The number of older adults in the United States older than 65 will double between 2005 and 2030, and those with Alzheimer’s disease (AD) will increase from 5.4 million today to 16 million by 2050 (Family Caregiver Alliance, 2011). As these individuals age, a majority will be cared for at home by unpaid family caregivers (Family Caregiver Alliance, 2011). Family caregivers are children (41.3%), spouses, (38.4%), and other family or friends (20.4%), and a majority “go it alone” without help from others (Winter, Bouldin, & Andresen 2010). Currently, the average age of those caring for individuals 65 and older is 63, and one third of these are in poor health (Family Caregiver Alliance, 2011). Compared with other caregivers, those who care for people with AD can expect to provide care 1 to 4 years longer and to provide more hours of care as they themselves age (Family Caregiver Alliance, 2011; Zucchella, Bartolo, Pasotti, Chiapella, & Sinforiani, 2012). These realities compound the demands and stress of caregiving that can lead to higher risk of physical and psychological illnesses, and many caregivers state they wish they had more support and assistance (Barbosa, Figueiredo, Sousa, & Demain, 2011).
As the number of homebound older adults who depend on others for their care rises, the ability to effectively support their caregivers to keep them at home and out of institutions has important implications for public health policy and service delivery (Qiu et al., 2010). The past decade has seen growing interest in respite—planned temporary periods of relief away from the concerns and demands of caregiving (Shaw et al., 2009). Whether it is offered in the home, a day care, or an institutional setting, respite offers caregivers time off to attend to their own physical, psychosocial, and recreational needs. Thus rejuvenated, caregivers ideally are better able to cope with the demands of caregiving and to continue successfully in the role.
Paradoxically, although they readily identify unmet needs for support and time off, caregivers are slow to request and use support services, and only 12% of family caregivers use a respite service. Many wait until very late in the caregiving trajectory to seek help, when they can no longer cope (Robinson, Buckwalter, & Reed, 2005). How caregivers who need support perceive services, and the factors that influence their decisions to use or not use them, remain poorly understood (Toseland, McCallion, Gerber, & Banks, 2002). Research findings on the utilization and outcomes of respite services are inconclusive and sometimes contradictory. Variability in study designs and methods and in respite interventions limit generalization of findings, and significant knowledge gaps remain. However, a review and analysis of the recent literature reveals growing attention to complex and interconnected variables related to caregiver use and non-use of services. The purpose of this review is to identify and understand factors that influence family caregivers’ decisions to use or not to use support services such as respite, and the implications for nursing practice.
The Demands and Rewards of Caregiving
Caregiving requires enormous time and energy. Estimates of care-giving hours per week range from 20 to full time (National Alliance for Caregiving & AARP, 2009). Many caregivers of frail older adults are elderly spouses or relatives who are in fair to poor health themselves. Informal family caregivers comprise a large and vulnerable base of chronic care delivery.
A large body of literature has eloquently described the numerous challenges, hazards, rewards, and psychological coping strategies of family caregivers supporting their frail loved ones. Caregiving can be rewarding when the caregiver feels needed and useful, has a close and reciprocal relationship with the care recipient, and enjoys an adequate network of support (Hilgeman, 2007; Salin & Astedt-Kurki, 2007). Conversely, caregivers often feel duty bound and become isolated and without secondary support as they attempt to balance the demands of caregiving with their other roles (Arksey & Glendinning, 2007; Pinquart & Sörensen, 2007).
