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.
CAREGIVERS OF PHYSICALLY AND MENTALLY IMPAIRED ELDERLY:
AN INVESTIGATION OF BURDEN AND DEPRESSION
by
Susan C h u rc h ill B a rn e tt
A thesis su bm itted in p a rtia l fu lfillm e n t
o f the re q u ire m e n ts fo r the degree
of
M aster o f Education
MONTANA STATE UNIVERSITY
Bozeman, Montana
August 19 8 9
ii
APPROVAL
o f a thesis su bm itted by
Susan C. B a rne tt
T his thesis has been read by each m em ber o f the thesis com m ittee and has been found to
be sa tis fa c to ry regarding content, English usage, fo rm a t, c ita tio n s , b ib lio g ra p h ic s ty le , and
consistency, and is re a d / fo r subm ission to the College o f Graduate Studies.
Date
C h a irp e rs o n , Graduate Comm ittee
Approved fo r the M ajor Departm ent
Head, M ajor Departm ent
Approved fo r the College o f Graduate Studies
Date
Graduate Dean
m
STATEMENT OF PERMISSION TO USE
In pre sen ting th is th esis in p a rtia l fu lfillm e n t o f the re q u ire m e n ts fo r a m aster's degree
at Montana State U n iv e rs ity , I agree th a t the L ib r a r y s h a ll make i t a v a ila b le to b o rro w e rs under
ru le s o f the lib r a r y . B r ie f quotations fro m th is th esis are allow able w ith o u t s p e c ia l.
p e rm issio n , provided th a t accurate acknowledgment o f source is made.
P e rm ission fo r extensive quotation fro m o r rep ro du ction o f th is th esis may be granted
by m y m a jo r p ro fe sso r, o r in h is /h e r absence, by the Dean o f L ib ra rie s w hen, in the opinion o f
e it h e r , the proposed use o f the m a te ria l is fo r s c h o la rly purposes. Any copying o r use o f the
. m a te ria l in th is thesis fo r fin a n cia l gain s h a ll not be allowed w ith o u t m y w r itte n perm ission.
S ig na tu re ,= __ D i r & f v ,
Dfttfi
Jjorc,/TC ~f~
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iv
TABLE OF CONTENTS
Page
1. INTRODUCTION......................... .................... ............................................................................. :..........I
2. LITERATURE REVIEW.....; ..... ................................................................................................................ 5.
The E ld e rly ....................................................................................................................... ;..... 5
C hronic Physical Im p a irm e n t and A lz h e im e r's Disease.............................................
6
C hronic Physical Im p a irm e n t.................................................................................... 6
A lz h e im e r's Disease......................................................................................................7
C areg ivers........ i................................................................ ;.................................................... 9
C aregivers o f P h y s ic a lly Im pa ire d E ld e rly ..............................................................9 C aregivers o f E ld e rly W ith A lz h e im e r’s Disease................................................ 10
L ife Events and Depression........ !..................................................•................................... 15
Statement o f the P ro blem ....!.....................!..................................................................... 16
3. METHODOLOGY............................................................................................ ...... ;...............: ............... M S Research Hypotheses...................................................... .................................................... 18
Design Statem ent.................................. ...............................................................................18
Sample.................. ........... ..................................................'........................................ 19
Q uestionnaire...................................................................■......................................... 2 2
Cover L e tte r................................................................................................... ..2 3
Request For In fo rm a tio n ................................................................................ 2 3
In fo rm a tio n Sheet.............................................................................................2 3
TABLE OF CONTENTS - Continued
Page
Z a rit Burcten In te rv ie w ................................... : ............................................2 3
Beck Depression In v e n to ry ........................................................................... 2 4
Procedures.................................................................
25
D ataA n a lysis........................................................................
26
4. RESULTS................................................................................................................................................ 2 8
Combined Samples............................................................................................................
29
T to ts o f Hypotheses..............................................................................................................3 0
H ypothesis I ................ .............................................................................
Hypothesis 2 ...........................................................................
30
,...31
Hypothesis 3 ............................................................................................ :..................3 2
Hypothesis 4 ................................................................................................................3 3
Exam ination of S p ecific Item s........................................................................................... 3 3
5. DISCUSSION.......................................................................................................................................... 3 5
Com binto Samples.......................................
35
Exam ination of the Hypotheses..........................................................................................3 7
Hypothesis I - Comparison of the Two Groups................................................... 3 7
Hypothesis 2 - Burden.................................
38
Hypothesis 3 - Depression...................................................................................... 3 9
Hypothesis 4 - R elationship Between Burcten and Depression....................... 4 0
Im p lic a tio n s and L im ita tio n s o f the Study.........................
40
Suggestions fo r F u tu re Research......................................................................................4 2
vi
TABLE OF CONTENTS - Continued
Page
REFERENCES............................................................................................................................................... 43
APPENDICES............................................................................................................................................... 49
A.
Human Subjects Com m ute A pproval L e tte r................................................................... 5 0
B.
L e tte r to Area P hysicia n s.............................................................
C.
Q uestionnaire Cover L e tte r................................................................................................ 54
D.
Request For In fo rm a tio n .................................................................................................... 5 6
E.
In fo rm a tio n Sheet................................................................................................................ 58
F.
Z a rit Burden In te rv ie w ...................................................................................................... 6 1
6.
Beck Depression In v e n to ry ..........................................................
H.
Thank You Sheet.................................................................................. ............................ ;,.7 0
I.
C aregiver Comments........................................................................................................... 7 2
J.
Zar.1t Burden In te rv ie w Item Means and S ta tis tic s .................................................. 7 5
K.
Z a rit Burden In te rv ie w Item Means G raph........... ........................................................7 7
L
Z a rit Burden In te rv ie w Score D is trib u tio n ................................................................... 7 9
M.
Beck Depression In v e n to ry Item Means and S ta tis tic s ............................................... 8 1
N.
Beck Depression In v e n to ry Item Means G raph............................................................. 8 3
O.
Beck Depression In v e n to ry Score D is trib u tio n .............................................
P.
In fo rm a tio n Sheet For Subjects.......................................................................................8 7
52
65
.8 5
v ii
LIST OF TABLES
Table
1. Combined Sample Dem ographics.......................................
Page
...20
2. C aregiver Dem ographics.....................................................
3, 111 R elative Dem ographics..................................................
4, Combined Sample S ta tistics,,.,.,,,,,,,,,,,.................. ..........
5. Comparison o f the Two Groups...........................................
6,
Comparison o f Z a rlt Burden In te rv ie w Scores..............
.3 2
7, Comparison o f Beck Depression In ve n to ry Scores.......
32
8.
R elationship Between Burden and Depression...'...........
.3 3
9, Z a rit Burden In te rv ie w Item Means and S ta tis tic s .......
76
10, Z a rlt Burden In te rv ie w Score D is trib u tio n ..................
.8 0
11. Beck Depression In v e n to ry Item Means and S ta tis tic s
,8 2
12. Beck Depression In v e n to ry Score D is trib u tio n ............
86
v iii
LIST OF FIGURES
F igu re
Page
1. Z a rlt Burden In te rv ie w Means Graph.............................................................................................78
2, Beck Depression In v e n to ry Means Graph...................................................................................... 8 4
Ix
ABSTRACT
The purpose o f th is study was to exam ine differen ce s In burden and depression In
ca re g ive rs o f p h y s ic a lly Im p a ire d older adults and ca re g ive rs o f o ld er adults w ith A lz h e im e r's
disease. The re la tio n s h ip between burden and depression was also examined. Itw a s
hypothesized th a t th e re w ould be no differences between ca re g ive rs o f e ld ers w ith A lz h e im e r's
Disease and ca re g ive rs o f e ld ers w ith c h ro n ic physical im p a irm e n ts in th e areas o f ca re g ive r
age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn ess. It was also hypothesized th a t
ca re g ive rs o f e lders w ith A lz h e im e r's disease w ould be found to be e xpe rie ncing m ore burden
and depression than ca re g ive rs o f p h y s ic a lly Im p a ire d elders. A p o s itiv e c o rre la tio n a l
re la tio n s h ip was hypothesized between burden and depression. The c a re g iv e rs who p a rtic ip a te d
In th is study w ere re c ru ite d th rough area physicians. Eight w ere ca re g iv e rs o f older adults
w ith A lz h e im e r's disease and fourteen w ere ca re g iv e rs o f o lder adults w ith c h ro n ic physical
im p a irm e n ts. The Z a rit Burden In te rv ie w and the Beck Depression In v e n to ry w ere the
In s tru m e n ts used to measure burden and depression. The c a re g ive rs also completed a
dem ographics questionnaire, t - tests fo r independent samples yielded no s ig n ific a n t differen ce s
between ca re g ive rs o f e ld ers w ith A lz h e im e r's Disease and c a re g ive rs o f e ld ers w ith c h ro n ic
physical im p a irm e n ts in the areas o f c a re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and
length o f illn e ss, t - tests fo r Independent samples revealed no s ig n ific a n t differences between
ca re g iv e rs o f o lder adults w ith A lzh e im e r's and c a re g ive rs of o lder a du lts w ith c h ro n ic physical
im p a irm e n ts in the areas of depression and burden. A s ta tis tic a lly s ig n ific a n t ( p <.05) p o s itiv e
c o rre la tio n was found between burden and depression. In conclusion, ca re g iv e rs o f e lders w ith
A lz h e im e r's disease and ca re g ive rs o f e lders w ith c h ro n ic physical im p a irm e n ts w ere found to
experience s im ila r amounts o f burden and depression and high scores on the Z a rit Burden
In te rv ie w w ere found to be associated w ith high scores on the Beck Depression Inventory.
I
CHAPTER I
INTRODUCTION
T his study w i ll exam ine the s u b je ctive experience o f c a rin g fo r a c h ro n ic a lly i l l p a re n t,
spouse, o r re la tiv e . The experience o f c a rin g fo r an o ld er adult w ith A lz h e im e r's Disease w i ll
be compared w ith the experience o f c a rin g fo r a p h y s ic a lly im p a ire d o ld e r adult. It is
hypothesized th a t a g re a te r degree o f burden and level o f depression w i ll be experienced by
ca re g iv e rs o f o ld er adults w ith A lz h e im e r's Disease. It is also hypothesized th a t th e re w i ll be a
p o s itiv e re la tio n s h ip between experience o f burden and depression.
