Alzheimer’s disease (AD) is the third most costly disease in the United States (Alzheimer’s Association, 2011; Messinger-Rapport, McCallum, & Hujer, 2006; Nichols et al., 2008; Sanders & Morano, 2008). It affects more than 5 million older adults and the societal cost of this care exceeds $180 billion per year, with the national cost expected to more than triple by 2050 (Alzheimer’s Association, 2011). Most of the 5 million individuals with AD reside in the community and receive their care from more than 14 million family caregivers (Alzheimer’s Association, 2011). These caregivers provide an estimated 17 billion hours of unpaid care per year and absorb the economic, physical, and mental costs of caregiving (Alzheimer’s Association, 2011; National Alliance for Caregiving, 2011). Family caregivers may include spouses, adult children, other family members, friends, and neighbors (National Alliance for Caregiving, 2011). As the total number of adults affected by AD and their caregivers increases, AD among Black older adults and their family caregivers also increases (National Alliance for Caregiving, 2011; Sörenson & Pinquart, 2005).
Despite increasing attention given to racial differences in dementia caregiving (Belle et al., 2006; Sörenson & Pinquart, 2005), racial differences in the association of caregiver background characteristics and behavioral and psychological symptoms of dementia (BPSD) in care recipients are not well understood. Caregiver background characteristics (i.e., demographic and socioenvironmental factors) may influence the reporting of BPSD by caregivers; thus, understanding such associations is an important step toward increasing cultural awareness. This information is urgent because (a) the older adult Black population is growing rapidly in comparison to the older adult White population (Census Bureau, 2013); and (b) evidence suggests that Black individuals have both an increased risk and higher prevalence of dementia than White individuals (Alzheimer’s Association, 2011)—two facts that will potentially increase the demands of Black family caregivers.
Behavioral and Psychological Symptoms of Dementia
BPSD are behaviors that occur during the middle to late stages of dementia (Logsdon, McCurry, & Teri, 2007; Senanarong et al., 2004). BPSD include anxiety, depression, wandering, hallucinations, verbal and physical aggression and/or agitation, paranoia, or disinhibition (Okura & Langa, 2011; Teri, Logsdon, & McCurry, 2002). BPSD often interfere with care or endanger recipient safety (Senanarong et al., 2004). BPSD account for up to 30% of dementia-related costs, and a higher BPSD prevalence in the community contributes to reduced caregiver income or less ability to sustain employment (Cotter, 2007; Okura & Langa, 2011). These behaviors are also common predictors of institutionalization (Cotter, 2007; Okura et al., 2011; Sink, Holden, & Yaffe, 2005).
Racial Differences in Behavioral and Psychological Symptoms of Dementia
Results have been mixed in studies of racial differences in the reporting of BPSD. Some studies suggest that Black caregivers report more behaviors than White caregivers. For example, Logsdon et al. (2007) found that Black caregivers reported more than five simultaneous behaviors from care recipients in comparison to White caregivers, who reported up to three. However, other studies suggest that Black caregivers may be more likely to underreport behaviors as a result of not understanding the behaviors, accepting them as “normal,” misinterpreting them, or ignoring or minimizing them (Dilworth-Anderson & Gibson, 2002; Jett, 2006; Pinquart & Sörenson, 2011).
Although research on racial differences in dementia caregivers has suggested unique experiences (e.g., less likely to be married, tend to be younger, have less years of education) of Black caregivers, if or how socioenvironmental factors play a role in the reporting/recognition of BPSD is not well understood (Belle et al., 2006; Elliott, Burgio, & DeCoster, 2010; Sörenson & Pinquart, 2005). For example, some studies suggest that the caregiver relationship may influence perceptions of caregiving behaviors with spouses tending to report fewer behaviors than adult children—possibly because of differences in the relationship dynamics (DiBartolo & Soeken, 2003; Pinquart & Sörenson, 2011). However, in the Black community, caregivers are less likely to be spouses (Belle et al., 2006; Haley et al., 2004; Sörenson & Pinquart, 2005). Thus, the extent to which caregiver characteristics (e.g., relationship type) may influence the manifestation and reporting of BPSD among Black caregivers warrants further study and could help explain the mixed results in the literature. In addition, Black caregivers have more frequent contact with care recipients (Dilworth-Anderson et al., 2005); however, less is known about how or whether the increased frequency may affect reporting of dementia behaviors.
