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Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)
Geriatric Nursing xx (2016) 1e6
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Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC) Heehyul Moon, MSW, PhD a, *, Sunshine Rote, PhD a, Jeff A. Beaty, LMSW, MSHA, DHEd b a b
Raymond A. Kent School of Social Work, University of Louisville, KY, 40292, USA Serenity HealthCARE, 12201 Bluegrass Parkway, Louisville, KY 40299, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 7 April 2016 Received in revised form 11 July 2016 Accepted 18 July 2016 Available online xxx
The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N ¼ 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CG groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups. Ó 2016 Elsevier Inc. All rights reserved.
Keywords: Baby boomer Caregiving Non-nursing home residential care settings Quality of life Care stress
Introduction Over 46 million people in the United States are 65 years or older, and a major driver of the rapidly aging population is the Baby Boomer generation (born between 1946 and 1964).1,2 By 2040, when all Baby Boomers are over the age of 65, the older population will constitute over 20% of the general U.S. population.3 Currently, many boomers are entering the role of caregiver to an older person, usually parent, with limited mobility. Many of the boomers’ care recipients are 85 years and older and while the majority of elders receiving care assistance live in the community, 13% reside in institutional settings.4 The future trends in extended longevity and increasing rates of dementia and chronic conditions will result in more provision of care for older adults, and beg an array of questions of the role of caregiving setting for Baby Boomer CG stress processes. The expectation that CGs will not experience distress or burden after an older family member is placed in a long-term care facility is a myth.5 Studies suggest that family CGs to older adults in
Abbreviations: CG, caregiver; CR, care recipient; NSOC, National Study of Caregiving; NHATS, National Health & Aging Trends Study. Conflicts of interest: None declared. * Corresponding author. Raymond A. Kent School of Social Work, University of Louisville, KY, 40292, USA. Fax: þ1 502 852 0422. E-mail address: [email protected] (H. Moon). 0197-4572/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2016.07.006
residential care settings, despite obtaining relief from direct-care tasks (e.g., activities of daily living, instrumental activities of daily living), report continuing distress post-institutionalization, including depression, sadness, loss, guilt, and, potentially, family conflict.6,7,8 This risk for distress likely results from the continued involvement (both physical and emotional) of family CGs after placement, albeit in new and different ways: visiting, interacting with staff and relatives, providing instrumental assistance such as transportation, and making decisions about finances and health care.6,9 Of the available studies on CGs to people in residential care, most have focused on nursing homes (NHs) and changes in the role of the family CG following institutionalization.10 Of the few studies on the topic, research shows that dementia CGs providing care in the community report greater work-related strain than dementia CGs providing care in assisted living facilities, and that CGs to patients in assisted living facilities report higher burden than dementia CGs to patients in NHs.11,12 In addition, one study suggests that CGs may continue to feel guilt at least 10 months after their elderly family member has been admitted to a NH or residential care home,13 indicating a risk for depression and other negative health outcomes. Less attention has been paid to the predictors of burden and well-being of family CGs to people living in non-NH residential care settings including assisted living facilities, care homes, and continuing care retirement homes.14 Non-NH residential care settings tend to house residents with less disability and have less intensive supervision allowing CGs to older adults
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living in these facilities more frequent visits and involvement with instrumental care tasks.9 While the majority of institutional care is provided in nursing home settings, in recent years there has been an increase in the use of non-NH care settings,14 especially as the Baby Boom generation meets the needs of work and family life. In particular, Baby Boomer CGs often with families of their own, experience multiple care demands. For instance, unlike previous generations, boomers can expect to spend approximately 40 years simultaneously working and providing personal care and financial assistance for their children, aging parents, older siblings, spouses and/or their spouses’ children, and themselves.15,16 Institutional care providers still face the challenges of understanding family CGs’ needs and experiences, and may find it difficult to devise appropriate interventions for these CGs.10 A better understanding of boomer CGs’ emotional well-being and physical health will be beneficial not only to care providers but also to family CGs themselves, to increase awareness both of their health and the areas to improve their well-being. The conceptual model for the current study is the caregiver stress and coping model (SPM).2,17 Predictors of caregiver wellbeing include primary stressors which include both (a) objective indicators or the CR’s cognitive and physical health status, and (b) subjective indicators or CG overload. Stressors within the caregiving domain influence secondary role strains on family cohesion and finances, and intrapsychic strains, including self-esteem and loss of self. A key component of this framework is the role of background and resources, which are influential at every stage of the caregiving stress process. We do not have all of the proposed factors from the CG stress process model in our data set. However, we do have variables for key primary stressors and objective indicators of CR health (i.e., AD or other dementia) as well as indicators for disability, such as needing help with daily activities and whether there was a regular schedule for care provision. We also included indicators for secondary strains, such as financial difficulties and relationship quality, resources (including informal support) and the emotional well-being and self-rated general health of CGs.2,17 We posed two research questions (RQs) and construct hypotheses (Hs) to address the questions. First (RQ1), are there differences in primary stressor, secondary stressors, resources and outcomes between CGs of older adults in non-NH residential care settings and those of Baby Boomer CGs for older adults in community? Based on previous research, we hypothesized that despite continued caregiving among CGs of older adults in non-NH care settings, they would report a lower level of providing help with daily activities, better relationship quality, and higher levels of physical and emotional well-being than the CGs of older adults living in the community (H1). Second (RQ2), we ask are there differences in factors associated with the CG’s emotional well-being and self-perceived health status, based on CG setting (non-NH residential care or community)? We hypothesized that the effects of primary stressors and secondary stressors would vary with the residential status of the CGs’ older adults (non-NH residential care settings, community, H2). Methods Data source This study was based on a secondary data of the NSOC, which is a sample of 2007 informal CGs identified by Medicare beneficiaries aged 65 and older who participated in the 2011 National Health and Aging Trends Study (NHATS), a nationally representative study that collects data from older adults on an annual basis. The NSOC collects information on how the CG helps the older respondent in the NHATS with everyday activities along with information on the CG’s
