A Test of the Perseverative Cognition Hypothesis Using Hair Cortisol in a Sample of Dementia Caregivers and Non-Caregiver Contro

A Test of the Perseverative Cognition Hypothesis Using Hair Cortisol in a Sample of

Dementia Caregivers and Non-Caregiver Controls

A dissertation presented to

the faculty of

the College of Arts and Sciences of Ohio University

In partial fulfillment

of the requirements for the degree

Doctor of Philosophy

William Alexander Woody

August 2017

This dissertation titled

A Test of the Perseverative Cognition Hypothesis Using Hair Cortisol in a Sample of

Dementia Caregivers and Non-Caregiver Controls

WILLIAM ALEXANDER WOODY

has been approved for

the Department of Psychology

and the College of Arts and Sciences by

Peggy M. Zoccola

Associate Professor of Psychology

Robert Frank

Dean, College of Arts and Sciences 3

ABSTRACT

WOODY, WILLIAM ALEXANDER, M.S., August 2017, Experimental Psychology

A Test of the Perseverative Cognition Hypothesis Using Hair Cortisol in a Sample of

Dementia Caregivers and Non-Caregiver Controls

Director of Dissertation: Peggy M. Zoccola

The Perseverative Cognition Hypothesis suggests that perseverating (i.e., thinking

repetitively) on a stressor, especially a chronic stressor, can keep the physiological stress

systems (e.g., endocrine) activated and eventually lead to disease (Brosschot, Gerin, &

Thayer, 2006). However, to date, evidence for this idea has largely come from samples of

young, healthy adults experiencing acute stressors in laboratory settings. Thus, a sample of dementia caregivers’ (n = 29) and controls’ (n = 47) self-reported stress over the past month was collected. Participants also provided a hair sample, if able (n = 59), to

replicate prior work linking greater stress exposure to higher cortisol output and to test

the predictions of the Perseverative Cognition Hypothesis in a sample of older adults

experiencing a chronic stressor with a measure of long-term physiological stress system

activation. The proximal cm of hair was used to calculate hair cortisol, which indicated

cortisol output over the past month. Contrary to predictions, caregivers had lower hair

cortisol than controls and greater perceived stress was associated with lower hair cortisol.

There was weak support for the Perseverative Cognition Hypothesis. These findings may indicate how the stress of caregiving affects the body and may help to provide boundary conditions for when perseverative cognition has long-term effects on physiological outcomes. 4

ACKNOWLEDGMENTS

I would like to acknowledge my advisor, Dr. Peggy Zoccola, my dissertation committee members, Dr. Christopher France, Dr. Julie Suhr, Dr. Ryan Johnson, and Dr.

Gillian Ice, and the Ohio University Psychology Department. 5

TABLE OF CONTENTS

Page

Abstract ...... 3 Acknowledgments...... 4 List of Tables ...... 7 List of Figures ...... 8 Introduction ...... 9 Methods...... 14 Participants ...... 14 Procedure ...... 14 Measures ...... 15 Hair Cortisol Collection ...... 15 Rumination ...... 16 Perceived Stress ...... 17 Descriptive Measures and Covariates ...... 17 Demographics ...... 17 Depression ...... 17 Anxiety ...... 17 Physical Health ...... 18 Hair Characteristics ...... 18 Other Measures ...... 19 Statistical Analyses ...... 23 Results ...... 24 Caregiver Hypotheses ...... 24 Perceived Stress Hypotheses ...... 24 Alternative Explanations and Moderated Effects ...... 27 Discussion ...... 29 References ...... 39 Appendix A: Recruitment Materials ...... 50 Appendix B: Consent ...... 52 6

Appendix C: Cognitive Measures and Semistructured Interview ...... 56 Appendix D: Self-report Measures ...... 59 Appendix E: Supplemental Table ...... 68

LIST OF TABLES

Page

Table 1: Demographics ...... 19

Table 2: Correlations between measures of interest and covariates……………………21

Table 3: Correlations between measures of interest and caregiver characteristics…….22

Supplemental Table 1: Male and female caregiver characteristics…………………… 68 8

LIST OF FIGURES

Page

Figure 1: Stress and hair cortisol scatterplot ...... 21

Figure 2: Simple slopes for perceived stress by rumination interaction……….……….25 9

INTRODUCTION

According to the National Alliance for Caregiving and AARP (2009), an estimated 36.5 million households (31.2% of all households) in the United States had at least one unpaid family caregiver in 2009. Of these, 34.3 million household members

(29.4% of all households) were providing care for at least one adult, and 22% of these caregivers indicated that their care recipient suffered from Alzheimer’s disease or dementia. Caregiving duties tend to be long-term commitments, with 79% of caregivers at large indicating that they provided care for 6 months or more. Additionally, results from a nationally representative sample revealed that caregivers for people with dementia experienced greater stress in the form of increased time demands, emotional strain, and physical strain compared to caregivers for people without dementia (Ory, Hoffmann,

Yee, Tennstedt, & Schulz, 1999). Thus, relative to non-caregivers and to non-dementia caregivers, dementia caregivers may be subjected to higher levels or perceptions of stress.

In addition to reductions in quality of life (Ory et al., 1999), caregiving with a high stress burden (e.g., dementia caregiving) is associated with a 23% higher risk of stroke (Haley,

Roth, Howard, & Safford, 2010), 63% higher risk of all-cause mortality (Schulz &

Beach, 1999), and 55% increased rate of mortality (Perkins et al., 2013)—conditions that may be precipitated or exacerbated by stress. Caregiving, and specifically chronic stress arising from dementia-related caregiving duties, may affect millions of Americans’ physical and mental health.

One physiological consequence of stress exposure, such as dementia caregiving, is the release of the hormone cortisol. Cortisol is the end-product of the hypothalamic- 10 pituitary adrenal (HPA) axis, which is activated in response to ongoing, uncontrollable situations where loss is likely, as in caregiving. As such, cortisol is often used as a measure of the physiological stress response (Miller, Chen, & Zhou, 2007). In addition to mobilizing energy to fuel the body’s response to stressors, cortisol is an important regulator of many different systems in the body, including immune, reproductive, metabolic, and brain-related structure and function (Goodman, 2009; Miller et al., 2007).

To name a few notable functions, cortisol is a suppressor of the acute inflammatory response and can alter the reproductive system (Goodman, 2009). Cortisol can also reduce neuronal survival especially in brain regions like the hippocampus, as well as influence memory and attentional processes. Cortisol levels fluctuate throughout the day in a pulsatile, diurnal pattern (Goodman, 2009). Healthy individuals have a sharp increase in cortisol within the first 30 to 45 minutes of waking and then cortisol levels steadily decline throughout the day. Additionally, although cortisol levels and diurnal slopes can vary between and within people, having a flat, steady level of cortisol output throughout the day, be it high or low, is considered a sign of HPA axis dysfunction. Due to cortisol’s broad regulatory effects on the body, abnormal or dysregulated levels of cortisol (i.e., cortisol output that does not follow the normal diurnal pattern) are associated with a variety of mental health problems (e.g., depression; Herbert, 2013) and physical health problems (e.g., Type II Diabetes; Joseph et al., 2015), along with greater risk for mortality (e.g., Kumari et al 2011; Ronaldson et al 2015; Sephton et al 2000; 2013).

Thus, psychological mechanisms that may underlie or lead to an abnormal or 11 dysregulated cortisol stress response are of interest for understanding and improving caregivers’ mental and physical health (McEwen, 1998).

One psychological mechanism that may contribute to abnormal or dysregulated

HPA axis activity and cortisol secretion is perseverative cognition. The Perseverative

Cognition Hypothesis suggests that chronic perseveration, or thinking repetitively about a perceived stressor, can maintain activation of physiological stress systems and eventually lead to disease (Brosschot et al., 2006; Ottiviani et al 2016). Evidence suggests that rumination, a specific form of perseveration characterized by past-focused, negatively- valenced repetitive thought, may play a role in keeping the physiological stress system activated even hours after the stressor is over (Zoccola & Dickerson, 2015), as well as impede adaptation of the stress response to future stressors (Gianferrante et al., 2015).

