Caregivers of physically and mentally impaired elderly : an investigation of burden and depression by Susan Churchill Barnett

Transcription

1 Caregivers of physically and mentally impaired elderly : an investigation of burden and depression by Susan Churchill Barnett A thesis submitted in partial fulfillment of the requirements for the degree of Master of Education Montana State University Copyright by Susan Churchill Barnett (1989) Abstract: The purpose of this study was to examine differences in burden and depression in caregivers of physically impaired older adults and caregivers of older adults with Alzheimer's disease. The relationship between burden and depression was also examined. Itwas hypothesized that there would be no differences between caregivers of elders with Alzheimer's Disease and caregivers of elders with chronic physical impairments in the areas of caregiver age, ill relative age, length of relationship, and length of illness. It was also hypothesized that caregivers of elders with Alzheimer's disease would be found to be experiencing more burden and depression than caregivers of physically Impaired elders. A positive correlational relationship was hypothesized between burden and depression. The caregivers who participated In this study were recruited through area physicians. Eight were caregivers of older adults with Alzheimer's disease and fourteen were caregivers of older adults with chronic physical impairments. The Zarit Burden Interview and the Beck Depression inventory were the Instruments used to measure burden and depression. The caregivers also completed a demographics questionnaire, t-tests for independent samples yielded no significant differences between caregivers of elders with Alzheimer's Disease and caregivers of elders with chronic physical impairments in the areas of caregiver age, ill relative age, length of relationship, and length of illness. t-tests for Independent samples revealed no significant differences between caregivers of older adults with Alzheimer's and caregivers of older adults with chronic physical impairments in the areas of depression and burden. A statistically significant (p<.05) positive correlation was found between burden and depression. In conclusion, caregivers of elders with Alzheimer's disease and caregivers of elders with chronic physical impairments were found to experience similar amounts of burden and depression and high scores on the Zarit Burden Interview were found to be associated with high scores on the Beck Depression Inventory.

2 CAREGIVERS OF PHYSICALLY AND MENTALLY IMPAIRED ELDERLY: AN INVESTIGATION OF BURDEN AND DEPRESSION by Susan C h u rc h ill B arnett A thesis subm itted in p a rtia l fu lfillm e n t of the requirem ents fo r the degree of M aster o f Education MONTANA STATE UNIVERSITY Bozeman, Montana August

3 ii APPROVAL of a thesis subm itted by Susan C. Barnett This thesis has been read by each member of the thesis com m ittee and has been found to be satisfactory regarding content, English usage, fo rm a t, citations, b ib lio g ra p h ic style, and consistency, and is re a d / fo r subm ission to the College of Graduate Studies. Date C hairperson, Graduate Comm ittee Approved fo r the M ajor Department Head, M ajor Department Approved fo r the College of Graduate Studies Date Graduate Dean

4 m STATEMENT OF PERMISSION TO USE In presenting th is thesis in p a rtia l fu lfillm e n t of the requirem ents fo r a m aster's degree at Montana State U n iv e rs ity, I agree that the L ib ra ry shall make it available to borrow ers under ru le s o f the lib ra ry. B rie f quotations from th is thesis are allowable w ith o u t sp e cia l. p erm ission, provided that accurate acknowledgment of source is made. P erm ission fo r extensive quotation from o r reproduction of th is thesis may be granted by m y m ajor professor, o r in h is /h e r absence, by the Dean o f L ib ra rie s when, in the opinion of e ith e r, the proposed use of the m aterial is fo r sch o la rly purposes. Any copying o r use of the. m aterial in th is thesis fo r financial gain shall not be allowed w ith o u t m y w ritte n perm ission. Signature,= D i r & f v, Dfttfi Jjo rc, /TC ~f~ JcJtfcJ

5 iv TABLE OF CONTENTS Page 1. INTRODUCTION :...I 2. LITERATURE REVIEW...; The E ld e rly... ;... 5 Chronic Physical Im pairm ent and A lzheim er's Disease... 6 Chronic Physical Im pairm ent...6 A lzheim er's Disease...7 C aregivers...i...;... 9 Caregivers of P h ysically Im paired E ld e rly Caregivers o f E ld erly W ith A lzh eim er s Disease L ife Events and Depression...! Statement of the Problem...!...! METHODOLOGY... ;...:... M S - Research Hypotheses Design Statement Sample......' Questionnaire Cover L e tte r Request For In fo rm atio n Inform ation Sheet...23

6 TABLE OF CONTENTS - Continued Page Z a rit Burcten In te rv ie w... : Beck Depression In vento ry Procedures D ataanalysis RESULTS Combined Samples Ttots of Hypotheses Hypothesis I Hypothesis 2...,...31 Hypothesis 3...: Hypothesis Examination of Specific Items DISCUSSION Combinto Samples Examination of the Hypotheses...37 Hypothesis I - Comparison of the Two Groups Hypothesis 2 - Burden Hypothesis 3 - Depression Hypothesis 4 - Relationship Between Burcten and Depression Im plications and L im ita tio n s o f the Study Suggestions fo r Future Research...4 2

7 v i TABLE OF CONTENTS - Continued REFERENCES...43 APPENDICES Page A. Human Subjects Commute Approval L e tte r B. Letter to Area Physicians C. Questionnaire Cover L e tte r...54 D. Request For In fo rm atio n E. Inform ation Sheet F. Z a rit Burden In te rv ie w Beck Depression In ve n to ry H. Thank You Sheet ;,.7 0 I. Caregiver Comments J. Zar.1t Burden In terview Item Means and S ta tistics K. Z a rit Burden In te rvie w Item Means Graph L Z a rit Burden In te rvie w Score D is trib u tio n M. Beck Depression Inventory Item Means and S tatistics N. Beck Depression In vento ry Item Means Graph O. Beck Depression In ventory Score D is trib u tio n P. Inform ation Sheet For Subjects...87