M ental and physical health care fo r o ld er adults has become an area o f increasing
concern fo r health care g iv in g professionals. Advanced health care and medical knowledge in the
past few decades has led to a c o n tin u a lly g ro w in g population o f older adults. The num ber o f
persons 6 5 and older has increased fro m 16 m illio n to m ore than 2 8 m illio n in the past tw e n ty fiv e ye a rs (S ta tis tic a l A b stra ct o f the United States, 19 8 8 ). W ith th is g ro w in g segment o f the
population come m any medical p ro ble m s often associated w ith the In fir m itie s o f increased age.
T his can include physical and m ental p roblem s fo r w h ich the e ld e rly have an increased r is k .
The incidence o f c h ro n ic p hysical im p a irm e n t tends to Increase w ith chronological age (D y e ,
19 8 5 ). Common c h ro n ic physical pro ble m s among the e ld e rly population can include a r t h r it is ,
diabetes, ca rd io va scular p ro b le m s, osteoporosis, poor sigh t a n d /o r h e a rin g , broken bones,
and f r a i l t y ( K n ig h t, 1 9 8 6 ; W h itb o u rne, 1 9 8 5 ). These problem s can im p a ir the m o b ility o f
older adults and often r e s tr ic ts th e ir a b ilit y to care fo r themselves. The c h ro n ic a lly im p a ire d
older a du lt can often have d if fic u lty p re p a rin g m eals, dressing, and doing s im p le household
chores ( B ranch, 19 7 7 ). Dementia in the e ld e rly , lik e c h ro n ic physical im p a irm e n t, can also
2
r e s tr ic t the m o b ility o f the o ld er adult. A lz h e im e r's Disease, a degenerative organic illn e s s
accounts fo r 5 0 to 6 5 p e r cent o f dementia cases in older adults ( Katzm an, 19 8 7 ). A lz h e im e r's
Disease begins w ith m em ory loss a n d /o r p e rs o n a lity changes and e v e n tu a lly leaves the a fflic te d
older a d u lt unable to p e rfo rm even the s im p le s t task. The older a du lt w ith A lzh e im e r's Disease
e ve n tu a lly s u ffe rs a com plete loss o f recognition o f h is /h e r s u rro u n d in g s and e nvironm ent
( Mace & Rabins, 1 9 8 1 ). Each o f these physical and o rganic d e b ilitie s can range fro m m ild to
severe re q u irin g v a ry in g amounts o f care.
C aring fo r the m e n ta lly a n d /o r p h y s ic a lly im p a ire d o ld er a du lt 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 se ttin g care is provided by tra in e d
professionals w ith experience in c a rin g fo r im p a ire d e ld e rly persons. C aregivers in the home
tend to be a spouse, c h ild , o r close re la tiv e . The care p ro v id e rs in the home se tting are often
u ntrain ed and Inexperienced. Spouse c a re g ive rs are often e ld e rly them selves and have reduced
s tre n g th , stam ina, and often lim ite d funds. C aregivers who are c h ild re n o f the im p aired older
person often have a job and fa m ily o f th e ir own to care fo r. The p h y s ic a l, fin a n c ia l, and
em otional s tra in o f c a rin g fo r an im p a ire d o lder a d u lt can be great ( Mace & Rabins, 1 9 8 1 ).
C aregiving its e lf can be p h y s ic a lly demanding. L iftin g , m oving, and tra n s p o rtin g
im p a ire d a dults can be e x tre m e ly d if fic u lt fo r the c a re g ive r ( Mace & Rabins, 19 8 1). The
fin a n c ia l s tra in s o f ca re g ivin g stem fro m the special needs o f W m p a l r e d older adult. Quite
often ca re g ivin g in Its e lf becomes a f u ll- t im e jo b w hich re q u ire s the w o rk in g ca re give r to g ive
up h is /h e r jo b o r h ir e re s p ite care fo r the Im p a ir s j older adult.
The fin a n c ia l and p hysical demands o f ca re g iv in g often c o n trib u te to the emotional s tr a in
fe lt by the ca re g ive r ( S iIve rsto n e , 19 8 5 ). The social netw ork o f the ca re g iv e r is often
3
re s tric te d due to the lim ite d amount o f tim e th a t the c a re g ive r has fo r social and recrea tion al
purposes, The home often becomes a typ e o f p ris o n fo r the c a re g iv e r ( Mace & Rabins, 1 9 8 1 ).
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, 19 7 9 , P a y k e l, P ru s o ff, & U h le n h u th , 1 9 7 1 , V in o ku r & S e lz e r 1 1 9 7 5 ). L ife events
may be defined as d esira b le o r undesirable occurences In life th a t re q u ire readjustm ent.
Excessive changes make adjustm ent d if fic u lt and produce stre ss (V in o k u r & S e lz e r1 19 7 5 ).
M oving, m a rria g e , b ir t h o f a c h ild , illn e s s , d ivo rce o r separation, death o f a spouse o r close
re la tiv e are a ll occurrences w h ich could be term ed life events ( P a y k e l, M y e rs , D ie n e lt,
K le rm a n , L in d e n th a l, & P epper; 19 6 9 ). In p a r tic u la r the c h ro n ic illn e s s o f a loved one can be
a s tre s s fu l life event fo r the c a re g ive r ( C o le ric k & George, 19 8 6 ). C hron ic illn e s s b rin g s
about an irre de em ab le change in the life o f the c a re g iv e r and the c h ro n ic a lly i l l person. When
expression re s u lts fro m the s tre s s fu l life event o f c a rin g fo r a c h ro n ic a lly im p aired elder the
q u a lity o f ca re g ivin g can d e te rio ra te . The e m o tio n a l, p h y s ic a l, and fin a n c ia l s tra in o f c a re g iv in g
can be Immense. Becoming a ca re g ive r fo r a spouse, p a re n t, o r re la tiv e can be devastating. The
news th a t 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
irre de em ab le change in the lif e o f the c a re g ive r and the i l l person. The c h ro n ic a lly i l l person
m ust s lo w ly g ive up h is /h e r Independence. The c a re g iv e r 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 c o tt, R oberto, & H utton, 19 8 6 ). E very w aking hour is given to the i l l person. The amount o f
burden experienced by ca re g ive rs o f c h ro n ic a lly im p a ire d older adults has been found to be
associated w ith feelings o f depression ( D r in k a , S m ith , & D rin k a , 19 8 7 ) .
C aregivers in
4
s tre s s fu l o r depressed states could be unable to p ro vid e adequate care fo r th e ir im paired
re la tiv e s . T his m ig h t increase the num bers o f im p a ire d e ld e rly being in s titu tio n a liz e d
( M o ry c z , 1 9 8 5 ).
The p hysical and em otional needs o f the c a re g iv e r are often o ve rrid d e n by the needs o f
the i l l fa m ily m em ber. The needs o f the c a re g iv e r a re o f p rim e Im portance both fo r
m a in ta in in g th e ir w e llb e in g and th a t o f the e ld e rly th ey care fo r. An e x p lo ra tio n o f these needs
w i ll pro vid e the medical and m ental health c o m m u n ity w ith avenues upon w hich to a ttem pt to
meet these needs.
C aring fo r c h ro n ic a lly im p a ire d e lders has been associated w ith feelings o f burden and
depression in caregivers. It is possible th a t the amount o f burden.and depression experienced
by c a re g ive rs is related to the degree o f m ental inca pa city in the c h ro n ic a lly im p a ire d o lder
adult. C aring fo r a p h y s ic a lly Im pa ire d older a du lt re la tiv e can be s tre s s fu l because o f the
tim e , fin a n c ia l and physical demands on the ca re g ive r. C aring fo r an o ld e r a du lt re la tiv e who is
s u ffe rin g fro m A lz h e im e r's Disease has the p otential to be even m ore s tre s s fu l because o f the
stresses mentioned above and the increasing m ental inca pa city of the o ld e r adult. The older
a du lt who is s u ffe rin g fro m A lz h e im e r's Disease can become in c re a s in g ly unpredictable and
often unpleasant. As A lz h e im e r's Disease progresses the v ic tim s u ffe rs fro m m em ory loss, the
in a b ility to re la te to o th e rs in a c a rin g fashion, and can often become a n g ry and com batitive.
These p ro b le m s, coupled w ith the o the r stresses n o rm a lly associated w ith ca re giving , could
re s u lt in g re a te r burden and depression in c a re g iv e rs o f older adults w ith A lz h e im e r's than fo r
o th e r caregivers,
5
CHAPTER 2
LITERATURE REVIEW
L ite ra tu re review ed below exam ines s tre s s and depression In ca re g iv e rs o f o rg a n ic a lly
and p h y s ic a lly Im p a ire d e ld e rly .
T his chapter Is organized to acquaint the reader w ith the c u rr e n t knowledge o f the needs
and p ro ble m s o f ca re give rs. In o rd e r to do th is the fo llo w in g areas w i ll be explored: the
e ld e rly , common c h ro n ic physical pro ble m s o f the e ld e rly , the sym ptom s, p rogression, and
p ro ble m s o f A lz h e im e r's Disease, c u rre n t research concerning the p ro b le m s In he re n t In
c a re g ivin g , stre ss and depression.
The E ld e rly
As a g ro w in g segment o f the p opulation, the p hysical and m ental health needs o f the
e ld e rly a re substantial. E ig h ty -s ix percent o f the e ld e rly population have some type o f c h ro n ic
health problem ( B u tle r , 1 9 8 5 ). H owever, o n ly an estimated 5 percent o f persons over s ix t y fiv e c u r r e n tly reside In some typ e o f In s titu tio n (Siegel , 1 9 7 7 ). E lders re q u ire m ore doctor
v is its and spend m ore tim e In the hospital than do the re s t o f the population. The average
hospital stay o f an e ld e rly person is 14 days ( B u tle r , 19 8 5 ). Em otional and mental Illn e s s
tends to Increase o ve r the life cycle, H ypochondriasis 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 h ite males have the highest su icide
ra te In the United States ( B u tle r , 19 8 5 ).
