Caregiver Burdens of Family Members with Alzheimer’s disease

Hales TN, Cody P, Montgomery AJJ, Gray FC, Saunders-Goldson S and Baker SR

Published on: 2020-12-05

Abstract

Alzheimer’s disease is a common form of dementia characterized by progressive deterioration of a patient’s cognitive abilities and memory resulting in executive dysfunction, behavioral disturbances, and impairment in ability to communicate and complete activities necessary for daily living [1] Alzheimer’s disease is the sixth leading cause of death in the United States and more than five million Americans are living with the disease [2]. Most individuals that have Alzheimer’s disease live depend on family members for assistance or total care. Alzheimer’s disease takes a devastating toll on caregivers. There are many factors that influence the perceived burden of caring for a relative or friend with Alzheimer’s disease, such as kinship ties, gender, psychological resources, and coping strategies [3].

This study used a quantitative, descriptive correlational research design. The purpose of this study was to examine the relationship between the perceived caregiver burdens of the primary, full-time, at-home caregiver with a family member with Alzheimer’s disease who participates in an adult day care center and caregivers of family members that did not attend an adult day care center. Research data were collected using the Caregiver Burden Inventory (CBI) and a researcher-developed demographic survey on a purposive sample of (N = 84) caregivers. The Neuman Systems Model (NSM) by Betty Neuman [4], provided the theoretical underpinnings of this study.

Findings of the study indicated no significant differences in the perceived caregiver burden regarding whether the caregiver takes care of the family member with Alzheimer’s disease 24 hours a day or has respite from care five days a week at an adult care center. Additionally, findings indicated the need to refine community and professional understanding of the challenges caregivers face, and provide valuable information regarding necessary improvements of services for caregivers of patients with Alzheimer’s disease.

Keywords

Alzheimer’s disease; Caregiver; Caregiver burden; Coping

Introduction

There are currently more than five million Americans living with Alzheimer’s disease (Alzheimer’s Association, 2016) [2]. Alzheimer’s disease is a common form of dementia characterized by the progressive deterioration of a individual’s cognitive abilities and memory resulting in executive dysfunction, behavioral disturbances, and impairment in ability to communicate and complete activities necessary for daily [1]. Most individuals that have Alzheimer’s disease depend on family members for assistance or total care. Primary caregivers are an integral aspect of the care of individuals with Alzheimer’s. Caregivers are essential because of the tremendous demands of caring for someone with Alzheimer’s disease. The successful treatment and rehabilitation of individuals’ with Alzheimer’s disease depends on caregivers who bear the burden of providing day-to-day care. However, the importance of caregivers is often neglected, ignored, treated as insignificant or regarded as an afterthought.

Edger and Lohuis, (2013) identified eighteen levels of care that patients with Alzheimer’s disease may need [5]. Of the eighteen levels, thirteen are eligible for long-term services. Some of the services require full assistance, some substantial assistance, some minimum assistance, and others basic assistance. Some of the caregiver’s responsibilities may include performing activities of daily living (ADL), preparing meals, and providing 24-hour supervision, attending to medical needs, and dealing with agitated behaviors [6]. These duties make caregiving very exhausting and render the caregiver susceptible to stress-related illnesses [7,8].

The adjustment from family to caregiver status may not be an easy because it not only causes stress and strain on the caregiver’s personal and professional relationships, but also creates anxiety, regret, and resentment [9]. As a result, many caregivers may suffer side effects from their work, including depression, a feeling of being burned out, and being burdened [9]. Thus, caregivers require an outlet to relieve pressure and stress while caring for others. The pressure to provide care can be overwhelming for the spouse, parent, siblings, or healthcare professionals. If caregivers lack the tools necessary to adequately care for their loved ones, negative behaviors can arise including abuse, neglect, or even death from the burden or strain [10]. It is imperative that the needs and concerns of the caregiver are not forgotten or neglected in the rush to provide greater comfort for the person with the illness. It is also necessary for the healthcare provider to address the concerns and needs of the caregiver so that the outcome of the patient’s care would be positive [10].