own health, family, and income.16 None NHATS respondents in NSOC lived in nursing homes (among 2007 NHATS respondents in NSOC, they lived either the community (n ¼ 1786) or non-NH residential care settings (i.e. assisted living, care homes, and continuing care retirement homes, n ¼ 221)). We excluded those CGs who were not born between 1946 and 1964 (n ¼ 994). The NSOC includes all eligible CGs17 for whom the NHATS respondents provided contact information. To identify the primary CG for a given CR, we counted the number of CGs interviewed per older adult. If an older adult had one CG, we used his/her information. For older adults with multiple CGs, we identified the primary CG as the one who performed the most caregiving duties (based on hours per day) and used his/her information (n ¼ 180), eliminating the secondary CGs (n ¼ 231). Thus, our analyses included only those CGs (N ¼ 782) who provided the most care to an older adult living in community or in a non-NH residential care setting. Measures The NSOC questions for our stressors, resources, and outcomes are presented in the Appendix. Primary stressors included the CR’s dementia status, level of care provided by CG, and whether care was provided on a regular schedule. We defined the CR’s dementia status using either report by NHATS participants or by proxy (if a doctor told the CR that he/ she had dementia or AD). We created a level of care activities variable based on the sum of the responses to the five NSOC questions related to helping with: 1) chores, 2) shopping, 3) personal care, 4) getting around home and 5) transportation. Response categories ranged from 1 ¼ rarely to 4 ¼ every day. Higher scores indicated higher level of involvement in helping with daily activities. We also created a variable for whether care was provided on a regular schedule or not (0 ¼ varied, 1 ¼ regular schedule). Secondary stressors included perceived financial difficulty and relationship quality between CG and the CR. Respondents were asked if providing care for the CR was financially difficult (1 ¼ yes, 0 ¼ no). We defined the quality of the CG’s relationship with the older adult as the sum of four questions (how much CGs enjoys being with the CR, how much CR appreciates CG, how much CR argues with CG, and how much CR gets on CG nerves, as shown in the Appendix), and last two questions were reverse coded (each with a 4-level response ranging from “not at all” (1) to “a lot” (4)). Higher scores indicated a better relationship quality. Resources We defined informal support as the sum of three questions about the existence of supportive friends and family and ability to call on support networks (response options include 1 ¼ yes, 0 ¼ no). CG background and health The background characteristics included CGs’ age, gender (0 ¼ male, 1 ¼ female), and education (0 ¼ high school or less, 1 ¼ some college or more). The NSOC participants were asked about whether they had any of ten chronic conditions. We retained the items for high blood pressure, arthritis, lung disease and serious difficulty seeing but did not keep the other six items in the regression models due to weak associations with the outcomes. We defined pain through a single NSOC item (whether the participant was bothered by pain) (0 ¼ no, 1 ¼ yes). Outcomes We estimated the CG’s emotional well-being as the sum of 7 questions (each with a 4-level response ranging from 1 ¼ “not at all” to 4 ¼ “nearly every day”). Higher scores indicated a better self-
H. Moon et al. / Geriatric Nursing xx (2016) 1e6
perceived emotional well-being. We categorized the CG’s overall selfrated general health into five levels, from poor (1) to excellent (5).
Table 1 Sample characteristics. Characteristic
Total (n ¼ 782)
Boomer CGs of older adults in community (n ¼ 679) %
%
CG age (in years) (mean (SD)) CR age CG gender (female) CR gender CG proxy race/ethnicity Non-Hispanic White Non-Hispanic Black Hispanic Relationship to CR Spouse Daughter Son Child-in-law Friends CG education High school diploma/GED/or less than high school More than high school (some college or associate degree, Bachelor’s degree or higher) CG income, median ($) CG’s chronic illness Heart attack Heart disease High blood pressure Arthritis Osteoporosis Diabetes Lung disease Cancer Serious difficulty seeing Serious difficulty hearing CG’s pain
55.95 (5.36)
55.89 (5.52)
57.15 (5.74)
ns
82.55 (7.97) 72 (563) 71.6 (401)
81.98 (7.97) 72.2 (497) 71.9 (342)
85.77 (7.11) 64.1 (66) 70.2 (59)
<.001 ns ns <.001
57.5 (322) 32.7 (183) 5.1 (40)
52.7 (251) 36.3 (173) 8.2 (39)
84.5 (71) 11.9 (10) 1.2 (1)
7.5 (59) 50.6 (396) 21.6 (169) 4.6 (36) 2.9 (23)
8.1 (55) 51.7 (351) 20.6 (140) 4.4 (30) 2.2 (15)
3.9 (4) 43.7 (45) 28.2 (29) 5.8 (6) 7.9 (8)
ns
38.6 (302)
41.1 (279)
22.3 (23)
<.001
61.4 (480)
58.9 (400)
77.2 (80)
40,000
40,000
70,000
<.001
3.4 (26) 6.3 (49) 43.1 (355) 38.9 (302) 12.7 (98) 16.7 (130) 13.8 (107) 7.7 (60) 6.1 (47)
3.1 (21) 5.9 (40) 43.2 (291) 39 (263) 13.3 (89) 17.8 (121) 13.8 (93) 8.5 (57) 6.8 (46)
4.9 (5) 8.7 (9) 37.9 (39) 36.3 (45) 8.8 (9) 8.7 (9) 13.6 (14) 2.9 (3) 1.0 (1)
ns ns ns ns ns <.05 ns <.05 <.05
4.5 (35)
4.6 (31)
4 (5)
ns
54.9 (427)
55 (371)
54.4 (56)
ns
Analytic strategy We tested for multicollinearity among the potential predictors entered in the models using two collinearity statistics: the tolerance value and the variance inflation factor (VIF). We defined a serious collinearity problem as either a tolerance value less than .1 or a VIF greater than 10.18 We found no evidence of multicollinearity.19 The range of the VIF and tolerance were 1.432e1.057 and .695e.946, respectively. We used two-tailed independent ttests and chi-square tests to assess the differences in characteristics between Baby Boomer CGs of older adults in community and in non-NH residential care settings. Lastly, since the data met the assumption of independent errors (DurbineWatson value ¼ 1.90), we used four ordinary least squares multiple regression analyses with simultaneous entry of predictors to investigate factors associated with the outcomes of interest. Results Sample description Table 1 presents descriptive information on the demographic characteristics of Baby Boomer CGs of older adults in community and in non-NH residential care settings. The average age of Baby Boomer CGs of older adults in community and in non-NH residential care settings was 55.79 years (range 34e66) and 57 years (range 41e65), respectively. More than three-fourths of both CG groups were children of the CR and the majority of these were daughters providing care for mothers. More than half of the two groups had some college or associate degree or higher. The two groups did not significantly vary in terms of CG age, CG gender, CG relationship to CR, or certain CR chronic illnesses (e.g., heart attack, heart disease, osteoporosis, cancer, and serious difficulty hearing) or CG pain. However, there were statistically significant differences in CG race/ethnicity (X2(4, N ¼ 560) ¼ 30.668, p < .001), education (X2(1, N ¼ 782) ¼ 13.278, p < .001), CG income (t(497) ¼ 4.66, p < .001), and prevalence of diabetes (X2(1, N ¼ 777) ¼ 5.445, p < .025), cancer (X2(1, N ¼ 775) ¼ 3.879, p < .05), and serious difficulty seeing (X2(1, N ¼ 776) ¼ 5.399, p < .05). As hypothesized (H1), compared with the Baby Boomer CGs of older adults in community, Baby Boomer CGs of older adults in nonNH residential care settings reported: a lower level of providing help with daily activities including transportation (t(774) ¼ 8.85, p < .001); a better relationship quality with the CRs (t(766) ¼ 2.03, p < .001); a better physical health (t(558) ¼ 4.054, p < .001); and a better emotional well-being (t(762) ¼ 2.055, p < .05). Moreover, Baby Boomer CGs of older adults in non-NH residential care settings reported a higher level of informal support (t(733) ¼ 2.035, p < .05). There were also significant differences in providing care on a regular basis (X2(1, N ¼ 777) ¼ 13.4, p < .001) and financial difficulties (X2(1, N ¼ 779) ¼ 12.589, p < .001). Regression analysis The four models shown in Table 2 explained between 15.2% and 43.3% of the variance in CG health and well-being. As hypothesized (H2), there were both similarities and differences in factors that influenced emotional well-being and perceived general health between the two CG groups. The results of the regression analysis appear in Table 2; significant items are mentioned below.