Giving care to a relative with dementia is associated with stress-related symptoms such as fatigue, decreased energy, and sleep difficulties. Caregiving is also associated with worry, depression, and other negative emotions (Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007; Schoenmakers, Buntinx, & Delepeleire, 2010). Being a spouse or living with the care recipient, a higher degree of cognitive problems and disruptive behavior in the care recipient, providing care over a longer period of time, and having financial difficulty all intensify caregiver distress (Ekwall & Hallberg, 2007; Etters, Goodall, & Harrison, 2008; Pinquart & Sörensen, 2007; Sun, Kosberg, Kaufman, & Leeper, 2010). This distress and the physical demands of caregiving lead to a high risk of declining caregiver health (Kim, Chang, Rose, & Kim, 2012; Pinquart & Sörensen, 2007). Unfortunately, caregivers who indicate they are in poor health also use significantly fewer services than those who report better health (Toseland et al., 2002).
Caregivers frequently report a loss of personal time and time to relax and renew energy as they cope with the demands of caregiving (Navaie-Waliser, Spriggs, & Feldman, 2002). Most realize the importance of social support and of having time and space for themselves (Winter et al., 2010). As a result of the growing need to alleviate the stressful effects and isolation of caregiving, a wide range of formal respite programs has mushroomed nationwide.
Respite as a Resource for Caregivers
Numerous studies have identified respite as the most pressing concern and request from caregivers (Barbosa et al., 2011). Respite care services, whether in-home or institutional, aim to provide what caregivers say they need: time away to take a break from the relentless burdens and resulting stress of caregiving to rest and to focus on their own interests and needs (de la Cuesta-Benjumea, 2011).
Despite some inconclusive findings on the outcomes of respite programs, research generally has demonstrated that respite is beneficial for caregivers who choose to use it, especially in the early days of caregiving (Salin, Kaunonen, & Astedt-Kurki, 2009). Respite has been shown to lower caregiver burden and to improve caregivers’ morale and quality of life (Casado, Lee, & Davis, 2011; Shaw et al., 2009). Nonetheless, a majority of caregivers are reluctant and slow to actually use services, even when their need is high (Toseland et al., 2002; Zodikoff, 2002), and many delay using respite even when it is readily available and affordable or free (Barbosa et al., 2011; Brodaty, Thomson, Thompson, & Fine, 2005). Caregivers who seek respite often do so infrequently or very late in the course of caregiving when both care recipient health and caregiver coping abilities have declined (Stirling et al., 2010).
Research of Factors That Influence Caregivers’ Use of Services
Recent research has begun to explore the factors influencing how caregivers perceive, choose to use, and experience respite and other formal support services. Key findings from the literature can be grouped within four areas: (a) factors related to the service and its provision that encourage or discourage its use, (b) personal factors or characteristics of caregivers and their situations that influence their use of services, (c) experiential factors or ways caregivers cope and make decisions, and (d) relational factors or relationships among family members, friends, neighbors, church, and other areas of the community. These factors are summarized in the Figure.
Figure. Evidence-based factors that influence decisions to use or not use support services.
Factors that influence the use of a service include its availability, quality, accessibility in terms of location and schedule, its cost and affordability, how well it is coordinated and marketed, and whether families know about it (Arksey & Glendinning, 2007; Brodaty et al., 2005; Sussman & Regehr, 2009; Toseland et al., 2002). Most research citing enabling factors has been conducted with caregivers who have used or are using services. How service providers establish a relationship and trust with care recipients is an important factor (Arksey & Glendinning, 2007). Caregivers who use in-home services are more likely to continue them when service providers understand the care recipient’s likes, dislikes, and routines (Sussman & Regehr, 2009). For those who have chosen to use services, enabling factors are a more important predictor of ongoing use than level of need or other predisposing variables (Toseland et al., 2002).
A wide range of personal, or predisposing, factors influences the use of respite. Caregivers’ perception of the need for a service is a key predictor of service use (Brodaty et al., 2005; Kosloski, Schaefer, Allwardt, Montgomery, & Karner, 2002; Toseland et al., 2002). Chen and Thompson (2010), who examined personal factors related to use of community-based services in a national data set, concluded that perceived need is one of the most salient factors determining both health service utilization and health outcomes. Casado et al. (2011), who explored reasons care-givers were not using home and community-based services, noted that although the overall reason was a perception of “no need,” it is difficult to know whether this perception accurately reflects the actual need.