Caregiver Background Characteristics
The current study examined two categories of caregiver background characteristics: (a) demographic and (b) socioenvironmental. Demographic caregiver characteristics (i.e., age, gender, race) generally cannot be changed, but may be quantified or described and may affect the individual caregiving process. In contrast, socioenvironmental variables (i.e., caregiver relationship, frequency of contact, length of time helped) represent potentially modifiable and specific attributes of social interactions or relationships within the caregiving environment that can either promote or inhibit behaviors (Algase et al., 1996).
Demographic characteristics of caregivers have been well studied in the majority White population, with most studies demonstrating that caregivers tend to be older wives (Etters, Goodall, & Harrison, 2008). Researchers have examined racial differences in both demographic and socioenvironmental characteristics. For example, some studies have shown that Black caregivers are less likely to be married and tend to be younger and have fewer years of education than White caregivers (Dilworth-Anderson et al., 2005; Haley et al., 2004; Kosberg, Kaufman, Burgio, Leeper, & Sun, 2007). In addition, Black caregivers are more likely than White caregivers to be adult children or extended relatives, and are more likely to live with the care recipient and spend more time in the caregiving role (Dilworth-Anderson et al., 2005; Haley et al., 2004; Lampley-Dallas, 2002). However, few studies have examined how these characteristics are associated with reporting of BPSD or how the associations may vary across race.
The purpose of the current study was to examine background caregiver characteristics (i.e., demographic and socioenvironmental variables) of Black and White community-dwelling caregivers and their association with reported care recipients’ BPSD. The study was guided by an adapted Need Driven Dementia Compromised Behavior Model (NDB; Algase et al., 1996) (Figure). In the current study, the authors broadened the original setting in the study by Algase et al. (1996) from the nursing home to focus on family caregiving in the community, which is where most dementia caregiving for Black individuals occurs (Messinger-Rapport et al., 2006; Nichols et al., 2008). Two major constructs were examined based on caregiver reports: (a) caregiver background characteristics (i.e., demographic and socioenvironmental) and (b) care recipients’ BPSD (i.e., delusions, hallucinations, agitation, depression).
Relationship between caregiver background characteristics and care recipients’ behavioral and psychological symptoms of dementia (BPSD).
The specific aims were to (a) determine if there were demographic and socioenvironmental differences between Black and White caregivers in the study population, and (b) examine to what extent caregiver demographic and socioenvironmental variables were associated with care recipients’ BPSD.
The authors conducted a secondary data analysis using the Aging Demographics and Memory Study (ADAMS) of Black and White caregiver dyads who reported experiencing BPSD (N = 755). The ADAMS is a supplement to the Health and Retirement Study (HRS), which is sponsored by the National Institute of Aging. It was designed as a community-based assessment of dementia in a nationally representative older adult sample to provide information on risk factors and outcomes of cognitive impairment. Study design, methodology, and sample characteristics have been described elsewhere (Langa et al., 2005). The ADAMS is a publicly available dataset and was accessed with permission from the Interuniversity Consortium for Political and Social Research. Written informed consent was obtained from all respondents for ADAMS data, and Institutional Review Board approval was obtained from the University of Michigan and Duke University (Langa et al., 2005). Secondary analysis of the ADAMS data focused on Wave A collected between August 2001 and December 2003, and included caregiver reports of care recipients’ behaviors of delusions, hallucinations, agitation, and depression. The authors chose these behaviors both based on the literature, which suggests these behaviors can be most distressing for family caregivers, and their frequencies in the dataset. The authors used the adapted NDB model to organize caregivers’ demographic and socioenvironmental characteristics related to behavioral outcomes.
A random subsample of 1,770 individuals older than 70 from the larger HRS conducted in 2000 was selected to comprise the ADAMS. For the current project, caregivers who answered questions regarding behavioral outcomes were included in the analysis.
For the purpose of the current study, two major constructs were identified: (a) caregiver background characteristics (i.e., demographic and socioenvironmental) and (b) care recipients’ BPSD.