6
C hronic Physical I m p a irm e n t and A lz h e im e r's Disease
C hronic Physical Im nm rm o nt
The num ber o f adults age 6 5 and older has ste ad ily increased o ve r the past tw e n ty -fiv e
ye a rs and is projected to continue to increase (S ta tis tic a l A b s tra c t o f the United States, 19 8 8 ).
The incidence o f c h ro n ic p hysical im p a irm e n ts tends to ris e s h a rp ly w ith.age in those adults
aged 4 5 to 6 4 and d ra m a tic a lly among older adults age 6 5 and older ( In s titu te o f Medicine and
National Research C o u n cil, 19 8 5 ). S e v e n ty -fiv e percent o f the population o f older adults 6 5
and older s u ffe r fro m at least one ch ro n ic condition and h a lf o f th is population s u ffe rs fro m
m ore than one c h ro n ic condition ( R ile y and F on er1 19 6 8 ).
Common c h ro n ic diseases and physical im p a irm e n ts w hich plague the older adult
population a re card io va scular p ro ble m s, a r t h r it is , problem s w ith s ig h t and hearing, diabetes,
and c h ro n ic d is a b ility due to fa lls and in ju r ie s (R ile y and Foner, 19 6 8 ; Agate, 19 7 0 ; Dye,
1 9 8 5 ).
C ardiovascular disease tends to begin at a young age but reaches a severe, c h ro n ic stage
in o ld er adulthood ( L aka tta , 19 8 5 ). C ardiovascular disease accounts fo r 7 2 percent o f a ll
deaths o f adults over the age o f s ix t y - f iv e ( Dye, 19 8 5 ). Shortness o f b re a th , reduced tolerance
fo r e x e rtio n , le th a rg y , confusion and depression often affect the o ld er a du lt w ith ca rdiovascular
disease (Agate, 19 7 0 ). The a c tiv itie s o f tw e n ty -o n e percent o f o lder adults is lim ite d because
o f a r t h r it is ( R ile y & F o n e r, 19 6 8 ). A r t h r it is is a d isa bling condition o f the jo in t w hich can be
e x tre m e ly p a in fu l. Often older adults s u ffe rin g fro m a r t h r it is are at tim e s w h e e lch air-b ou nd
o r are in need of some type o f w a lk in g aid (Agate, 19 7 0 ). A r t h r it is can affect jo in ts in the
hands, shoulders, h ip s, knees, feet, spine, and o the r areas o f the body and can often re s u lt in
d e fo rm itie s o f the jo in t (Agate, 19 7 0 ). Im p a irm e n ts in v is io n and hea rin g affect most older
7
adults to some degree ( R ile y & F on er 1 19 6 8 ). P resbyopia, 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, e v e n tu a lly affects a ll o ld e r adults. This is due to
th icke n in g o f the c r y s ta llin e lens ( S e kula r & B lake, 19 8 5 ). Cataracts, o pa city o f the
c ry s ta llin e lens, plague m any older adults and can at tim e s re s u lt in blindness. F a ilin g v is io n
can se ve re ly l i m i t the a b ilit y o f o lder adults to care fo r them selves (Agate, 19 7 0 ). As human
beings age, the a b ilit y to hear high frequencies tends to decrease (p re s b y c u s is ). Young humans
can hear frequencies as high as 2 0 ,0 0 0 Hz. B y the age o f seventy frequencies higher than
6 ,0 0 0 Hz are ina ud ible ( S ekular & Blake, 19 8 5 ), Loss o f hearing often isolates the older adult
fro m the w o rld around h im /h e r (Agate, 19 7 0 ). Diabetes is common among older adults w ith
f i f t y percent having some fo rm o f diabetes ( Dye, 19 8 5 ). Diabetes can have serious
co m p lica tion s fo r older adults. Some o f the m ore s e rio u s com p lica tion s a re those o f the v is u a l
and va scu la r systems. Diabetes can lead to blindness and gangrene re s u ltin g in am putation fro m
va scular system p ro ble m s (Agate, 19 7 0 ). Seventy percent o f deaths due to fa lls occur in those
s ix t y - f iv e and older. Older adults are often se v e re ly disabled by fa lls and o the r types of
in ju r ie s ( Hogue, 19 7 7 ), The f r a i l t y o f older adults often w orsens in ju r ie s and fra c tu re s are
common. Hospital stays due to in ju r ie s are often long and arduous fo r the older adult. In ju rie s
tend to sap the confidence o f the older a d u lt, se v e re ly c u rta il independence and often lead to
fu r th e r p hysical breakdown (Agate, 19 7 0 ).
A lz h e im e r's Disease
In 19 0 7 , A lo is A lzh e im e r re p o rte d a p e c u lia r dementing illn e s s w h ich he observed in a
5 1 ye a r old woman. The woman was fo rg e tfu l, paranoid and b iz a rre to a degree re q u irin g
hosp italizatio n. The p atie n t became p ro g re s s iv e ly c o g n itiv e ly and e m o tio n a lly im p aired and
8
died fo u r and a h a lf ye a rs a fte r the onset o f the disease. A lzh e im e r term ed th is malady senile
dementia o r dementia o f the A lzh e im e r type ( B o ndareff 1 19 8 6 ; Mace & Rabins, 1 98 1).
M e ie r ( 19 8 6 ) estim ated th a t m ore than 20% o f the people who reach age eighty w ill
s u ffe r fro m a moderate to severe fo rm o f dementia. V ery few causes o f dem entia are trea ta ble
o r re v e rs ib le . The most common ch ro n ic ir r e v e r s ib le fo rm o f dem entia is A lz h e im e r's Disease
(Nee, P o lin s k y , E ldridge, W e in g a rte r, S m a llb e rg 1& E b ert, 1 9 8 3 ). A lz h e im e r's Disease affects
the c e re b ra l co rte x o f the b ra in ( B o nd a re ff 1 19 8 6 ). It is ch aracterized b y se nile plaques,
n e u r o fib r illa r y tangles, g ra n u Iovacuaolar s tru c tu re s , and an o v e ra ll loss o f neurons. Senile
plaques are masses of degenerated ce ll m a tte r th a t occur in the spaces between cells. They
in te rfe re w ith messages w hich tra v e l fro m c e ll to c e ll in the b ra in . N e u r o fib r illa r y tangles are
tangled p ro te in fib e r s w hich appear inside b ra in c e lls and cause the c e lls to s h rin k and a trophy.
Granulovacuaolar s tru c tu re s are sacs fille d w ith flu id and g ra n u la r m a te ria l th a t accumulate in
the hippocampus ( Z a r it, 19 8 5 ). Senile plaques and n e u r o fib r illa r y tangles are found in a ll
people in num bers that increase w ith age. The n um ber o f senile plaques and n e u r o fib r illa r y
tangles is lim ite d in most n o rm a lly fu n c tio n in g o ld er people. People w ith A lz h e im e r's Disease
possess a b n o rm a lly large num bers o f se nile plaques and n e u r o fib r illa r y tangles ( W e lls ,! 9 7 8 ).
The c lin ic a l features o f A lzh e im e r's Disease w ere described b y Sem ple, S m ith , and Wash
( 19 8 2 ). They rep o rte d th a t the onset o f A lz h e im e r's Disease is u s u a lly a gradual one. S h ort
te rm m em ory is often im p a ire d , w h ile long te rm m em ory u s u a lly re m a in s in ta c t in the e a rly
stages o f the disease. The a fflic te d person's range o f in te re s ts decreases, a ffe ct is blunted, and
concern fo r the w e lfa re o f o th e rs often dim inishes, Depressive sym ptom s a re often common in.
the e a rly stages o f the A lz h e im e r's Disease.
In addition to the m em ory im p a irm e n t th ere tend to
be general in te lle c tu a l d e ficits. The A lz h e im e r's Disease p atie nt's v o c a b u la ry becomes
9
Im poverished and phrases and tenses are often s im p lifie d , t h e r e is u s u a lly dressing a praxia
(th e In a b ility to p e rfo rm a se rie s o f purposeful m ovem ents); agnosia (th e p a rtia l o r total
in a b ility to attach meaning to sensory im p re s s io n ); and geographic, tim e , space, and person
d iso rie n ta tio n . The p e rs o n a lity its e lf d eteriorates. As the disease progresses the A lzh eim er's
Disease p atie nt becomes p ro g re s s iv e ly Isolated fro m visua l and a u d ito ry contact w ith the
e nvironm ent. Speech is reduced to a babble. D u rin g the fin a l stages o f A lz h e im e r's Disease
em otional responses tend to be absent o r are replaced by loud, abnorm al laughter and moaning.
Im p a s s iv ity o f e xpression, r ig id ity , and d iso rd e rs o f posture, stance, movement, and m uscular
tone become p ro m in e n t as the disease progresses. Extrem e w eight loss has been noted in the
fin a l stages o f the disease.
C aregivers
C aregivers o f P h y s ic a lly Im pa ire d E ld e rly
Many adults age 6 5 and older s u ffe r fro m one o r m ore c h ro n ic physical im p a irm e n t
( R ile y & F o n e r, 1 9 6 8 ). Older adults w ith c h ro n ic physical im p a irm e n ts often need some typ e
o f s u p p o rt fro m re la tiv e s o r frie n d s. Cantor ( 19 8 3 ) in te rv ie w e d c a re g iv e rs o f the f r a il e ld e rly
in o rd e r to b e tte r understand how ca re giving im pacts the life o f the ca re g iv e r. The o v e rrid in g ,
problem was found to be em otional s tra in o f dealing w ith Increasing f r a i l t y in a person to whom
one is close, It was also found th a t the closer the emotional bond between the ca re give r and f r a i l
older a d u lt, the m ore s tre s s fu l the ca re giving ro le (C a n to r, 19 8 3 ).
C aregiving su p p o rt needed by im p a ire d older adults can range fro m lim ite d to extensive.
Sanford ( 19 7 5 ) surveyed f i f t y ca re g ive rs o f p h y s ic a lly and m e n ta lly im p a ire d older adults.