3
Boomer CGs of older adults in Non-NH residential care settings (n ¼ 103)
p value
CG ¼ caregiver; CR ¼ care recipient; Valid percentages are presented; NS indicates no significant differences between two groups.
Similarities between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community A better relationship with the CR was positively associated with emotional well-being in both groups. CG education was positively associated with CG self-perceived health for both groups of CGs. Financial difficulties due to caregiving are associated with significantly worse CG self-perceived health for both groups. Chronic conditions, such as experiencing arthritis and lung disease, were significantly related to lower level of emotional well-being and having high blood pressure and arthritis were significantly related to worse self-perceived physical health in both GG groups. Differences between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community: emotional well-being For caregiving context, gender was only significant for wellbeing among CGs to older adults in non-NH residential care
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Table 2 Multiple regressions of predictors of emotional well-being and self-perceived general health of baby boomer CGs to older adults in RC/AL and in the community. Variable
CGs to older adults in non-NH residential care b
SEb
CGs to older adults in community
B
b
SEb
b
Outcome: emotional well-being CG context Gender (1 ¼ female) Education (1 ¼ some college or more) High blood pressure Arthritis Lung disease Pain Problems with sight Primary stressors Alzheimer’s disease or other dementia Help with daily activities Regular schedule Secondary stressors Financial difficulties Relationship quality Resource Informal support R2 F CG context Gender (1 ¼ female) Education (1 ¼ some college or more) High blood pressure Arthritis Lung disease Pain Problems with sight Primary stressors Alzheimer’s disease or other dementia Help with daily activities Regular schedule Secondary stressors Financial difficulties Relationship quality Resource Informal support R2 F
1.782 .254 2.004 1.715 .284 1.511 1.744
.682 .761 .690 .806 .978 .767 3.185
.280* .034 .066 .321* .189* .046 .051
.010 .920 .605 .833 .432 1.058 .785
.2895 .264 .261 .281 .368 .274 .516
.001 .132*** .088* .120** .044*** .156*** .057
.668 .101 .459
.951 .114 .982
.079 .095 .069
.341 .043 .386
.370 .041 .281
.036 .046 .057
.662 .360
.982 .179
.070 .218*
1.453 .237
.303 .059
.190*** .157***
.461 .273 (13,78) 2.255* Outcome: self-rated general health
.029
.567
.163
.132*** .189 11.913***
.163 .509 .547 .782 .022 .425 .656
.203 .227 .205 .240 .291 .228 .948
.070 .185* .244** .344** .077 .191 .061
.095 .276 .399 .478 .369 .486 .227
.088 .080 .079 .085 .112 .083 .156
.038 .122*** .177*** .210*** .115*** .218*** .050
.332 .021 .259
.283 .034 .2225
.107** .055 .107
.085 .010 .092
.112 .013 .085
.027 .032 .042
.988 .022
.292 .053
.289*** .037
.228 .063
.092 .018
.091* .128***
.200
.137 .514 6.346***
.120
.024
.050
.017 .305 20.43***
.135
(13,78)
(13,594)
(13,604)
CG ¼ caregiver; RC/AL ¼ Residential care/Assisted living; *p .05. **p .01. ***p .001.
settings, with women reporting a higher level of perceived emotional well-being compared with their male counterparts. Surprisingly, primary stressors were unrelated to CG well-being, regardless of caregiving setting. Results also show that CG health, secondary stressors, and resources are more consequential for the mental health of CGs to older adults residing in the community. Differences between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community: self-rated health One primary stressor was associated with self-rated health. In particular, boomer CGs of older adults in non-NH residential care settings reported significantly worse health when their CRs had AD or other dementia. Dementia status was unrelated, surprisingly, to self-rated health for CGs to older adults residing in the community. Similar to the results for emotional well-being, more CG health factors and secondary stressors are related to self-rated health for Boomer CGs to older adults in the community vs. non-NH residential care. Discussion While extensive research has focused on the experience of CGs of older adults residing in the community, fewer studies have paid
attention to CGs of older adults in institutions, especially in non-NH residential care facilities such as assisted living, board and care home, non-NH home parts of a continuing care retirement community. In light of this, our purpose was to provide a comprehensive understanding of the demographics, the prevalence of chronic illness, perceived mood, feelings, and other caregiving experience of Baby Boomer CGs of older adults in non-NH care settings. Our results contribute to the body of caregiving research in several ways. We address the gap in literature on Baby Boomer CGs, present results using national data, and highlight important differences in the caregiving experience between Baby Boomer CGs of older adults in non-NH residential care settings and in the community. Our findings show the importance of CG background factors, especially gender, income, and educational attainment. Boomer CGs to older adults residing in the community (vs. non-NH residential care) tend to report lower household incomes and educational levels; however, educational attainment was associated with health and well-being for both groups. Financial resources and strain are also related to the health status of Baby Boomer CGs regardless of care setting. Overall, more supports and interventions should focus on the needs low income CGs and their families who have less financial resources to address the complex needs of CRs. In addition, the majority of CGs in the study are women providing care for women. The results show that placement in a non-NH
H. Moon et al. / Geriatric Nursing xx (2016) 1e6
residential care facility is related to better emotional well-being of women than men and institutionalization may help to offset the strain of addressing multiple work and family needs for women boomer CGs. We found that Baby Boomer CGs of older adults in non-NH residential care settings (compared with Baby Boomer CGs of older adults in community) reported a significantly higher level of relationship quality, higher level of informal support, better selfperceived physical health, and a lower level of help with daily activities. These results also support the findings in previous studies that the nature of caregiving for older adults in non-NH residential care settings could be different from CGs of older adults at home.9 Unlike prior studies,6 we found evidence of a significant difference in the emotional well-being of CGs. It is possible that placement of the older adults may relieve the physical distress of the obligations of their daily care demands, and may provide an opportunity to focus on or reshape the quality of the CG: CR relationship. It is also possible that, since more than three-fourths of our CG sample were adult children CGs who may face multiple role conflicts as mother, wife, and employee as well as CG,16 the reduction in a primary stressor such as daily care demand may improve their self-perceived emotional well-being. Our results also suggested that for both groups experiencing arthritis was negatively associated with emotional well-being as well as with their self-perceived general health. These results support previous findings that arthritis is associated with health-related quality of life, such as physical health and general health,10,20 and social and psychosocial functioning.20 Our findings also show that boomer CGs’ health is at risk. For example, boomer CGs in our study reported that they suffered from high blood pressures and arthritis which are risk factors of other disease