Furthermore, rumination may even have a causal relationship with extended cortisol secretion following stressor cessation (Zoccola et al., 2014). Although current evidence indicates that rumination following a stressor is associated with greater cortisol exposure, support for this claim largely comes from samples of young, healthy adults experiencing acute stressors in laboratory settings. Therefore, it is important that researchers increase external validity by including older populations, chronic stressors, and measurement of stress-responsive system activation over longer periods of time to demonstrate that the effects of rumination when experiencing stress persist during daily life activities over weeks rather than just hours.

One such population of interest is older adult caregivers for people with dementia, who undergo chronic, unpredictable stressors through their caregiving duties. 12

Additionally, caregiving duties often occur over a period of months or years and therefore can have sustained impacts on health and well-being, given the potential for extended periods of time with high or abnormal cortisol exposure (McEwen, 1998). Using hair samples, measuring cortisol concentrations that reflect an extended time period has recently become possible (Sauve et al., 2007). Measurement of cortisol accumulated in hair is a novel technique that allows for the assessment of long-term exposure to cortisol and has been validated by demonstrating that hair cortisol accurately reflects medical conditions, medical treatment, and salivary measurement of the HPA axis (D’Anna

Hernandez et al., 2011; Manenschijn et al., 2011).

Hair cortisol concentrations also appear to be a robust indicator of stress exposure. A recent review of the existing six relevant studies indicates that chronic stress

(e.g., major life stressors, unemployment over 3 months) is often related to higher hair cortisol relative to non-chronically stressed controls (Staufenbiel et al., 2013). A positive relationship between experience of major life stressors and hair cortisol has been replicated in the context of physical neglect, being in war or combat zones, separation or divorce (Fischer et al., 2017), unemployment (Gidlow et al., 2016), and lifetime exposure to traumatic and non-traumatic stressful events (Schreier et al., 2016). Similarly, some

(Gidlow et al., 2016; Qi et al., 2017) but not all (Janssens et al., 2016) of the literature reported a significantly positive relationship between perceived stress and hair cortisol.

Of most relevance to the current project, Stalder et al (2014) compared chronically stressed dementia caregivers to age- and sex-matched healthy controls. The caregivers had 33.7% higher hair cortisol over the past 3 months compared to the controls. 13

However, it is worth noting that some research has reported an inverse relationship between stressful experiences and hair cortisol. Specifically, samples of individuals exposed to traumatic events and/or diagnosed with post-traumatic stress disorder have had lower hair cortisol concentrations relative to controls (Steudte et al., 2013; Steudte-

Schmiedgen et al., 2015).

The current study sought to replicate prior work indicating that dementia caregivers report more perceived stress (Hypothesis 1) and cortisol output (Hypothesis 2) than controls (Pinquart & Sorenson, 2003; Stalder et al., 2014). Further, the current study sought to extend the current literature on the Perseverative Cognition Hypothesis by testing it using chronic stressors and cortisol output over the past month. Specifically, it was expected that the effect of dementia caregiver status on hair cortisol would be moderated by trait rumination. Dementia caregivers with greater tendencies toward rumination were predicted to show higher levels of hair cortisol than dementia caregivers with fewer tendencies toward rumination and controls (Hypothesis 3). Additional analyses examined the links between perceived stress, rumination, and hair cortisol across the entire sample. It was expected that, across the whole sample, higher levels of perceived stress would be associated with higher hair cortisol (Hypothesis 4). In addition, across the whole sample, the effect of perceived stress on hair cortisol was expected to be moderated by trait rumination. Participants with higher levels of perceived stress and greater tendencies toward rumination were expected to show higher levels of hair cortisol than participants with lower levels of perceived stress and rumination tendencies

(Hypothesis 5). 14

METHODS

Participants

Twenty-nine caregivers for an individual with dementia and 47 controls were recruited (74.7 % female, Mage = 67.72 ± 9.79, 97.3% White) as part of a larger study

examining caregiving and cognitive functioning (see Table 1 for further demographic

information). Participants were eligible to participate in the study if they were over 50

years of age and able to read and write in English. To be considered a caregiver for

someone with dementia, a participant endorsed that they provided care to an individual

with dementia at least once a week, and that they spent at least 5 hours a week engaging

in caregiving for the individual with dementia. Caregivers reported caring for their care

recipient for an average of 46.7 ± 32.45 months with an average of 46.77 ± 59.69 hours

per week. Nineteen caregivers (65.5%) were a first degree relative to their care recipient

and 12 caregivers (41.4%) reported living with their care recipient. Self-reported history

of neurological disorders, dementia, or traumatic brain injury (Karr, Arehenkoff, Duggan,

& Garcia-Barrera, 2014) were exclusion criteria as they may affect cognitive measures.

Participants were recruited from central and southeastern Ohio communities with fliers

and advertisements in local newspapers and caregiver-relevant locations, such as

caregiver support groups and nursing homes, as well as from a participant pool (see

Appendix A).

Procedure

Following consent (see Appendix B), trained student researchers administered

several cognitive tests: the Repeatable Battery for the Assessment of Neuropsychological 15

Status (RBANS; Randolph, 1998) for immediate memory, visuospatial/constructional, language, attention, and delayed memory, the Trail Making Test (TMT; Reitan, 1955) for attention, speed, and mental flexibility, and the Controlled Oral Word Association Test

(COWA; Benton & Hamsher 1989) for word fluency and speed of processing. After the cognitive battery, the researcher conducted a semi-structured interview to determine participants’ health and disease status (see Appendix C for cognitive battery and semistructured interview). Participants then completed a variety of self-report measures, including demographics, perceived stress and trait rumination, as well as potential covariates including anxiety and depression (see Appendix D for all self-report measures). Those with caregiver status also completed measures about their caregiving duties and perceived stress relevant to caregiving duties. Following completion of self- report measures, participants measured their own waist circumference and blood pressure was measured by the researcher. Participants were then given the opportunity to consent to hair collection following a brief description of the purpose of the current project.

Those that were eligible and consented completed a brief measure of their hair characteristics and maintenance. The hair sample was then collected and participants were thanked and compensated with a free cognitive screening and a $20 gift card. All procedures were approved by the Ohio University Institutional Review Board.

Measures

Hair Cortisol Collection

Hair cortisol was collected by cutting a 3 millimeter diameter patch of hair as close to the scalp as possible that was at least 3 centimeters in length from the posterior 16 vertex of the participants’ head, as established and validated by Sauve et al (2007). Only the 1 centimeter closest to the scalp was used in current analyses. Sixty-one participants

(80.3%) met eligibility criteria for hair sampling and fifty-nine participants provided hair samples (25 caregivers; 34 controls). Participants who provided hair samples did not differ from participants who did not provide hair samples on demographic or personality measures (ps > .25).

Once collected, hair samples were wrapped in aluminum foil and stored at room temperature. They were then shipped to Dresden Lab Service and cortisol was measured using liquid chromatography tandem mass spectrometry, which allows for excellent sensitivity and specificity for the measurement of hormones in hair matrices (LC-

MS/MS; Gao et al., 2013). Hair strands were washed in isopropanol at room temperature for 3 minutes. Hair was then incubated in methanol for 18 hours for steroid extraction.

After the alcohol evaporated, the hair samples were completely dried with nitrogen. Dried residue was then suspended in distilled water to allow for quantification via LC-MS/MS.

Hair cortisol was detectable with a lower limit of 0.09 pg/mg and excellent intra-assay

(8.4%) and inter-assay (8.8%) coefficients of variation. Five participants (1 caregiver and

4 controls) were excluded from hair cortisol analyses due to outlying values (i.e., all were at least +5 SD from mean).