8 v ii LIST OF TABLES Table 1. Combined Sample Demographics... Page Caregiver Demographics... 3, 111 Relative Demographics... 4, Combined Sample S tatistics,,.,.,,,,,,,,,,, Comparison of the Two Groups... 6, Comparison of Z a rlt Burden In te rvie w Scores , Comparison of Beck Depression In ventory Scores Relationship Between Burden and Depression...' , Z a rit Burden In te rvie w Item Means and S ta tistics , Z a rlt Burden In te rvie w Score D is trib u tio n Beck Depression In ven to ry Item Means and S ta tistics 12. Beck Depression In vento ry Score D is trib u tio n...,82 86

9 v iii LIST OF FIGURES Figure Page 1. Z a rlt Burden In te rvie w Means Graph , Beck Depression In vento ry Means Graph

10 Ix ABSTRACT The purpose of th is study was to examine differences In burden and depression In caregivers of p h ysically Im paired older adults and caregivers o f older adults w ith A lzheim er's disease. The rela tio n ship between burden and depression was also examined. Itw a s hypothesized that there would be no differences between caregivers o f elders w ith A lzheim er's Disease and caregivers of elders w ith ch ro nic physical im pairm ents in the areas of caregiver age, i l l re la tiv e age, length of re la tio n ship, and length o f illness. It was also hypothesized that caregivers o f elders w ith A lzheim er's disease would be found to be experiencing more burden and depression than caregivers o f p h ysically Im paired elders. A p ositive co rrela tional relatio n ship was hypothesized between burden and depression. The caregivers who participated In th is study were re cru ite d through area physicians. Eight were caregivers of older adults w ith A lzheim er's disease and fourteen were caregivers of older adults w ith chronic physical im pairm ents. The Z a rit Burden In te rvie w and the Beck Depression In vento ry were the Instrum ents used to measure burden and depression. The caregivers also completed a demographics questionnaire, t - tests fo r independent samples yielded no significant differences between caregivers of elders w ith A lzheim er's Disease and caregivers o f elders w ith ch ro nic physical im p airm e n ts in the areas of caregiver age, i l l re la tiv e age, length o f rela tio n ship, and length o f illness, t - tests fo r Independent samples revealed no s ig n ific a n t differences between caregivers of older adults w ith A lzheim er's and caregivers of older adults w ith chronic physical im p airm e n ts in the areas of depression and burden. A s ta tis tic a lly sig n ifica n t ( p<.05) p ositive c o rre la tio n was found between burden and depression. In conclusion, caregivers of elders w ith A lzheim er's disease and caregivers of elders w ith ch ro nic physical im p airm e n ts were found to experience s im ila r amounts of burden and depression and high scores on the Z a rit Burden In te rvie w were found to be associated w ith high scores on the Beck Depression Inventory.

11 I CHAPTER I INTRODUCTION This study w ill examine the subjective experience o f caring fo r a c h ro n ic a lly i l l parent, spouse, o r re la tive. The experience of caring fo r an older adult w ith A lzheim er's Disease w ill be compared w ith the experience o f caring fo r a p h ysically im paired older adult. It is hypothesized th at a greater degree of burden and level of depression w ill be experienced by caregivers o f older adults w ith A lzheim er's Disease. It is also hypothesized that there w ill be a p ositive rela tio n ship between experience of burden and depression. Mental and physical health care fo r older adults has become an area of increasing concern fo r health care g ivin g professionals. Advanced health care and medical knowledge in the past few decades has led to a co n tin u a lly growing population of older adults. The num ber of persons 6 5 and older has increased from 16 m illio n to more than 2 8 m illio n in the past tw e n ty - fiv e years (S ta tis tic a l A bstract o f the United States, ). W ith th is grow ing segment o f the population come many medical problem s often associated w ith the In firm itie s of increased age. This can include physical and mental problem s fo r w hich the e ld e rly have an increased ris k. The incidence of chro nic physical im p airm e n t tends to Increase w ith chronological age (D ye, ). Common chro nic physical problem s among the e ld e rly population can include a r th r itis, diabetes, cardiovascular problem s, osteoporosis, poor sight and/or hearing, broken bones, and fr a ilt y ( K night, ; W h itb o u rne, ). These problem s can im p a ir the m o b ility of older adults and often re s tric ts th e ir a b ility to care fo r themselves. The ch ro n ica lly im paired older adult can often have d iffic u lty p re parin g meals, dressing, and doing sim ple household chores ( Branch, ). Dementia in the e ld e rly, lik e chronic physical im p a irm e n t, can also

12 2 r e s tr ic t the m o b ility o f the older adult. A lzheim er's Disease, a degenerative organic illn e ss accounts fo r 5 0 to 6 5 per cent of dementia cases in older adults ( Katzman, ). A lzheim er's Disease begins w ith m em ory loss and/or personality changes and eventually leaves the a fflicted older adult unable to perform even the sim p lest task. The older adult w ith Alzheim er's Disease eventually su ffe rs a complete loss o f recognition o f h is /h e r surroundings and environm ent ( Mace & Rabins, ). Each o f these physical and organic d e b ilitie s can range from m ild to severe re q u irin g va ry in g amounts o f care. Caring fo r the m entally a nd/or p h ysically im paired older adult tends to take place in an in s titu tio n a l o r home setting. In an in s titu tio n a l setting care is provided by trained professionals w ith experience in caring fo r im paired e ld e rly persons. Caregivers in the home tend to be a spouse, c h ild, o r close relative. The care p ro vid e rs in the home setting are often untrained and Inexperienced. Spouse caregivers are often e ld e rly themselves and have reduced strength, stam ina, and often lim ite d funds. Caregivers who are ch ild re n of the im paired older person often have a job and fa m ily of th e ir own to care fo r. The p h ysica l, fin a n c ia l, and emotional s tra in o f ca ring fo r an im paired older adult can be great ( Mace & Rabins, 1 981). Caregiving its e lf can be p hysically demanding. L iftin g, m oving, and transporting im paired adults can be e xtre m e ly d iffic u lt fo r the caregiver ( Mace & Rabins, ). The financial stra in s of caregiving stem from the special needs of W m p a lr e d older adult. Quite often caregiving in Its e lf becomes a fu ll- tim e job w hich requires the w o rkin g caregiver to give up h is /h e r job o r h ire re sp ite care fo r the Im p a irs j older adult. The financial and physical demands o f caregiving often co n trib u te to the emotional s tra in fe lt by the caregiver ( S iiverstone, ). The social network of the caregiver is often