such as heart disease and which limit usual activities and impact overall well-being.21,22 Although a single item assessed CG’s prevalence of pain, more than half boomer CGs experienced pain which is associated with anxiety, depression, loss of independence, and interference with work and relationships.11 Furthermore, pain may result in problems in the cognitive process and brain function, mood and mental health, cardiovascular health, sexual function, and overall quality of life.23 Thus, these boomer CGs may need early interventions to manage the physical, behavioral and psychological problems caused by blood pressure, arthritis and pain.24,25 The findings overall suggests that CGs to both communitydwelling and institutional-dwelling older adults should be the focus of CG interventions. Our research also highlights factors these interventions should take into account. Informal support was not associated with the health and well-being of CGs to older adults in residential care; however, informal support was a key predictor of emotional well-being of CGs for older adults living in the community. Therefore, interventions for CGs to older adults in the community should especially focus on mobilizing support from family and friends and integrating CGs in networks that provide support and care. Strong community-based organizations that support CGs are especially important for CGs to older adults in the community. Both groups perceived a higher level of emotional well-being when they experienced a better relation quality with their CRs. This result is consistent with previous studies1,4 that highlight the positive effects of the relationship quality on the caregiving outcomes (e.g., quality of life). Both boomer CGs of older adults at home and those of older adults in non-NH residential care settings reported a lower level of general health when they experienced pain, had hypertension, or had financial difficulties due to caregiving. In particular, boomer CGs of older adults in non-NH residential care settings reported worse self-perceived general health when their older adult relatives had AD or other dementia. It is possible that boomer CGs of older adults in non-NH residential care settings may provide actual care with daily activities or other needs
5
of the older adults12 or visit more frequently. Future studies should explore differences between CGs of older adults living in non-NH residential care settings with dementia and without dementia. There are some limitations to our findings. First, we used a cross-sectional design, which limits the ability to test for any changes over time in relationships among stressors, outcomes and resource. Longitudinal investigations of individuals with dementia may be particularly informative when change is examined during critical periods or transition points (e.g., moving to other facilities, CR’s behavioral or cognitive functional changes). It may be possible to understand how stressors, outcome and resources change over time in CGs of older adults in non-NH residential care settings as well as CGs of older adults in community. Second, this study is based on a secondary data analysis. We focused on CGs who spent longer time on caregiving provision among multiple caregivers per older adult. Stress and well-being of secondary caregivers is an important avenue for future research. Due to a limited availability of measures, we defined some dichotomized variables using a single source item (pain, financial difficulties). We also focused only on those CG primary stressors directly related to caregiving. Information was not available on the impact on CGs’ emotional wellbeing and general health of their relationship with facility staff or their satisfaction with the facility.15 Future studies should include this information in their analyses of the effects of stressors on wellbeing and self-perceived health. Conclusion Our findings contribute to current knowledge in several ways. Boomer CGs who continue to provide care for their loved ones in non-NH residential care settings should become more informed about the ways in which non-NH residential care settings provided care affects the caregiving experience. Our findings on the experience of Baby Boomer CGs of older adults in non-NH residential care settings and those of older adults in community increase our understanding of the caregiving experience for the Baby Boomer cohort of CGs. In particular, we provide evidence that residential care for CRs might be helpful for not only the CG’s physical health but also their emotional well-being. Our results also contribute critical information on risk factors for boomer CGs of older adults in non-NH residential care settings and those of older adults living in the community. Finally, we have provided information useful to care providers in identifying the needs of boomer CGs, especially boomer CGs of older adults in non-NH residential care settings. Acknowledgment None. Appendix. Supplementary data Supplementary data related to this article can be found at http://dx.doi.org/10.1016/j.gerinurse.2016.07.006. References 1. Ortman J, Colby S. The Baby Boom Cohort in the United States: 2012 to 2060. Current Population Reports. Washington, DC: U.S. Census Bureau; 2014:25e 1141. 2. Administration on Aging. Aging Statistics. Available: http://www.aoa.acl.gov/ Aging_Statistics/index.aspx. 3. Centers for Disease Control and Prevention. The State of Aging and Health in America 2013. Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2013. 4. Family Caregiver Alliance. Selected Long-term Care Statistics. Available: https://www.caregiver.org/selected-long-term-care-statistics.
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5. Aneshensel CS, Pearlin LI, Mullan JT, et al. Profiles in Caregiving: The Unexpected Career. San Diego, CA: Academic Press; 1995. 6. Gaugler JE, Zarit SH, Pearlin LI. Caregiving and institutionization: perceptions of family conflict and socioemotional support. Int J Aging Hum Dev. 1999;49(1):1e 25. http://dx.doi.org/10.2190/91A8-XCE1-3NGX-X2M7. 7. Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychol Aging. 2011;26(1): 1e14. http://dx.doi.org/10.1037/a0021863. 8. Stolley JM, Reed D, Buckwalter KC. Caregiving appraisal and interventions based on the progressively lowered stress threshold model. Am J Alzheimers Dis Other Demen. 2002;17(2):110e120. http://dx.doi.org/10.1177/153331750201700211. 9. Gaugler JE, Anderson K, Zarit S, et al. Family involvement in nursing homes: effects on stress and well-being. Aging Ment Health. 2004;8(1):65e75. http:// dx.doi.org/10.1080/13607860310001613356. 10. Wethington E, Burgio LD. Translational research on caregiving: missing links in the translation process. Fam Caregiving New Normal; 2015;193e210. http:// dx.doi.org/10.1016/b978-0-12-417046-9.00011-8. 11. Lawton MP, Brody EM, Saperstein AR. A controlled study of respite service for caregivers of Alzheimer’s patients. Gerontologist. 1989;29(1):8e16. http:// dx.doi.org/10.1093/geront/29.1.8. 12. Zimmerman S, Williams CS, Reed PS, et al. Attitudes, stress, and satisfaction of staff who care for residents with dementia. Gerontologist. 2005;45(suppl 1): 96e105. http://dx.doi.org/10.1093/geront/45.suppl_1.96. 13. Kolanowski A, Bossen A, Hill N, et al. Factors associated with sustained attention during an activity intervention in persons with dementia. Dement Geriatr Cogn Disord. 2012;33(4):233e239. http://dx.doi.org/10.1159/000338604. 14. Connell CM, Gibson GD. Racial, ethnic, and cultural differences in dementia caregiving: review and analysis. Gerontologist. 1997;37(3):355e364. http:// dx.doi.org/10.1093/geront/37.3.355. 15. Fingerman KL, Pillemer KA, Silverstein M, et al. The baby boomers’ intergenerational relationships. Gerontologist. 2012;52(2):199e209. http://dx.doi.org/ 10.1093/geront/gnr139.
