summary: Caregiving in the U.S. Retrieved from http://www.caregiving.org/data/CaregivingUSAllAgesExecSum.pdf
- National Alzheimer’s Project Act, S. 3036, 111th Cong. (2010). Retrieved from GovTrack.us website: http://www.govtrack.us/congress/bills/111/s3036
- National Family Caregivers Association. (n.d.). Who are America’s family caregivers? Retrieved from http://www.nfcacares.org/who_are_family_caregivers/
- Office of the Assistant Secretary for Planning and Evaluation. (2007). Does high caregiver stress lead to nursing home entry? Retrieved from http://aspe.hhs.gov/daltcp/reports/2007/NHentry.pdf
- The Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 124 Stat. 148 (2010).
- Sanford, J.T, Johnson, A.D & Townsend-Rocchiccioli, J. (2005). The health status of rural caregivers. Journal of Gerontological Nursing, 31(4), 25–31.
- Schacke, C. & Zank, S.R. (2006). Measuring the effectiveness of adult day care as a facility to support family caregivers of dementia patients. Journal of Applied Gerontology, 25, 65–81. doi:10.1177/0733464805284195 [CrossRef]
- Schultz, R. & Sherwood, PR.. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9 Suppl.), 23–27. doi:10.1097/01.NAJ.0000336406.45248.4c [CrossRef]
- State of New Jersey Department of Health and Senior Services. (2005). Daily tasks appraisal for caregivers. Retrieved from http://www.state.nj.us/caregivernj/basic/helptools/appraisal.shtml
- Tsai, P.-F. (2003). A middle-range theory of caregiver stress. Nursing Science Quarterly, 16, 137–145. doi:10.1177/0894318403251789 [CrossRef]
- White, M.A., Elder, J.H., Paavilainen, E., Joronen, K., Helgadóttir, H.L. & Seidl, A. (2010). Family dynamics in the United States, Finland and Iceland. Scandinavian Journal of Caring Sciences, 24, 84–93. doi:10.1111/j.1471-6712.2009.00689.x [CrossRef]
- The White House, Office of the Press Secretary. (2010). Presidential proclamation—National Family Caregivers Month. Retrieved from http://www.whitehouse.gov/the-press-office/2010/10/29/presidential-proclamation-national-family-caregivers-month
- Wiglesworth, A., Mosqueda, L., Mulnard, R., Liao, S., Gibbs, L. & Fitzgerald, W. (2010). Screening for abuse and neglect of people with dementia. Journal of the American Geriatrics Society, 58, 493–500. doi:10.1111/j.1532-5415.2010.02737.x [CrossRef]
- WomensHealth.gov. (2008). Caregiver stress fact sheet. Retrieved from http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.cfm
- Zarit, S. & Femia, E. (2008). Behavioral and psychosocial interventions for family caregivers. American Journal of Nursing, 108(9 Suppl.), 47–53. doi:10.1097/01.NAJ.0000336415.60495.34 [CrossRef]
Signs and Symptoms of Caregiver Stress
|Distress, despair, denial
||Irritability or frustration
||Loss of interest in activities
||Headache and muscle tension
|Lack of concentration
||Changes in sex drive
||Changes in appetite
||Increased accidents and personal injury
||Feelings or thoughts of death, dying, or suicide
||Unexplained physical symptoms
Components of a Comprehensive Caregiver Assessment
||Areas for Assessment
|Caregiver personal information
Housing situation (residence type) for caregiver/care recipient
Caregiver household status
Financial information for caregiver/care recipient
Duration of time caregiving
Caregiver employment status
Emergency contact information
Can you briefly describe your current caregiving situation?
What is your relationship to the care recipient?
How long have you been caregiving?
Does the care recipient live in the same household as you?
What is your current employment status?
|Caregiver perception of care recipient’s health and functional status
Capacity of care recipient to perform ADLs/IADLs, potential for improvement
Medical tests/procedures required and interpretation of results
Health and safety planning
Cognitive functioning (care recipient’s current level of alertness, orientation, comprehension, concentration, and memory).
Can the care recipient perform ADLs/IADLs without assistance?
Can the care recipient administer medications without assistance?
Does the care recipient have any mental health, behavioral, or emotional problems/impairments?
What medical tests and procedures have been done or are needed?
|Caregiver values and preferences
Caregiver/care recipient willingness to assume/accept care
Perceived cultural obligations
Caregiving issues and placement
Are you willing to assume the caregiver role, and is the care recipient willing to accept care from you?
Is there a perception of obligation to provide care?
What are the care recipient’s preferences for scheduling care and services?
Do you have the ability to prioritize/provide care?
|Caregiver health status
Health conditions and symptoms
Depression or emotional distress
Life satisfaction/quality of life
How do you rate your own health? Do you have any medical conditions?
Who provides you with emotional support?
How do you feel when you are caring for the care recipient? Are you in crisis?
How do you rate the quality of your life since assuming the caregiver role?
|Caregiver functional abilities/perceptions for the caregiving role
Psychological, behavioral, social, work, emotional and physical health, or financial responsibilities/stressors
Difficulties with care recipient and health care providers
Caregiver has necessary training/skills
Loss of control of own life
Satisfaction of helping care recipient
Acquisition of new skills and competencies
Improved relationship with care recipient/family
Do you feel support or isolation with the caregiver role?
Have there been any work-related/financial difficulties due to the caregiving role?
Have you developed any health problems as a result of caregiving?
Do you have enough time for yourself?
Do you feel comfortable making decisions?
Do you feel satisfaction/increased confidence?
What are your short- and long-term goals?
Have family relationships improved because of the caregiving situation?
What are some of your coping strategies?
Assisted living/skilled nursing facility/day care/long-term care options
Can you rely on a social/formal/informal support network/group?
What are some community resources/services?
Additional Resources on Caregiver Support
||Boss, P. (2011). Loving someone who has dementia: How to find hope while coping with stress and grief. San Francisco: Jossey-Bass.
Jacobs, B.J. (2006). The emotional survival guide for caregivers: Looking after yourself and your family while helping an aging parent. New York: The Guilford Press.
Kind, V. (2010). The caregiver’s path to compassionate decision making: Making choices for those who can’t. Austin, TX: Greenleaf.
Knutson, L.D. (2007). Compassionate caregiving: Practical help and spiritual encouragement. Bloomington, MN: Bethany House.
Meyer, M.M., & Derr, P. (2007). The comfort of home: A complete guide for caregivers. Portland, OR: CareTrust.
Sheehy, G. (2010). Passages in caregiving: Turning chaos into confidence. New York: HarperCollins.
||Administration on Aging (http://www.aoa.gov)
AssistGuide Information Services (http://www.agis.com)
Alzheimer’s Association (http://www.alz.org)
Eldercare Locator (http://www.eldercare.gov)
Family Caregiver Alliance (http://www.caregiver.org)
National Alliance for Caregiving (http://www.caregiving.org)
Today’s Caregiver (http://www.caregiver.com)
|Local community support resources
||Visiting Nurse Associations and homemaker services
Elder and outreach services
Meals on Wheels
Day care and transportation services
Respite care services
Legal and financial aid services
Counseling and psychological therapy services
Caregiver support groups
Barriers to Acceptance of Community Support Services and Resources
|Lack of information
|Care recipient resistance and caregiver reluctance
|Inability to afford services
|Concern over quality and continuity of services
|Difficulty obtaining services
|Stereotyping and bias from service providers
|Cultural bias and care access limits