Rumination

The Rumination-Reflection Questionnaire (RRQ; Trapnell & Campbell 1999) was used to assess trait rumination with the 12-item Rumination subscale (Sample item: “I always seem to be ‘re-hashing’ in my mind recent things I've said or done”). Higher 17 mean scores represent greater trait rumination (possible scores from 1 – 5). This scale has good test-retest reliability (r = .80, Takanno & Tanno, 2008) and had excellent internal reliability in the current sample (α= .93).

Perceived Stress

Perceived stress over the past month was assessed with the 10-item version of the

Perceived Stress Scale (PSS; Cohen et al., 1983; Cohen & Williamson, 1988). Higher summed scores indicate higher perceived stress (possible scores from 0 to 40). The current sample had excellent internal reliability (α= .91).

Descriptive Measures and Covariates

Demographics

Participants self-reported demographic measures including their age, gender, race, duration of caregiving, and subjective socioeconomic status (1 [worst off] to 10 [best off] scale of their relative position in the United States; Adler, Epel, Castellazzo, & Ickovics,

2000). See Tables 1, 2, and 3 for descriptive statistics and bivariate correlations.

Depression

Depressed mood was assessed using the Center for Epidemiologic Studies

Depression Scale Revised (CESD-R; Eaton, Smith, Ybarra, Muntaner, & Tien, 2004).

Higher mean scores represent greater depressive symptoms; the current sample had excellent internal reliability (α= 92).

Anxiety

Anxiety was assessed using the 5-item Geriatric Anxiety Inventory-Short Form

(Byrne & Pachana, 2011). Participants responded “yes” or “no” to items (e.g., “Little 18 things bother me a lot”) and the number of “yes” responses were summed. A cut-off score of 3 is used for detection of Generalized Anxiety Disorder in a geriatric population.

The scale has good psychometric properties with good internal reliability in the current sample (α = .81).

Physical Health

Health conditions that may be related to HPA axis function were measured and considered for inclusion in analyses as covariates rather than used as an exclusion criteria. Physical health was measured via a semi-structured interview in the cognitive battery. Participants were coded such that having any condition (e.g., Cushing’s disease) or use of any medication (e.g., levothyroxine) that can influence the HPA axis was coded as 1 and having neither condition nor medication use was coded as 0. This coding strategy is consistent with how other researchers have controlled for medical conditions or medication use by treating HPA axis altering conditions or medications as a dichotomous variable in related published studies (e.g., Jarch et al., 2013). All female participants reported being post-menopausal.

Hair Characteristics

Participants completed a brief measure which allowed relevant hair characteristics to be considered as covariates (although the relationship between hair characteristics and cortisol concentrations is still debated; see Russell et al., 2012 for review). Participants reported their natural hair color, frequency of washing, use of hair treatments, use of hair products, and most recent haircut.

Table 1. Demographics and health behaviors for caregivers and controls Variable Caregivers Control t/χ2 p d/φ (n = 29) (n = 47) Gender (# Female) 23 (79.3%) 43 (72.3%) 0.43 .51 0.08 Age (Years) 63.21 ± 11.71 70.49 ± 7.35 -3.27 .002 0.74 Subjective Social Status 6.43 ± 1.17 6.89 ± 1.45 -1.42 .16 0.35 Smoking (# smokers) 2 (6.9%) 1 (2.1%) 0.96 .62 0.12 Drinks/week 1.63 ± 2.42 4.13 ± 6.91 -1.81 .07 0.48 Hours of exercise/week 3.05 ± 3.60 5.42 ± 5.51 -2.04 .045 0.50 BMI 28.11 ± 7.69 27.22 ± 5.29 0.58 .57 0.13 Systolic Blood Pressure 136.00 ± 17.31 133.95 ± 20.34 0.44 .66 0.11 Diastolic Blood Pressure 79.93 ± 11.28 80.50 ± 11.52 -0.21 .84 0.05 Waist Circumference (inches) 38.63 ± 6.82 37.74 ± 5.96 0.59 .55 0.13 Rumination 2.75 ± 0.91 2.50 ± 0.86 1.21 .23 0.28

Other Measures

Aside from the abovementioned predictors, outcomes, and covariates, the following are measured by self-report in the larger study (see Appendix D): caregiver burden (Caregiver Burden Inventory; Novak & Guest, 1989), sleep disturbance (PROMIS

Sleep Disturbance short form, Yu et al., 2011), worry (Penn State Worry Questionnaire

Abbreviated, Hopko et al., 2003), dementia-specific worry (Dementia Worry Scale, Suhr

& Isgrigg, 2011), affect (Positive and Negative Affect Schedule – Expanded Form,

Watson & Clark, 1994), perceived social support and negative social interaction (Krause,

1995), subjective memory failure (Everyday Memory Questionnaire – Revised, Royle &

Lincoln, 2008), neuropsychiatric symptoms (Neuropsychiatric Inventory, Kaufer et al.,

2000), positive aspects of caregiving (Positive Aspects of Caregiving Questionnaire,

Tarlow et al., 2004), and utilization of resources and barriers to resources (Mccallion,

Toseland, Gerber, & Banks, 2004). Caregiver relevant measures were completed only by 20 individuals who endorsed being a caregiver for an individual with dementia. See Table 3 for descriptive statistics and bivariate correlations. 21

Table 2. Bivariate associations between relevant predictors, outcomes, and health behaviors (n = 76) Variable Mean ± SD 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 1. Hair cortisol (pg/mg) 4.49 ± 4.84 2. Perceived stress 11.38 ± 7.89 -.25+ 3. Caregiver status (1 = caregiver) N = 29 -.27+ .36** 4. Gender (1 = male) N = 20 .32* -.11 -.08 5. Rumination 2.6 ± 0.88 -.17 .67*** .14 -.11 6. Depressed mood 7.26 ± 9.26 -.08 .75*** .26* -.16 .50*** 7. Anxiety 1.04 ± 1.52 -.24+ .69*** .14 -.24* .57*** .55*** 8. Age 67.72 ± 9.79 .04 -.09 -.36** .13 -.21+ -.04 .06 9. BMI 27.51 ± 6.23 -.04 .03 .07 .16 .10 -.03 .07 -.18 10. Drinks/week 3.16 ± 5.74 -.03 .21+ -.21+ .04 .17 .13 .09 .05 .16 11. Exercise (hrs/week) 4.55 ± 4.96 .24+ -.13 -.24* .01 -.04 .02 -.08 .09 -.24* .08 12. Steroid medication/condition (1 = yes) N = 33 -.14 .10 .09 -.21+ .07 .11 .22+ .07 -.20+ -.22+ -.10 13. Systolic blood pressure 134.67 ± 18.99 -.18 .03 .05 .26* -.03 -.08 -.03 .21+ .49*** .08 -.02 -.19 14. Diastolic blood pressure 80.18 ± 11.30 .01 -.04 -.03 .30** .01 -.13 -.15 -.03 .51*** .08 .01 -.24* .77*** 15. Waist circumference (in.) 38.03 ± 6.26 -.18 .06 .07 .33** .10 -.02 .02 -.12 .91*** .25* -.26* -.25* .45*** .46*** 16. Hair wash frequency (per week) 3.76 ± 2.04 .04 -.03 .26+ -.03 .02 -.03 .08 -.23 -.25 .14 -.06 -.10 -.28+ -.39* -.18 17. Hair treatment (1 = yes) N = 16 -.23 -.04 .06 -.34* -.11 -.02 .19 -.19 -.06 -.12 -.06 -.11 -.04 -.01 -.15 .09 18. Hair product use (1 = yes) N = 21 -.14 -.01 .06 -.34* .10 .08 .20 .25 -.21 -.08 .09 .12 .08 .04 -.33* .03 .28+ 19. Socioeconomic Status 6.69 ± 1.36 .10 -.26* -.17 -.09 -.02 -.13 -.15 .07 -.23* -.03 -.01 .13 -.21+ -.07 -.17 -.10 -.17 .02 Note. + < .10; * < .05; ** < .01; *** < .001; BMI = Body Mass Index

