Current Topics in Care

The Impact of Living Arrangements on Dementia Caregiver’s Sleep Quality

American Journal of Alzheimer’s Disease & Other Dementias® 2015, Vol. 30(4) 352-359 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514559828 aja.sagepub.com

Cherie Simpson, PhD1, and Patricia Carter, PhD1

Abstract In the United States half of the 15 million informal caregivers of persons with Alzheimer’s disease or a related dementia (PWDs) do not live with the PWD. This paper compares the sleep quality and health of 59 community-dwelling caregivers living with the PWD and 21 living apart from the PWD. Variables of interest were caregiving experience (hours caregiving, problematic behaviors of the PWD, caregivers’ perception of dementia severity), sleep quality, and health (perceived health, stress, and depressive symptoms). Parametric unpaired t tests were used to calculate the differences between key variables. Multiple regression models were constructed, controlling for age, gender, behavior index, and dementia severity to examine the variance explained by living arrangements on sleep quality and health. Caregivers living apart from the PWD experienced the same level of poor sleep quality as did caregivers living with the PWD. The living arrangements of the caregiver did not make a unique contribution to sleep quality or health variables except for reports of unhealthy days. Given the importance of good quality sleep for health, the findings highlight the importance of evaluating caregivers living apart from the PWD for sleep problems with the same level of concern as one would have for those living with the PWD. Keywords dementia, caregivers, living arrangements, sleep quality, mental health

Eighty percent of all care for persons with Alzheimer’s or related dementias (PWDs) is provided by unpaid caregivers, most of whom are family members caring for the PWD in the home, and 30% of all caregivers are caring for 2 generations, adult children caring for their parents while their own children still live with them.1,2 Living arrangements of the family caregiver–PWD dyad vary, with about half of the caregivers living in the home with the PWD while half do not. The latter consists of long-distance caregivers (more than an hour away1) who do not have easy access to the PWDs as well as caregivers living in close proximity accessible for supportive and direct care on a daily basis. For this study, the noncohabitating, yet selfidentified primary caregivers are called distal caregivers. A few studies of caregivers providing long-distance caregiving3,4 have described challenges of communication, but there has been less focus on the distal caregiver. These distal caregivers represent a subpopulation of caregivers that may experience the stress of caregiving differently given living arrangements, yet research describing the experience of distal caregiving is limited. Although living with the PWD is a predictor of caregiver burden,5 some research supports differences in the caregiving experience based on residential status. Cox and Albis,6 for example, have provided evidence that emotional burdens differ depending on residential status. Noncohabitating (distal) caregivers were more likely to report constantly being worried or stressed; caregivers living with the PWD reported being

overwhelmed. Other caregiving characteristics that differed between distal caregivers and cohabitating caregivers included shorter duration of caregiving role and fewer hours of care per week for distal caregivers; in addition, distal caregivers were more likely to be employed while providing care. Caregivers living with the PWDs were more likely to report worse health, loss of independence, and loss of social life in comparison with distal caregivers.6 Evidence supporting a difference in caregiving experience based on living arrangements and race has been presented by Siegler et al7 who found that white distal caregivers experienced more depression than white caregivers living with the PWD, whereas black caregivers reported more depression when living with the PWD. These studies provide some evidence that the caregiving experience is different for distal caregivers as opposed to caregivers living with the PWD; these 2 groups experience different emotional stressors. The effect on sleep, an important health habit, was not examined in these studies however. The literature provides abundant evidence of the impact of chronic poor sleep on physical and emotional heath as well 1

School of Nursing, University of Texas at Austin, Austin, TX, USA

Corresponding Author: Cherie Simpson, PhD, School of Nursing, University of Texas at Austin, 1700 Red River, D0100, Austin, TX 78701, USA. Email: [email protected]