Stirling et al. (2010) reported that caregivers recognize the need for in-home respite (i.e., experienced “felt” need) when stressed but that this perception does not always lead to actual use. In this study, use of respite was higher when care recipient cognition and functional status were lower. Caregivers’ attitudes, beliefs, values, and how they perceive respite or other services in relation to their own role definition all appear to influence their perceptions of need. For example, regardless of actual burden, caregivers who believe they give the “best” care and who are reluctant to trust others are less likely to use respite.
Caregivers who are aware of their unmet needs for help are more likely to use services and to successfully keep their care recipients in the community (Chen & Thompson, 2010). In a grounded theory study, Furlong and Wuest (2008) found that caregivers who possessed “self-care worthiness” were aware of the importance of self-care, of which respite is a part, and thus more likely to accept outside help.
How caregivers cope and make decisions can provide some in-sights into their use or non-use of respite. Caregivers who use problem-focused coping that involves planning, taking action, and seeking out assistance have higher life satisfaction scores (Sun et al., 2010). Problem-focused coping strategies appear to mediate caregiving stress and burden more effectively than emotion-focused coping strategies (Barbosa et al., 2011; Papastavrou et al., 2007; Salin et al., 2009). Those who use avoidance coping strategies experience higher caregiving burden (Del-Pino-Casado, Frias-Osuna, Paomino-Moral, & Pancorbo-Hidalgo, 2011). On the other hand, caregivers who use “practical forms of coping” experience lower levels of burden (McConaghy & Caltabiano, 2005, p. 87). They are more likely to use services, to maintain outside interests, and to have more satisfaction with the caregiver role (Brannen & Petite, 2008; Ekwall & Hallberg, 2007).
To date, most research has studied individual caregivers, but researchers are beginning to recognize the importance of caregiving in the context of the family and community systems and their complex relationships and role expectations (Brown & Chen, 2008; Nichols et al., 2009). Relational factors can be divided into three categories: (a) the caregiver’s relationship with the care recipient, (b) broader family dynamics, and (c) community connections.
Caregiver-Care Recipient Relationship. Spouses and other caregivers who live in the same household with the care recipient are less likely to use external services (Toseland et al., 2002). This may be because the caregiving relationship is based on kinship ties that involve closeness, reciprocity, and obligation. Care-givers, especially female spouses, may experience guilt and concern for the care recipient’s preferences, fearing the care recipient will not like a service (Arksey & Glendinning, 2007). Similarly, Salin and Astedt-Kurki (2007), who studied care-giver emotional reactions to using respite services, reported that they frequently experienced a strong sense of obligation and guilt related to taking time for their own interests. Few studies have examined how accurately family caregivers perceive their relatives’ care preferences, and caregivers may misperceive their relatives’ choices for care (Whitlatch, 2008). Robinson et al. (2005) found that a strong positive relationship between the care-giver and the care recipient spouse with AD is significantly related to service use. In this study, families with spouse caregivers and families who delayed service use were significantly less likely to use services, regardless of the level of caregiving burden. In a concept analysis of the meaning of dependency in caregiving, Boggatz, Dijkstra, Lohrmann, and Dassen (2007) noted the importance of caregiver and care recipient agreement on domains of care.
In a grounded theory study of when, how, and why caregivers accept assistance with caregiving and what prevents them from doing so, Caron and Bowers (2003) found that caregivers often make decisions that anticipate consequences of their actions on their relationship with the care recipient (termed interrelational caregiving). When caregiving becomes too difficult for the caregivers to manage, they begin to consider sharing the care (termed pragmatic caregiving). In both these phases of care, the caregivers make decisions that anticipate the consequences of care strategies.