13 3 re s tric te d due to the lim ite d amount of tim e that the caregiver has fo r social and recreational purposes, The home often becomes a type o f p rison fo r the caregiver ( Mace & Rabins, ). L ife events have been connected to the onset o f depressive illn e s s fo r many years ( W a rh e it, , P a ykel, P ru s o ff, & U hlenhuth, , V inokur & S e lzer1 1975). Life events may be defined as desirable o r undesirable occurences In life that re q u ire readjustment. Excessive changes make adjustm ent d iffic u lt and produce stress (V in o k u r & S elzer ). M oving, m arria ge, b ir th of a c h ild, illn e ss, divorce o r separation, death of a spouse o r close re la tiv e are a ll occurrences w hich could be term ed life events ( P aykel, M yers, D ienelt, K le rm a n, Lindenthal, & Pepper; ). In p a rtic u la r the chro nic illn e s s o f a loved one can be a stre ssfu l life event fo r the caregiver ( C olerick & George, ). C hronic illn ess brings about an irredeem able change in the life of the caregiver and the c h ro n ic a lly i l l person. When expression re su lts from the stre ssfu l life event o f caring fo r a c h ro n ic a lly im paired elder the q u a lity o f caregiving can deteriorate. The em otional, p h ysical, and fin a n cia l s tra in of caregiving can be Immense. Becoming a caregiver fo r a spouse, parent, o r re la tiv e can be devastating. The news that the loved one is c h ro n ic a lly i l l can in its e lf cause stress. It b rin g s about an irredeem able change in the life of the caregiver and the i l l person. The c h ro n ic a lly i l l person m ust slo w ly give up h is /h e r Independence. The caregiver also gives up h is /h e r independence and freedom. The loss o f freedom and independence gives way to a burden o f re s p o n s ib ility (S co tt, Roberto, & Hutton, ). Every waking hour is given to the i l l person. The amount o f burden experienced by caregivers of c h ro n ic a lly im paired older adults has been found to be associated w ith feelings o f depression (D rin k a, S m ith, & D rin ka, ). Caregivers in

14 4 stre ssfu l o r depressed states could be unable to provide adequate care fo r th e ir im paired relatives. This m ight increase the num bers o f im paired e ld e rly being institutio nalize d ( M orycz, 1 985). The physical and emotional needs o f the caregiver are often overridden by the needs of the i l l fa m ily member. The needs of the caregiver are o f p rim e Im portance both fo r m aintaining th e ir w ellbeing and that of the e ld e rly they care fo r. An exploration o f these needs w ill provide the medical and mental health com m unity w ith avenues upon w hich to attem pt to meet these needs. Caring fo r c h ro n ic a lly im paired elders has been associated w ith feelings of burden and depression in caregivers. It is possible that the amount o f burden.and depression experienced by caregivers is related to the degree of mental incapacity in the c h ro n ic a lly im paired older adult. Caring fo r a p h ysically Im paired older adult re la tiv e can be stre ssfu l because of the tim e, fin ancia l and physical demands on the caregiver. Caring fo r an older adult re la tiv e who is s u ffe rin g from A lzheim er's Disease has the potential to be even more stre ssfu l because of the stresses mentioned above and the increasing mental incapacity of the older adult. The older adult who is su ffe rin g fro m A lzheim er's Disease can become increasingly unpredictable and often unpleasant. As A lzheim er's Disease progresses the v ic tim su ffe rs fro m m emory loss, the in a b ility to relate to others in a caring fashion, and can often become angry and com batitive. These problem s, coupled w ith the other stresses n o rm a lly associated w ith caregiving, could re s u lt in greater burden and depression in caregivers of older adults w ith A lzheim er's than fo r other caregivers,

15 5 CHAPTER 2 LITERATURE REVIEW L ite ra tu re reviewed below examines stress and depression In caregivers o f organically and p h ysically Im paired elderly. This chapter Is organized to acquaint the reader w ith the c u rre n t knowledge of the needs and problem s of caregivers. In order to do th is the fo llo w in g areas w ill be explored: the e ld e rly, common ch ro n ic physical problem s of the e ld e rly, the sym ptom s, progression, and problem s o f A lzheim er's Disease, c u rre n t research concerning the problem s Inherent In caregiving, stress and depression. The E ld e rly As a grow ing segment o f the population, the physical and mental health needs of the e ld e rly are substantial. E ig h ty -s ix percent of the e ld e rly population have some type of chro nic health problem ( B u tle r, ). However, o nly an estimated 5 percent o f persons over s ix ty - fiv e c u rre n tly reside In some type o f In stitu tio n (Siegel, 1 977). Elders re q u ire more doctor v is its and spend m ore tim e In the hospital than do the re st of the population. The average hospital stay o f an e ld e rly person is 14 days ( B u tle r, ). Emotional and mental Illness tends to Increase over the life cycle, Hypochondriasis is common among the e ld e rly and the Incidence o f depression tends to Increase w ith age. E ld e rly w hite males have the highest suicide rate In the United States ( B u tle r, ).