Caregiver Background Characteristics. Demographic characteristics of caregivers included age, race, gender, education, marital status, and region of residence. Original data categorized education as no degree, general educational development, high school, 2-year degree, 4-year degree, master’s degree, or professional degree. For analyses in the current study, education was collapsed into three categories: less than high school, high school completion, or greater than high school. Original data categorized region as Northeast, Midwest, South Atlantic, South Central, and West. For the current study, region was collapsed into four categories: Northeast, Midwest, South, and West.
Caregiver socioenvironmental characteristics included (a) relationship of caregiver to care recipient, (b) lives with care recipient, (c) frequency of contact, (d) how long known (years), and (e) length of time helped. Relationship between caregiver and care recipient was originally categorized as spouse, child, grandchild, child-in-law, sibling, niece, nephew, sibling-in-law, parent-in-law, other relative, professional, or non-relative. In the current study, relationship was collapsed into four groups: spouse, child, other relative, or non-relative. Frequency of contact data originally included daily contact, several times per week, once per week, one to three times per month, or less than once per month. Frequency of contact was later collapsed into three categories: daily, weekly, and monthly. The authors combined “lives with” and “frequency of contact–daily” because of colinearity.
Care Recipients’ BPSD. The Neuropsychiatric Inventory (NPI) was the selected behavioral outcome measure (Cummings et al., 1994; Langa et al., 2005). The NPI is a dichotomized yes/no measure of reported behavioral occurrence during the previous month and was administered to caregivers to detect the presence of common behavioral manifestations among individuals with dementia. The NPI assessed delusions, hallucinations, agitation/aggression, depression, apathy, elation, anxiety, disinhibition, irritability/lability, and aberrant motor activity. The authors focused on the four behaviors of delusions, hallucinations, agitation, and depression based on their frequencies in the data set.
Independent t tests and chi-square tests were used to make between-group comparisons between Black and White caregivers. Logistic regression models were used to describe associations between caregiver characteristics and caregiver reports of BPSD (i.e., delusions, hallucinations, agitation, and depression). Logistic regression analyses controlled for age and race and examined simultaneously selected caregiver socioenvironmental variables in relation to the odds of each reported care recipients’ behavior. Analyses were conducted with SPSS version 19.0.
Significant differences were noted between Black and White caregivers in five demographic characteristics (Table 1). Black caregivers were younger and more likely to be female, have less education, and live in the South, and were less likely to be married. There was only one socioenvironmental difference between Black and White caregivers: Black caregivers were more likely to be an adult child (Table 2). No significant differences were noted between Black and White caregivers of whether they lived with the care recipient, how frequently they had contact, how long they had helped, how long they had known, or the hours per day that they helped the care recipient.
Caregiver Demographic Variables
Caregiver Socioenvironmental Variables
Logistic regression analyses used caregiver socioenvironmental characteristics to examine the odds of the caregiver reporting each BPSD (Table 3). The model with depression had the most frequent associations with socioenvironmental characteristics. Increased caregiver age was associated with increased odds that caregivers would report care recipients’ depression. Race was associated with increased odds of depression, in that Black caregivers were less likely than White caregivers to report depression in the care recipient. Non-family caregivers compared to spousal caregivers had increased odds of reporting care recipients’ depression. Other family members compared to spouses had decreased odds of reporting care recipients’ depression. More years known was also associated with increased odds of reporting care recipients’ depression.
Relationships Between Caregiver Socioenvironmental Variables and Care Recipients’ Behavioral and Psychological Symptoms of Dementia
Fewer caregiver socioenvironmental characteristics were associated with reporting care recipients’ agitation. The odds of reported agitation increased with decreased frequency of contact and increased hours of care per day. No caregiver socioenvironmental variables were associated with hallucinations or delusions.
Caregiver Background Characteristics
In the current secondary analysis of a nationally representative study, the authors found several differences in caregiver background characteristics. Black caregivers were more likely to be younger, female, single, and have fewer years of education compared to White caregivers. They were also more likely to be adult children from the South. These findings are consistent with the literature on caregiving to dementia patients, with the exception of geographic location (Dilworth-Anderson et al., 2005; Elliott et al., 2010; Sörenson & Pinquart, 2005), and raise a number of important implications when examining Black caregivers.