Incontinence, n ig h t w andering, and im m o b ility w ere found to be p ro ble m s least tolerated by
caregivers. These p ro ble m s are ones w hich w ould re q u ire a m axim um o f tim e and e ffo rt fro m
10
the ca re g ive r and th e re fo re are less e a s ily tolerated.
ca re g ivin g increases w ith s e v e rity o f im p a irm e n t.
T his suggests th a t intolerance fo r
A lm ost h a lf o f the c a re g ive rs reported a
re s tric te d social life and one q u a rte r rep orte d an in a b ility to leave the im p a ire d older person
fo r m ore than one hour ( Sanford, 19 7 5 ).
The p hysical demands of care giving can often be immense.
Everyday duties can often
include feeding, bathing, lif t in g , dressing, and often diapering. These s im p le tasks can be
d if fic u lt w ith a baby o r sm all ch ild . The size, w eig ht, and com pliance o f the older adult can even
fu r th e r com plicate these tasks.
Financial s tra in s o f care giving a ris e fro m the special needs o f the im p a ire d older
adult.
Quite often ca re g ivin g in its e lf becomes a f u ll- t im e job w h ich re q u ire s the w o rk in g
ca re g ive r to give up h is /h e r job o r h ire re s p ite care fo r the im p a ire d o ld er adult.
The fin a n c ia l and p hysical demands o f ca re g ivin g often c o n trib u te to the emotional s tra in
fe lt by the ca re g ive r
( S iIv e r stone,
1 9 8 5 ).
Medical costs can
Include h o s p ita liz a tio n ,
pharm aceuticals, and doctor v is its . The im p a ire d older adult often needs special equipm ent such
as; w h e elch airs and w a lk e rs , commodes, show er and bath equipm ent, hoists fo r liftin g , and
clo th in g w hich can be e a sily put on o r removed.
The social n etw o rk o f the ca re give r is often
re s tric te d due to the lim ite d amount o f tim e that the c a re g iv e r has fo r social and re crea tion al
purposes. The home often becomes a typ e o f p ris o n fo r the c a re g ive r ( Mace & Rabins, 1 9 8 1 ).
C aregivers o f E ld e rly w ith A lz h e im e r's Disease
A lz h e im e r's Disease often begins w ith m em ory loss and i r r i t a b i l i t y and re s u lts in a
com plete in a b ility to care fo r one's s e lf, recognize loved ones, and com m unicate w ith others
(S em ple, S m ith , and Wash; 19 8 2 ). A lz h e im e r's Disease affects not o n ly the person a fflic te d
w ith the disease, but the person's fa m ily as w e ll. A t some p o in t the person w ith A lzh e im e r's
Disease re q u ire s assistance fro m a fa m ily m em ber o r frie n d . T his need fo r help Increases over
tim e u n til constant care is required. C aring fo r a person w ith A lz h e im e r's Disease becomes a
f u ll tim e jo b fo r w hich most people are not tra in e d ( M aletta & H epburn, 1 9 8 6 ). What makes
A lz h e im e r's Disease p a r tic u la r ly s tre s s fu l is a com bination o f the a fflic te d person's mental
decline and loss o f independence. The person w ith A lz h e im e r's Disease is In te lle c tu a lly dying
( O ry , W illia m s , E m r, Lebow itz, Rabins, S a llo w ay 1Sluss-R adbaugh, W o lff & Z ari t , 1 9 8 5 ).
The c a re g iv e r o f an A lz h e im e r's Disease p a tie n t experiences a g reat deal o f burden w hich O ry , et
al. ( 19 8 5 ) define as the Im pact o f the changes In cognition and b ehavior o f the patient w ith
A lz h e im e r's Disease on the fa m ily , and the p a tie n t's subsequent need fo r care and su pe rvision .
In a study designed to investigate the m u ltid im e n sio n a l p ro p e rtie s o f burden in care give rs
( Poulshock & D ie m lln g , 19 8 4 ) , associations between elder Im p a irm e n t, burden, Im pact on
fa m ily life , and depression w ere explored. M ental im p a irm e n t in e ld e rs and the burden
experienced b y th e ir ca re g iv e rs was found to be associated. High le v e ls o f burden have been
found to be associated w ith n u rs in g home placement ( Z a r it, Todd, & Z a r it , 19 8 6 ). The m ore
burden the ca re g ive r experiences the h ig h e r the chances the i l l re la tiv e w i ll be
in s titu tio n a liz e d .
Cantor ( 19 8 3 ) found th a t the most severe burden was fe lt in the areas o f fre e tim e ,
so cia liz in g , le is u re p u rs u its , and household chores. The ca re g ive rs no longer had tim e fo r
outside In te re s ts due to the tim e spent c a rin g fo r th e ir fa m ily m em ber a fflic te d w ith
A lz h e im e r's Disease. Social Isolation ( W asow, 1 9 8 5 ; M orycz, 1 9 8 0 ; M aletta & Hepburn,
19 8 6 )
is another area th a t causes feelings o f burden among caregivers. The actual care giving
Is a tim e consuming jo b th a t a ffo rd s the c a re g iv e r v e ry li t t l e fre e tim e. The long p rogressive
natu re o f A lz h e im e r's Disease often causes frie n d s and re la tiv e s to avoid the a fflic te d person.
12
The avoidance also distances the frie n d s and re la tiv e s fro m the c a re give r. As A lzh eim er's
Disease progresses Itbecom es In cre a s in g ly d if fic u lt to take the fa m ily m em ber out of the home.
T his tends to isolate the ca re g ive rs and make them feel as i f they are trapped w ith the fa m ily
m em ber a fflic te d w ith A lz h e im e r's Disease. In a study w hich investigated the association
between s u p p o rt and burden in c a re g iv e rs , Scott, Roberto, & Hutton ( 1 9 8 6 ) , found that
ca re g ive rs who fe lt they w ere not re c e iv in g s u p p o rt fro m o the rs tended to experience more
burden than did ca re g ive rs who fe lt they w ere re c e iv in g s u p p o rt fro m others. Support groups
fo r p atients and ca re g ive rs tended to decrease the amount o f burden experienced by care give rs
(W in o g ro n d , F isk, K ir s lin g , & Keyes, 1 9 8 7 ).
Spouses, c h ild re n , and frie n d s o f the person a fflic te d w ith A lz h e im e r's Disease most
often assume the ro le o f ca re give r. The re la tio n s h ip between amount o f burden fe lt by the .
ca re g ive r and the closeness o f the c a re g iv e r's re la tio n s h ip w ith the a fflic te d person has been
explored and d iffe rin g re su lts'h a ve been found; Some studies have found th a t the closer the
re la tio n s h ip between the person w ith A lz h e im e r's Disease and the c a re g iv e r, the higher the
degree o f burden fe lt by the ca re g ive r (G rad & S a in s b u ry , 19 6 3 ; Aronson, L e vin , & L ip k o w itz ,
1984,- C an to r, 1 9 8 3 ). T h is fin d in g could be due to the emotional s tr a in o f w atching a loved one
s lo w ly d eteriorate. O ry et al. ( 19 8 5 ) , in a re v ie w on c u rre n t research on A lz h e im e r's Disease
and ca re g ive rs stated th a t the b e tte r the re la tio n s h ip between c a re g iv e r and A lzh e im e r's v ic tim
and ca re g ive r the less burden experienced. No source was given fo r th is fin d in g , th e re fo re the
o rig in s o f the statem ent are unknown. Thompson and Doll ( 19 8 2 ) , in a study w hich examined
the em otional and social costs o f c a re giving in te rv ie w e d 125 fa m ily c a re g iv e rs of the m e n ta lly
ill.
No s ig n ific a n t re la tio n s h ip between the closeness o f the A lz h e im e r's p atie nt and the
ca re g ive r in re la tio n to the amount o f burden fe lt by the ca re give r was found.
13
One o f the most d if fic u lt p roblem s faced by. some c a re g ive rs Is th a t o f ro le re v e rs a l
(A ron son , Teuslnk & M a h le r, 19 8 4 ). The person a fflic te d w ith A lz h e im e r's Disease becomes
m ore and m ore dependent on the ca re g ive r. T his dependence means th a t th ey need to be cared fo r
as i f th ey w ere sm a ll ch ild re n . Tem per ta n tru m s m ust be dealt w ith , d iapers changed, and the
i l l person may need to be hand fed. C hildre n often fin d i t v e ry d if fic u lt to assume the ro le o f
ca re g ive r to a p aren t w ith A lz h e im e r's Disease, a p are n t th a t may have been seen as stron g and
in v in c ib le . S tra in s o f c h ild re n c a rin g fo r parents w ith A lz h e im e r's Disease a re often
compounded by in te rg e n e ra tio n a l d ifferen ce (C a n to r, 1 9 8 3 ). In the case o f A lz h e im e r's Disease
the ca re g ive r m ust, in e ffe ct, become parents to th e ir own parents.
Husbands ty p ic a lly have
tro u b le assum ing the ro le th a t th e ir w ives once occupied. They tend to have d if fic u lty p re p a rin g
meals and doing household chores in addition to p e rfo rm in g the fu ll tim e jo b o f caregiving.
W ive s also have tro u b le assum ing the ro le o f c a re give r. Often husbands have taken care o f
finances and household re p a irs fo r ye a rs, and i t is fre q u e n tly d if fic u lt fo r the w ife to take over
those duties. Both spouses in c u r many pro ble m s a tte m p ting to take o ve r the ro le th a t was once
fille d by h is /h e r i l l spouse. M orycz ( 1 9 8 5 ) found th a t husbands tend to be much m ore w illin g
to ask fo r help outside o f the fa m ily than are w ives. W ives often feel as i f they should be able to
manage the house, finances, and the person w ith A lz h e im e r's Disease. Women tend to be in a
ca re g ivin g ro le fo r most o f th e ir liv e s , c a rin g fo r th e ir c h ild re n and th e ir husbands. It is v e ry
d if fic u lt fo r them to accept the fact th a t th is typ e of care giving is a lm ost im p ossib le to do
w ith o u t some fo rm o f help ( M o rycz, 19 8 5 ); C onversely, in a com parison o f spouse ca re g iv e rs
o f dem entia p a tie n ts, F ittin g , Rabins, Lucas, & Eastham ( 1 9 8 6 ) , found no differences in am ount
o f burden experienced by m ale and fem ale caregivers.