16 6 Chronic Physical I m pairm ent and A lzheim er's Disease Chronic Physical Im nm rm ont The num ber of adults age 65 and older has steadily increased over the past tw e n ty -fiv e years and is projected to continue to increase (S ta tistical A bstract o f the United States, ). The incidence of chro nic physical im pairm ents tends to ris e sh a rp ly with.age in those adults aged 4 5 to 6 4 and d ra m a tically among older adults age 6 5 and older (In s titu te of Medicine and National Research C ouncil, ). S e venty-five percent of the population of older adults 65 and older su ffe r from at least one chronic condition and h alf of th is population suffers from m ore than one chro nic condition ( R iley and Foner ). Common chro nic diseases and physical im pairm ents w hich plague the older adult population are cardiovascular problem s, a r th r itis, problem s w ith sight and hearing, diabetes, and ch ro nic d is a b ility due to fa lls and in ju rie s (R ile y and Foner, ; Agate, ; Dye, 1 985). Cardiovascular disease tends to begin at a young age but reaches a severe, chronic stage in older adulthood ( Lakatta, ). Cardiovascular disease accounts fo r 7 2 percent of a ll deaths of adults over the age o f s ix ty - fiv e ( Dye, ). Shortness o f breath, reduced tolerance fo r e xertio n, lethargy, confusion and depression often affect the older adult w ith cardiovascular disease (Agate, ). The a c tiv itie s of tw e nty-one percent of older adults is lim ite d because of a r th r itis (R ile y & Foner, ). A r th r itis is a disabling condition of the jo in t which can be e xtre m ely painful. Often older adults s u ffe rin g from a r th r itis are at tim es w heelchair-bound o r are in need of some type of w alking aid (Agate, ). A r th r itis can affect jo in ts in the hands, shoulders, hips, knees, feet, spine, and other areas of the body and can often re s u lt in d efo rm ities of the jo in t (Agate, ). Im pairm ents in vision and hearing affect most older

17 7 adults to some degree ( R ile y & Foner ). Presbyopia, the in a b ility o f the c ry s ta llin e lens o f the eye to focus on objects close to the eye, eventually affects a ll older adults. This is due to thickening of the c ry s ta llin e lens ( S ekular & Blake, ). Cataracts, opacity of the c ry s ta llin e lens, plague many older adults and can at tim es re s u lt in blindness. Failing vision can severely lim it the a b ility of older adults to care fo r themselves (Agate, ). As human beings age, the a b ility to hear high frequencies tends to decrease (presb ycusis). Young humans can hear frequencies as high as 2 0,0 0 0 Hz. By the age o f seventy frequencies higher than 6,0 0 0 Hz are inaudible ( Sekular & Blake, ), Loss of hearing often isolates the older adult fro m the w o rld around h im /h e r (Agate, ). Diabetes is common among older adults w ith f if t y percent having some fo rm of diabetes ( Dye, ). Diabetes can have serious com plications fo r older adults. Some of the more serious com plications are those of the visual and vascular systems. Diabetes can lead to blindness and gangrene re s u ltin g in amputation from vascular system problem s (Agate, ). Seventy percent of deaths due to fa lls occur in those s ix ty - fiv e and older. Older adults are often severely disabled by fa lls and other types of in ju rie s ( Hogue, ), The f r a ilt y of older adults often worsens in ju rie s and fra ctu re s are common. Hospital stays due to in ju rie s are often long and arduous fo r the older adult. In ju rie s tend to sap the confidence o f the older adult, severely c u rta il independence and often lead to fu rth e r physical breakdown (Agate, ). A lzheim er's Disease In , A lois A lzheim er reported a peculiar dementing illn e ss w hich he observed in a 5 1 year old woman. The woman was fo rg e tfu l, paranoid and b iz a rre to a degree re q u irin g hospitalization. The patient became pro gressive ly co gnitive ly and em otionally im paired and

18 8 died fo ur and a h a lf years a fte r the onset of the disease. A lzheim er term ed th is malady senile dementia o r dementia o f the A lzheim er type ( Bondareff ; Mace & Rabins, 1981). M eier ( ) estimated that more than 20% of the people who reach age eighty w ill su ffe r from a moderate to severe form of dementia. Very few causes o f dementia are treatable o r reve rsib le. The most common chronic irre v e rs ib le form of dementia is A lzheim er's Disease (Nee, P o lin s k y, Eldridge, W e ingarte r, S m allberg1& Ebert, 1 983). A lzheim er's Disease affects the cerebral cortex of the bra in ( Bondareff ). It is characterized by senile plaques, n e u ro fib rilla ry tangles, granuiovacuaolar s tru ctu re s, and an o verall loss o f neurons. Senile plaques are masses of degenerated cell m atter that occur in the spaces between cells. They in te rfe re w ith messages w hich tra ve l from cell to cell in the brain. N e u ro fib rilla ry tangles are tangled p ro tein fib e rs w hich appear inside b ra in ce lls and cause the ce lls to s h rin k and atrophy. Granulovacuaolar stru c tu re s are sacs fille d w ith flu id and g ra n u la r m aterial that accumulate in the hippocampus ( Z a r it, ). Senile plaques and n e u ro fib rilla ry tangles are found in a ll people in num bers that increase w ith age. The num ber o f senile plaques and n e u ro fib rilla ry tangles is lim ite d in most n o rm a lly functioning older people. People w ith A lzheim er's Disease possess a bnorm ally large num bers of senile plaques and n e u ro fib rilla ry tangles (W e lls,! ). The c lin ic a l features of A lzheim er's Disease were described by Semple, Sm ith, and Wash ( ). They reported that the onset of A lzheim er's Disease is u sually a gradual one. Short te rm m em ory is often im p aired, w h ile long term m em ory usually rem ains in ta ct in the e a rly stages o f the disease. The a fflicte d person's range o f interests decreases, affect is blunted, and concern fo r the w elfa re of others often dim inishes, Depressive sym ptom s are often common in. the e a rly stages of the A lzheim er's Disease. In addition to the m em ory im p a irm e n t there tend to be general in te lle ctu a l deficits. The A lzh eim er's Disease patient's vocabulary becomes