16. Moon H, Dilworth-Anderson P. Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving. Age Ageing. 2015;44(2): 300e306. http://dx.doi.org/10.1093/ageing/afu119. 17. Haley WE, Levine EG, Brown SL, et al. Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychol Aging. 1987;2(4):323e330. http://dx.doi.org/10.1037/08827974.2.4.323. 18. Montgomery DC, Peck EA, Vining GG. Introduction to Linear Regression Analysis. John Wiley & Sons; 2015. http://dx.doi.org/10.1111/biom.12129. 19. Gitlin LN, Rose K. Factors associated with caregiver readiness to use nonpharmacologic strategies to manage dementia-related behavioral symptoms. Int J Geriatr Psychiatry. 2014;29(1):93e102. http://dx.doi.org/10.1002/ gps.3979. 20. Reed C, Belger M, Dell’Agnello G, et al. Caregiver burden in Alzheimer’s disease: differential associations in adult-child and spousal caregivers in the GERAS observational study. Dement Geriatr Cogn Disord Extra. 2014;4(1):51e64. http://dx.doi.org/10.1159/000358234. 21. Centers for Disease Control and Prevention. Prevalence of doctor-diagnosed arthritis and arthritis-attributable activity limitationdUnited States, 2003e 2005. MMWR Morb Mortal Wkly Rep. 2006;55:1089e1092. Available from: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5540a2.htm. 22. Pase MP, Stough C, Grima NA, et al. Blood pressure and cognitive function the role of central aortic and brachial pressures. Psychol Sci; 2013;1e9. http:// dx.doi.org/10.1177/0956797613488602. 23. Robinson K, Yates K. Effects of two caregiver-training programs on burden and attitude toward help. Arch Psychiatr Nurs. 1994;8(5):312e319. 24. Kolanowski AM, Fick DM, Yevchak AM, et al. Pay attention!: the critical importance of assessing attention in older adults with dementia. J Gerontol Nurs. 2012;38(11):23e27. http://dx.doi.org/10.3928/00989134-20121003-05. 25. Center for Disease Control an Prevention. The Power of Prevention Chronic disease . The Public Health Challenge of the 21st Century. Available from: http:// www.cdc.gov/chronicdisease/pdf/2009-power-of-prevention.pdf; 2009.
Contents lists available at ScienceDirect
Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC) Heehyul Moon, MSW, PhD a, *, Sunshine Rote, PhD a, Jeff A. Beaty, LMSW, MSHA, DHEd b a b
Raymond A. Kent School of Social Work, University of Louisville, KY, 40292, USA Serenity HealthCARE, 12201 Bluegrass Parkway, Louisville, KY 40299, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 7 April 2016 Received in revised form 11 July 2016 Accepted 18 July 2016 Available online xxx
The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N ¼ 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CG groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups. Ó 2016 Elsevier Inc. All rights reserved.
Keywords: Baby boomer Caregiving Non-nursing home residential care settings Quality of life Care stress
Introduction Over 46 million people in the United States are 65 years or older, and a major driver of the rapidly aging population is the Baby Boomer generation (born between 1946 and 1964).1,2 By 2040, when all Baby Boomers are over the age of 65, the older population will constitute over 20% of the general U.S. population.3 Currently, many boomers are entering the role of caregiver to an older person, usually parent, with limited mobility. Many of the boomers’ care recipients are 85 years and older and while the majority of elders receiving care assistance live in the community, 13% reside in institutional settings.4 The future trends in extended longevity and increasing rates of dementia and chronic conditions will result in more provision of care for older adults, and beg an array of questions of the role of caregiving setting for Baby Boomer CG stress processes. The expectation that CGs will not experience distress or burden after an older family member is placed in a long-term care facility is a myth.5 Studies suggest that family CGs to older adults in
Abbreviations: CG, caregiver; CR, care recipient; NSOC, National Study of Caregiving; NHATS, National Health & Aging Trends Study. Conflicts of interest: None declared. * Corresponding author. Raymond A. Kent School of Social Work, University of Louisville, KY, 40292, USA. Fax: þ1 502 852 0422. E-mail address: [email protected] (H. Moon). 0197-4572/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2016.07.006
residential care settings, despite obtaining relief from direct-care tasks (e.g., activities of daily living, instrumental activities of daily living), report continuing distress post-institutionalization, including depression, sadness, loss, guilt, and, potentially, family conflict.6,7,8 This risk for distress likely results from the continued involvement (both physical and emotional) of family CGs after placement, albeit in new and different ways: visiting, interacting with staff and relatives, providing instrumental assistance such as transportation, and making decisions about finances and health care.6,9 Of the available studies on CGs to people in residential care, most have focused on nursing homes (NHs) and changes in the role of the family CG following institutionalization.10 Of the few studies on the topic, research shows that dementia CGs providing care in the community report greater work-related strain than dementia CGs providing care in assisted living facilities, and that CGs to patients in assisted living facilities report higher burden than dementia CGs to patients in NHs.11,12 In addition, one study suggests that CGs may continue to feel guilt at least 10 months after their elderly family member has been admitted to a NH or residential care home,13 indicating a risk for depression and other negative health outcomes. Less attention has been paid to the predictors of burden and well-being of family CGs to people living in non-NH residential care settings including assisted living facilities, care homes, and continuing care retirement homes.14 Non-NH residential care settings tend to house residents with less disability and have less intensive supervision allowing CGs to older adults
2
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living in these facilities more frequent visits and involvement with instrumental care tasks.9 While the majority of institutional care is provided in nursing home settings, in recent years there has been an increase in the use of non-NH care settings,14 especially as the Baby Boom generation meets the needs of work and family life. In particular, Baby Boomer CGs often with families of their own, experience multiple care demands. For instance, unlike previous generations, boomers can expect to spend approximately 40 years simultaneously working and providing personal care and financial assistance for their children, aging parents, older siblings, spouses and/or their spouses’ children, and themselves.15,16 Institutional care providers still face the challenges of understanding family CGs’ needs and experiences, and may find it difficult to devise appropriate interventions for these CGs.10 A better understanding of boomer CGs’ emotional well-being and physical health will be beneficial not only to care providers but also to family CGs themselves, to