Broader Family Dynamics. Family norms and cultural values influence caregiver preferences for service use. In a review of the literature, Etters et al. (2008) noted that many who care for people with AD report increased family conflict, decreased social support, and limited social life. They also reported that families who do function well have less strain and burden. Casado et al. (2011), who examined reasons care-givers do or do not use home and community-based services, found that those reporting family agreement and using “substitute help” consistently report fewer unmet needs.
Community Connections. In a qualitative study of help-seeking patterns of spousal caregivers of older adults with dementia, Brown and Chen (2008) described the importance not only of family closeness, but also relationships with friends, neighbors, and church in encouraging help-seeking behaviors. Feld (2006) found that families caring for older adults with serious cognitive problems tend to be more isolated and to have less external support, whereas caregivers with expanded networks are better able to avoid the isolation that comes when care recipients have serious cognitive problems, and they have better caregiving outcomes.
Social stigma may contribute to isolation. Caregivers who perceive stigma or discrimination towards their elderly care recipient with AD are likely to conceal the situation from family, friends, and even health care providers (Werner, Goldstein, & Buchbinder, 2010). Stigma and cognitive impairment may discourage caregivers from seeking services.
Discussion and Implications for Nursing
Caregivers of frail older adults and their family systems are a growing and vulnerable population that will require increasing support and care coordination from nurses. They often face daunting challenges that may include balancing work and other family obligations along with caregiving, managing the emotional and physical burdens of caregiving, and finding time to relax and care for themselves (Navaie-Waliser et al., 2002). They may not be aware of their own needs for support and time off, and they may not accurately perceive their care recipient’s preferences for care. Informal caregivers are at significant risk for depression and other morbidity, especially when those for whom they care have AD, leading to cognitive and behavioral disruption (Etters et al., 2008; Schoenmakers et al., 2010). Furthermore, many lack adequate finances, resources, information, and/or emotional support they need to successfully manage the health care needs of their frail family members (Salfi, Ploeg, & Black, 2005).
Nurses who provide home health care, primary health care, respite care services, case management/care coordination, and hospital care and discharge planning are particularly well positioned to assist caregiving families to access supports and services that are tailored to their needs. Nurses must first understand the complex and interconnected factors that influence caregivers’ perceptions, use, and non-use of resources and use this knowledge to comprehensively assess needs and intervene. The four categories of factors listed in the Figure can be incorporated into an assessment inventory to help nurses analyze not only the strengths, difficulties, and challenges of each caregiving situation, but the personal, experiential, and relational factors for the caregiver, the family, and the broader social network. For example, gender, past and present role expectations, family culture and reciprocal relationships, and long-standing coping patterns all influence caregivers’ decisions regarding resource use and should be explored (Brown & Chen, 2008).
The Table provides both assessment questions and intervention strategies that nurses might use to assist caregiving families, such as the one in the following individual example. Mrs. D., a 74-year-old spouse caregiver is becoming isolated as her 75-year-old husband with early AD requires increasing attention, but she tells the nurse she is “not ready” to use in-home respite care. In assessing this situation, the nurse can sensitively explore personal factors, such as the meaning of the wife’s caregiving role; her levels of health, energy, and self-care worthiness; and whether her perceptions of unmet needs are congruent with the situation. The nurse can further explore experiential factors, including the care recipient’s needs and preferences for care and whether his perceptions match that of Mrs. D. Finally, the nurse can assess relational factors, such as how the couple relates; their openness in communicating about the AD diagnosis; and the support they receive from family, friends, and other community connections.
Table: Nursing Assessment and Intervention Strategies Based On Evidence-Based Factors
Analyzing this information will allow the nurse to tailor information and provide a clear rationale for the support, recommendations, and services offered to the family. It will further allow the nurse to raise both Mrs. D.’s and her husband’s awareness of common issues of caregiving and of their own needs and possible solutions. Through understanding relational factors, the nurse can help this couple recognize their responses to issues such as family conflict or social stigma associated with AD. The nurse can facilitate Mrs. D.’s exploration of her husband’s preferences for care and assist her to understand and come to terms with the need to balance interrelational and pragmatic caregiving decisions in the future as Mr. D.’s health declines.