H
F inancial p ro ble m s may increase burden fo r many fa m ilie s ( C lc lr e lll, 19 8 4 ). The cost
o f In s titu tio n a liz a tio n o r h ire d ca re g iv e rs Is high. Most v ic tim s o f A lz h e im e r's Disease
e ve n tu a lly reach a state w he re constant care and s u p e rv is io n Is needed. T his is often d if fic u lt i f
the c a re g iv e r has a jo b outside the home. M in o r ity and low socioeconomic status fa m ilie s tend to
keep the fa m ily m em ber w ith A lz h e im e r's Disease at home u n til a v e ry advanced stage o f the
disease. They tend to make l i t t l e o r no use o f fo rm a l s u pp orts u n til some catastrophic s itu a tio n
forces them to in s titu tio n a liz e the fa m ily m em ber a fflic te d w ith A lz h e im e r's Disease. F am ilie s
at h ig he r socioeconomic le ve ls are m ore lik e ly to m ain ta in the fa m ily m em ber w ith A lz h e im e r's
Disease at home th ro ug h the use o f h ire d c a re g iv e rs and companions, ra th e r than p e rfo rm in g
in s tru m e n ta l ca re g ivin g tasks them selves o r m aking use o f c o m m u n ity in s titu tio n s . The
fin a n c ia l resources o f the fa m ily are an im p o rta n t fa c to r in d e te rm in in g the extent and q u a lity
o f fa m ily c a re g ivin g , the h ir in g and s u p e rv is io n o f additional help and th e use o f in s titu tio n a l
a lte rn a tive s.
Burcten experienced by ca re g ive rs o f c h ro n ic a lly im p a ire d o ld er adults has been
investigated in several d iffe re n t aspects as stated in the lite r a tu r e cited above. Gred &
S a in sb u ry ( 19 6 3 ) investigated burden in ca re g iv e rs o f the m e n ta lly i l l . Cantor ( 19 8 3 ) and
Sanford ( 19 8 5 ) , explored burden in c a re g iv e rs o f c h ro n ic a lly im p a ire d o ld er adults. The
samples used in these studies,contained both m e n ta lly and p h y s ic a lly im p a ire d older adults in
need o f care. Studies by Z a r it 1Todd, and Z a rit ( 19 8 6 ) , M o ry c z , (
19 8 5 ) ,
Scott, Roberto, and
H utton ( 1 9 8 6 ) , W in og ro n d 1F is k , K ir s lin g , and Keyes ( 1 9 8 7 ) , and F ittin g , Rabins, Lucas, and
Eastham ( 19 8 6 ) examined burden o n ly in c a re g iv e rs o f older adults w ith A lzh e im e r's disease.
Poulshtffik and D ie m lin g ( 19 8 4 ) , in an exam ination o f the m u ltid im e n s io n a l aspects o f burden
discovered an association between m ental in ca p a city in i l l older adults and burden levels.
15
Increased m ental Incapacity was found to be associated w ith Increased burden levels, T his study
w i ll address w hat seems to be a d e fic it In the c u r r e n t . lite r a tu r e , com parisons between
ca re g iv e rs o f the p h y s ic a lly and m e n ta lly (A lz h e im e r's a fflic te d ) im p a ire d elders.. M ental
Incapacity can be profound In those s u ffe rin g fro m A lz h e im e r's Disease. Therefore c a re g ive rs
o f o ld er adults w ith A lz h e im e r's Disease could be expected to experience h ig h e r levels o f burden
and expression than ca re g ive rs o f p h y s ic a lly i l l o ld er adults,
L ife Events and Depression
Num erous studies have demonstrated the re la tio n s h ip between s tre s s fu l life events and
depression ( M y e rs , L ln d e n th a l, Pepper & O strander, 19 7 2 ; Lloyd, 19 8 0 ; P a ykel, M y e rs ,
D le n a ltl K le rm a n , L in d e n th a l, & Pepper, 1 9 6 9 ). M y e rs , L in de ntha l, Pepper & Ostrander
( 19 7 2 ) Investigated the re la tio n s h ip between s tre s s fu l life events and m ental status o ve r a tw o
ye a r period w ith a system atic ran do m ly sampled population in a m e tro p o lita n area. Mental
status and recent changes In life events w ere recorded and then again recorded two ye a rs la te r,
Increased changes in s tre s s fu l life events w ere found to be related to increased pathology on the
m ental status exam.
Paykel et.al. ( 19 6 9 ) compared a c o n tro l group and a group o f depressed patients on
recent s tre s s fu l lif e events. The depressed p atients reported n e a rly th re e tim e s as many
im p o rta n t s tre s s fu l life events in the s ix m onths p r io r to the onset o f the depressive episode as
did the c o n tro l group.
S u p p o rt system s have been found to decrease the like lih o o d o f depression fo llo w in g
s ig n ific a n t life events. C aregivers often fin d th a t th e ir c irc le o f social and fa m ilia l s u p p o rt
decreases when th e ir lif e becomes consumed w ith caregiving. When high lif e event scores
( W a rh e it, 19 7 9 ) showed s ig n ific a n t re la tio n s h ip s to increased depressive sym ptom ology,
16
persons w ith p e rso n a l, f a m ilia l, and In te rp e rso n a l resources had s ig n ific a n tly less depressive
sym ptom ology than did those w ith o u t resources.
P a y k e l, P ru s o ffl & U hlenhuth ( 1 9 7 1 ) asked subjects to ra te the s e v e rity of stress
associated w ith v a rio u s life events. T h e ir fin d in g s suggest that the death o f a spouse o r close
fa m ily m em ber, h o sp ita liza tio n o f a fa m ily m em ber, and the loss o f a p e rs o n a lly valuable object
are e x tre m e ly s tre s s fu l events. Financial d iffic u ltie s , separation fro m a s ig n ific a n t person,
and a change in lin e o f w o rk a re m oderately s tre s s fu l life events. Each o f these life events are
not uncommon fo r ca re g ive rs o f c h ro n ic a lly im p a ire d older adults ( Chenowith &
S p e n ce r,19 8 6 ; Mace & Rabins, 1 9 8 1 ),
The burden associated w ith c a rin g fo r a fa m ily m em ber w ith A lz h e im e r's Disease has
been lin ke d to depression in ca re g ive rs ( Poulshock & D e im lin g , 1 9 8 4 ; Pagel, Becker, &
Coppel, 19 8 5 ; D rin k a , S m ith , & D rin k a , 1 9 8 7 ), The ca re give rs tend to feel as i f they have
lost co n tro l over th e ir own live s. It is lik e ly th a t th is feeling o f loss o f c o n tro l can lead to
depression in caregivers. Also, h ig h e r levels o f burden can lead to depression, w hich can in
t u r n , lead to h ig h e r leve ls o f burden. T his can fo rm a dangerous cycle w h ich affects both the
ca re g ive r and i l l older adult.
Statement o f the Problem
T his study is designed to exam ine burden and depression in c a re g iv e rs o f elders w ith
A lz h e im e r's Disease and ca re g ive rs o f e lders w ith c h ro n ic physical im p a irm e n ts. The
experience o f c a rin g fo r an older adult w ith A lz h e im e r's Disease w i ll be compared w ith the
experience o f c a rin g fo r a p h y s ic a lly im p a ire d o ld er adult. It Is expected th a t the experience o f
these tw o groups w i ll be d iffe re n t, even when th e re is no difference between them in the areas
o f ca re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn e s s . It is expected th a t
17
a g re a te r degree o f burden and depression w i ll be experienced b y c a re g iv e rs o f older adults
w ith A lz h e im e r's Disease than fo r ca re g iv e rs o f p h y s ic a lly Im p a ire d e ld e rly . It 'Is also expected
th a t th e re w i ll be a p o s itiv e re la tio n s h ip between experience o f burden and depression fo r both
ca re g ive rs o f p h y s ic a lly im p a ire d e ld e rly and c a re g iv e rs o f older a du lts w ith A lzh eim er's
Disease. Areas w hich appear to be p a r tic u la r ly s tro n g sources o f burden o r depression fo r
ca re g ive rs w i ll be explored b y e xam ining re s p o n s e to s p e c ific Item s on the measures o f burden
and depression.
18
CHAPTER 3
METHODOLOGY
T his section w i ll present the methodology o f the study. The sam ple, research
in s tru m e n ts , a d m in is tra tio n o f the in s tru m e n ts , hypotheses, and s ta tis tic s used to analyze the
data w i ll be described.
Research Hypotheses
1. There w i ll be no d ifferences between c a re g ive rs o f elders w ith A lz h e im e r's Disease and
ca re g ive rs o f e lders w ith c h ro n ic p hysical im p a irm e n ts in the areas o f ca re give r age, i l l
re la tiv e age, length o f re la tio n s h ip , and length o f illn ess.
2. Burden w i ll be g re ate r fo r ca re g ive rs o f elders w ith A lz h e im e r's Disease than fo r c a re g iv e rs
o f p h y s ic a lly im p a ire d e ld e rly .
3. Depression w i ll be g re a te r fo r ca re g ive rs o f elders w ith A lz h e im e r's Disease than fo r
ca re g ive rs o f p h y s ic a lly im p a ire d e ld e rly .
4. There w i ll be a p o s itiv e re la tio n s h ip between the amount o f burden experienced by the
ca re g ive r and depression.
Design Statement
The e xp e rim e n ta l design used was a s ta tic group com parison as defined by Campbell and
S tanley ( 19 6 3 ). The th re a ts to in te rn a l and e xte rn a l v a lid ity w hich a re in h e re n t to th is design
are se le ction , m o r ta lity , in te ra c tio n o f selection and m a tu ra tio n , and the in te ra c tio n of selection
and the e xp e rim e n ta l treatm ent,
19
Sample
Samples fro m tw o populations w ere used In th is study. The populations studied w e re ,
( a) ca re g ive rs o f o ld er adults w ith A lz h e im e r's Disease and ( b ) c a re g iv e rs o f p h y s ic a lly
Im p a ire d older adults.