Table 3. Bivariate correlations in caregivers only between relevant predictors, outcomes, and caregiver characteristics (n = 29) Variable Mean ± SD 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 1. Hair cortisol 5.70 ± 5.57 2. Perceived stress 15.17 ± 8.41 -.27 3. Care recipient age 81.68 ± 9.82 -.55** -.01 4. Participant gender (1 = men) N = 6 .03 .08 -.22 5. Care recipient gender (1 = male) N = 8 -.37+ .31 .18 -.35+ 6. Frequency of care 1.50 ± 0.79 -.02 -.37+ .43* -.13 -.30 7. Duration of care (months) 46.7 ± 32.45 -.25 .19 .57** -.13 .11 .34+ 8. Hours of week of care 46.77 ± 59.69 -.25 .49** -.22 -.02 .41* -.37+ -.05 9. Live with care recipient (1 = yes) N = 11 .05 -.38* .53** -.33+ -.14 .52** .21 -.63*** 10. Genetically related (1 = yes) N = 19 .13 .08 -.05 -.02 .29 -.11 -.14 .33+ -.47* 11. Caregiver burden 33.82 ± 15.49 -.27 .83*** .15 -.05 .35+ -.17 .37+ .50** -.35+ .28 12. Time burden 12.19 ± 3.74 .01 .45* -.03 .09 -.03 -.12 .18 .42* -.28 .29 .68*** 13. Developmental burden 3.04 ± 3.64 -.15 .55** -.08 .10 .26 -.19 .22 .65*** -.63*** .36+ .71*** .35+ 14. Emotional burden 6.14 ± 4.18 -.17 .66*** .12 -.10 .23 -.21 .30 .17 -.11 .03 .80*** .38* .51** 15. Social burden 6.71 ± 4.43 -.22 .78*** .36+ -.15 .31 -.01 .43* .32+ -.01 .13 .84*** .48* .38* .66*** 16. Physical burden 5.75 ± 4.04 -.49* .74*** .18 -.11 .54** -.13 .29 .42* -.40* .33+ .82*** .44* .55** .49** .65*** 17. Positive aspects 27.61 ± 8.56 .18 -.33+ .35+ -.20 -.01 .29 .23 -.41* .59** -.40* -.29 -.36+ -.31 -.04 -.05 -.43* 18. ADL 27.18 ± 9.37 -.12 .32+ .38* .08 .06 -.03 .34+ .06 .12 .11 .37+ .64*** -.04 .06 .37+ .39* -.07 19. Barriers to care 0.55 ± 1.12 -.15 .41*** -.08 -.01 .28 -.23 -.29 .37+ -.29 .16 .23 .12 .08 -.03 .31 .39* -.16 .15 20. Symptom severity 9.74 ± 6.37 -.32 .07 .42* -.26 .07 .18 .44* .09 .09 .16 .23 .01 .19 .36+ .17 .12 -.12 -.05 -.32 21. Caregiver distress 18.22 ± 11.86 -.30 .39* .10 .11 .01 -.03 .29 .22 -.24 .11 .49* .28 .35+ .46* .34+ .45* -.35+ .11 .09 .67*** 22. Service use 1.72 ± 3.51 -.18 .29** .31 -.07 .23 .01 .13 .13 -.16 .37+ .14 .05 -.02 .02 .27 .19 -.02 .01 .54*** .12 .15 23. Future service use 2.25 ± 6.43 -.11 .16 -.26 .15 -.25 -.16 -.32+ -.28 -.21 -.03 -.16 -.28 -.03 -.09 -.19 -.04 -.16 -.39* .42*** -.26 .00 .31** Note. + < .10; * < .05; ** < .01; *** < .001; ADL = Activities in Daily Life 23

Statistical Analyses

A priori power analyses indicated that a sample size of 55 was necessary to detect the effects found in prior literature on caregiving, stress, and hair cortisol (Pinquart &

Sorensen, 2003; Stalder et al., 2014; Staufenbiel et al., 2013). With an overall sample size of N = 76, of which 59 provided hair, all planned analyses were adequately powered to detect expected effects. Bivariate correlations among the variables of interest and potential covariates were calculated (see Table 2). Covariates were included in tests of the hypotheses if they had a statistically significant relationship with hair cortisol or if they differed based on caregiver status. Participant gender (1 = male), age, and exercise

(hours per week) were selected as covariates. Analyses are presented both with and without adjustment for covariates. Caregiver status was dummy coded such that controls were coded as 0 and caregivers were coded as 1. Continuous predictor variables were mean-centered to reduce multicollinearity when testing interaction terms in regression analyses. 24

RESULTS

Caregiver Hypotheses

Consistent with predictions, dementia caregivers reported higher perceived stress

(M = 15.17 ± 8.41) than controls (M = 9.28 ± 6.74) over the past month, t(73) = 3.34, p =

.001, d = 0.78. When controlling for age, gender, and exercise, dementia caregivers still

reported higher perceived stress than controls F(1, 71) = 11.26, p = .001, .144.

Contrary to predictions, caregivers (M = 3.09 ± 3.26 pg/mg) had lower hair cortisol than controls (M = 5.70 ± 5.57 pg/mg), t(48.05) = 2.14, p = .038, d = 0.57. When controlling for gender, age, and exercise, caregivers still had lower hair cortisol than controls, F(1,

45) = 4.33, p = .043, .088.

Contrary to predictions, there was not a significant interaction between caregiver status and rumination, β = .18, t(52) = 0.86, p = .34, and the interaction between caregiver status and rumination did not explain a significant amount of variance in hair cortisol,

F(1, 49) = 0.93, p = .34, R2 = .017. Similarly, there was not a significant interaction

between caregiver status and rumination when controlling for gender, age, and exercise, β

= .13, t(52) = 0.62, p = .54, and the interaction term did not explain additional variance,

F(1, 43) = .39, p = .54, ΔR2 = .007. There was no main effect of rumination in predicting

hair cortisol in unadjusted or adjusted models (ps > .17).

Perceived Stress Hypotheses

Contrary to predictions, perceived stress was marginally negatively associated

with hair cortisol across the whole sample (see Figure 1), β = -.25, t(52) = -1.86, p = .068 and explained 6.2% of the variance in hair cortisol, F(1, 52) = 3.46, p = .068, R2 = .062. 25

However, the relationship between perceived stress and hair cortisol was non-significant when controlling for gender, age, and exercise, β = -.19, t(52) = -1.41, p = .16.

15 (pg/mg)

10 Cortisol

Hair 5

0 0 5 10 15 20 25 30 35 40 Perceived Stress

Figure 1. Scatterplot and regression line for the unadjusted relationship between perceived stress and hair cortisol.

Consistent with predictions, there was a significant interaction between perceived stress and rumination, β = .33, t(52) = 2.19, p = .033, which explained 7.7% of the variance in hair cortisol across the sample, F(1, 48) = 4.81, p = .033, R2 = .077. The

interaction effect became marginally significant when controlling for gender, age, and

exercise, β = .31, t(52) = 1.94, p = .058, and the interaction term explained an additional

6.3% of the variance in hair cortisol, F(1, 44) = 3.78, p = .058, R2 = .063. There was no

main effect of rumination in predicting hair cortisol in unadjusted or adjusted models (ps

> .74). 26

The Johnson-Neyman technique (Hayes & Matthes, 2009) was used to decompose the interaction. This technique may be advantageous relative to traditional

“pick-a-point” simple slopes analyses (Aiken, West, & Reno, 1991) in that it can identify values of the moderator where there is a statistically significant relationship between the predictor and outcome. Johnson-Neyman analyses revealed a region of significance for a positive relationship between trait rumination and hair cortisol when perceived stress was at or above 29.14 (on a 0 to 40 scale) or 2.25 SDs above the mean perceived stress value

(b = 3.32, SE = 1.65, 95% CI 0.00 to 6.64). That is, the expected positive relationship between rumination and hair cortisol was found, but only at relatively high levels of perceived stress.