The nurse can model and assist clients like Mrs. D. to use practical, problem-focused planning, leading to supports that enable her to successfully care for her husband at home, while avoiding greater isolation as her caregiving burdens continue. The nurse can help legitimize options when caregivers need to make difficult or uncomfortable decisions.
Nurses who work with caregiving families need to be aware that caregivers often delay services and decide to use them only when they can no longer physically or emotionally cope (Ashworth & Baker, 2000). When this is the case, using a service such as respite care may represent a failure of the caregiver’s abilities and may be an inadequate solution to a more extensive need for help. It is important for nurses to anticipate and proactively assess the needs of caregiving families much earlier in the caregiving trajectory, before burdens escalate and caregiver coping abilities decline.
Even when caregivers and the care recipient agree they need services, they face a maze of complex, fragmented, and often poorly coordinated health and human services. Nurses can play a key role in assisting caregiving families by making referrals based on careful assessment of need and assuring coordination and continuity of services. They should provide accurate and complete information to clients regarding the range, availability, accessibility, and cost of services such as respite care that are available to the family. Caregiving families will benefit most from service providers who seek to understand the care recipient’s needs and preferences, and who build trust by delivering high-quality services.
Nurses can also help the caregiver to evaluate and leverage sources of informal support that may be available to her within her family, church, or other members of her community. Through these interventions, the categories of factors in the Figure can be used to guide case management practice and care transitions programs, which emphasize the importance of extending education and coordinated support into the home following discharge from a hospital or rehabilitation unit (Watkins, Hall, & Kring, 2012).
Nurses can best support care-giving families by broadening their view of “client” to incorporate the family and the full context of care-giving. Family caregivers are often the primary interface with the health care system as advocates and decision makers for their disabled care recipients, and they often receive inadequate support from health professionals (Maiden, Horowitz, & Howe, 2010; Navaie-Waliser et al., 2002). By considering the needs and preferences of both the care recipient and the family caregiver(s) in planning and negotiating care, nurses can effectively incorporate family care-givers as members of the health care team (Arksey & Glendinning, 2007).
Frail older adults and their care-giving families comprise an increasingly large segment of health care system users. Informal caregivers often require supports and services such as respite to continue to be successful in their role as the demands of caregiving escalate. Barriers to the use of a support service can occur at several levels: characteristics of the service itself, care-giver personal characteristics, experiential coping and decision-making patterns, and relational factors. By addressing the multiple interrelated factors that influence families’ decisions to use or not to use services, nurses can more effectively assess needs and help caregivers accept the support they need to be effective in their essential role.
- Arksey, H. & Glendinning, C. (2007). Choice in the context of informal care-giving. Health & Social Care in the Community, 15, 165–175.