19 9 Im poverished and phrases and tenses are often sim p lifie d, th e r e is u sually dressing apraxia (th e In a b ility to perform a series of purposeful movements); agnosia (th e p a rtia l or total in a b ility to attach meaning to sensory im p ression); and geographic, tim e, space, and person disorientation. The personality its e lf deteriorates. As the disease progresses the Alzheim er's Disease patient becomes pro gressive ly Isolated from visual and a ud ito ry contact w ith the environm ent. Speech is reduced to a babble. D uring the fin a l stages of A lzheim er's Disease emotional responses tend to be absent o r are replaced by loud, abnormal laughter and moaning. Im passivity of expression, r ig id ity, and disorders of posture, stance, movement, and m uscular tone become prom inent as the disease progresses. Extrem e weight loss has been noted in the fin a l stages of the disease. Caregivers Caregivers of P h ysically Im paired E ld erly Many adults age 6 5 and older su ffe r from one o r more ch ro nic physical im pairm ent (R ile y & Foner, 1 968). Older adults w ith ch ro nic physical im p airm e n ts often need some type of support from re la tive s or friends. Cantor ( ) interview ed caregivers of the fr a il e ld e rly in order to better understand how caregiving im pacts the life of the caregiver. The o ve rrid in g, problem was found to be emotional s tra in of dealing w ith Increasing fr a ilt y in a person to whom one is close, It was also found that the closer the emotional bond between the caregiver and fr a il older adult, the more stre ssfu l the caregiving ro le (C antor, ). Caregiving support needed by im paired older adults can range fro m lim ite d to extensive. Sanford ( ) surveyed f if t y caregivers o f p h ysically and m entally im paired older adults. Incontinence, night wandering, and im m o b ility were found to be problem s least tolerated by caregivers. These problem s are ones w hich would re q u ire a maxim um of tim e and e ffo rt from

20 10 the caregiver and th erefore are less easily tolerated. This suggests that intolerance fo r caregiving increases w ith s e v e rity o f im pairm ent. Alm ost h a lf of the caregivers reported a re stricte d social life and one quarter reported an in a b ility to leave the im paired older person fo r more than one hour ( Sanford, ). The physical demands of caregiving can often be immense. Everyday duties can often include feeding, bathing, liftin g, dressing, and often diapering. These sim p le tasks can be d iffic u lt w ith a baby o r sm all child. The size, w eight, and compliance of the older adult can even fu rth e r com plicate these tasks. Financial s tra in s of caregiving a rise from the special needs o f the im paired older adult. Quite often caregiving in its e lf becomes a fu ll- tim e job w hich requires the w o rkin g caregiver to give up h is /h e r job o r h ire resp ite care fo r the im paired older adult. The fin ancia l and physical demands o f caregiving often co n trib u te to the emotional s tra in fe lt by the caregiver ( S iiv e rstone, 1 985). Medical costs can Include hospitalization, pharm aceuticals, and doctor v is its. The im paired older adult often needs special equipment such as; w heelchairs and w alke rs, commodes, shower and bath equipm ent, hoists fo r liftin g, and clothing w hich can be easily put on o r removed. The social netw ork o f the caregiver is often re s tric te d due to the lim ite d amount o f tim e that the caregiver has fo r social and recreational purposes. The home often becomes a type of prison fo r the caregiver ( Mace & Rabins, 1 981). Caregivers of E ld e rly w ith A lzheim er's Disease A lzheim er's Disease often begins w ith m em ory loss and ir r it a b ilit y and resu lts in a complete in a b ility to care fo r one's self, recognize loved ones, and communicate w ith others (Sem ple, S m ith, and Wash; ). A lzheim er's Disease affects not o n ly the person afflicted w ith the disease, but the person's fa m ily as w ell. At some point the person w ith Alzheim er's

21 Disease req uires assistance fro m a fa m ily member o r friend. This need fo r help Increases over tim e u n til constant care is required. Caring fo r a person w ith A lzheim er's Disease becomes a fu ll tim e job fo r w hich most people are not trained ( Maletta & Hepburn, 1 986). What makes A lzheim er's Disease p a rtic u la rly stre ssfu l is a combination of the a fflicte d person's mental decline and loss of independence. The person w ith A lzheim er's Disease is In te lle ctu a lly dying (O ry, W illia m s, E m r, Lebowitz, Rabins, Sallow ay1sluss-radbaugh, W o lff & Zarit, 1 985). The caregiver of an A lzh eim er's Disease patient experiences a great deal of burden w hich O ry, et al. ( ) define as the Im pact o f the changes In cognition and behavior o f the patient w ith A lzheim er's Disease on the fa m ily, and the patient's subsequent need fo r care and supervision. In a study designed to investigate the m ultidim ensional p ro pertie s o f burden in caregivers ( Poulshock & D iem llng, ), associations between elder Im p a irm e n t, burden, Impact on fa m ily life, and depression w ere explored. Mental im p airm e n t in elders and the burden experienced by th e ir caregivers was found to be associated. High levels o f burden have been found to be associated w ith nursin g home placement (Z a rit, Todd, & Z a r it, ). The more burden the caregiver experiences the higher the chances the i l l re la tiv e w ill be institutio na lize d. Cantor ( ) found that the most severe burden was fe lt in the areas of free tim e, socializing, le isu re p u rs u its, and household chores. The caregivers no longer had tim e fo r outside Interests due to the tim e spent caring fo r th e ir fa m ily member a fflicte d w ith A lzheim er's Disease. Social Isolation ( Wasow, ; M orycz, ; M aletta & Hepburn, ) is another area that causes feelings o f burden among caregivers. The actual caregiving Is a tim e consuming job that affords the caregiver v e ry little free tim e. The long progressive nature of A lzheim er's Disease often causes frie n d s and re la tive s to avoid the afflicted person.