First, given that Black caregivers are typically younger and adult children, they are more likely to be in the position of having to balance competing demands of employment and their own families, and less likely to be of retirement age. However, even when they are of retirement age, it has been demonstrated that they are often forced to retire later due to financial challenges or insufficient pensions, and have not earned sufficient benefits for retirement (Mermin, Johnson, & Murphy, 2007). For an individual with caregiving demands, this is an additional challenge. Second, Black caregivers who are predominantly female, unmarried, and less educated may endure additional challenges because they are often the primary head of the household, have less support systems to help with caregiving, and less job flexibility despite greater caregiving demands (Dilworth-Anderson, Williams, & Cooper, 1999). Finally, because Black caregivers are also more likely to reside in the South, there may be important cultural beliefs (e.g., shared caregiving, deep-rooted family obligations) that influence caregiving in this population (Dilworth-Anderson et al., 1999).
Care Recipients’ Behavioral and Psychological Symptoms of Dementia
Of the four reported BPSD, socioenvironmental characteristics were associated with only two (i.e., depression and agitation). More than one half of caregiver socioenvironmental variables were associated with reported care recipients’ depressive symptoms. Characteristics of the caregiver (e.g., age, race) were associated with reporting of depressive symptoms in the care recipient (i.e., older caregivers were more likely to report depressive symptoms, but Black caregivers were less likely to report depressive symptoms). Aging caregivers who lose the ability to provide previous levels of care due to disease progression and increased care demands may be more likely to report care recipients’ depression.
Black caregivers who are less likely to report depressive symptoms may, in fact, be doing so due to the persistent stigma of depression within Black families (Conner et al., 2010). In addition, the type of caregiver relationship and how long the caregiver was in the relationship influenced the reporting of depression. Long-standing relationships, in which a change occurs in relationship role due to caregiving, may result in greater reporting of care recipients’ depression (Quinn, Clare, & Woods, 2009). It may also be possible that the caregiver is experiencing depressive symptoms and “projects” these feelings onto the impaired family member (Quinn et al., 2009).
Only two caregiver socioenvironmental variables were significantly associated with agitated behaviors: (a) frequency of contact and (b) hours of care. The level of intensity and time involved in care are important because the accumulated strain or burden on the caregiver may be perceived by the care recipient with an agitation response. The care recipient being more agitated results in increased odds of the caregiver reporting the increased frequency of this behavior (Cohen-Mansfield, Parpura-Gill, & Golander, 2006; Hubbard, Cook, Tester, & Downs, 2002). It is also likely that, due to the increase in manifestations of BPSD, the care recipient requires more frequent care (Okura & Langa, 2011).
Study Strengths and Limitations
Study strengths included the use of a nationally representative sample, which provides insight into the dementia caregiving experience for Black caregivers and expands application of the NDB model to a community setting. An important component of the NDB model is that, in combination with a variety of caregiver characteristics within the care recipients’ environment, behaviors are essentially a communication of unmet care recipients’ needs. The underlying premise of unmet care recipients’ needs is relevant to caregivers in community settings and sets the stage to extend knowledge regarding caregiving in the Black community.
There were also some study limitations. Data were analyzed cross-sectionally and the behavioral findings relied on caregiver subjective reports of behaviors as opposed to objective assessments.
Implications and Recommendations for Future Studies
The current study findings underscore the benefit of being aware of caregiver socioenvironmental variables, which may be more amendable to change in future research. Although it is important to recognize the influence of caregiver demographic variables, socioenvironmental variables (e.g., type and length of relationship, time and intensity of caregiving) may actually play a role in increasing care recipients’ BPSD. Helping to educate caregivers (especially in the Black community) about recognizing and reporting BPSD, but also engaging in self-care, is important for both caregivers and care recipients.
Broader implications that influence policy, advocacy, and funding for caregiver services can be identified and further developed through research.