- Ashworth, M. & Baker, A.H. (2000). ‘Time and space’: Carers’ views about respite care. Health & Social Care in the Community, 8, 50–56. doi:10.1046/j.1365-2524.2000.00221.x [CrossRef]
- Barbosa, A., Figueiredo, D., Sousa, L. & Demain, S. (2011). Coping with the caregiving role: Differences between primary and secondary caregivers of dependent elderly people. Aging & Mental Health, 15, 490–499. doi:10.1080/13607863.2010.543660 [CrossRef]
- Boggatz, T., Dijkstra, A., Lohrmann, C. & Dassen, T. (2007). The meaning of care dependency as shared by care givers and care recipients: A concept analysis. Journal of Advanced Nursing, 60, 561–569. doi:10.1111/j.1365-2648.2007.04456.x [CrossRef]
- Brannen, C. & Petite, K. (2008). An alternative framework for understanding women’s caregiving stress: A qualitative application of the ways of coping model. Journal of Health Psychology, 13, 355–365. doi:10.1177/1359105307088140 [CrossRef]
- Brodaty, H., Thomson, C., Thompson, C. & Fine, M. (2005). Why caregivers of people with dementia and memory loss don’t use services. International Journal of Geriatric Psychiatry, 20, 537–546. doi:10.1002/gps.1322 [CrossRef]
- Brown, J. & Chen, S. (2008). Help-seeking patterns of older spousal caregivers of older adults with dementia. Issues in Mental Health Nursing, 29, 839–852. doi:10.1080/01612840802182854 [CrossRef]
- Caron, C.D. & Bowers, B.J. (2003). Deciding whether to continue, share, or relinquish caregiving: Caregiver views. Qualitative Health Research, 13, 1252–1271. doi:10.1177/1049732303257236 [CrossRef]
- Casado, B., Lee, S. & Davis, S.L. (2011). Unmet needs for home and community-based services among frail older Americans and their caregivers. Journal of Aging & Health, 23, 529–553. doi:10.1177/0898264310387132 [CrossRef]
- Chen, Y.M. & Thompson, E.A. (2010). Understanding factors that influence success of home- and community-based services in keeping older adults in community settings. Journal of Aging and Health, 22, 267–291. doi:10.1177/0898264309356593 [CrossRef]
- de la Cuesta-Benjumea, C. (2011). Strategies for the relief of burden in advanced dementia care-giving. Journal of Advanced Nursing, 67, 1790–1799. doi:10.1111/j.1365-2648.2010.05607.x [CrossRef]
- Del-Pino-Casado, R., Frias-Osuna, A., Palomino-Moral, P.A. & Pancorbo-Hidalgo, P.L. (2011). Coping and subjective burden in caregivers of older relatives: A quantitative systematic review. Journal of Advanced Nursing, 67, 2311–2322. doi:10.1111/j.1365-2648.2011.05725.x [CrossRef]
- Ekwall, A.K. & Hallberg, I.R. (2007). The association between caregiving satisfaction, difficulties and coping among older family caregivers. Journal of Clinical Nursing, 16, 832–844. doi:10.1111/j.1365-2702.2006.01382.x [CrossRef]
- Etters, L., Goodall, D. & Harrison, B.E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. doi:10.1111/j.1745-7599.2008.00342.x [CrossRef]
- Family Caregiver Alliance. (2011). Fact sheet: Selected caregiver statistics. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439
- Feld, S. (2006). Expansion of elderly couples’ IADL caregiver networks beyond the marital dyad. International Journal of Aging & Human Development, 63, 95–113. doi:10.2190/CW8G-PB6B-NCGH-HT1M [CrossRef]
- Furlong, K.E. & Wuest, J. (2008). Self-care behaviors of spouses caring for significant others with Alzheimer’s disease: The emergence of self-care worthiness as a salient condition. Qualitative Health Research. 18, 1662–1672. doi:10.1177/1049732308327158 [CrossRef]
- Hilgeman, M.M. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22, 361–371. doi:10.1037/0882-79126.96.36.1991 [CrossRef]
- Kim, H., Chang, M., Rose, K. & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68, 846–855. doi:10.1111/j.1365-2648.2011.05787.x [CrossRef]
- Kosloski, K., Schaefer, J.P., Allwardt, D., Montgomery, R.J.V. & Karner, T.X. (2002). The role of cultural factors on clients’ attitudes toward caregiving, perceptions of service delivery, and service utilization. Home Health Care Services Quarterly, 22(3/4), 65–88. doi:10.1300/J027v21n03_04 [CrossRef]
- Maiden, R.J., Horowitz, B.P. & Howe, J.L. (2010). Workforce training and education gaps in gerontology and geriatrics: What we found in New York State. Gerontology & Geriatrics Education, 31, 328–348. doi:10.1080/02701960.2010.532749 [CrossRef]