Subjects fo r both samples w ere re c ru ite d through physicians In the G allatin and P a rk
County area. T h ir t y - f o u r area physicians w ere contacted v ia a le tte r (A ppendix B ) w hich was
follow ed b y a phone ca ll. The names and adresses o f a ll p hysicians contacted w ere obtained fro m
the y e llo w pages o f the local phone book. Seven o f the t h ir t y - f o u r p hysician s contacted agreed to
p a rtic ip a te In the study. Those physicians who did not p a rtic ip a te In the stu d y, did not respond
to the le tte r o r to repeated phone messages le ft by the author. The p hysician s who did
p a rtic ip a te selected fro m th e ir p atients those who w ere o rg a n ic a lly o r p h y s ic a lly Im p a ire d ,
s t i l l resided in th e ir own home, and had a p r im a r y ca re g ive r w hich was a spouse o r ch ild . The
physician s who chose to p a rtic ip a te then supplied th e a uthor w ith the name o f the c a re g iv e r,
n a tu re o f re la tio n s h ip to the i l l older a d u lt, phone num ber o f c a re g iv e r, address o f c a re g iv e r,
name o f the
111 older
a d u lt, and diagnosis o f the
111 o ld er
adult. T w en ty-seve n subjectss w ere
re fe rre d to the author. Of these tw e n ty-se ve n r e f e r r a l subjects tw e n ty -tw o p a rtic ip a te d In the
stu dy, c o n s titu tin g a r e tu r n ra te o f e ig h ty -o n e percent.
The combined sam ple consisted o f 2 2 subjects who w ere c a rin g fo r a c h ro n ic a lly 111
o ld er a d u lt (T a b le I ), The mean age o f the c a re g iv e rs was 6 2 .6 4 , w h ile the m am age o f th e
111
older adults th ey w ere c a rin g fo r was 7 4 ,6 7 . The re la tio n s h ip between the ca re give r and th e 111
o ld er a d u lt tended to be long te r m , an average o f 4 4 .0 5 years. The length o f the Illn e s s o f the i l l
older a du lt ranged fro m one q u a rte r o f a y e a r to tw e n ty y e a rs w ith a mean o f 6 .3 0 years. The
20
ca re g ive rs in the sample w ere c a rin g fo r older adults w ith the fo llo w in g a rr a y o f illnesses:
A lz h e im e r's disease, emphysema, h ea rt p ro b le m s, high blood p re s s u re , cancer, m u ltip le
s c le ro s is , diabetes, d ehydration, and f r a ilt y .
Table I. Combined Sample Demographics
V a ria ble
N
X
SD
M in im u m
M axim um
C aregiver Age
22
6 2 .6 4
1 5 .6 7
2 4 .0 0
8 3 .0 0
111 R elative's Age
21*
7 4 .6 7
11.51
5 1 .0 0
9 6 .0 0
Length o f R elationship (y e a rs )
22
4 4 .0 5
1 2 .5 3
20.00
68.00
Length o f Illn e ss
22
6 .3 0
5 .1 5
.2 5
20.00
^Decreased N size due to questions le ft blank on questionnaire
The tw o samples w ere composed o f c a re g ive rs o f elders w ith A lz h e im e r's disease and
ca re g ive rs o f e lders w ith c h ro n ic physical im p a irm e n ts (Table 2 ), Eight o f the subjects w ere
c a rin g fo r e ld ers w ith A lz h e im e r's Disease, fo urte en w ere c a re g ive rs o f e ld ers w ith c h ro n ic
physical im p a irm e n ts. The mean age o f c a re g ive rs o f elders w ith A lz h e im e r's disease was
6 9 . 13 , w h ile the mean age o f the e lders w ith A lz h e im e r's disease th e y w e re c a rin g fo r was
7 3 .8 9 (T a b le 3 ). The mean age o f ca re g ive rs o f e ld ers w ith c h ro n ic p hysical im p a irm e n ts was
5 8 .9 3 , w h ile the mean age o f the e lders w ith c h ro n ic physical im p a irm e n ts they w ere c a rin g
fo r was 7 5 , 15.
Fourteen o f the c a re g iv e rs w ere spouse ca re g ive rs and e ig ht care give rs w ere
c h ild re n c a rin g fo r a c h ro n ic a lly i l l parent. Sixteen o f the ca re g iv e rs w ere fem ale, s ix w ere
male.
21
Table 2. C aregiver Demographics
V a ria ble
N
%
XAge
SD
8
36
6 9 .1 3
1 0 .1 9
1 7 .3 2
Type o f
C. G.'s o f Elders W ith A lz h e im e r's
C are-
C. G.'s o f P h y s ic a lly Im pa ire d Elders
H
64
5 8 .9 3
g iv e r
Total
22
100
------
R e la tio n -
C. G.'s C aring fo r a Spouse
H
64
7 0 .3 6
8 .7 7
ship
C. G.'s C aring fo r a Parent
8
36
4 9 .1 3
1 6 .3 0
Total
22
100
------
C. G .'so f
Male
I
12
7 6 .0 0
Elders W ith
Female
7
88
6 8 .1 4
A lz h e im e r’s
Total
8
100
------
C. G .'s o f Phys.
Male
5
36
5 7 .2 0
2 2 .7 2
Im pa ire d
Female
9
64
5 9 .8 9
1 5 .0 5
Elders
Total
14
100
—
—
---
— —
—
1 0 .5 9
—
—
-----
22
Table 5. H l R elative Demographics
V a ria ble
Type
J
N
%
XAge .
SD
8
36
7 3 .8 8
2 .7 0
14
64
7 5 .1 5
1 4.7 0
. Total
22
100
------
Elders
Male
4
50
7 3 .0 0
2 .1 6
W ith
Female
4
50
7 4 .7 5
3 .2 0
A lzh e im e r's
Total
8
100
-----
P h y s ic a lly
M ale.
6
43
7 9 .0 0
8 .6 0
Im paired
Female
8
57
7 2 .7 5
1 7 .6 3
Elders
Total
14
100
-----
Elders W ith A lzh e im e r's
P h y s ic a lly Im pa ire d Elders
O flll
R elative
-----
—
—
—
—
Q uestionnaire
T his section describes the cover le tte r , request fo r in fo rm a tio n and in s tru m e n ts used to
measure c a re g ivin g , depression, burden and demographics.
The q uestionnaire ( appendices
C ,D ,E,F, 6 ,H) was fo rm a tte d using the Chicago 12 p o in t fo n t to fa c ilita te easy reading by a
p re d o m in a n tly older population.
23 '
Cover L e tte r
The cover le tte r (Appendix C) was used to Introduce the auth or and the purpose o f the
study to the ca re give r. The cover le tte r contained a statement o f c o n fid e n tia lity and in s tru c tio n s
p e rta in in g to com pleting and re tu rn in g the questionnaire to the author.
Request fo r In fo rm a tio n
The request fo r in fo rm a tio n ( Appendix D) was provided so th a t interested subjects could
receive the re s u lts o f the study. A c o n fid e n tia lity statem ent was included in the request fo r
in fo rm a tio n . The r e tu r n o f the request fo r in fo rm a tio n fo rm was optional fo r the subject.
In fo rm a tio n Sheet
The in fo rm a tio n sheet (Appendix E) was designed b y the a uthor. It was used to gain
in fo rm a tio n about the ca re g ive rs and th e ir re la tio n s h ip w ith th e ir i l l loved one. It contained
s h o rt answer questions concerning the n a tu re o f the re la tio n s h ip , length o f the re la tio n s h ip ,
type o f im p a irm e n t, age o f the c a re g iv e r, age o f the im p aired person, s u p p o rt system o f the
c a re g iv e r, gender, hours p e r day spent c a re g ivin g , a ttitu d e tow ards choice about care giving and
average y e a rly income, A section fo r comments was also included (A ppendix I ).
Z a rit's Burden In te rv ie w
The Burden In te rv ie w ( Z a r it, O r r 1& Z a rit, 19 8 6 ) (Appendix F ) was especially
designed to re fle c t the stresses experienced by ca re g ive rs o f dementia patients. It can be used as
a s e lf - r e p o r t measure o r as an in te rv ie w measure. The Burden In te rv ie w consists o f a s e rie s o f
22 questions
to be answered by the ca re g ive r about the im pact o f the p a tie n t's im p a irm e n t on
the life o f the ca re give r. The responses are coded on a 0 - 4 L ik e rt scale, O being lit t le o r no
im pact and 4 being severe im pact. The Burden In te rv ie w is scored by sum m ing the responses o f
the in d iv id u a l items. Scores range fro m 0 - 8 8 . N orm s fo r the Burden In te rv ie w have not been
24
computed, b ut estim ates o f the degree o f burden have been made fro m p r e lim in a r y findings.
These are: 0 - 2 0 li t t l e o r no burden, 2 1- 4 0 m ild to moderate burden, 4 1 - 6 0 moderate to
severe burden, and 6 1- 8 8 severe burden ( personal correspondence w ith Steven H Z a rit).
In te rn a l r e lia b ilit y fo r the Burden In te rv ie w has been estim ated using Cronbach's alpha
at .8 8 (M assinger, 19 8 5 ) and .91 (G allag h er, e ta l., 1 9 8 5 ). Test re te s t r e lia b ilit y is reported
at .71 (G allag h er, et a l., 1 9 8 5 ). V a lid ity has been estimated by c o rre la tin g the total score w ith
a sing le global ra tin g o f burden ( r = . 7 1 ), and by c o rre la tin g the total score w ith the B r ie f
Symptom In v e n to ry ( D erogatis, et a l., 1 9 7 0 ) ( r = . 4 1 ).
The Z a rit Burden In te rv ie w has been used to measure burden in ca re g iv e rs of older
adults s u ffe rin g fro m dem entia, A lzh e im e r's Disease, and depression ( D rin k a , S m ith , & D rin k a ,
1 9 8 7 ; F ittin g , Rabins, Lucas, & Easthani, 1 9 8 6 ; L ip tz in , Grob, & Eisen, 1 9 8 8 ; Scott, R oberto,
& H utton, 1 9 8 6 ; W in og ro n d , F isk, K ir s lin g , & Keyes, 19 8 7 ; Z a rit, Todd, & Z a rit 1 9 8 6 ).