increase awareness both of their health and the areas to improve their well-being. The conceptual model for the current study is the caregiver stress and coping model (SPM).2,17 Predictors of caregiver wellbeing include primary stressors which include both (a) objective indicators or the CR’s cognitive and physical health status, and (b) subjective indicators or CG overload. Stressors within the caregiving domain influence secondary role strains on family cohesion and finances, and intrapsychic strains, including self-esteem and loss of self. A key component of this framework is the role of background and resources, which are influential at every stage of the caregiving stress process. We do not have all of the proposed factors from the CG stress process model in our data set. However, we do have variables for key primary stressors and objective indicators of CR health (i.e., AD or other dementia) as well as indicators for disability, such as needing help with daily activities and whether there was a regular schedule for care provision. We also included indicators for secondary strains, such as financial difficulties and relationship quality, resources (including informal support) and the emotional well-being and self-rated general health of CGs.2,17 We posed two research questions (RQs) and construct hypotheses (Hs) to address the questions. First (RQ1), are there differences in primary stressor, secondary stressors, resources and outcomes between CGs of older adults in non-NH residential care settings and those of Baby Boomer CGs for older adults in community? Based on previous research, we hypothesized that despite continued caregiving among CGs of older adults in non-NH care settings, they would report a lower level of providing help with daily activities, better relationship quality, and higher levels of physical and emotional well-being than the CGs of older adults living in the community (H1). Second (RQ2), we ask are there differences in factors associated with the CG’s emotional well-being and self-perceived health status, based on CG setting (non-NH residential care or community)? We hypothesized that the effects of primary stressors and secondary stressors would vary with the residential status of the CGs’ older adults (non-NH residential care settings, community, H2). Methods Data source This study was based on a secondary data of the NSOC, which is a sample of 2007 informal CGs identified by Medicare beneficiaries aged 65 and older who participated in the 2011 National Health and Aging Trends Study (NHATS), a nationally representative study that collects data from older adults on an annual basis. The NSOC collects information on how the CG helps the older respondent in the NHATS with everyday activities along with information on the CG’s
own health, family, and income.16 None NHATS respondents in NSOC lived in nursing homes (among 2007 NHATS respondents in NSOC, they lived either the community (n ¼ 1786) or non-NH residential care settings (i.e. assisted living, care homes, and continuing care retirement homes, n ¼ 221)). We excluded those CGs who were not born between 1946 and 1964 (n ¼ 994). The NSOC includes all eligible CGs17 for whom the NHATS respondents provided contact information. To identify the primary CG for a given CR, we counted the number of CGs interviewed per older adult. If an older adult had one CG, we used his/her information. For older adults with multiple CGs, we identified the primary CG as the one who performed the most caregiving duties (based on hours per day) and used his/her information (n ¼ 180), eliminating the secondary CGs (n ¼ 231). Thus, our analyses included only those CGs (N ¼ 782) who provided the most care to an older adult living in community or in a non-NH residential care setting. Measures The NSOC questions for our stressors, resources, and outcomes are presented in the Appendix. Primary stressors included the CR’s dementia status, level of care provided by CG, and whether care was provided on a regular schedule. We defined the CR’s dementia status using either report by NHATS participants or by proxy (if a doctor told the CR that he/ she had dementia or AD). We created a level of care activities variable based on the sum of the responses to the five NSOC questions related to helping with: 1) chores, 2) shopping, 3) personal care, 4) getting around home and 5) transportation. Response categories ranged from 1 ¼ rarely to 4 ¼ every day. Higher scores indicated higher level of involvement in helping with daily activities. We also created a variable for whether care was provided on a regular schedule or not (0 ¼ varied, 1 ¼ regular schedule). Secondary stressors included perceived financial difficulty and relationship quality between CG and the CR. Respondents were asked if providing care for the CR was financially difficult (1 ¼ yes, 0 ¼ no). We defined the quality of the CG’s relationship with the older adult as the sum of four questions (how much CGs enjoys being with the CR, how much CR appreciates CG, how much CR argues with CG, and how much CR gets on CG nerves, as shown in the Appendix), and last two questions were reverse coded (each with a 4-level response ranging from “not at all” (1) to “a lot” (4)). Higher scores indicated a better relationship quality. Resources We defined informal support as the sum of three questions about the existence of supportive friends and family and ability to call on support networks (response options include 1 ¼ yes, 0 ¼ no). CG background and health The background characteristics included CGs’ age, gender (0 ¼ male, 1 ¼ female), and education (0 ¼ high school or less, 1 ¼ some college or more). The NSOC participants were asked about whether they had any of ten chronic conditions. We retained the items for high blood pressure, arthritis, lung disease and serious difficulty seeing but did not keep the other six items in the regression models due to weak associations with the outcomes. We defined pain through a single NSOC item (whether the participant was bothered by pain) (0 ¼ no, 1 ¼ yes). Outcomes We estimated the CG’s emotional well-being as the sum of 7 questions (each with a 4-level response ranging from 1 ¼ “not at all” to 4 ¼ “nearly every day”). Higher scores indicated a better self-
H. Moon et al. / Geriatric Nursing xx (2016) 1e6
perceived emotional well-being. We categorized the CG’s overall selfrated general health into five levels, from poor (1) to excellent (5).
Table 1 Sample characteristics. Characteristic
Total (n ¼ 782)
Boomer CGs of older adults in community (n ¼ 679) %
%
CG age (in years) (mean (SD)) CR age CG gender (female) CR gender CG proxy race/ethnicity Non-Hispanic White Non-Hispanic Black Hispanic Relationship to CR Spouse Daughter Son Child-in-law Friends CG education High school diploma/GED/or less than high school More than high school (some college or associate degree, Bachelor’s degree or higher) CG income, median ($) CG’s chronic illness Heart attack Heart disease High blood pressure Arthritis Osteoporosis Diabetes Lung disease Cancer Serious difficulty seeing Serious difficulty hearing CG’s pain
55.95 (5.36)
55.89 (5.52)
57.15 (5.74)
ns