22 12 The avoidance also distances the frie n d s and re la tive s from the caregiver. As A lzheim er's Disease progresses Itbecom es Increasingly d iffic u lt to take the fa m ily member out of the home. This tends to isolate the caregivers and make them feel as i f they are trapped w ith the fa m ily member afflicted w ith A lzheim er's Disease. In a study w hich investigated the association between support and burden in caregivers, Scott, Roberto, & Hutton ( ), found that caregivers who fe lt they w ere not receiving support from others tended to experience more burden than did caregivers who fe lt they were receiving support from others. Support groups fo r patients and caregivers tended to decrease the amount of burden experienced by caregivers (W inogrond, Fisk, K irs lin g, & Keyes, 1 987). Spouses, c h ild re n, and frie n d s of the person a fflicted w ith A lzh eim er's Disease most often assume the ro le of caregiver. The relatio n ship between amount o f burden fe lt by the. caregiver and the closeness o f the ca re give r's relatio n ship w ith the a fflic te d person has been explored and d iffe rin g results'have been found; Some studies have found th at the closer the relatio n ship between the person w ith A lzheim er's Disease and the ca re g ive r, the higher the degree of burden fe lt by the caregiver (Grad & S ainsb ury, ; Aronson, Levin, & L ip kow itz, 1984,- C antor, ). This fin ding could be due to the emotional s tra in of watching a loved one slo w ly deteriorate. O ry et al. ( ), in a review on c u rre n t research on A lzheim er's Disease and caregivers stated that the better the relatio n ship between caregiver and Alzheim er's v ic tim and caregiver the less burden experienced. No source was given fo r th is fin d in g, therefore the o rig in s o f the statement are unknown. Thompson and Doll ( ), in a study which examined the emotional and social costs of caregiving interview ed 125 fa m ily caregivers of the m entally ill. No sig n ificant rela tio n ship between the closeness of the A lzheim er's patient and the caregiver in re la tio n to the amount of burden fe lt by the caregiver was found.

23 13 One of the most d iffic u lt problem s faced by. some caregivers Is that o f ro le reversal (Aronson, Teuslnk & M ahler, ). The person afflicted w ith A lzh eim er's Disease becomes more and m ore dependent on the caregiver. This dependence means that they need to be cared fo r as i f they w ere sm all children. Temper ta ntru m s m ust be dealt w ith, diapers changed, and the i l l person may need to be hand fed. C hildren often fin d i t v e ry d iffic u lt to assume the ro le of caregiver to a parent w ith A lzheim er's Disease, a parent that may have been seen as strong and in vin cib le. S tra in s of ch ild re n caring fo r parents w ith A lzheim er's Disease are often compounded by intergenerational difference (C antor, 1 983). In the case of A lzheim er's Disease the caregiver m ust, in effect, become parents to th e ir own parents. Husbands ty p ic a lly have tro u b le assuming the ro le that th e ir wives once occupied. They tend to have d iffic u lty p re parin g meals and doing household chores in addition to p e rfo rm in g the fu ll tim e job of caregiving. W ives also have tro u b le assuming the ro le of caregiver. Often husbands have taken care o f finances and household re p a irs fo r years, and i t is freq ue n tly d iffic u lt fo r the w ife to take over those duties. Both spouses in c u r many problem s attem pting to take over the ro le that was once fille d by h is /h e r i l l spouse. M orycz ( ) found that husbands tend to be much more w illin g to ask fo r help outside o f the fa m ily than are wives. W ives often feel as i f they should be able to manage the house, finances, and the person w ith A lzheim er's Disease. Women tend to be in a caregiving ro le fo r most of th e ir liv e s, caring fo r th e ir ch ild re n and th e ir husbands. It is v e ry d iffic u lt fo r them to accept the fact that th is type of caregiving is alm ost im possible to do w ith o u t some fo rm of help ( M orycz, ); Conversely, in a comparison of spouse caregivers of dementia patients, F ittin g, Rabins, Lucas, & Eastham ( ), found no differences in amount of burden experienced by male and female caregivers.

24 H Financial problem s may increase burden fo r many fa m ilie s ( C lc lr e lll, ). The cost of In stitu tio n a lizatio n o r h ire d caregivers Is high. Most v ic tim s of A lzh eim er's Disease eventually reach a state w here constant care and supervision Is needed. This is often d iffic u lt i f the caregiver has a job outside the home. M in o rity and low socioeconomic status fa m ilie s tend to keep the fa m ily member w ith A lzheim er's Disease at home u n til a v e ry advanced stage of the disease. They tend to make little o r no use o f fo rm a l supports u n til some catastrophic situation forces them to in s titu tio n a liz e the fa m ily member a fflicte d w ith A lzh eim er's Disease. Fam ilies at higher socioeconomic levels are more lik e ly to m aintain the fa m ily member w ith A lzheim er's Disease at home through the use of hired caregivers and companions, ra th e r than p e rfo rm in g instru m e ntal caregiving tasks themselves o r making use of com m unity in stitu tio n s. The fin ancia l resources of the fa m ily are an im p o rta n t factor in determ ining the extent and q u a lity of fa m ily caregiving, the h irin g and supervision of additional help and the use of in stitu tio n a l a lternatives. Burcten experienced by caregivers of ch ro n ic a lly im paired older adults has been investigated in several d iffe re n t aspects as stated in the lite ra tu re cited above. Gred & S ainsbury ( ) investigated burden in caregivers of the m entally ill. Cantor ( ) and Sanford ( ), explored burden in caregivers of ch ro n ica lly im paired older adults. The samples used in these studies,contained both m entally and p hysically im paired older adults in need of care. Studies by Z a r it1todd, and Z a rit ( ), M orycz, ( ), Scott, Roberto, and Hutton ( ), W inogrond1f isk, K irs lin g, and Keyes ( ), and F ittin g, Rabins, Lucas, and Eastham ( ) examined burden o nly in caregivers of older adults w ith Alzheim er's disease. Poulshtffik and D iem ling ( ), in an exam ination of the m ultidim ensional aspects of burden discovered an association between mental incapacity in i l l older adults and burden levels.