Alzheimer’s disease takes a devastating toll on caregivers. Nearly 60% of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high and 40% suffer from depression [11]. Researchers investigated the prevalence of anxiety and depression in caregivers of family members with Alzheimer’s disease in a cross-sectional study that enrolled 125 consecutive patients and their 125 responsible caregivers referred for evaluation to a Memory and Alzheimer’s Unit of the University of Malaga in Spain. Garcia-Alberca, et al. (2013) reported “more than half of caregivers experienced positive symptoms of anxiety and depression” [11].

While the proportion of Americans diagnosed with Alzheimer’s disease is increasing, and research on the effects of the disease on the family members of a person with Alzheimer’s disease is abundant, little is actually known about the coping mechanisms of the caregivers. This study examines some of the ways to measure burden by investigating how the caregivers interact with family members with Alzheimer’s disease as well as cope with exigencies presented in the physical, psycho-biological, emotional, social, and financial consequences of dementia.

Research Questions and Hypotheses

Research question 1

Is there a difference in the impact of caregiver burden on a caregiver’s physical health for those caregivers whose family members with Alzheimer’s disease attend an adult day care center and those whose family members with Alzheimer’s disease do not attend an adult day care center?

H₀: There is no difference in the impact of the caregivers’ physical health when patients with Alzheimer’s disease attend an adult day care center as compared to those who do not.

H₁: There is a difference in the impact of the caregivers’ physical health when patients with Alzheimer’s disease attend an adult day care center as compared to those who do not.

Research question 2

Is there a difference between the caregiver burden related to the psychological health of the caregiver of a family member with Alzheimer’s disease attending an adult day care center and the caregiver of the patient who does not attend an adult day care center?

H₀: There is no difference in the caregivers’ psychological health when the patients with Alzheimer’s disease attend an adult day care center as compared to those who do not.

H₂: There is a difference in the caregivers’ psychological health when the patients with Alzheimer’s disease attend an adult day care center as compared to those who do not.

Research question 3

Is there a difference in the caregiver’s financial burden when family members with Alzheimer’s disease attend an adult day care center and those who do not attend an adult day care center?

H₀: There is no difference in the financial burden of the caregivers of patients with Alzheimer’s disease attending an adult day care center as compared to those who do not attend an adult day care center.

H₃: There is a difference in the financial burden of the caregivers of patients with Alzheimer’s disease attending an adult day care as compared to those who do not attend an adult day care center.

Research question 4

Is there a difference in the impact of the caregiver burden-related variables (physical, psychological, financial) and kin closeness (spouse, adult children, and siblings) between caregivers of family members with Alzheimer’s disease who attend an adult day care center and caregivers whose patients with Alzheimer’s diseases do not?

H₀: There is no difference in the impact of the caregiver burden-related variables (physical, psychological, financial) and kin closeness (spouse, adult children, and siblings) between caregivers of patients with Alzheimer’s disease who attend an adult day care center as compared to those whose patients do not attend an adult day care center.

H₄: There is a difference in the impact of the caregiver burden related variables (physical, psychological, financial) and kin closeness (spouse, adult children, and siblings) between caregivers of patients with Alzheimer’s disease who attend an adult day care center as compared to those whose patients do not attend an adult day care center.

Materials and Methods

Research design

A quantitative, descriptive correlational design was utilized in this study.

Sample/setting

A purposive sampling technique was employed to recruit participants for the study. The study targeted a population of family caregivers to patients with Alzheimer’s disease who lived at home in one state in the Southeastern region of the United States. The sample size was determined by power analysis and suggested a sample size of 84 participants. This study was guided by the following inclusion criteria: (a) African-American, Caucasian, and Hispanic caregiver family members of a patient with Alzheimer’s disease by self-report, (b) a resident of surrounding metropolitan Atlanta counties, (c) an individual between 52 and 82 years of age, (d) English-speaking, (e) a family caregiver providing care in the home setting, (f) Alzheimer’s disease participants attending an Adult Day care center, and (g) Alzheimer’s disease family members that do not attend Adult Day Care and live at home in the community. The investigator used flyers and presentations to recruit potential participants. Eighty-four participants met the inclusion criteria and completed the study.