4 (pg/mg)

Cortisol 2 Mean PSS Hair 1 2.25 SD PSS 0

Predicted ‐1

‐2 1.72 2.6 3.48 Rumination

Figure 2. Simple slopes for the effect of rumination on hair cortisol at mean levels of the

Perceived Stress Scale and at 2.25 standard deviations above the mean of the Perceived

Stress Scale. 27

Alternative Explanations and Moderated Effects

Several alternative explanations and moderated effects were statistically tested.

First, it is possible that season of sampling may be related to hair cortisol (Randall &

Ebling, 1991). Date of participation was coded into the four seasons (winter, spring, summer, fall) and an ANOVA was used to test for any differences between season in hair cortisol concentrations. There were no differences between hair cortisol levels based on season, F(3, 50) = 0.27, p = .84, R2 = .016.

Additionally, given that there were gender differences in hair cortisol in the

sample, gender was tested as a moderator for the effects of stress and rumination on hair

cortisol. Of note, men and women did not differ in reported stress levels, t(73) = 0.97, p =

.34, d = 0.26, nor was there a significant interaction between gender and caregiver status

on perceived stress (p = .24).There was a significant interaction between gender and

perceived stress on hair cortisol, b = -0.58, t(52) = -2.32, p = .03. Follow-up analyses

indicated that men showed a stronger negative relationship between perceived stress and

hair cortisol, b = -0.65, t(17) = -2.73, p = .009, while the relationship was non-significant in women, b = -0.07, t(34) = -0.93, p = .36. Similarly, there was a significant interaction between gender and caregiver status on hair cortisol, b = -7.42, t(52) = -2.08, p = .04. For

men, caregiver status was associated with decreased hair cortisol, b = -9.25, t(17) = -2.78,

p = .008, while for women, the relationship between caregiver status and hair cortisol was

non-significant, b = -1.83, t(34) = -1.39, p = .17. Differences in male and female

caregivers are presented in Supplemental Table 1. 28

Given that gender moderated the effects of perceived stress and caregiver status on hair cortisol, follow-up analyses tested whether gender also moderated the interaction between trait rumination and caregiver status on hair cortisol and the interaction between trait rumination and perceived stress on hair cortisol. There was not a significant three- way interaction between gender, perceived stress, and rumination (p = .20), nor was there a significant three-way interaction between gender, caregiver status, and rumination (p =

.26).

Finally, given that exercise was related to both caregiver status and hair cortisol, and that exercise is a physiologically plausible mechanism for altering hair cortisol levels, exercise was tested as a mediator of the effect of caregiver status on hair cortisol.

There was no indirect effect of caregiver status on hair cortisol through exercise (b = -

0.44, SE = 0.69, 95% CI: -3.06 to 0.21). 29

DISCUSSION

The current study sought to replicate previous findings indicating that dementia caregivers experience more stress and that higher stress is associated with higher levels of hair cortisol. The current study also sought to test the perseverative cognition hypothesis in a novel population with a novel type of stress and time-course of physiological measurement. The hypothesis that dementia caregivers would report more stress over the past month than controls was supported and the magnitude of differences in stress between dementia caregivers and controls was of a similar magnitude to stress differences reported by meta-analyses (Pinquart & Sorenson, 2003). However, contrary to predictions, greater levels of stress, as measured by dementia caregiver status and by self-reported perceived stress, showed a marginal negative association with hair cortisol.

These findings are in the opposite direction of what is commonly reported in the literature, both for stress exposure in general (Staufenbiel et al., 2013) and for caregivers specifically (Stalder et al., 2014).

Although unexpected, the negative relationship between stress and hair cortisol is plausible when considering the broader hair cortisol literature. For example, some research that examined the relationship between trauma and post-traumatic stress disorder found that initial traumatic experiences were associated with greater cortisol output relative to controls but over the next period of months and years, individuals that had been traumatized or been diagnosed with post-traumatic stress disorder had lower cortisol output relative to controls (Steudte et al., 2013; Steudte-Schmiedgen et al., 2015). In the current sample, dementia caregivers had been providing care for a relatively long time (a 30 little less than 4 years on average) at the point of hair sampling, and the relationship between length of time providing care and hair cortisol (r = -.25) was similar to a reported effect size of time since traumatization on hair cortisol in another sample (r = -

.30; Steudte-Schmiedgen et al., 2015). This is not to argue that dementia caregiving can be equated with trauma or post-traumatic stress disorder, but simply to say that the current unexpected hair cortisol findings are not without precedent in the broader adversity and cortisol literature.

As the current results stand in direct opposition to those reported by Stalder et al

(2014)’s comparison of dementia caregivers and controls, which found that dementia caregivers had higher hair cortisol than control, it is worth noting differences in the sample and methodology relative to the current study. The current study used only the most proximal cm while Stalder et al used 3 cm, meaning that the current study only captured the past month while Stalder et al captured the past 3 months of hair cortisol output. Additionally, the current study used LC-MS/MS (Gao et al., 2013) for quantification of hair cortisol while Stalder et al used immunoassay. In contrast to immunoassays, LC-MS/MS offers superior sensitivity and specificity and does not risk cross-reactivity with other hormones that may artificially inflate cortisol values. Finally, the Stalder et al sample reported greater levels of depression, with the majority of the sample reporting at least mild depressive symptoms. Given the association between depression and cortisol (e.g., Dettenborn et al., 2012), the discrepancy in results between the current study and Stalder et al may be due in part to differences in depressive symptoms in their respective samples. 31

The negative association between stress and hair cortisol is also plausible from physiological, theoretical, and behavioral perspectives. The HPA axis operates on a negative feedback loop, which is to say that initial high cortisol output can in turn lead to greater suppression of cortisol output going forward (Goodman, 2009). It is possible that the individuals in the current sample are displaying suppressed cortisol output following the initial high output associated with stress when measured closer to stressor onset (e.g.,

Gidlow et al., 2016). Indeed, there is notable evidence that hypocortisolism is a long-term consequence of earlier extended hypercortisolism and that this hypocortisolism may also be a pathway to chronic health conditions (see Heim, Ehlert, & Hellhammer, 2000 and

Fries, Hesse, Hellhammer, and Hellhammer, 2005 for reviews). Similarly, the negative relationship may make sense in the context of the allostatic load model (McEwen, 1998).

That is, these relatively low levels of cortisol output may be a reflection or product of the long-term wear and tear on the body due to the stress exposure associated with dementia caregiving. To better support this explanation of the negative relationship between stress exposure and hair cortisol, longitudinal studies that capture dementia caregivers’ biomarkers before, during, and after being a caregiver are required. Similarly, dexamethasone suppression testing could be used to determine if there is exaggerated

HPA axis suppression of cortisol (Yehuda et al., 1993). It is also important to remember that stress has behavioral consequences that can affect health and cortisol. For example, individuals experiencing or perceiving greater stress are less likely to engage in exercise or physical activity, a behavior that can maintain or increase physical and mental health

(Stults-Kolehmainen & Sinha, 2014). In the current sample, dementia caregivers reported 32 less exercise and greater exercise was associated with greater cortisol output, although exercise did not significantly mediate the association between caregiver status and hair cortisol. While often simply treated as covariates or ignored entirely, health behaviors like exercise are an important part of the pathway between stress and poor health.