25 15 Increased mental Incapacity was found to be associated w ith Increased burden levels, This study w ill address what seems to be a d e fic it In the c u r r e n t. lite ra tu re, comparisons between caregivers o f the p h ysically and m entally (A lzheim e r's a fflicte d ) im paired elders.. Mental Incapacity can be profound In those s u ffe rin g from A lzheim er's Disease. Therefore caregivers o f older adults w ith A lzheim er's Disease could be expected to experience higher levels o f burden and expression than caregivers o f p h ysically i l l older adults, L ife Events and Depression Numerous studies have demonstrated the relatio n ship between stre ssfu l life events and depression ( M yers, Llndenthal, Pepper & Ostrander, ; Lloyd, ; Paykel, M yers, D le n a ltl K le rm an, Lindenthal, & Pepper, ). M yers, Lindenthal, Pepper & Ostrander ( ) Investigated the relatio n ship between stre ssfu l life events and mental status over a two year period w ith a system atic random ly sampled population in a m etropolitan area. Mental status and recent changes In life events were recorded and then again recorded two years later, Increased changes in stre ssfu l life events were found to be related to increased pathology on the mental status exam. Paykel et.al. ( ) compared a control group and a group of depressed patients on recent stre ssfu l life events. The depressed patients reported n early three tim es as many im p o rta n t stressful life events in the six months p rio r to the onset of the depressive episode as did the control group. S upport systems have been found to decrease the likelihood of depression follow ing sig n ificant life events. Caregivers often fin d th at th e ir c irc le of social and fa m ilia l support decreases when th e ir life becomes consumed w ith caregiving. When high life event scores ( W a rh e it, ) showed sig n ificant relatio n ships to increased depressive symptomology,

26 16 persons w ith personal, fa m ilia l, and Interpersonal resources had s ig n ific a n tly less depressive symptomology than did those w ith o u t resources. P aykel, P ru s o ffl & Uhlenhuth ( ) asked subjects to rate the s e ve rity of stress associated w ith va rious life events. T heir findings suggest that the death o f a spouse o r close fa m ily m em ber, hospitalization of a fa m ily m em ber, and the loss o f a personally valuable object are e xtre m ely stre ssfu l events. Financial d iffic u ltie s, separation from a significant person, and a change in lin e of w ork are m oderately stre ssfu l life events. Each o f these life events are not uncommon fo r caregivers of c h ro n ic a lly im paired older adults ( Chenowith & S pencer, ; Mace & Rabins, 1 981), The burden associated w ith caring fo r a fa m ily member w ith A lzheim er's Disease has been linked to depression in caregivers ( Poulshock & D eim ling, ; Pagel, Becker, & Coppel, ; D rin ka, S m ith, & D rin ka, 1 987), The caregivers tend to feel as i f they have lost control over th e ir own lives. It is lik e ly that th is feeling of loss o f control can lead to depression in caregivers. Also, higher levels of burden can lead to depression, which can in t u r n, lead to higher levels o f burden. This can form a dangerous cycle w hich affects both the caregiver and i l l older adult. Statement o f the Problem This study is designed to examine burden and depression in caregivers o f elders w ith A lzheim er's Disease and caregivers of elders w ith ch ro nic physical im pairm ents. The experience o f caring fo r an older adult w ith A lzheim er's Disease w ill be compared w ith the experience of caring fo r a p h ysically im paired older adult. It Is expected that the experience of these two groups w ill be d iffe re n t, even when there is no difference between them in the areas of caregiver age, i l l re la tiv e age, length of re la tio n ship, and length o f illness. It is expected that

27 17 a greater degree o f burden and depression w ill be experienced by caregivers o f older adults w ith A lzheim er's Disease than fo r caregivers o f p h ysically Im paired e ld e rly. It 'Is also expected that there w ill be a p ositive rela tio n ship between experience of burden and depression fo r both caregivers o f p h ysically im paired e ld e rly and caregivers of older adults w ith A lzheim er's Disease. Areas w hich appear to be p a rtic u la rly strong sources o f burden o r depression fo r caregivers w ill be explored by exam ining resp on se to specific Item s on the measures of burden and depression.

28 18 CHAPTER 3 METHODOLOGY This section w ill present the methodology o f the study. The sam ple, research instru m e nts, adm inistration of the instrum ents, hypotheses, and s ta tis tic s used to analyze the data w ill be described. Research Hypotheses 1. There w ill be no differences between caregivers o f elders w ith A lzh eim er's Disease and caregivers of elders w ith ch ro nic physical im pairm ents in the areas o f caregiver age, i l l re la tiv e age, length of re la tio n ship, and length o f illness. 2. Burden w ill be greater fo r caregivers of elders w ith A lzheim er's Disease than fo r caregivers of p h ysically im paired elderly. 3. Depression w ill be greater fo r caregivers of elders w ith A lzheim er's Disease than fo r caregivers o f p h ysically im paired elderly. 4. There w ill be a positive relatio n ship between the amount of burden experienced by the caregiver and depression. Design Statement The experim ental design used was a sta tic group comparison as defined by Campbell and Stanley ( ). The threats to in te rn a l and external v a lid ity w hich are inherent to th is design are selection, m o rta lity, interactio n of selection and m aturation, and the interaction of selection and the experim ental treatm ent,