Ethics and human subject’s protection

Approval to conduct the study was obtained from the Institutional Review Board (IRB) at Hampton University.

Data collection

The 24-item Caregiver Burden Inventory (CBI) and a 19-item researcher-developed demographic survey were used to collect the research data.

Results

Descriptive statistics

The descriptive statistics indicated the model daycare caregiver was a 59-year-old African American female who was married an average of 24 years, was a college graduate, and worked full-time. The model non-daycare caregiver was a 60-year-old African American female who was married an average of 27 years, had completed a post-graduate degree, and worked full-time. Household income was described as comfortable and estimated at $50,000 a year or more for both.

The major employment status in both groups was either working full-time or retired. Two-thirds of the daycare caregivers worked full-time and one third were retired, compared to approximately half of the non-daycare caregivers who worked full-time and the other half was retired. The model daycare caregiver had additional help with caregiving from family members. The non-daycare caregiver did not have additional help with caregiving from family members. Care was provided seven days a week. The age of the patient was in the range of 85-94 years old. For kin closeness, the caregiver was the son or daughter of the patient for at least 50% of the patients.

Results for research question 1

Results of the t-test showed there is a non-significant difference in the impact of the caregivers’ physical health, t(82) = 0.65, p = .52. The null hypothesis was retained and the alternative hypothesis was rejected. The mean difference in physical burden between the daycare and non-daycare caregivers was 0.15, although the 95% confidence interval estimated the true difference between the groups at nearly a point, 95% CI[-0.31, 0.61].

Figure 1: Physical Burden SS means by care group.

Figure 1 illustrates the Physical Burden SS means by care group. It shows that the means were close in value. Daycare caregivers said that the items that measured physical burden were “often descriptive” of them, M = 3.26, SD = 1.05. Non-daycare caregivers said that the items that measured physical burden were “often” to “very descriptive” of them, M = 3.41, SD = 1.07.

Results for research question 2

Four of the five CBI domains measured psychological burdens (i.e., time, development, social, and emotional).

Figure 2: Means for individual psychological burdens by type of caregiver.

Figure 2 illustrates the means for all four psychological domains by type of caregiver as shown in Table 1, for corresponding descriptive statistics). Results show the order of psychological burdens from most to least descriptive of caregivers was time, development, social, and emotional. Caregivers said time burdens were often descriptive to very descriptive on average, and developmental burdens were often descriptive on average. Caregivers said feeling a social burden was “descriptive” to “often descriptive”. The least indicated burden was the emotional burden. Caregivers said, on average, feelings of emotional burden were sometimes descriptive of them.

A comparison of the means for the two caregiver groups showed the group means for each domain were similar [Table 1]. The mean difference between the two groups was about 0.20 in all four domains although the extent to which each domain described them differed. Both types of caregivers said time burden was “often” to “very descriptive” of their situation. Both types of caregivers said developmental burdens were “often descriptive”. Both types of caregivers said social burdens were “descriptive” to “often descriptive” of them. However, in contrast, both types of caregivers said emotional burden was “not at all descriptive” to “somewhat descriptive,” despite providing care seven days a week to people with Alzheimer’s disease.

Table 1: Descriptive Statistics for CBI Psychological Burden Domains.