The lack of a significant interaction between caregiver status and trait rumination and the pattern of the significant interaction between perceived stress and trait rumination together offer weak support for the Perseverative Cognition Hypothesis. The

Perseverative Cognition Hypothesis holds that repetitive thought about a stressor may result in greater physiological activation (Gerin, Brosshchott, & Thayer, 2006), which was reflected in the current findings. Specifically, the results indicated a positive relationship between trait rumination and hair cortisol when perceived stress was at least

29.14 on a 40 point scale (i.e., 2.25 SDs greater than the sample mean, 2.03 SDs greater than a nationally normed sample; Cohen & Janicki-Deverts, 2012). Taken in a vacuum, this pattern offers support that this specific prediction of the Perseverative Cognition

Hypothesis can be demonstrated in non-laboratory samples, with chronic stressors, and over longer (1 month in the current sample relative to 12 hours in other samples [Zoccola

& Dickerson, 2015]).

That the effects of rumination only occur in the context of high stress also makes sense in the context of the evidence to date. Studies that have effectively demonstrated that rumination extends cortisol activation (e.g., Zoccola et al., 2014) have used speech stressors, which are relatively strong, psychological stressors with the ability to activate the cortisol stress response. This strong positive effect with particularly high stress may 33 then be reflected in the current findings, which noted that relatively high amounts of stress over the past month was the boundary condition for rumination having the predicted effect of greater hair cortisol output. However, even if the positive direction of relationship between rumination and hair cortisol in the context of high stress does provide some theoretical support, it is hard to argue for the practical significance of the

Perseverative Cognition Hypothesis, given that rumination only had effects on hair cortisol at relatively high levels of perceived stress. That is, if the effect is only present in individuals with perceived stress 2.25 SDs above the mean, only 1.22% of the population would have high enough perceived stress for rumination to increase cortisol output. Thus, there is not evidence for clinical or practical significance of the Perseverative Cognition

Hypothesis.

Overall, it is also possible that these discrepant findings, as in the negative stress to hair cortisol relationship, or weak findings, as in the tests of the Perseverative

Cognition Hypothesis, may be driven in part by the relatively low levels of stress and trait rumination in the sample. Although the dementia caregivers did indeed report greater perceived stress than the controls, the mean value for the caregivers perceived stress

(15.17) does not differ significantly from nationally normed average levels of perceived stress across all U.S. adults (14.50; Cohen & Janicki-Deverts, 2012). Similarly, the mean levels of trait rumination in this sample (2.60) are relatively low compared to other samples examining repetitive thought and physiology (3.02; Woody et al., 2016).

More generally, it may be that these findings are discrepant or weak because caregiving has different qualities as a stressor than the acute lab stressors used to 34 demonstrate the Perseverative Cognition Hypothesis. For example, the most compelling demonstration of the Perseverative Cognition Hypothesis (Zoccola et al., 2014) used a speech stressor, wherein the participant was forced to give an impromptu speech about themselves to a group of cold audience members. This type of stressor uses social- evaluative threat as its “active ingredient”, which has been well-documented in its effectiveness in inducing a cortisol stress response (Dickerson & Kemeny, 2004; Woody et al., In Prep). Although dementia caregiving is inarguably capable of being a stressful experience, it may be perceived as stressful for different reasons than the reason that laboratory stressors are perceived as stressful. From a physiological standpoint, this may be key for understanding these findings, as studies consistently show that different kinds of stressors activate different physiological response patterns generally (Seery, 2011) and with cortisol in particular (Dickerson & Kemeny, 2004). Future work may better explore this possibility by having multiple comparison groups experiencing different kinds of chronic stressors (i.e., such as those that vary in degree of social evaluative threat) and collecting data on more stress-related physiological outcomes than just hair cortisol.

Similarly, rumination, just like stress, can be conceptualized and measured in different ways. For example, one measure (i.e., the Rehearsal subscale of the Emotional

Control Questionnaire) was used as evidence for trait rumination extending cortisol output hours after a stressor cessation (Roger & Najarian, 1989; Zoccola & Dickerson,

2015). This measure explicitly includes the emotional reaction to perseverating on a past stressful event (e.g., the following is one sample item: “I get ‘worked up’ just thinking about things that have upset me in the past”). The measure used in the current study, the 35 rumination subscale of the Rumination-Reflection Questionnaire (Trapnell & Campbell,

1999) also effectively links rumination to the physiological response after a stressor

(Woody et al., 2015). However, it may function as a more non-emotional measure of rumination that only includes the process of repetitively focusing on past negative events without including the emotional reaction to those past events (e.g., the following is one sample item: “I spend a great deal of time thinking back over my embarrassing or disappointing moments”).

It is also important to note that gender moderated the relationship between perceived stress and hair cortisol and the relationship between caregiver status and hair cortisol, such that men showed stronger negative relationships between high stress or caregiver status and hair cortisol, relative to women, who showed null associations between stress or caregiver status and hair cortisol. This finding is not particularly surprising given the general body of research demonstrating gender differences in cortisol levels and reactivity to stressors (Kudielka & Kirschbaum, 2005). One plausible mechanism for this moderated relationship is differences in sex hormones between males and females, which may regulate cortisol levels (Goodman, 2009). After menopause, production of hormones like estrogen and progesterone become purely intracellular processes and therefore have greater local effects rather than body-wide effects due to the reduced circulating levels relative to pre-menopausal ovarian production and secretion, which may further underlie gender differences later in life (Labrie, 2015). Future work may better address sex/gender differences by measuring other endocrine system markers 36 captured by the hair that may be related to cortisol output (e.g., testosterone or progesterone).

Additionally, it is possible that men and women have different experiences as caregivers. Caregiving is often a gendered activity, such that women serve in caregiving roles inside and outside the home more than men over the course of their lifetimes

(Sharma, Chakrabarti, & Grover, 2016). Thus, for female dementia caregivers, it may simply be another iteration of a role that they have held many times already in their lives, while for male dementia caregivers it may be a new and unfamiliar role. Results of supplemental analyses presented in Supplemental Table 1 indicate that men received more tangible support than women, despite not differing from women in care recipient characteristics or overall evaluation of caregiver burden and perceived stress in general.

This may be an indicator that men may ask for or be given more help as caregivers than their female counterparts, although all supplemental analyses must be interpreted with caution given the small number of male caregivers in the current sample. Future work may better address if there are gender differences in caregiving by following and comparing male and female caregivers, in terms of caregiving duties and personal appraisals of their own distress, systematically over time.

Although the data presented here only found that gender (and not hair care regimen or other health behaviors) was related to hair cortisol levels over the past month, more work may be required to better understand potential covariates and determinants of hair cortisol levels. For example, there is some evidence that the qualities of the hair itself may differ from season to season (Randall & Ebling, 1991), although this effect was not 37 replicated in the current sample. Similarly, although hair cortisol analyses assume that scalp hair grows at 1 centimeter per month, there is some evidence that scalp hair growth rate may vary both between and within individuals (LeBeau, Montgomery, & Brewer,

2011). Future longitudinal work using hair cortisol may help to allay concerns about inter- and intra-individual variability in hair growth rate by sampling multiple times throughout the protocol and measuring each individual’s hair growth rate to more accurately match hair segments to their corresponding time of cortisol output.

Despite these concerns, hair cortisol has distinct methodological advantages, in terms of low participant burden and the time frame of cortisol output relative to plasma, urinary, and saliva-based measurement, and future work should better use those advantages and better compensate for weaknesses. Specifically, future research testing the relationships among examining stress, rumination, and hair cortisol should analyze more than just the most proximal cm of hair to determine if relationships persist over time. Additionally, future work should consider combining measurements of hair cortisol with week-long measures of salivary diurnal cortisol. Although hair cortisol is a useful tool for demonstrating high or low HPA axis output over months, it cannot indicate the form of dysregulation of diurnal cortisol responsible for those relatively high or low levels. Similarly, researchers should consider combining hair cortisol analyses with dexamethasone suppression testing (Yehuda et al., 1993), which would allow researchers to more accurately pinpoint where in the cortisol release and negative feedback loop there is dysregulation. 38

In sum, the current sample replicated prior findings that dementia caregivers report relatively higher levels of stress compared to non-caregivers. However, contrary to much of the stress and hair cortisol literature, this higher amount of stress was associated with lower hair cortisol levels over the past month. The current findings also offer weak support for the Perseverative Cognition Hypothesis. More work is needed to provide effective evidence for (or, of course, evidence against) the physiological effects of perseverating on a stressor over weeks, months, and years of stressor exposure.