29 19 Sample Samples from two populations w ere used In th is study. The populations studied w ere, ( a) caregivers o f older adults w ith A lzheim er's Disease and ( b) caregivers of physically Im paired older adults. Subjects fo r both samples w ere re cru ite d through physicians In the G allatin and P ark County area. T h ir ty - fo u r area physicians w ere contacted via a le tte r (Appendix B) w hich was followed by a phone call. The names and adresses o f a ll physicians contacted w ere obtained from the ye llo w pages of the local phone book. Seven of the th ir ty - fo u r physicians contacted agreed to p a rticip a te In the study. Those physicians who did not p a rticip a te In the study, did not respond to the le tte r o r to repeated phone messages le ft by the author. The physicians who did p a rticip a te selected fro m th e ir patients those who w ere o rg anically o r p h ysically Im paired, s t ill resided in th e ir own home, and had a p rim a ry caregiver w hich was a spouse o r child. The physicians who chose to p a rticip a te then supplied the author w ith the name o f the care g ive r, nature o f rela tio n ship to the i l l older adult, phone num ber o f ca re g ive r, address of ca re give r, name o f the 111older adult, and diagnosis of the 111older adult. Tw enty-seven subjectss were re fe rre d to the author. Of these tw enty-seven r e fe r r a l subjects tw e n ty -tw o participated In the study, co nstitu ting a re tu rn rate o f eighty-one percent. The combined sample consisted o f 2 2 subjects who were caring fo r a ch ro n ica lly 111 older adult (Table I ), The mean age of the caregivers was , w h ile the m am age o f the 111 older adults they w ere caring fo r was 7 4,6 7. The relatio n ship between the caregiver and the 111 older adult tended to be long te rm, an average o f years. The length o f the Illness of the i l l older adult ranged fro m one q uarte r of a year to tw enty years w ith a mean o f years. The

30 20 caregivers in the sample were caring fo r older adults w ith the fo llo w in g a rra y o f illnesses: A lzheim er's disease, emphysema, heart problem s, high blood pressure, cancer, m u ltip le sclerosis, diabetes, dehydration, and fr a ilty. Table I. Combined Sample Demographics Variable N X SD M inim um M axim um Caregiver Age Relative's Age 21* Length of Relationship (y e a rs ) Length of Illness ^Decreased N size due to questions le ft blank on questionnaire The two samples w ere composed of caregivers o f elders w ith A lzheim er's disease and caregivers of elders w ith chro nic physical im p airm e n ts (Table 2 ), Eight o f the subjects w ere caring fo r elders w ith A lzheim er's Disease, fourteen were caregivers o f elders w ith ch ro nic physical im pairm ents. The mean age o f caregivers o f elders w ith A lzh eim er's disease was , w h ile the mean age of the elders w ith A lzheim er's disease they w ere caring fo r was (Table 3 ). The mean age o f caregivers o f elders w ith ch ro nic physical im pairm ents was , w h ile the mean age of the elders w ith chro nic physical im p airm e n ts they were caring fo r was 7 5,15. Fourteen of the caregivers w ere spouse caregivers and eight caregivers were ch ild re n caring fo r a c h ro n ic a lly i l l parent. Sixteen o f the caregivers w ere female, six were male.

31 21 Table 2. C aregiver Demographics Variable N % XAge SD Type of C. G.'s of Elders W ith A lzheim er's C are- C. G.'s of P h ysically Im paired Elders H g ive r Total R elation- C. G.'s Caring fo r a Spouse H ship C. G.'s Caring fo r a Parent Total C. G.'sof Male I Elders W ith Female A lzheim er s Total C. G.'sof Phys. Male Im paired Female Elders Total

32 22 Table 5. Hl Relative Demographics Variable J N % XAge. S D Type Elders W ith Alzheim er's O f l l l P h ysically Im paired Elders Relative. Total Elders Male W ith Female A lzheim er's Total P h ysically Male Im paired Female Elders Total Questionnaire This section describes the cover le tte r, request fo r inform ation and instrum ents used to measure caregiving, depression, burden and demographics. The questionnaire ( appendices C,D,E,F,6,H) was form atted using the Chicago 12 p oint font to fa c ilita te easy reading by a predom inantly older population.

33 2 3 ' Cover Letter The cover le tte r (Appendix C) was used to Introduce the author and the purpose of the study to the caregiver. The cover le tte r contained a statement o f c o n fid e n tia lity and in stru ctio n s p ertain ing to com pleting and re tu rn in g the questionnaire to the author. Request fo r Inform ation The request fo r inform a tion ( Appendix D) was provided so that interested subjects could receive the re su lts o f the study. A co n fid e n tia lity statement was included in the request fo r inform ation. The re tu rn of the request fo r inform ation form was optional fo r the subject. Inform ation Sheet The inform a tion sheet (Appendix E) was designed by the author. It was used to gain inform a tion about the caregivers and th e ir relatio n ship w ith th e ir i l l loved one. It contained sh o rt answer questions concerning the nature o f the rela tio n ship, length of the relatio n ship, type o f im p a irm e n t, age of the ca re give r, age of the im paired person, su pport system of the ca re give r, gender, hours per day spent caregiving, attitude towards choice about caregiving and average y e a rly income, A section fo r comments was also included (Appendix I ). Z a rit's Burden In te rview The Burden In te rvie w (Z a rit, O r r1& Z a rit, ) (Appendix F) was especially designed to re fle c t the stresses experienced by caregivers of dementia patients. It can be used as a s e lf-re p o rt measure o r as an in te rvie w measure. The Burden In te rvie w consists of a series of 22 questions to be answered by the caregiver about the impact of the patient's im pairm ent on the life o f the caregiver. The responses are coded on a 0-4 L ik e rt scale, O being little o r no im pact and 4 being severe impact. The Burden In te rvie w is scored by sum m ing the responses of the individual items. Scores range from Norms fo r the Burden In te rvie w have not been