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as quality of life.8-12 Caregivers experience poorer subjective sleep than noncaregivers do, with poorer daytime function as a result.13 However, much of the research on sleep quality in informal caregivers has been limited to spouses or has included only those living with the PWD. In a recent review of 18 studies, 13 were spousal or cohabitating caregivers.14 The remaining 5 studies had no inclusion or exclusion criteria addressing living arrangements but instead required certain levels of caregiving. None of the 5 studies controlled for living arrangements. Living arrangements were not considered a confounding variable or risk factor for sleep disturbance. However, a secondary analysis of the data from the Study of Osteoporotic Fractures did identify living with the care recipient as a high-stress caregiving situation.15 This was a study of informal women caregivers older than 65 years who were providing some assistance in activities of daily living or instrumental activities of daily living for care recipients who physically, cognitively, or psychologically could not perform certain tasks (28% had dementia). Caregivers living with the care recipients had a higher risk of sleep disturbance than did distal caregivers, supporting the idea that differences in sleep quality are associated with the living arrangements of the caregiver–PWD dyad. However, another study of 80 caregivers16 reported that living arrangements did not separate good sleepers from poor sleepers. The goal of the present study is to examine similarities and differences between distal caregivers and caregivers living with the PWD further, in order to inform a better understanding of the distal caregiving experience. Our theoretical framework is provided by Pearlin’s stress process model,17 in which contextual factors such as living arrangements influence how the caregiver experiences stressors such as the severity of dementia or the PWD’s problematic behaviors. Primary stressors lead to secondary stressors—in the present study, to poor sleep quality and ultimately to poor health outcomes.

Method This is a secondary analysis of a nonexperimental, crosssectional study that described the relationship between the behavioral and psychiatric symptoms of PWDs and caregivers’ sleep.16 In the present exploration, the relationships between living arrangements and caregiver sleep quality and health outcomes (perceived health, stress, and depressive symptoms) were compared while considering confounding variables of caregiving experience (hours per week caregiving, problematic behaviors of the PWD, and caregivers’ perception of dementia severity).

Sample Caregivers of community-dwelling PWDs in the metropolitan area of Austin, Texas, were recruited as a convenience sample, using flyers and word of mouth in clinic practices and community outreach programs. Participants were at least 21 years of age, self-identified as the primary caregiver of a PWD, and able

to communicate in English; all consented freely to participate. Caregivers were excluded if they had untreated obstructive sleep apnea, a medical condition that could affect nighttime sleep and daytime function. Caregivers were also excluded if they had been diagnosed with a major depressive disorder prior to caregiving. For our primary study,16 a power analysis was conducted using Nquery Advisor software (Statistical Solutions, Ltd.) to determine an appropriate sample size.18 The relationship between sleep quality and mastery as reported by Carter and Acton19 was used to calculate the need for a sample size of 75 to provide power at 80% with an a of .05. A total of 80 caregivers were enrolled; 59 were living with the PWD and 21 were living apart but within the same city.

Data Collection Approval for all study procedures was granted by a University institutional review board. Data were collected via interview by a single interviewer who was an advanced practice nurse, at a time and place convenient for the caregiver who also allowed for supervision of the PWD. Interviews most often occurred in caregivers’ homes but would also include respite program locations or coffee shops. Instruments used for data collection included the following: Caregiver demographics: Standard demographics (eg, age, race/ethnic background, education level, socioeconomic status, and work status) and caregiver information (eg, relationship with PWD, amount of hours spent caregiving per day, years of caregiving, and perceived health status) were collected from the caregivers. Caregivers also reported information about the PWD (eg, age, diagnosis, time since diagnosis, education level, and comorbidities). Problematic behavior of persons with Alzheimer’s or related dementia: The PWDs’ behavioral and psychological symptoms common in dementia (BPSD) were assessed using a Likert-type scale for frequency of occurrence of behaviors over the last 30 days, modeled from the Neuropsychiatric Inventory (NPI).20 The 9 items were worded like the NPI stems and included agitation/aggression, apathy, dysphoria or depression, anxiety, inappropriate behaviors, psychoses such as hallucinations or paranoia, changes in nighttime sleep, daytime napping, and wandering. Wandering is not specifically included in the NPI but is a symptom that can be distressing to caregivers.21 Frequency of occurrence was scored as not at all ¼ 0, rarely ¼ 1, frequently ¼ 2, and daily ¼ 3. The frequency scores were summed to provide an index called ‘‘behaviors.’’ Higher scores indicated more frequent occurrence of BPSD. The a for behavior index was .63. Dementia severity: Cognitive and functional status of PWD as perceived by the caregiver was measured using the Dementia Severity Rating Scale.22 This is a measure of the caregiver’s assessment of the PWD’s functioning, with 12 items covering 11 domains of cognition (memory, orientation, judgment, social interactions, home