- McConaghy, R. & Caltabiano, M.L. (2005). Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping, and well-being. Nursing and Health Sciences, 7, 81–91. doi:10.1111/j.1442-2018.2005.00213.x [CrossRef]
- National Alliance for Caregiving, & AARP. (2009). Caregiving in the U.S.: A focused look at those caring for someone age 50 or older. Retrieved from http://www.care-giving.org/data/FINALRegularExSum50plus.pdf
- Navaie-Waliser, M., Spriggs, A. & Feldman, P.H. (2002). Informal caregiving: Differential experiences by gender. Medical Care, 40, 1249–1259. doi:10.1097/00005650-200212000-00012 [CrossRef]
- Nichols, L.O., Martindale-Adams, J., Greene, W.A., Burns, R., Graney, M.J. & Lummus, A. (2009). Dementia caregivers’ most pressing concerns. Clinical Gerontologist, 32(1), 1–14. doi:10.1080/07317110802468546 [CrossRef]
- Papastavrou, E., Kalokerinou, A., Papacostas, S.S., Tsangari, H. & Sourtzi, P. (2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing, 58, 446–457. doi:10.1111/j.1365-2648.2007.04250.x [CrossRef]
- Pinquart, M. & Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 62, P126–P137. doi:10.1093/geronb/62.2.P126 [CrossRef]
- Qiu, W.Q., Dean, M., Liu, T., George, L., Gann, M., Cohen, J. & Bruce, M.L. (2010). Physical and mental health of homebound older adults: An overlooked population. Journal of the American Geriatrics Society, 58, 2423–2428. doi:10.1111/j.1532-5415.2010.03161.x [CrossRef]
- Robinson, K.M., Buckwalter, K.C. & Reed, D. (2005). Predictors of use of services among dementia caregivers. Western Journal of Nursing Research, 27, 126–140. doi:10.1177/0193945904272453 [CrossRef]
- Salfi, J., Ploeg, J. & Black, M.E. (2005). Seeking to understand telephone support for dementia caregivers. Western Journal of Nursing Research, 27, 701–721. doi:10.1177/0193945905276882 [CrossRef]
- Salin, S. & Astedt-Kurki, P. (2007). Women’s views of caring for family members: Use of respite care. Journal of Gerontological Nursing, 33(9), 37–45.
- Salin, S., Kaunonen, M. & Astedt-Kurki, P. (2009). Informal carers of older family members: How they manage and what support they receive from respite care. Journal of Clinical Nursing, 18, 492–501. doi:10.1111/j.1365-2702.2008.02550.x [CrossRef]
- Schoenmakers, B., Buntinx, F. & Delepeleire, J. (2010). Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review. Maturitas, 66, 191–200. doi:10.1016/j.maturitas.2010.02.009 [CrossRef]
- Shaw, C., McNamara, R., Abrams, K., Cannings-John, R., Hood, K., Longo, M. & Williams, K. (2009). Systematic review of respite care in the frail elderly. Health Technology Assessment, 13(20), 1–246. doi:
- Stirling, C., Andrews, S., Croft, T., Vickers, J., Turner, P. & Robinson, A. (2010). Measuring dementia carers’ unmet need for services—An exploratory mixed method study. BMC Health Services Research, 10. Retrieved from http://www.biomedcentral.com/1472-6963/10/122. doi:10.1186/1472-6963-10-122 [CrossRef]
- Sun, F., Kosberg, J.I., Kaufman, A.V. & Leeper, J.D. (2010). Coping strategies and caregiving outcomes among rural dementia caregivers. Journal of Gerontological Social Work, 53, 547–567. doi:10.1080/01634372.2010.496823 [CrossRef]
- Sussman, T. & Regehr, C. (2009). The influence of community-based services on the burden of spouses caring for their partners with dementia. Health & Social Work, 34(1), 29–39. doi:10.1093/hsw/34.1.29 [CrossRef]
- Toseland, R.W., McCallion, P., Gerber, T. & Banks, S. (2002). Predictors of health and human services use by persons with dementia and their family caregivers. Social Science & Medicine, 55, 1255–1266. doi:10.1016/S0277-9536(01)00240-4 [CrossRef]
- Watkins, L., Hall, C. & Kring, D. (2012). Hospital to home: A transition program for frail older adults. Professional Case Management, 17, 117–123. doi:
- Werner, P., Goldstein, D. & Buchbinder, E. (2010). Subjective experience of family stigma as reported by children of Alzheimer’s disease patients. Qualitative Health Research, 20, 159–169. doi:10.1177/1049732309358330 [CrossRef]
- Whitlatch, C. (2008). Informal caregivers: Communication and decision making. American Journal of Nursing, 108(9), 73–77. doi:10.1097/01.NAJ.0000336426.65440.87 [CrossRef]
- Winter, K.H., Bouldin, E.D. & Andresen, E.M. (2010). Lack of choice in caregiving decision and caregiver risk of stress, North Carolina, 2005. Preventing Chronic Disease, 7(2), A41.