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Caregiver Demographic Variables
|Variable||White Caregivers (n = 512)||Black Caregivers (n = 124)||Total (N = 755)a||p|
|Age (years)||65.40 (13.1)||59.92 (15.4)||64.17 (13.91)||<0.01|
| Female||367 (72.7)||98 (81.7)||465 (74.4)||<0.05|
| Male||138 (27.3)||22 (18.3)||160 (25.6)|
| High school/GED||167 (32.6)||35 (28.2)||202 (31.8)||<0.01|
| College (2 to 4 years)||152 (29.7)||28 (22.6)||180 (28.3)|
| College (>4 years)||143 (27.9)||16 (12.9)||159 (25)|
| < High school||50 (9.8)||45 (36.3)||95 (14.9)|
| Married||388 (75.8)||62 (50)||450 (70.8)||<0.01|
| Not married||124 (24.2)||62 (50)||186 (29.2)|
| South||183 (36.9)||81 (71.7)||264 (43.3)||<0.01|
| Midwest||128 (25.8)||16 (14.2)||144 (23.6)|
| West||110 (22.2)||3 (2.7)||113 (18.6)|
| Northeast||75 (15.1)||13 (11.5)||88 (14.4)|
Caregiver Socioenvironmental Variables
|Variable||White Caregivers (n = 512), Mean (SD)||Black Caregivers (n = 124), Mean (SD)||Total (N = 755), Mean (SD)a||p|
|Lives with care recipient|
| Yes||256 (50.3)||65 (53.3)||321 (50.9)||0.31|
|Frequency of contact|
| Daily||262 (51.5)||63 (51.2)||325 (51.4)||0.10|
| Weekly||162 (31.8)||48 (39)||210 (33.2)|
| Monthly||85 (16.7)||12 (9.8)||97 (15.3)|
|Length of time helped|
| <1 year||45 (28.3)||9 (21.4)||54 (26.9)||0.66|
| 1 to 2 years||36 (22.6)||11 (26.2)||47 (23.4)|
| >2 years||78 (49.1)||22 (52.4)||100 (49.8)|
| Spouse||208 (40.9)||28 (22.6)||236 (37.3)||<0.01|
| Adult child||186 (36.5)||55 (44.4)||241 (38.1)|
| Other relative||60 (11.8)||27 (21.8)||87 (13.7)|
| Non-relative||55 (10.8)||14 (11.3)||69 (10.9)|
|How long known (years)||48.57 (17.5)||48.4 (16.7)||48.5 (17.3)||0.95|
|Hours per day helped||6.82 (7.97)||9.33 (9.43)||7.49 (8.42)||0.10|
Relationships Between Caregiver Socioenvironmental Variables and Care Recipients’ Behavioral and Psychological Symptoms of Dementia
|Behavior||Socioenvironmental Variable||OR [95% CI]||Wald||p|
|Depression||Age||1.06 [1.01, 1.10]||4.82||0.028|
|Race (Black versus White)||11.62 [3.02, 44.64]||12.75||0.000|
| Non-family versus spouse||8.83 [1.97, 39.61]||8.10||0.004|
| Other family versus spouse||0.24 [0.08, 0.70]||6.93||0.008|
| Child versus spouse||0.44 [0.17, 1.14]||2.90||0.089|
|Frequency of contact|
| Less than several times per week versus daily||0.85 [0.28, 2.52]||0.092||0.762|
| Several times per week versus daily||1.75 [0.37, 8.43]||0.493||0.483|
| Hours per day of care||1.01 [0.97, 1.06]||0.321||0.571|
|Years known||0.96 [0.92, 1.00]||4.07||0.044|
|Agitation||Age||1.01 [0.97, 1.06]||0.323||0.570|
|Race (Black versus White)||1.25 [0.51, 3.08]||0.238||0.626|
| Non-family versus spouse||1.80 [0.49, 6.63]||0.781||0.377|
| Other family versus spouse||0.68 [0.49, 6.63]||0.654||0.419|
| Child versus spouse||0.90 [0.38, 2.12]||0.057||0.811|
|Frequency of contact|
| Less than several times per week versus daily||0.35 [0.12, 1.02]||3.72||0.054|
| Several times per week versus daily||2.50 [0.52, 11.91]||1.31||0.253|
| Hours per day of care||0.95 [0.91, 0.99]||6.19||0.013|
|Years known||0.99 [0.95, 1.02]||0.496||0.481|