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P

REDICTORS OF

D

EPRESSION WITHIN THE

C

AREGIVERS

OF

D

EMENTIA

P

ATIENTS

Melissa G. Sneed

Faculty Co-Authors and Sponsors: Nancy H. Wrobel and Robert W. Hymes

Department of Behavioral Sciences, University of Michigan-Dearborn

Abstract

The Aging, Demographics, and Memory Study (ADAMS) is the first population-based study of dementia in

the United States to include subjects from all regions of the country. A sample of 856 individuals age 70 or

older received an extensive in –home clinical and neuropsychological assessment to determine a diagnosis of

normal, ‘cognitive impairment, not demented’ (CIND), or demented. Variables associated with patient’s

cognitive levels and the caregivers’ strains were assessed. Specific measures in this study included

socio-demographic variables; patient’s cognitive levels were measured using the short form of the Informant

Questionnaire on Cognitive Decline in the Elderly (IQCODE), Mini-Mental State Exam (MMSE),Dementia

Severity Rating Scale (DSRS) and activities of daily living from the Blessed Dementia Scale. Caregivers

completed an abbreviated form of the Center for Epidemiologic Studies Depression Scale (CES-D), and

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The National Institute on Aging (NIA) funded the Aging, Demographics, and Memory Study

(ADAMS), which is a supplement to the Health and Retirement Study (HRS). The HRS is sponsored by the

NIA (grant number NIA U01AG009740) and is conducted by the University of Michigan. ADAMS has

provided an opportunity for conducting in-depth investigations related to the impact of dementia on formal

health care utilization, informal caregiving, and the total societal costs of this care. ADAMS not only

gathered information on the participants, but also on the caregivers (HRS, 2007).

This study initially originated when the HRS formed a partnership with a research team from Duke

University, led by Brenda Plassman, director of the Epidemiology of Dementia Program. This partnership

was created to conduct in-person clinical assessments for dementia on selected HRS respondents. This

research is the first of its kind to conduct in-home assessments of dementia in a national sample that is

representative of the U.S. elderly population. The field work began in August 2001 and was completed by

March 2005 (HRS, 2007).

The study reported here focuses on caregivers of the elderly and possible predictors of depression in

caregivers. Dementia occurs in 1% of people age 65-69 and around 24% of people 85 or older (Alzheimer’s

disease International, 2000). Dementia patients may endure the loss of their functional and mental status. The

decline in cognitive functioning, the ability to perform activities of daily living (ADLs) [such as bathing and

dressing], and the instrumental activities of daily living (IADLs) [such as housework and paying bills] adds to

the amount of work performed by the caregiver (Sherwood, Given, Given, & Von Eye, 2005).

Caregivers play an important role in the life of people they care for. Studies have shown an increase of

knowledge in the medical fields contribute to an increase in the lifespan of the elderly population. The

demand for caregivers will also expand (Kang, 2006). Furthermore, the care for the caregiver is an essential

factor in society and should be acknowledged since the population of the elderly is on the rise. It’s also an

important factor in society that caregivers receive care, since they are the ones maintaining the elderly

community (Kang, 2006).

Estimates show that between 46% and 83% of dementia caregivers experience depression

(Alspaugh, 1999). Emotional stress is found to be a major factor among Dementia caregivers. This study

seeks to identify the predicting factors of depression in caregivers of dementia patients. Previous research has

found that caregivers’ depressive symptoms indicate a mood disturbance that results from the demands

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impact of actual cognitive and functional impairment in the care recipient on the caregiver, but also examines

the impact of the caregivers’ perception of decline and reported strain.

Method

Participants

The participants consisted of 1770 individuals that were a random sample taken from the national

representative Health and Retirement Study (HRS) sample. Out of the 1770 participants, there were 856

subjects (a response rate of 56%) who completed the initial assessment. There were a total of 227 subjects

(12.8%) who died before an initial assessment could be completed. There were 687 subjects (38.8%) who

declined an assessment or did not participate for other reasons such as no informant or an illness. The sample

was composed of participants within the U.S. Census Region.