In addition to o bta ining a to ta l score Z a rit Burden In te rv ie w score fo r each c a re g iv e r,
in d iv id u a l item s w i ll be examined to ascertain w hich areas appear to be most h ig h ly associated
w ith burden in caregivers.
Beck Depression In ve n to ry
The Beck Depression. In v e n to ry (Appendix G), Is the most fre q u e n tly used method of
assessing s e v e rity o f depression (S haw , ValTis, & McCabe, 19 8 5 ). The scale is c lin ic a lly
derive d and designed to measure both a ttitudes and sym ptom s o f depression. Each category
describes a sp e c ific beh aviora l m anifestation o f depression. Each item consists o f a graded
se rie s o f 4 - 5 s e lf e valua tive statem ents w hich are ranked to re fle c t the s e v e rity of the
sym ptom fro m n e u tra l to m axim um s e v e rity (B e c k , W ard, Mendelson, M o c k , & Erbaugh,
1 9 6 1 ). The Beck Depression In v e n to ry has been shown to be app lica ble across cu ltu re s. S p lit
25
h a lf - r e lia b ilit y co e fficie n ts have been rep orte d between ,5 8 - .9 3 . The c o n c u rre n t v a lid ity of
the Beck Depression In v e n to ry has co rre la te d w ith c lin ic ia n 's ra tin g s o f depth o f depression
re s u ltin g in c o rre la tio n s ranging fro m . 6 2 - 7 7 (Shaw , V a llis & McCabe, 1 9 8 5 ).
The Beck Depression In v e n to ry has been used w ith many d iffe re n t populations. Pagel,
B e c k e r, & Coppel ( 19 8 5 ) used the Beck Depression In v e n to ry to inve stiga te depression in
ca re g ive rs o f o lder adults w ith A lzh e im e r's Disease. The Beck Depression In v e n to ry was used
by Sowa & Lustman ( 19 8 4 ) in an investigation o f life stress and depression.
In addition to o bta ining a to ta l score Beck Depression In v e n to ry score fo r each c a re g iv e r ,
in d iv id u a l item s w ill be examined to ascertain w hich areas appear to be most h ig h ly associated
w ith depression in caregivers.
Procedures
The study design was su bm itted to and deemed acceptable by the Human Subjects
Com m ittee (Appendix A). T h ir t y - f o u r area p hysician s w ere contacted b y le tte r (Appendix B)
in December 1 98 8. Phone contact was made o r attem pted in J a n u a ry and F e b ru a ry 19 8 9 .
Seven area physicians agreed to p a rtic ip a te in the study and re fe rre d a to ta l o f tw e nty-seve n
subjects to the author. C aregiver names and addresses w ere received by the a uth or in F e b ru a ry ,
M arch, A p r i l , and May 19 8 9 . W here possible c a re g ive rs w ere contacted by the r e fe r rin g
physician o r the a uth or v ia a phone ca ll to gain consent.
Data co lle ction took place d u rin g May and June o f 19 8 9 . The su bjects received a packet
th rough the m ail w hich contained the fo llo w in g :
1. Cover L e tte r (Appendix C)
2. Request fo r In fo rm a tio n (Appendix D)
3. In fo rm a tio n Sheet (A ppendix E)
26
4. Z a rlt Burden In te rv ie w (A ppendix F)
5. Beck Depression In v e n to ry (Appendix 6 )
6. Thank You Sheet (A ppendix H)
7. Envelope, addressed to the author
The q uestionnaire was re tu rn e d to the a uth or o ver a th re e week perio d in May and June 19 8 9 .
T w e n ty -tw o o f the tw e n ty-se ve n subjects re tu rn e d the questionnaire w h ich yielded a e ig h ty one percent re tu r n rate.
Data A n alysis
The data was analyzed using t - tests fo r independent samples and the Pearson P ro du ct-M o m e nt
C o rre la tio n C oefficient ( Spatz & Johnson, 19 8 4 ).
1. t - tests fo r independent samples w ith a level o f sign ifican ce at o r beyond .0 5 was used to
a scertain differen ce s between c a re g ive rs o f e lders w ith A lz h e im e r's Disease and
c a re g iv e r's o f e ld ers w ith ch ro n ic physical im p a irm e n ts in th e areas o f ca re give r age,
i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn e ss.
2. A t - t e s t fo r independent samples w ith a level o f significance at o r beyond .0 5 was used to
dete rm ine differen ce s in burden between ca re g ive rs of re la tiv e s w ith A lz h e im e r's and
c a re g iv e r's of re la tiv e s w ith c h ro n ic p hysical im p airm e n ts.
3.
A t - t e s t w ith a leve l o f sign ifican ce at o r beyond the .0 5 level was used to determ ine
differen ce s in depression between c a re g iv e rs o f re la tiv e s w ith A lz h e im e r's and
c a re g iv e r's Of re la tiv e s w ith c h ro n ic physical im p airm e n ts.
27
4. A Pearson P rcd u ct-M o m e n t C o rre la tio n C oefficient w ith a level o f significance at
o r beyond the .0 5 level was used to dete rm ine the re la tio n s h ip between burden and
depression.
5. Mean scores on each item in the Z a rit Burden In te rv ie w and the Beck Depression In v e n to ry
w i ll be graphed in o rd e r to exam ine s p e c ific areas o f burden and depression.
28
CHAPTER 4
RESULTS
Depression and burden in ca re g ive rs o f e ld ers w ith A lz h e im e r's Disease and care give rs
'o f e lders w ith ch ro n ic p hysical im p a irm e n ts w ere studied to test th e fo llo w in g a lte rn a tiv e
hypotheses:
1. There w i ll be no differences between c a re g ive rs o f e lders w ith A lzh e im e r's
Disease and ca re g ive rs o f e lders w ith c h ro n ic physical im p a irm e n ts in the areas
o f ca re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn ess.
2. Burden w i ll be g re a te r fo r c a re g ive rs o f e lders w ith A lz h e im e r's Disease than
fo r ca re g ive rs o f elders w ith c h ro n ic physical im p a irm e n ts .
3. Depression w i ll be g re ate r fo r ca re g ive rs o f elders w ith A lz h e im e r's Disease than fo r
ca re g ive rs o f e lders w ith c h ro n ic p hysical im p airm e n ts.
4. There w i ll be a p o s itiv e re la tio n s h ip between the amount o f burden and depression
experienced by the caregiver.
The re s u lts o f the data analyses fo r each o f the hypotheses is rep o rte d in the fo llo w in g
sections. An explanation and in te rp re ta tio n o f these re s u lts w i ll be p rovided in Chapter 5.
F ir s tly , means and standard deviations fo r the Z a rit Burden In te rv ie w and Beck Depression
In v e n to ry , ca re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn e s s fo r
combined samples w i ll be reported. This w i ll be follow ed by a com parison o f care give rs o f
e lders w ith A lz h e im e r's Disease and c a re g ive rs o f e lders w ith c h ro n ic physical im p airm e n ts.
29
Combined Samples
Combined sam ple s ta tis tic s fo r the Z a rit Burden In te rv ie w , Beck Depression In v e n to ry ,
ca re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn e s s a re reported in Table
4.
The mean age o f the ca re g ive rs surveyed was 6 2 .6 4 , w ith a standard deviation of 17 .2 8 .
The youngest ca re g ive r was 2 4 and the oldest was 8 3 ye a rs o f age.
The mean age o f the i l l o ld er adults who w ere re c e iv in g care was 7 4 .6 7 , w ith a standard
deviation o f 1 1,51. The m in im u m and m axim um age o f the i l l o ld er a du lts was 5 1 through 96.
Table 4. Combined Sample S ta tis tic s
VARIABLE
X
Z a rit Burden In te rv ie w
SD
N
M in im u m
M axim um
3 4 .1 8
1 7 .2 8
22
6 .0 0
6 4 .0 0
7 .9 6
6 .1 9
22
.0 0
2 3 .0 0
C aregiver Age (y e a rs )
6 2 .6 4
1 5 .6 7
22
2 4 .0 0
8 3 .0 0
111 R elativeA ge (y e a rs )
7 4 .6 7
11.51
21*
5 1 .0 0
9 6 .0 0
Length o f R elationship (y e a rs )
4 4 .0 5
1 2 .5 3
22
2 0 .0 0
6 8 .0 0
6 .3 0
5 .1 5
22
.2 5
2 0 .0 0
Beck Depression In v e n to ry
.
Length o f Illn e ss (y e a rs )
^Decreased N size due to questions le ft b lank on the questionnaire
The mean length o f th e re la tio n s h ip between the ca re g ive r and the i l l re la tiv e was 4 4 .0 6
ye a rs and Includes m a rita l and parental re la tio n s h ip s . The standard deviation was 12 .5 3 . The
longest re la tio n s h ip had lasted 6 8 ye a rs and the s h o rte st was a 2 0 y e a r re la tio n s h ip .
30
The 111 re la tiv e s o f the ca re g ive rs sampled had been 111 an average o f 6 .3 0 y e a rs, w ith a
standard deviation o f 5 .1 5 , The sh ortest length o f Illn e s s was one q u a rte r o f a year and the
longest was 2 0 years.
The mean Z a rit Burden In te rv ie w score fo r the combined n o f 2 2 subjects was 3 4 . 18 ,
standard deviation 17 .2 8 , w ith a m in im u m score o f 6 and a m axim um score o f 64.
The mean Beck Depression In v e n to ry score fo r the combined n o f 2 2 subjects was 7 .9 6 ,
stancbrd deviation 6 .2 0 , w ith a m in im u m score o f 0 .0 0 and a m axim um score o f 2 3 .0 0 .
Tests o f Hypotheses
H ypothesis I
Indepenctent samples t - tests w ere used to compare c a re g iv e rs o f e ld ers w ith A lz h e im e r's
Disease and ca re g ive rs o f e ld ers w ith c h ro n ic physical im p a irm e n ts on th e fo llo w in g v a ria b le s :
c a re g iv e r's age, i l l re la tiv e s age, level o f im p a irm e n t, closeness at p re se n t, length of
re la tio n s h ip , length o f illn e s s , hou rs spent in care, feelings o f having s u p p o rt, and a b ilit y to
leave the i l l re la tiv e unattended.