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American Journal of Alzheimer’s Disease & Other Dementias® 30(4)

354 activities, personal care, speech/language, recognition, feeding, incontinence, and mobility). Each item was scored on a Likert-type scale. For each domain, scores range from 0 ¼ normal function to a high score of 3 to 7 depending on the domain. Total scores range from 0 to 51, with higher scores indicating less functionality. Convergent validity tests21 showed correlations with the Mini-Mental State Examination, r ¼ .77, and with the Consortium to Establish a Registry for Alzheimer’s Disease Neuropsychological Assessment Battery, r ¼ .73. The as for the present study were .94 consistently. Caregiver’s sleep quality: The original Pittsburgh Sleep Quality Index (PSQI)23 consists of 19 items used to calculate scores on 7 subscales (sleep quality, sleep latency or time needed to fall asleep, sleep duration, sleep medication use, sleep efficiency calculated as percentage of time asleep while in bed, sleep disturbances, and daytime dysfunction). The subscale of sleep disturbance includes a question in the original PSQI of ‘‘other reasons’’ for sleep disturbances with the opportunity to write in other reasons not listed. For this study, ‘‘other reasons’’ indicated whether the caregiver’s sleep had been disturbed by the PWD. Possible reasons (eg, help with toileting) were recorded. Subscales were calculated following PSQI guidelines, using the combined scores of the 7 subscales to produce an overall global sleep quality score for the analysis. A global score greater than 5 indicates poor sleepers and has been reported23 to have a diagnostic sensitivity of 89.6% and a specificity of 86.5%. Cronbach’s a has ranged from .61 to .73 in previous studies24,25 and was .70 in the present study. Caregiver’s perceived stress: Perceived stress was measured with the Perceived Stress Scale (PSS),26 a 14-item instrument designed to measure the degree to which situations in one’s life are felt to have been unpredictable, uncontrollable, and overloading over the past week. The items were rated on a 5-point Likert-type scale ranging from 1 ¼ never to 5 ¼ very often. Higher scores equate to higher stress. Cohen et al26 reported coefficient a reliability of .84 to .85 in 3 validation studies, and in the present study the as ranged from .87 to .89. Caregiver depressive symptoms: Caregiver depressive symptoms were measured using the Center for Epidemiological Studies Depression Scale (CES-D). The CES-D is a 20-item self-report instrument that assesses the frequency of depressive symptoms experienced over the past week. Scores of 16 or higher indicate risk of clinical depression. Criterion validity has been studied in a population of community-dwelling adults aged 55 to 85 years27 and found to have a sensitivity of 100% when the cutoff was 16, with a specificity of 88% and a positive predictive value of 13.2%. In the present study, the as ranged from .87 to .89. Caregiver self-report of health status: The Centers for Disease Control and Prevention’s (CDC’s) health-related quality-of-life measure28 was used to assess the

caregivers’ perception of their health. A single item asking how the caregiver rates his or her overall health, measured on a Likert-type scale from 0 ¼ excellent to 4 ¼ poor, is a representation of past, present, and anticipated health. An index of unhealthy days that explains recent health was calculated by combining the number of days on which the caregiver reported that his or her physical or mental health was not good. For instance, if the caregiver reported 2 days on which his or her physical health was not good and 6 days on which his or her mental health was not good, the unhealthy days index score would be 8 of a possible 30. The final question assesses the number of days on which the caregiver was unable to perform normal activities because of experiencing unhealthy days. These core questions of the Behavioral Risk Factor Surveillance System conducted by the CDC have been tested and found valid in both the general community and older adult samples.29