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APPENDIX A: RECRUITMENT MATERIALS ARE YOU A CAREGIVER FOR SOMEONE WITH DEMENTIA? Researchers at Ohio University are studying how serving as a caregiver for a patient or patients with dementia can affect the caregiver. You will receive a free cognitive screening and feedback on your performance in exchange for your study participation! You May Be Eligible To Participate if: You are over 50 You are a dementia caregiver You are able to read and write in English You live in the United States

Research study requirements: Come to our laboratory in Porter Hall at Ohio University for about 1-2 hours to complete study procedures. Complete a survey that will ask you questions about your health, your general background, your experience as a caregiver, and your psychological state. Complete a battery of cognitive tests.

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ARE YOU INTERESTED IN RECEIVING A FREE COGNITIVE SCREENING? Researchers at Ohio University are studying how serving as a caregiver for a patient or patients with dementia can affect the caregiver. We are comparing caregivers with non-caregivers; you do not need to be a caregiver to participate. You will receive a free cognitive screening and feedback on your performance in exchange for your study participation! For more information, contact: Anna Kinzer, M.S., 740‐593‐0910, [email protected] You May Be Eligible To Participate if: You are over 50 You are able to read and write in English You live in the United States

Research study requirements: Come to our laboratory in Porter Hall at Ohio University for about 1-2 hours to complete study procedures. Complete a survey that will ask you questions about your health, your general background, and your psychological state. Complete a battery of cognitive tests.

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APPENDIX B: CONSENT

Title of Research: The health impact of caregiving. Part A Researchers: Anna Kinzer, M.S., Alex Woody, M.S., Peggy Zoccola, Ph.D, and Julie Suhr, Ph.D,

You are being asked to participate in research. For you to be able to decide whether you want to participate in this project, you should understand what the project is about, as well as the possible risks and benefits in order to make an informed decision. This process is known as informed consent. This form describes the purpose, procedures, possible benefits, and risks. It also explains how your personal information will be used and protected. Once you have read this form and your questions about the study are answered, you will be asked to sign it. This will allow your participation in this study. You should receive a copy of this document to take with you.

Explanation of Study The purpose of this study is to investigate how serving as a caregiver for an individual with dementia can affect the caregiver. To study this, we will compare caregivers of persons with dementia to individuals who do not serve as caregivers on a variety of health outcomes.

If you agree to participate, you will be asked to complete an electronic survey that will ask you questions about your health, your general background, your experience as a caregiver (if you identify as a caregiver), your psychological state, and your worries about your own cognitive skills. We will measure your blood pressure and instruct you on how to measure your waist circumference. You will also complete a battery of cognitive tests and receive feedback on your cognitive performance. You will be asked to create (or re-create) your personal identification number so that your deidentified data may be linked with data from your participation in past or future studies (if applicable).

You should participate in this study only if you are at least 50 years of age and are able to read and write in English.

Your participation in the study will last approximately 2 hours.

Risks and Discomforts Some participants may be uncomfortable answering personal and/or sensitive questions about their experiences and health status. All of your data is confidential, which should help minimize this risk. In addition, you are free not to answer any questions that cause you discomfort.

Benefits This study is important because we hope to learn more about how caregivers are affected by serving as caregivers to individuals with dementia. While much is known about the stress caused by caregiving, less is known about how caregiving might affect caregivers’ 53 understanding of their own cognitive abilities. It is hoped that the information will lead to further studies to assist caregivers who are concerned about their own cognitive skills and abilities. If you choose to participate in this study, you will receive a free cognitive screening and feedback on your cognitive performance. The feedback session will be conducted in person and you will have an opportunity to ask questions related to your performance on cognitive testing.

Confidentiality and Records All survey responses that we receive will be treated confidentially; no identifying information is being gathered as part of the study. While you will be asked to create a confidential number to use in recording your study data, this number will not be able to be connected to you in any way. However, while every effort will be made to keep your study-related information confidential, there may be circumstances where this information must be shared with: * Federal agencies, for example the Office of Human Research Protections, whose responsibility is to protect human subjects in research; * Representatives of Ohio University (OU), including the Institutional Review Board, a committee that oversees the research at OU.

Contact Information If you have any questions regarding this study, please contact Anna Kinzer at [email protected] or Dr. Julie Suhr at [email protected].

If you have any questions regarding your rights as a research participant, please contact Dr. Chris Hayhow, Director of Research Compliance, Ohio University, (740)593-0664, [email protected].

By signing below, you are agreeing that: you have read this consent form (or it has been read to you) and have been given the opportunity to ask questions and have them answered you have been informed of potential risks and they have been explained to your satisfaction. you understand Ohio University has no funds set aside for any injuries you might receive as a result of participating in this study. you are 50 years of age or older. your participation in this research is completely voluntary. you may leave the study at any time. If you decide to stop participating in the study, there will be no penalty to you and you will not lose any benefits to which you are otherwise entitled.

______

Print Name Sign and date Version Date: 6/16/15 54

Title of Research: The health impact of caregiving. Part B Researchers: Alex Woody, M.S., Anna Kinzer, M.S.,Julie Suhr, Ph.D, and Peggy Zoccola, Ph.D

Explanation of Study The purpose of this study is to investigate how serving as a caregiver for an individual with dementia can affect the caregiver’s hormones. To study this, we will analyze the amount of the stress hormone cortisol is present in their hair.

If you agree to participate, you will be asked to allow us to take small hair sample from the back of your head. A trained research assistant will remove about 100 strands of hair (20 mg or 3mm in diameter) from the posterior vertex (the top back) of your head using fine scissors. This is a very small portion, so you don’t need worry about this procedure messing up your haircut.

You should participate in this study only if you have participated in the first part of the study, and have at least 3 cm of hair on the back of your head.

Your participation in the study will last approximately 10 minutes.

Risks and Discomforts Some participants may be uncomfortable providing hair samples. Experiments employing similar measurements have not incurred injury or harm. In addition, the procedures used do not differ greatly from the type of procedures one would experience during a routine medical examination or haircut. Your hair will not be analyzed for anything other than hormone levels.

Benefits This study is important because we hope to learn more about how caregivers are affected by serving as caregivers to individuals with dementia. Caregiving might affect caregivers’ stress hormones, which can affect many important aspects of physical and mental health. It is hoped that the information will lead to further studies on how to reduce stress in caregivers.

Confidentiality and Records No identifying information is being gathered by taking hair samples. While you will be asked to create a confidential identification code to use in recording your study data, this number will not be able to be connected to you in any way. This number only links your data to Part A of the study.

However, while every effort will be made to keep your study-related information confidential, there may be circumstances where this information must be shared with: * Federal agencies, for example the Office of Human Research Protections, whose responsibility is to protect human subjects in research; * Representatives of Ohio University (OU), including the Institutional Review Board, a committee that oversees the research at OU.

Contact Information If you have any questions regarding this study, please contact Anna Kinzer at [email protected] or Dr. Julie Suhr at [email protected].

If you have any questions regarding your rights as a research participant, please contact Dr. Chris Hayhow, Director of Research Compliance, Ohio University, (740)593-0664, [email protected].

______

Print Name Sign and date

Version Date: 6/16/15

APPENDIX C: COGNITIVE MEASURES AND SEMISTRUCTURED INTERVIEW

Repeated Battery for the Assessment of Neuropsychological Status

This scale is previously copyrighted material.