	Group	M	SD
Time Burden SS	Non-daycare Caregivers	3.62	0.84
	Daycare Caregivers	3.46	0.76
	Total	3.54	0.81
Developmental Burden SS	Non-daycare Caregivers	3.16	1.21
	Daycare Caregivers	2.95	1.10
	Total	3.05	1.16
Social Burden SS	Non-daycare Caregivers	2.64	1.24
	Daycare Caregivers	2.41	1.11
	Total	2.53	1.18
Emotional Burden SS	Non-daycare Caregivers	0.87	1.21
	Daycare Caregivers	0.63	0.78
	Total	0.75	1.02

Because of the conceptual similarity between the CBI psychological domains (Time Burden SS, Developmental Burden SS, Social Burden SS, and Emotional Burden SS) and the large significant correlations among them (see Table 2), Research Question 2 was addressed by running a MANOVA test. A MANOVA test is a multivariate test (versus a univariate ANOVA test) because it simultaneously examines two or more dependent variables that are related to one another. In this study, the psychological caregiver burden domains from the CBI are conceptually related, and, as Table 2 shows, empirically related. MANOVA results may be more informative than results from a series of univariate ANOVA tests because MANOVA recognizes intercorrelations among the dependent variables. That is, it treats the multiple dependent variables in combination by creating a new dependent variable. The new dependent variable is a multivariate dependent variable, which is the linear combination of the original dependent variables that maximizes group differences.

To address Research Question 2, four CBI psychological variables (Time Burden SS, Developmental Burden SS, Social Burden SS, and Emotional Burden SS) were used to create the multivariate dependent variable called Psychological Health. The independent variable was care group with two levels: (daycare caregivers and non-daycare caregivers).

MANOVA tests both multivariate and univariate hypotheses. The multivariate hypotheses are tested first. According to if the multivariate analysis reveals no significance, the convention is to stop the analysis at that point and conclude that the independent variable (i.e. care group) did not have a significant effect on the dependent variable (i.e. Psychological Burden). However, both the multivariate and univariate results are presented below for informational purposes.

Results of the multivariate portion of the MANOVA showed there was no significant difference in the caregivers’ psychological health when the family member with Alzheimer’s disease attended an adult day care center as compared to family members who did not, Wilks Lambda = .98, F(4, 79) = 0.44, p = .78. The multivariate hypothesis was retained. The effect of type of caregiver was small, partial eta² = .02. Results of the univariate tests are shown on Table 2.

Table 2: MANOVA Univariate Results for Psychological Domains by Care Group.

Source	Burden SS	Sum of Squares	df	Mean Square	F	p	Partial eta²
Caregiver Group	Time Developmental	0.51 0.88	1 1	0.51 0.88	0.79 0.65	.37 .42	.01 .01
	Social	1.14	1	1.14	0.82	.36	.01
	Emotional	1.23	1	1.23	1.19	.27	.01
Error	Time	53.67	82	0.65
	Developmental	110.14	82	1.34
	Social	114.33	82	1.39
	Emotional	85.19	82	1.03
Total	Time	1109.96	84
	Developmental	897.32	84
	Social	653.56	84
	Emotional	134.28	84

The null hypothesis for each domain (the two caregiver groups did not differ on that domain) was retained for all four domains. The p values further verified that when each of the four psychological domains was examined separately for differences between daycare caregivers and non-daycare caregivers, none of the domains differed significantly. Results of the Box’s test showed that the data met the assumption of the equality of covariance of matrices, Box’s M = 21.62, F(10, 32146) = 2.05, p = .03.

Results for research question 3

There were two measures of financial burden collected on the survey. One measure was a categorization of the adequacy of the household finances, measured as three levels of comfort (i.e., income was comfortable, income was just enough to make ends meet, and income was not enough to make ends meet).

Figure 3: Number of caregivers by adequacy of household income and caregiver group.

Figure 3 illustrates the relative distribution of caregivers by income adequacy categories. The majority (83%) of non-daycare caregivers were comfortable. Six (14%) said their income was just enough to make ends meet. One (2%) caregiver said household income was not enough to make ends meet. Among daycare caregivers, the majority also said they were financially comfortable, 69%. The remaining 13 (31%) caregivers said their income was just enough to make ends meet. Because both the income adequacy variable and the type of caregiver variable were categorical or nominal in nature, Research Question 3 was addressed with a chi-square test of independence.