Participants were comprised of 501 females (59%) and 355 males (41%). Ethnicity was comprised of 84

Hispanic (10%), 159 Black, non Hispanic (19%), and 613 White, non Hispanic (72%). Their ages ranged

from 70 to 110 (M = 81.78, SD = 7.22). The number of subjects participating included 120 from the Northeast (14%), 167 from the Midwest (19%), 239 from the South Atlantic (28%), 163 from the South Central (19%)

and 167 from the West (19%). There are 763 participants (89%) who resided in the community and 93

participants (11%) resided in nursing homes.

This study also included data on 746 informants. They were comprised of 189 males (25%) and 540

females (72%). The informants’ ages ranged from 20 to 95. There are 375 informants (50%) who live with

the participants. Of the 746 informants, ethnicity was comprised of 548 White/Caucasian (74%), 129

Black/African American (17%) and 46 other (6%) with 23 missing data (3%).

Measures

Abbreviated Center for Epidemiologic Studies Depression Scale (CES-D): Developed by Radloff (1977). This scale contains 5 items, with 2 of the questions recoded in order for all responses to reflect scores

consistent with depression. The responses were then totaled to determine their final score. It is a quick

self-test and measures depressive feelings and behavior. Research by Radloff (1977) shows the Center of

Epidemiologic Studies Depression (CES-D) Scale is the most frequently used to determine depression in

caregivers. Findings have determined many patterns of depressive symptomology in caregivers as well as

dementia patients (Alspaugh, 1999).

Mini Mental State Exam (MMSE): Developed by Folstein, Folstein, and Fanjiang, (2001). The MMSE is a test that figures prominently in research on dementia (Teri, 1991). This scale was developed as a screening

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tool which assesses cognitive functioning. The MMSE consists of 22 items (orientation (10), language (8)

and one item of each: registration, memory, spelling backward, and construction) with a maximal obtainable

score of 30. . The MMSE score is obtained from the summed scores of all items. Any score over 27 is

normal; scores of 20-26 indicates some cognitive impairment; 10-19 suggests moderate to severe cognitive

impairment; below 10 indicates very severe cognitive impairment. The validity and reliability of the MMSE

was originated when the scale was successful in separating 206 patients with a variety of psychiatric disorders

such as depression, depression and cognitive impairment, and dementia (Folstein, Folstein, & McHugh,

1975).

Blessed Dementia Rating Scale (BDRS): (Morris, Heyman, Mohs, Hughes, Van Belle, Gillenbaum, Mellits, Clark, & the CERAD investigators 1989; Blessed, Tomlinson, & Roth 1968). This scale

characterizes the performance of Activities of Daily Living that are affected by dementia. This form is

completed by the informant and determines the loss of abilities due to mental or physical reasons. The BDRS

scale score ranges from 0-17 [mild dementia (score: 0-5), moderate dementia (score: 6-11), and severe

dementia (score 12-17).]. The informant related whether the subject had no loss, some loss or severe loss of

ability in areas of cognition and everyday activities. The ADLs were scored on the level of assistance the

subject needed on a 3 point scale. For all items the informant noted the need for assistance due to mental or

physical reasons. The BDRS has good validity, good test-retest reliability and internal consistency

(Pena-Casanova, Monllau, Bohm, Aquilar, Sol, Hernandez, & Blesa, 2005).

Dementia Severity Rating Scale (DSRS): (Clark & Ewbank, 1996). This is a 12 item scale that assesses domains that are affected by Alzheimer’s disease. It is a multiple choice questionnaire completed by the

informant. The DSRS total score is obtained from the summed scores across all items. Item 12 response is on

a 10-point likert-type scale that is reflected as a percentage. It assesses the severity of cognitive functional

impairment. The DSRS is high in both reliability and validity. It has ideal characteristics that are valuable in

clinical trials (Clark & Ewbank, 1996).

Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): Developed by Jorm (1994). The short form was used containing 16 questions that deal with the assessment of memory and cognitive

functions compared to 2 years ago. The scores were summed then divided by 16. A score of 3 means that the

subject is rated on average as having “no change” in functioning; a score of 4 means an average of “a bit

worse”; a score of 5 means an average of “much worse”. This form is filled out by the informant. It carries

both high validity and reliability. Jorm reported test-retest reliability for over three days to be 0.96 and 0.75

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Mental and Emotional Strain Scale: This is a 6 question scale taken form the Caregiver Health Effects Study and measures caregiver strain. The Mental and Emotional Strain answers were recoded to eliminate

skipped or don’t know responses. The Caregiver Health Effects Study was a secondary study to the

Cardiovascular Health Study, which examined spousal caregivers. The Caregiver Health Effects Study

revealed that only half of the providers reported mental or physical strain associated with caregiving:(Schulz,

Newsom, Mittelmark, Burton, Hirsch & Jackson, 1997; Schulz & Beach, 1999).