82.55 (7.97) 72 (563) 71.6 (401)
81.98 (7.97) 72.2 (497) 71.9 (342)
85.77 (7.11) 64.1 (66) 70.2 (59)
<.001 ns ns <.001
57.5 (322) 32.7 (183) 5.1 (40)
52.7 (251) 36.3 (173) 8.2 (39)
84.5 (71) 11.9 (10) 1.2 (1)
7.5 (59) 50.6 (396) 21.6 (169) 4.6 (36) 2.9 (23)
8.1 (55) 51.7 (351) 20.6 (140) 4.4 (30) 2.2 (15)
3.9 (4) 43.7 (45) 28.2 (29) 5.8 (6) 7.9 (8)
ns
38.6 (302)
41.1 (279)
22.3 (23)
<.001
61.4 (480)
58.9 (400)
77.2 (80)
40,000
40,000
70,000
<.001
3.4 (26) 6.3 (49) 43.1 (355) 38.9 (302) 12.7 (98) 16.7 (130) 13.8 (107) 7.7 (60) 6.1 (47)
3.1 (21) 5.9 (40) 43.2 (291) 39 (263) 13.3 (89) 17.8 (121) 13.8 (93) 8.5 (57) 6.8 (46)
4.9 (5) 8.7 (9) 37.9 (39) 36.3 (45) 8.8 (9) 8.7 (9) 13.6 (14) 2.9 (3) 1.0 (1)
ns ns ns ns ns <.05 ns <.05 <.05
4.5 (35)
4.6 (31)
4 (5)
ns
54.9 (427)
55 (371)
54.4 (56)
ns
Analytic strategy We tested for multicollinearity among the potential predictors entered in the models using two collinearity statistics: the tolerance value and the variance inflation factor (VIF). We defined a serious collinearity problem as either a tolerance value less than .1 or a VIF greater than 10.18 We found no evidence of multicollinearity.19 The range of the VIF and tolerance were 1.432e1.057 and .695e.946, respectively. We used two-tailed independent ttests and chi-square tests to assess the differences in characteristics between Baby Boomer CGs of older adults in community and in non-NH residential care settings. Lastly, since the data met the assumption of independent errors (DurbineWatson value ¼ 1.90), we used four ordinary least squares multiple regression analyses with simultaneous entry of predictors to investigate factors associated with the outcomes of interest. Results Sample description Table 1 presents descriptive information on the demographic characteristics of Baby Boomer CGs of older adults in community and in non-NH residential care settings. The average age of Baby Boomer CGs of older adults in community and in non-NH residential care settings was 55.79 years (range 34e66) and 57 years (range 41e65), respectively. More than three-fourths of both CG groups were children of the CR and the majority of these were daughters providing care for mothers. More than half of the two groups had some college or associate degree or higher. The two groups did not significantly vary in terms of CG age, CG gender, CG relationship to CR, or certain CR chronic illnesses (e.g., heart attack, heart disease, osteoporosis, cancer, and serious difficulty hearing) or CG pain. However, there were statistically significant differences in CG race/ethnicity (X2(4, N ¼ 560) ¼ 30.668, p < .001), education (X2(1, N ¼ 782) ¼ 13.278, p < .001), CG income (t(497) ¼ 4.66, p < .001), and prevalence of diabetes (X2(1, N ¼ 777) ¼ 5.445, p < .025), cancer (X2(1, N ¼ 775) ¼ 3.879, p < .05), and serious difficulty seeing (X2(1, N ¼ 776) ¼ 5.399, p < .05). As hypothesized (H1), compared with the Baby Boomer CGs of older adults in community, Baby Boomer CGs of older adults in nonNH residential care settings reported: a lower level of providing help with daily activities including transportation (t(774) ¼ 8.85, p < .001); a better relationship quality with the CRs (t(766) ¼ 2.03, p < .001); a better physical health (t(558) ¼ 4.054, p < .001); and a better emotional well-being (t(762) ¼ 2.055, p < .05). Moreover, Baby Boomer CGs of older adults in non-NH residential care settings reported a higher level of informal support (t(733) ¼ 2.035, p < .05). There were also significant differences in providing care on a regular basis (X2(1, N ¼ 777) ¼ 13.4, p < .001) and financial difficulties (X2(1, N ¼ 779) ¼ 12.589, p < .001). Regression analysis The four models shown in Table 2 explained between 15.2% and 43.3% of the variance in CG health and well-being. As hypothesized (H2), there were both similarities and differences in factors that influenced emotional well-being and perceived general health between the two CG groups. The results of the regression analysis appear in Table 2; significant items are mentioned below.
3
Boomer CGs of older adults in Non-NH residential care settings (n ¼ 103)
p value
CG ¼ caregiver; CR ¼ care recipient; Valid percentages are presented; NS indicates no significant differences between two groups.
Similarities between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community A better relationship with the CR was positively associated with emotional well-being in both groups. CG education was positively associated with CG self-perceived health for both groups of CGs. Financial difficulties due to caregiving are associated with significantly worse CG self-perceived health for both groups. Chronic conditions, such as experiencing arthritis and lung disease, were significantly related to lower level of emotional well-being and having high blood pressure and arthritis were significantly related to worse self-perceived physical health in both GG groups. Differences between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community: emotional well-being For caregiving context, gender was only significant for wellbeing among CGs to older adults in non-NH residential care
4
H. Moon et al. / Geriatric Nursing xx (2016) 1e6
Table 2 Multiple regressions of predictors of emotional well-being and self-perceived general health of baby boomer CGs to older adults in RC/AL and in the community. Variable
CGs to older adults in non-NH residential care b
SEb
CGs to older adults in community
B
b
SEb
b
Outcome: emotional well-being CG context Gender (1 ¼ female) Education (1 ¼ some college or more) High blood pressure Arthritis Lung disease Pain Problems with sight Primary stressors Alzheimer’s disease or other dementia Help with daily activities Regular schedule Secondary stressors Financial difficulties Relationship quality Resource Informal support R2 F CG context Gender (1 ¼ female) Education (1 ¼ some college or more) High blood pressure Arthritis Lung disease Pain Problems with sight Primary stressors Alzheimer’s disease or other dementia Help with daily activities Regular schedule Secondary stressors Financial difficulties Relationship quality Resource Informal support R2 F
1.782 .254 2.004 1.715 .284 1.511 1.744
.682 .761 .690 .806 .978 .767 3.185
.280* .034 .066 .321* .189* .046 .051
.010 .920 .605 .833 .432 1.058 .785
.2895 .264 .261 .281 .368 .274 .516
.001 .132*** .088* .120** .044*** .156*** .057
.668 .101 .459
.951 .114 .982
.079 .095 .069
.341 .043 .386
.370 .041 .281
.036 .046 .057
.662 .360
.982 .179
.070 .218*
1.453 .237
.303 .059
.190*** .157***
.461 .273 (13,78) 2.255* Outcome: self-rated general health
.029
.567
.163
.132*** .189 11.913***
.163 .509 .547 .782 .022 .425 .656
.203 .227 .205 .240 .291 .228 .948
.070 .185* .244** .344** .077 .191 .061
.095 .276 .399 .478 .369 .486 .227
.088 .080 .079 .085 .112 .083 .156
.038 .122*** .177*** .210*** .115*** .218*** .050
.332 .021 .259
.283 .034 .2225
.107** .055 .107
.085 .010 .092
.112 .013 .085
.027 .032 .042
.988 .022
.292 .053
.289*** .037
.228 .063
.092 .018
.091* .128***
.200
.137 .514 6.346***
.120
.024
.050
.017 .305 20.43***
.135
(13,78)
(13,594)
(13,604)
CG ¼ caregiver; RC/AL ¼ Residential care/Assisted living; *p .05. **p .01. ***p .001.