Results of the chi-square test revealed a non-significant association between the financial burden (measured as adequacy of income) and type of caregiver, X² (2, 84) = 4.14, p = .13. The null hypothesis was retained and the research hypothesis was rejected.

The other measure of financial burden collected on the survey was a categorization of annual household income, measured as three levels (i.e., < $20,000/yr., < $50,000/yr., and $50,000/yr. or more).

Figure 4: Number of caregivers by household income category and caregiver group.

Figure 4 illustrates numbers of caregivers by household income category by caregiver group. It shows that the proportions of caregivers were similar within each income category. The majority of daycare caregivers, 69%, and of non-daycare caregivers, 79%, had a household income of $50,000 a year or more. Smaller proportions of daycare caregivers (31%), and of non-daycare caregivers (19%) had a household income of less than $50,000 a year. Only 2% of the non-daycare caregivers reported income at less than $20,000 a year.

Results for research question 4

Research Question 4 identifies two potential influences that were used as independent variables to answer this question. One was kin closeness, the caregiver’s relationship with the patient. The hypothesis was that caregiver burden was influenced by the caregiver’s relationship with the patient. To have enough caregivers in each group and approximately equal-sized groups, the original variable was recoded to create three comparison groups: spouse of patient (8 non-daycare caregivers, 9 daycare caregivers); son/daughter of patient (21 non-daycare caregivers, 23 daycare caregivers); or other relatives of patient (in-laws, friends); (13 non-daycare caregivers, 10 daycare caregivers). The other independent variable was type of caregiver (daycare caregiver, non-daycare caregiver).

For the remaining variables included in Research Question 4, the measures were as follows: a) Physical burden was measured with the Physical Burden SS, and b) Psychological burden was measured with a Psychological Burden SS variable created by taking the means of the four psychological burden variables (time, developmental, social, and emotional). This is a different measure than the Psychological Health multivariate dependent variable generated by the MANOVA for Research Question 2 (which was the linear combination, i.e., regression, of the four variables). The Psychological Burden SS variable used for Research Question 4 was the mean of all four psychological burdens for each caregiver. There were two choices for the ‘financial’ variable: adequacy of income (see Figure 3), or income category (see Figure 4). Which financial variable to use depended on the correlations with physical and psychological burden data.

The next step was to generate and inspect the correlations between potential dependent variables (Physical Burden SS, Psychological Burden SS, adequacy of income, and household income category). This was to determine if correlations indicated or contraindicated MANOVA for testing Research Question 4.

Table 3: Pearson Correlation Matrix of Dependent Variables for Research Question 4.

	V1	V2	V3
V1 Physical Burden SS	1
V2 Psychological Burden	.78^**	1
V3 Adequacy of Household Income	.19	.18	1
V4 Household Income Categories	-.20	-.23^*	-.62^**

Table 3 shows physical burden correlated directly and significantly with psychological burden but not with adequacy of household income or household income categories. Psychological burden did not correlate with adequacy of household income but was significantly, though weakly, correlated with household income categories. These results suggested that the financial variable, household income, was the more adequate of the two financial variables to use to answer Research Question 4. Adequacy of household income only correlated significantly with household income categories, contra-indicating it for MANOVA.

Note: V = variable. SS = summated scale. Correlations among daycare caregivers are shown above the diagonal lines of 1’s. Correlations among non-daycare caregivers are shown below the diagonal lines of 1’s. *Correlation is significant at the 0.05 level (2tailed). **Correlation is significant at the 0.01 level (2-tailed).

Therefore, Research Question 4 was addressed with a 2x3 MANOVA. One independent variable was care group (daycare caregivers and non-daycare caregivers). The other independent variable was kin closeness (spouse, son/daughter, and other relative). The multivariate dependent variable was made up of Physical Burden SS, Psychological Burden SS and household income categories. Regardless of the results of multivariate portion, both the multivariate and univariate results are presented below for informational purposes.