Trail Making Task This scale is previously copyrighted material.

Controlled Oral Word Association Test This scale is previously copyrighted material.

Medical History (clinical interview format) ID number ______

Have you ever lost consciousness due to a blow to the head or other injury?

YES NO

IF YES… For how long did you lose consciousness? ______Did you see a doctor? ______Were you hospitalized? ______What was your diagnosis, if any? ______Did you have any form of treatment? ______

If YES, when? Have you ever had seizures? YES NO ______Have you ever had a brain tumor? YES NO ______Have you ever had a stroke? YES NO ______Have you ever had a heart attack? YES NO ______

Please report all of your medical diagnoses (including hypertension or high blood pressure, diabetes or high blood sugar, and high cholesterol – please report your cholesterol number if you know it):

Please rate your perception of your current health status:

Poor Fair Good Very Good Excellent 1 2 3 4 5

Have you ever seen a mental health professional (psychiatrist, psychologist, counselor)? YES NO

If YES, for what diagnosis or purpose? ______

When ______

ID number ______58

Please think back to each month over the past three months. List any specific illnesses you had and tally the number of doctor’s visits you can recall. This list refers to illnesses and doctor’s visits you had yourself. Month Illnesses Doctor Visits

Current Prescription and Over-the-Counter Medications Used Name of Frequency Date Taken Prescribed Medication Last Regularly? For Taken

Prescription and Over-the-Counter Medications not being used currently, but used anytime in the past 3 months Name of Frequency Date Taken Prescribed Medication Last Regularly? For Taken

APPENDIX D: SELF-REPORT MEASURES

Rumination Reflection Questionnaire This scale is previously copyrighted material.

Perceived Stress Scale

This scale is previously copyrighted material.

Caregiver Burden Inventory This scale is previously copyrighted material.

DEMOGRAPHICS What is your current age? ______What is your gender?

Male Female

What is your race/ethnicity?

American Indian or other Native American Asian, Asian American, or Pacific Islander Black or African American White (non-Hispanic) Mexican or Mexican American Puerto Rican Other Hispanic or Latino Multiracial Other 60

I prefer not to respond

Occupational status

Currently working Retired Never worked outside the home Disabled

If you are currently working, what is your occupation? ______If you are not currently working, but have worked in the past, when did you last work (year)? ______How much formal education have you completed?

Less than high school High school Some college College (Associate's or Bachelor's degree) Advanced degree (Master's degree, Professional degree, Doctorate degree)

Think of this ladder as representing where people stand in the United States.

This scale is previously copyrighted material.

How much do you weigh? ______How tall are you? ______

Do you smoke cigarettes?

Yes Never Used to but quit

How many drinks of alcohol do you have in a normal week? ______How many hours per week do you do vigorous exercise? ______If you are female, when was your last menstrual cycle (month, year)? ______

Center for Epidemiological Studies Depression Scale – Revised This scale is previously copyrighted material.

Geriatric Anxiety Inventory – Short Form

This scale is previously copyrighted material.

PHYSICAL HEALTH This scale is previously copyrighted material.

Caregiver recipient characteristics Do you currently provide care for an individual with dementia?

Yes No

What is your care recipient's age? ______What is your care recipient's gender? ______What is your care recipient's race/ethnicity?

How frequently do you see your care recipient?

Daily 2-3 times a week Once a Week 2-3 Times a Month Once a Month Less than Once a Month Never

For approximately how many months have you been providing care? ______Approximately how many hours per week do you spend providing care? ______Does your care recipient live with you?

Yes No

Are you genetically related to the person you care for?

Yes, first degree relative (e.g. parent, sibling, child) Yes, second degree relative No Not sure (explain)

Hair Information (Part B only) What is your natural hair color? Please circle below Black Brown Blonde Red Grey

How many times a week do you wash your hair? ______

Do you use hair treatments of any kind? Yes No

If yes, please circle which treatments you use below and list the most recent time you have treated your hair Dyeing Bleaching Straightening Permanent wave (“Perm”) Other Date(s)_____

Did you use any hair product today? Yes No If yes, please circle below. Gel Mousse Hairspray Wax Other

When was your last haircut? Date______

PROMIS Sleep Disturbance short form This scale is previously copyrighted material.

Penn State Worry Questionnaire – Abbreviated This scale is previously copyrighted material.

Positive and Negative Affect Schedule – Expanded Form

This scale is previously copyrighted material.

Subjective Cognitive Complaints - Everyday Memory Questionnaire This scale is previously copyrighted material.

Dementia Worry Scale

This scale is previously copyrighted material.

Perceived Social Support and Negative Social Interactions

This scale is previously copyrighted material.

Activities of Daily Living

This scale is previously copyrighted material.

Positive Aspects of Caregiving Questionnaire

This scale is previously copyrighted material.

Resource Utilization

This scale is previously copyrighted material.

Personal barriers to utilizing resources

This scale is previously copyrighted material.

Neuropsychiatric Inventory Questionnaire

This scale is previously copyrighted material.

APPENDIX E: SUPPLEMENTAL TABLE

Supplemental Table 1. Male and female caregiver characteristics Variable Men Women t/Χ2 p d/φ (n = 6) (n = 23) Care recipient age 77.83 ± 9.19 83.14 ± 9.98 1.17 .25 0.55 Care frequency 1.33 ± 0.52 1.57 ± 0.87 0.63 .53 0.33 Length of care (months) 40.00 ± 27.01 49.71 ± 34.49 0.63 .53 0.31 Time spent caring (hrs/week) 45.83 ± 63.28 48.26 ± 61.42 0.08 .93 0.03 Live with care recipient (1 = yes) n = 4 n = 6 2.90 .09 0.33 Genetically related (1 = yes) n = 4 n = 14 1.29 .73 0.22 Caregiver Burden 32.5 ± 12.39 34.33 ± 16.87 0.25 .81 0.12 Time Burden 12.83 ± 3.60 12.00 ± 3.94 -0.47 .65 0.21 Developmental Burden 3.67 ± 3.72 2.76 ± 3.75 -0.52 .61 0.24 Emotional Burden 5.33 ± 4.08 6.29 ± 4.37 0.48 .64 0.23 Social Burden 5.67 ± 3.72 7.24 ± 4.62 0.76 .45 0.37 Physical Burden 5.00 ± 4.34 6.05 ± 4.12 0.54 .59 0.24 Positive Aspects 24.5 ± 10.37 28.62 ± 8.22 1.02 .32 0.44 ADL 29.00 ± 10.35 27.29 ± 9.07 -0.40 .69 0.18 Barriers 1.67 ± 1.86 1.36 ± 1.36 -0.47 .66 0.19 Symptom severity 6.83 ± 5.49 10.70 ± 6.63 1.29 .21 0.63 Caregiver distress 20.83 ± 13.01 17.65 ± 12.02 -0.59 .58 0.25 Service use 3.83 ± 2.78 4.41 ± 4.74 0.28 .78 0.15 Future service use 11.17 ± 14.41 3.68 ± 6.42 -1.24 .27 0.67 Perceived Stress 16.67 ± 7.81 15.05 ± 8.79 -0.41 .69 0.19 Depressed Mood 6.50 ± 7.09 11.86 ± 12.67 0.99 .33 0.52 Anxiety 1.00 ± 1.26 1.45 ± 1.79 0.58 .57 0.29 Social Support Total 29.83 ± 6.46 26.23 ± 5.84 -1.31 .20 0.58 Tangible Support 8.00 ± 2.09 5.86 ± 1.86 -2.43 .02 1.08 Emotional Support 12.33 ± 3.50 11.14 ± 2.99 -0.84 .41 0.37 Informational Support 9.50 ± 3.21 9.22 ± 2.45 -0.23 .82 0.09 Note. ADL = Activities in Daily Living

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