- Zodikoff, B.D. (2002). Understanding older spousal dyads’ attitudes toward community service use: An analysis of applied theoretical models. Journal of Gerontological Social Work, 39(3), 3–21. doi:10.1300/J083v39n03_02 [CrossRef]
- Zucchella, C., Bartolo, M., Pasotti, C., Chiapella, L. & Sinforiani, E. (2012). Caregiver burden and coping in early-stage Alzheimer disease. Alzheimer Disease and Associated Disorders, 26, 55–60. doi:10.1097/WAD.0b013e31821aa6de [CrossRef]
Nursing Assessment and Intervention Strategies Based On Evidence-Based Factorsa
Explore accessibility and availability of high-quality services
Evaluate caregiver level of knowledge and experience related to services
Provide accurate and complete information about services
Base client education, care provision, and referral for services on shared knowledge of the needs and preferences of both caregiver and care recipient
Mutually determine with the family services that are affordable, acceptable, and logistically feasible
Build trust in the professional relationship
Provide coordination and continuity of care across levels of health care and over time
Explore unmet needs perceived by the caregiver(s) and the care recipient and whether these perceptions are congruent
Identify expectations, attitudes, beliefs, and values held by the primary caregiver about his or her role and how these are influenced by factors such as gender
Determine the caregiver’s levels of physical and emotional health and energy
Assess the caregiver’s level of awareness of self-care worthiness
Assist the family caregiver(s) and care recipient to discuss, acknowledge, and reach agreement regarding unmet needs for support and services
Emphasize importance of both the caregiving role and caregiver self-care activities, legitimizing self-care worthiness
Identify the burdens of the caregiving situation, including cognitive and behavioral challenges
Examine the caregiver’s and family’s past experiences with supports and services, help-seeking behaviors, and sources of resistance to accepting services
Evaluate the effectiveness of strategies the caregiver and other family members use to cope with the demands of caregiving
Assess the caregiving family’s ability to use practical, problem-focused coping abilities
Explore with the caregiving family which supports and services best address the burdens and unmet needs and the family’s preferences
Help the caregiver and family identify effective and ineffective coping strategies
Encourage and support the family in strengthening and/or developing practical, problem-focused coping patterns based on their constructive assessment of the situation
Identify family norms, cultural values, and sources of family conflict that influence care
Identify both barriers to and sources of external support from extended family and community
Assess congruence of caregiver’s and care recipient’s perceptions of caregiving and service preferences
Evaluate caregiver’s ability to differentiate interrela tional and pragmatic caregiving
Raise awareness of relational barriers within the family and the community that lead to isolation and deter successful caregiving
Help family determine strategies to build family strengths and leverage caregiving supports and resources within the community
Emphasize the importance of assuring adequate support early in the caregiving trajectory