Because there were two independent variables, the multivariate hypotheses tested one interaction hypothesis and two main effect hypotheses. The multivariate interaction hypotheses are:

Results of the multivariate portion of the MANOVA are listed for the three null hypotheses in Table 4. The ‘Caregiver x Kin’ statistics show that there was no significant difference in the physical, psychological, and financial caregiver burden due to an interaction between kin closeness and type of caregiver. The multivariate interaction null hypothesis was retained and multivariate research hypothesis was rejected. Results of the

Box’s test showed the data met the assumption of the equality of covariance of matrices, Box’s M = 26.33, F(24, 4004) = 0.95, p = .53.

Discussion

The focus of the study was on the burdens experienced by caregivers of family members with Alzheimer’s disease and the resulting consequences, physical, emotional, health, and financial that the diagnosis places on the patients’ caregivers. This study was concerned with patients with Alzheimer’s disease and the burden the disease has on the quality of life of family and non-family persons serving as caregivers. Caring for chronically ill persons presents specific burdens defined as stressors on caregivers. The three types of burdens are perceived burden, subjective burden, and objective burden as measured by the quantity and degree of burden associated with Alzheimer’s disease.

The results of this study do not support the decrease of caregiver burden as indicated by the findings of multiple studies over past decades [12]. Several studies discussed in the meta-analysis by [12] compared perceived burdens in current living arrangements (home, group homes, and hospitals). The majority of the analyzed studies only researched the burden of at-home caregiving and did not use the CBI.

Chen, et al. used the CBI to measure the effect of a coping strategy intervention on the caregiver burden of caregivers of patients with dementia [13]. The intervention groups mean caregiver burden score decreased by 7.2 points and the control groups’ mean score increased by 2.3 points. Ornstein also used the CBI to measure caregiver burden [14]. The study used a multicomponent intervention providing support for the caregiver and activities and home visits by primary care providers for the patients. All the patients were cared for at home. The caregiver burden was decreased due to the interventions directly related to caregiver needs [14]. Because the day care in this study was provided outside the home rather than within the caregivers’ places of residence could be the reason the burden was not perceived as decreased.

Conclusion

The results of this quantitative, descriptive correlational study add to the body of knowledge on Alzheimer’s disease and caregiver burden in the African American population. A limitation to the study was that the data that were collected from African American caregivers of African American patients with the Alzheimer’s disease who resided in the Southeastern region of the United States. All adult daycare center patients with Alzheimer’s disease attended the same adult day care center. It cannot be assumed the data or results would reflect individuals of other races or ethnicities, residing in other locations, or attending other adult day care centers; and therefore, is not generalizable.

Nurses should be aware of the complexity of the needs of the African American caregivers with a family member with Alzheimer’s disease. Also, nurses play a critical role in assessing the needs of the caregiver and collaborating with physicians and other members of multidisciplinary teams that provide interventions to support the caregiver.

Further research is warranted to examine and gain a greater understanding of the factors that predict health in families of patients with Alzheimer’s disease and to examine the challenges brought upon by the burdens faced by the caregivers. Through understanding and identifying risk factors, this study attempted to expand the understanding of clients, family, and professionals who may be affected by the burdens of families who experience Alzheimer’s disease and those who have assumed caregiving responsibilities. Research studies are needed to conduct studies on Alzheimer’s disease caregivers and patients outside of the community resources networks.

Studies are needed to determine the impact of full-time employment on caregivers; the burden on caregivers who are caught between the demands of child rearing in addition to providing care to their aging parents; and the lack of socialization and its influence on the well-being of informal caregivers. Additional studies are also needed to measure the effectiveness of nursing interventions on caregivers.

Acknowledgements

Patrena Cody, Ph.D., FNP-BC, MSN

Arlene J. Jackson Montgomery, Ph.D., R.N.

Frances C. Gray, D.N.P., R.N., C.C.M., Q.M.C.

Sherri Saunders-Goldson, D.N.P., R.N., W.H.N.P.-B.C., F.A.A.N.P.

Spencer R. Baker, Ph.D., C.C.F.C., N.C.C.

Tangela N. Hales, Ph.D., RN

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