Procedure

In order to gain access to the Aging and Demographics Memory Study (ADAMS) datasets, a Health and

Retirement Study Sensitive Health Data Use Agreement form was submitted to the Health and Retirement

Study DUA Review Committee. Once the authentication process was completed, authorization to access the

ADAMS dataset was given.

Results

The stepwise regression revealed the IQCODE to be the highest predictor of caregiver depression.

Variables not entering prediction included the DSRS, BDRS and MMSE. The IQCODE explained 6.3% of

the variance (adjusted R² = .060) in Caregiver’s Depression (F (1,320) = 21.603, p<.001) (See Table 1).

In the block wise regression the first variable entered was the MMSE which assessed the care

recipients’ cognitive status. Lower scores on the MMSE predicted depression in the caregivers. The second

step entered both the BDRS and the DSRS variables which looked at the recipients functioning abilities. The

addition of the ADL and IADL measures did not significantly improve upon prediction. The third step

entered the IQCODE variable which deals with the caregivers’ perception of decline. The fourth and final

step included entering the Mental and Emotional Strain variable. Adding in the perception of the care

recipients decline in abilities (IQCODE) resulted in a significant F change (F (4,254) =6.983, p<.001).

Providing an increment in the prediction of caregiver depression the mental and emotional strain revealed TABLE 1

Stepwise Regression Predicting Caregiver Depression from Cognitive and ADL Data

Step and Predictor B SE B Beta R square change F change

IQCODE .418 .090 .251** .063 21.603**

Note: IQCODE: R²=.063, (adj. R²=.060), F(1,320)=21.603, p<.001 **p<.001

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(adjusted R² = .160), a relationship between feeling strained and becoming depressed (F (5,253) =10.830,

p<.001), and also improved the prediction of depression when included along with the MMSE & IQCODE

(See Table 2).

Discussion

The IQCODE results reveal that including a strong relationship with caregiver depression, the

more the caregiver perceives the person declining the more it depresses them. The overwhelming

responsibilities one covers may play a role in their level of depression and anxiety (Ferrara, Langiano, Di

Brango, De Vito, De Ciaoccio, & Bauco, 2008). The severity of Alzheimer’s disease and the burden of

responsibilities are determining factors of a caregiver’s level of depression. This study supports this notion,

but also provides information about the relative impact of various experiences on the caregiver. While lower TABLE 2

Block Wise Regression Demonstrating Incremental Prediction of Caregiver Depression by Cognitive Status, ADLs/IADLs, Perceived Decline, and Mental and Emotional Strain

Step and Predictor B SE B Beta R square change F change

Step 1: Cognitive Status .018 4.582*

MMSE -.011 .005 -.132* Step 2: ADLs/IADLs .001 .159 MMSE -.011 .005 -.128* Blessed .020 .047 .052 DSRS -.009 .016 -.067 Step 3: Caregivers Perception of Decline .080 22.649** MMSE -.011 .005 -.134* Blessed -.020 .046 .050 DSRS -.009 .015 -.067 IQCODE . 483 .102 .284**

Step 4: Mental and

Emotional Strain .077 23.720** MMSE -.009 .005 -.108 Blessed .025 .044 .064 DSRS -.011 .015 -.081 IQCODE .211 .112 .124 ME Strain .168 .035 .321**

Note: Step 3: R²=.099, (adj. R²=.085), F(4,254)=6.983, p<.001. Step 4: R²=.176, (adj. R²=.160), F(5,253)=10.830, p<.001. **p<.001

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cognitive functioning of the care recipient predicted depression in the caregiver, the addition of problems in

ADLs did not add to the prediction of depression. The caregivers’ perception of decline notably contributed

to the caregivers’ depression. The reported experience of “strain” on the caregiver also significantly

enhanced prediction. Thus, while low cognitive functioning in a care recipient may negatively impact mood,

the caregivers’ perception of decline in the caregiver, and their self-reported level of strain are also strong

contributors to the degree of depression experienced. In summary, this study has helped to gain insight into

the predictors of caregivers’ depression.