settings, with women reporting a higher level of perceived emotional well-being compared with their male counterparts. Surprisingly, primary stressors were unrelated to CG well-being, regardless of caregiving setting. Results also show that CG health, secondary stressors, and resources are more consequential for the mental health of CGs to older adults residing in the community. Differences between Baby Boomer CGs of people in non-NH residential care settings and Baby Boomer CGs of older adults in community: self-rated health One primary stressor was associated with self-rated health. In particular, boomer CGs of older adults in non-NH residential care settings reported significantly worse health when their CRs had AD or other dementia. Dementia status was unrelated, surprisingly, to self-rated health for CGs to older adults residing in the community. Similar to the results for emotional well-being, more CG health factors and secondary stressors are related to self-rated health for Boomer CGs to older adults in the community vs. non-NH residential care. Discussion While extensive research has focused on the experience of CGs of older adults residing in the community, fewer studies have paid
attention to CGs of older adults in institutions, especially in non-NH residential care facilities such as assisted living, board and care home, non-NH home parts of a continuing care retirement community. In light of this, our purpose was to provide a comprehensive understanding of the demographics, the prevalence of chronic illness, perceived mood, feelings, and other caregiving experience of Baby Boomer CGs of older adults in non-NH care settings. Our results contribute to the body of caregiving research in several ways. We address the gap in literature on Baby Boomer CGs, present results using national data, and highlight important differences in the caregiving experience between Baby Boomer CGs of older adults in non-NH residential care settings and in the community. Our findings show the importance of CG background factors, especially gender, income, and educational attainment. Boomer CGs to older adults residing in the community (vs. non-NH residential care) tend to report lower household incomes and educational levels; however, educational attainment was associated with health and well-being for both groups. Financial resources and strain are also related to the health status of Baby Boomer CGs regardless of care setting. Overall, more supports and interventions should focus on the needs low income CGs and their families who have less financial resources to address the complex needs of CRs. In addition, the majority of CGs in the study are women providing care for women. The results show that placement in a non-NH
H. Moon et al. / Geriatric Nursing xx (2016) 1e6
residential care facility is related to better emotional well-being of women than men and institutionalization may help to offset the strain of addressing multiple work and family needs for women boomer CGs. We found that Baby Boomer CGs of older adults in non-NH residential care settings (compared with Baby Boomer CGs of older adults in community) reported a significantly higher level of relationship quality, higher level of informal support, better selfperceived physical health, and a lower level of help with daily activities. These results also support the findings in previous studies that the nature of caregiving for older adults in non-NH residential care settings could be different from CGs of older adults at home.9 Unlike prior studies,6 we found evidence of a significant difference in the emotional well-being of CGs. It is possible that placement of the older adults may relieve the physical distress of the obligations of their daily care demands, and may provide an opportunity to focus on or reshape the quality of the CG: CR relationship. It is also possible that, since more than three-fourths of our CG sample were adult children CGs who may face multiple role conflicts as mother, wife, and employee as well as CG,16 the reduction in a primary stressor such as daily care demand may improve their self-perceived emotional well-being. Our results also suggested that for both groups experiencing arthritis was negatively associated with emotional well-being as well as with their self-perceived general health. These results support previous findings that arthritis is associated with health-related quality of life, such as physical health and general health,10,20 and social and psychosocial functioning.20 Our findings also show that boomer CGs’ health is at risk. For example, boomer CGs in our study reported that they suffered from high blood pressures and arthritis which are risk factors of other disease such as heart disease and which limit usual activities and impact overall well-being.21,22 Although a single item assessed CG’s prevalence of pain, more than half boomer CGs experienced pain which is associated with anxiety, depression, loss of independence, and interference with work and relationships.11 Furthermore, pain may result in problems in the cognitive process and brain function, mood and mental health, cardiovascular health, sexual function, and overall quality of life.23 Thus, these boomer CGs may need early interventions to manage the physical, behavioral and psychological problems caused by blood pressure, arthritis and pain.24,25 The findings overall suggests that CGs to both communitydwelling and institutional-dwelling older adults should be the focus of CG interventions. Our research also highlights factors these interventions should take into account. Informal support was not associated with the health and well-being of CGs to older adults in residential care; however, informal support was a key predictor of emotional well-being of CGs for older adults living in the community. Therefore, interventions for CGs to older adults in the community should especially focus on mobilizing support from family and friends and integrating CGs in networks that provide support and care. Strong community-based organizations that support CGs are especially important for CGs to older adults in the community. Both groups perceived a higher level of emotional well-being when they experienced a better relation quality with their CRs. This result is consistent with previous studies1,4 that highlight the positive effects of the relationship quality on the caregiving outcomes (e.g., quality of life). Both boomer CGs of older adults at home and those of older adults in non-NH residential care settings reported a lower level of general health when they experienced pain, had hypertension, or had financial difficulties due to caregiving. In particular, boomer CGs of older adults in non-NH residential care settings reported worse self-perceived general health when their older adult relatives had AD or other dementia. It is possible that boomer CGs of older adults in non-NH residential care settings may provide actual care with daily activities or other needs
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of the older adults12 or visit more frequently. Future studies should explore differences between CGs of older adults living in non-NH residential care settings with dementia and without dementia. There are some limitations to our findings. First, we used a cross-sectional design, which limits the ability to test for any changes over time in relationships among stressors, outcomes and resource. Longitudinal investigations of individuals with dementia may be particularly informative when change is examined during critical periods or transition points (e.g., moving to other facilities, CR’s behavioral or cognitive functional changes). It may be possible to understand how stressors, outcome and resources change over time in CGs of older adults in non-NH residential care settings as well as CGs of older adults in community. Second, this study is based on a secondary data analysis. We focused on CGs who spent longer time on caregiving provision among multiple caregivers per older adult. Stress and well-being of secondary caregivers is an important avenue for future research. Due to a limited availability of measures, we defined some dichotomized variables using a single source item (pain, financial difficulties). We also focused only on those CG primary stressors directly related to caregiving. Information was not available on the impact on CGs’ emotional wellbeing and general health of their relationship with facility staff or their satisfaction with the facility.15 Future studies should include this information in their analyses of the effects of stressors on wellbeing and self-perceived health. Conclusion Our findings contribute to current knowledge in several ways. Boomer CGs who continue to provide care for their loved ones in non-NH residential care settings should become more informed about the ways in which non-NH residential care settings provided care affects the caregiving experience. Our findings on the experience of Baby Boomer CGs of older adults in non-NH residential care settings and those of older adults in community increase our understanding of the caregiving experience for the Baby Boomer cohort of CGs. In particular, we provide evidence that residential care for CRs might be helpful for not only the CG’s physical health but also their emotional well-being. Our results also contribute critical information on risk factors for boomer CGs of older adults in non-NH residential care settings and those of older adults living in the community. Finally, we have provided information useful to care providers in identifying the needs of boomer CGs, especially boomer CGs of older adults in non-NH residential care settings. Acknowledgment None. Appendix. Supplementary data Supplementary data related to this article can be found at http://dx.doi.org/10.1016/j.gerinurse.2016.07.006. References 1. Ortman J, Colby S. The Baby Boom Cohort in the United States: 2012 to 2060. Current Population Reports. Washington, DC: U.S. Census Bureau; 2014:25e 1141. 2. Administration on Aging. Aging Statistics. Available: http://www.aoa.acl.gov/ Aging_Statistics/index.aspx. 3. Centers for Disease Control and Prevention. The State of Aging and Health in America 2013. Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2013. 4. Family Caregiver Alliance. Selected Long-term Care Statistics. Available: https://www.caregiver.org/selected-long-term-care-statistics.
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