Analysis The data were analyzed using SPSS 19 software. Items within the instruments that needed to be reverse coded were transformed into a different variable. There were no missing data. Descriptive statistics were performed, and frequency distributions were graphed. For caregiver characteristics and caregiving factors, Welch’s unpaired t test (to accommodate the uneven sample size) was used to calculate the continuous variables, and chi-square was used for the categorical variable. Bonferroni adjustments were made for the multiple univariate analysis of caregiver characteristics (age, gender, race, ethnicity, work status, income, and roles) with a significance level of P ¼ .007 (.05/7). For the caregiving experience (PWD age, length of months caregiving, hours per week caregiving, behavior index, and dementia severity), the Bonferroni adjustment was .05/5 ¼ .01. The main variables of sleep quality (PSQI, total hours of sleep, and percentage of sleep) as well as overall health, health index, and CES-D and PSS scores were normally distributed, and Welch’s unpaired t tests were therefore used to calculate the differences in these variables between caregivers living with the PWD and those living distally. The caregivers’ reports of sleep latency, physical health, and mental health days were skewed, so the nonparametric Mann-Whitney U test was used. To further examine the importance of living arrangements on the outcome variables of sleep quality and health (depression, perceived stress, overall health, and unhealthy days), a multiple regression model was constructed that controlled for other contextual factors (caregiver age, gender, and relationship with PWD), roles (caregiving hours and the status of caring for children and total roles), and primary stressors (behavior index and dementia severity).

Results A comparison of demographic and caregiving characteristics for those living with and those living distal to the PWD is

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Table 1. Comparison of Demographic and Caregiving Factors of Cohabitating Caregivers and Distal Caregivers of the PWD.a

Age, years Gender, % Female Race, % White Black Ethnicity, % Hispanic Not Hispanic Work status, % Full time Part time Not working Retired Income, % More than enough Just enough Not enough Roles, % Working Caring for children Volunteer Total rolesb Relationship Spouse or partner Adult child Other Care recipient’s age Caregiving length, months Caregiving hours per week Behavior index Dementia Severity Scale Score

Cohabitating Caregivers (n ¼ 59)

Distal Caregivers (n ¼ 21)

65.08 (12.87)

58.14 (11.36)

89.80

85.70

89.80 10.20

90.50 9.50

11.90 88.10

19 81

22.00 16.90 10.20 50.80

23.80 23.80 28.60 23.80

52.50 42.40 5.10

66.70 33.35

45.80 18.60 49.20 1.14

47.60 33.30 38.10 1.29

38 15 6 77.97 51.56 (36.42) 118.44 (60.0) 9.29 (4.5) 24.31 (11.23)

2 18 1 83.05 60.05 43.76 11.29 28.43

Table 2. Comparison of the Sleep Experience and Health Outcomes of Cohabitating Caregivers and Distal Caregivers.a

PSQI global scores Percentage of sleep Sleep latency Total sleep hours Perceives stress Scale Depression (CESD score) Overall health rating Days physical health was not good Days mental health was not good Unhealthy days index Days poor health (mental or physical) stopped activities

Cohabitating Caregivers (n ¼ 59)

Distal Caregivers (n ¼ 21)

7.41 (3.35) 80.19 (13.22) 21.89 (23.88) 6.36 (1.30) 37.80 (9.59) 13.41 (9.57) 1.41 (1.04) 3.52 (7.02) 9.15 (10.79) 11.85 (11.2) 2.27 (5.05)

7.81 (4.46) 81.25 (15.23) 24.09 (28.04) 6.4 (1.67) 39.10 (9.02) 11.62 (8.65) 1.43 (1.08) 8.09 (10.89) 16.76 (12.96)b 20 (11.7)c 5.09 (9.04)

Abbreviations: CESD, Center for Epidemiologic Studies Depression; PSQI, Pittsburgh Sleep Quality Index. a Means (and standard deviations). b Significant difference P < .05 level. c Significant difference P ¼ .009.

(40.02) (46.29)c (4.9) (10.86)

Abbreviation: PWD, person with dementia. a Means (and standard deviation) or percentages. b Total roles refer to the total number of roles the caregiver participates in besides caregiving and included caring for children, working, and volunteering. c Significant difference at

The Impact of Living Arrangements on Dementia Caregivers' Sleep Quality.

In the United States half of the 15 million informal caregivers of persons with Alzheimer's disease or a related dementia (PWDs) do not live with the ...
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