References

Alspaugh, M.E., Stephens, M.A., Townsend, A.L., Greene, R., & Zarit, S.H (1999).

Longitudinal patterns of risk for dementia caregivers: Objective and subjective

primary stress as predictors. Psychology and Aging, 14, 34-43.

Alzheimer’s Disease International Fact Sheet 9, (2000). Risk factors of dementia. Retrieved May 8, (2009). From www.alz.co.uk.

Blessed, G., Tomlinson, B.E., & Roth, M. (1968). The association between quantitative

Measures of dementia and of senile change in the cerebral grey matter of elderly

Subjects. British Journal of Psychiatry,114, 797-811.

Clark, C.M., & Ewbank, D.C. (1996). Performance of the Dementia Severity Rating Scale:

A caregiver questionnaire for rating severity in Alzheimer’s disease. Alzheimer Disease and Associated Disorders, 10, 31-39.

Ferrara, M., Langiano, E., Di Brango, T., De Vito, E., Di Cioccio, L., & Bauco, C. (2008).

Prevalence of Stress, Anxiety and Depresión in with Alzheimer Caregivers. Health and Quality of Life Outcomes,6, 93.

Folstein, M.F., Folstein, S.E., & Fanjiang, G. (2001). Mini Mental State Examination: Clinical Guide and User’s Guide. Lutz, FL: Psychological Assessment Resources.

Folstein, M. F., Folstein, S. E., & McHugh, P. R (1975). ‘Mini Mental State: A practical method for grading the cognitive state of patients for the clinician’. Journal of psychiatric research 12, 189-98.

Fortinsky, R., Kercher, K., & Burant, C. (2002). Measurement and correlates of family caregiver

self-efficacy for managing dementia. Aging and Mental Health, 6, 153-160. Health and Retirement Study, ADAMS public use dataset. Produced and distributed by

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The University of Michigan with funding from the National Institute on Aging

(grant number NIA U01AG009740). Ann Arbor, MI, (2009).

Jorm, A. (1994). A short form of the Informant Questionnaire on Cognitive Decline in

the Elderly (IQCODE): development and cross-validation. Psychological Medicine, 24, 145-153.

Jorm, A. (2004). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE):

a review. International Psychogeriatrics, 16, 1-19.

Kang, S.Y., (2006). Predictors of Emotional Strain among Spouse and Adult Child

Caregivers. Journal of Gerontological Social Work, 47(1/2).

Morris, J.C., Heyman, A., Mohs, R.C., Hughes, J.P., van Belle, G., Fillenbaum, G.,

Mellits, E.D., Clark, C., & the CERAD investigators (1989). The Consortium to

Establish a Registry for Alzheimer’s disease (CERAD). Part I. Clinical and

Neuropsychological assessment of Alzheimer’s disease. Neurology,39, 1159-1165.

Pena-Casanova, J., Monllau, A., Bohm, P., Aquilar, M., Sol, J. M., Hernandez, G., & Blesa, R., (2005).

Diagnostic value and test-retest reliability of the Blessed Dementia Rating Scale for Alzheimer’s

disease: from the NORMACODEM project. Neurología: publicación oficial de la Sociedad Española de Neurología.20, 349-355.

Radloff, L.S (1977) ‘The CES-D scale: A self report depression scale for research in the

general population’. Applied Psychological Measurement1, 385-401.

Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C., & Jackson, S. (1997).

Health effects of caregiving: The Caregiver Health Effects Study: an ancillary Study of the

Cardiovascular Health Study. Annals of Behavioral Medicine,19, 110-116.

Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The Caregiver

Health Effects Study. JAMA, 262, 2215-2219.

Sherwood, P.R., Given, C.W., Given, B.A., & Von Eye, A. (2005). Caregiver Burden and

Depressive Symptoms: Analysis of Common Outcomes in Caregiver of Elderly

Patients. Journal of Aging and Health, 17, 125.

Teri, L., & Wagner, A. (1991). Assessment of depression in patients with Alzheimer’s disease:

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**Note: This analysis uses Early Release data from the Health and Retirement Study, ADAMS, sponsored by

the National Institute of Aging (grant number NIA U01AG009740) and conducted by the University of

Michigan. These data have not been cleaned and may contain errors that will be corrected in the Final Public

References

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