Independent samples t - tests yielded no s ig n ific a n t differences between ca re g ive rs of
e ld ers w ith A lz h e im e r's Disease and c a re g iv e rs o f e lders w ith c h ro n ic physical im p a irm e n ts on
the p re v io u s ly mentioned v a ria b le s (T a b le 5 ).
31
T a b le s . Comparison o f the Two Groups
VARIABLE
I
Care­
N
C a re g ive r's o f A lzh e im e r's
8
I
X
6 9 .1 3
I
SD
C aregivers o f phys. im p a ire d
111
A lzh e im e r's
14
5 8 .9 3
1 7 .3 2
8
7 3 .8 8
2 .7 0
R elative
Age
P h y s ic a lly Im paired
Length
C are g ive r's o f A lzh e im e r's
13
7 5 .1 5
1 4 .7 0
8
4 3 .6 3
1 2 .2 5
o f R elalto n sh ip
C aregivers o f phys. im p aired
Length
A lzh e im e r's
14
4 4 .2 9
1 3 .1 4
8
5 .5 6
2 .3 8
rkf
O
T
Illne ss
P h y s ic a lly Im paired
14
6 .7 3
1.51
N.S.
-.2 4 1
N.S.
-.1 1 6
N.S.
- .5 0 1
N.S.
6 .2 6
Hypothesis 2
Burden w i ll be g re a te r fo r ca re g ive rs o f e lders w ith A lz h e im e r's Disease than fo r
ca re g ive rs o f elders w ith c h ro n ic p hysical im p a irm e n ts.
P
1 0 .1 9
g iv e r
Age
t
32
Table 6. Comparison o f Z a rit Burden In te rv ie w Scores
VARIABLE
Z a rit
C.G. o f A lz h e im e r's
N
X
SD
8
3 1 .8 8
2 1 .2 4
Burcten
t
- .4 6 4
In te rv ie w
C.G. o f phys. im p a ire d
M
5 5 .5 0
P
N.S.
1 5 .3 0
An independent samples t - t e s t showed no s ig n ific a n t d iffe re n ce between ca re g ive rs o f
e lders w ith A lz h e im e r's Disease and c a re g ive rs o f e lders w ith c h ro n ic p hysical im p a irm e n ts
and the amount o f burden th ey experienced (T a b le 6 ).
H ypothesis 3
Depression w i ll be g re a te r fo r c a re g ive rs o f e lders w ith A lz h e im e r's Disease than fo r
ca re g ive rs o f e ld ers w ith c h ro n ic physical im p a irm e n ts.
Table 7. Comparison o f Beck Depression In v e n to ry Scores
VARIABLE
Beck
N
C.G. o f A lz h e im e r's
8
X
SD
8 .5 0
8 .4 0
Depression
In v e n to ry
C.G. o f phys. Im p a ira j
14
7 .6 4
t
P
.3 0 6
N.S.
4 .8 6
An independent samples t - t e s t showed no s ig n ific a n t d ifference between c a re g ive rs of elders .
w ith A lz h e im e r's Disease and ca re g ive rs o f e ld ers w ith c h ro n ic physical im p a irm e n ts and the
amount o f depression they experienced (T a b le 7 ),
33
Hypothesis 4
There w i l l be a p o s itiv e re la tio n s h ip between the amount o f burden and depression
experienced b y the c a re give r.
Table 8. R elationship Between Burden and Depression
VARIABLE
I
N
Z a rit Burden In te rv ie w
I
21
r
.7 6 0
Beck Depression In v e n to ry
P
r2
<.05
.5 7 8
21
■
A Pearson P ro d u ct-M o m e n t C o rre la tio n C oefficient fo r independent samples revealed a
s ig n ific a n t p o s itiv e c o rre la tio n between the am ount o f burden and depression experienced b y the
ca re g ive r (T a b le 8 ).
Exam ination o f S p e c ific Item s
The combined sam ple mean score, standard d eviatio n, n u m b e r, and standard e r r o r fo r
the ite m s on the Z a rit Burden In te rv ie w a re represented in Table 9 and F ig u re I (Appendices J
and K). The ite m s w ith the highest mean scores w ere item s 3 , 7 , 8 , and 14. Item 3 ( X = 2 .0 9 1)
pertained to stre s s due to c a rin g fo r an i l l o ld e r a d u lt w h ile also a tte m p tin g to meet fa m ily and
w o rk re s p o n s ib ilitie s . Item 7 ( X = 2 .0 9 1) p ertained to fe a r o f w hat the fu tu r e holds fo r the i l l
re la tiv e . Item 8 ( X = 3 .7 2 7 ) asked the c a re g iv e r how dependent th ey feel the i l l re la tiv e is on
them. Item 14 ( X = 2 .4 5 5 ) asked the c a re g iv e r i f the i l l re la tiv e fe lt th e y w ere the o n ly one
who could care f o r h im /h e r . The ite m s w ith the low est mean score on the Z a rit Burden
In te rv ie w w ere item s 4 , 5 , and 6. Item 4 ( X = .7 7 3 ) pertained to em barressm ent o ver the i l l
34
re la tiv e s b e h a vio r, item 5 (X = 1.0 0 0 ) to anger fe lt tow ard the i l l re la tiv e , and item 6
(X = 8 10 ) to negative effects on the fa m ily .
The combined sam ple mean score, standard d eviatio n, n u m b e r, and standard e r r o r fo r
the item s on the Beck Depression In v e n to ry a re represented in Table 11 and F igure 2
(Appendices M and N). The item s w ith the highest mean score w ere P , Q, and U. Item P
( X = ,9 9 5 ) denotes p ro ble m s w ith insom nia, item Q ( X = .8 6 4 ) w ith fa tig a b ility , and item U
(X = 1.0 0 0 ) w ith loss o f lib id o . The item s w ith the lowest mean score on the Beck Depression
In v e n to ry w ere E10 , and I. Item E (X = .9 5 5 ) concerns feelings o f g u ilt, item 6 (X=O O O )
fe eling s o f s e lf- d is lik e , and item I (X = .0 0 0 ) concerns suicid al ideation.
35
CHAPTER'S
DISCUSSION
The purpose o f th is research study was to exam ine burden and depression In care give rs
o f e lders w ith A lz h e im e r's Disease and c a re g ive rs o f elders w ith c h ro n ic p hysical im pairm ents.
T his chapter w i ll discuss m ajor fin d in g s , lim ita tio n s , and conclusions o f the study.
Im p lic a tio n s o f these fin d in g s and suggestions fo r fu tu re research w i ll also be discussed.
Combined Samples
The people studied w ere p rim a r y c a re g iv e rs (spouses and c h ild re n ) o f c h ro n ic a lly i l l
o ld er a du lt re la tiv e s . The mean age of the c a re g iv e rs was 6 2 .6 4 , w h ile the mean age o f the o ld e r
adults th ey w ere c a rin g fo r was 7 4 ,6 7 . The age d ifferen ce between c a re g iv e rs and i l l older
adults can be a ttrib u te d to the fact that some o f the ca re g ive rs w ere spouses and some w ere
c h ild re n o f the i l l older a d u lt' w hich low ered the mean age o f the c a re give rs. The fact th a t the
mean age o f the ca re g ive rs surveyed was 6 2 .6 4 indicates th a t c a re g iv e rs o f c h ro n ic a lly
im p a ire d older adults tend to be older adults themselves. C aregivers who a re them selves older
a dults, may s u ffe r fro m decreased stam ina and poor health them selves, w h ic h can make
ca re g ivin g an even m ore strenuous task. The average length o f the re la tio n s h ip between
ca re g ive rs and the i l l older a du lt was 4 4 .0 5 years. S ix ty - fo u r percent o f these re la tio n s h ip s
w ere spousal and 3 6 % w ere parental. The i l l older adults had been c h ro n ic a lly i l l fo r an
average o f 6 .3 0 ye a rs, w hich means the c a re g ive rs sampled had been c a rin g ,fo r an i l l older
a du lt an average o f over s ix years.
36
The mean Z a rlt Burden In te rv ie w score fo r the ca re g ive rs surveyed was 3 4 . 18 w hich is
in the upper m ild to moderate burden range (see Appendix L). Sixteen ( 7 3 % ) o f the ca re g ive rs
w ere e xpe rie ncing some amount o f burden at the tim e o f the s u rv e y (T a b le 10 ). Six o f the
ca re g iv e rs surveyed re p o rte d e xpe rie ncing no burden, seven w ere e xpe rie ncing m ild to
moderate burden, seven moderate to severe burden, and tw o c a re g ive rs rep o rte d experiencing
severe burden. T his re in fo rc e s the fin d in g s o f Cantor ( 19 8 3 ) , Sanford ( 19 7 5 ) , S ilversto ne
( 19 8 5 ) , and Grad and S a in sb u ry ( 19 6 3 ) and o th e r studies w hich investigated burden in
ca re give rs. The fact th a t 73% o f the c a re g ive rs w ere e xperiencing some amount o f burden
im p lie s th a t they are not re ce ivin g adequate support. T his lack o f s u p p o rt could stem fro m
inadequate co m m un ity s e rvice s, fa m ilia l s u p p o rt, and in fo rm a tio n sources. S ix of the
ca re g ive rs rep orte d e xpe rie ncing no burden. The job o f c a rin g fo r a c h ro n ic a lly i l l older a du lt
would seem to be burdensome to some degree under alm ost any circu m stan ces, th e re fo re those
re p o rtin g no burden could be m in im iz in g the burden they are under.
The areas on the Z a rit Burden In te rv ie w w h ich the c a re g ive rs found to be most
burdensome pertained to burden due to c a rin g fo r an i l l older a du lt w h ile also a ttem pting to meet
fa m ily and w o rk re s p o n s ib ilitie s , how dependent the i l l re la tiv e is on the c a re g iv e r, fe ar of
w hat the fu tu re holds fo r the i l l re la tiv e , and feelings th a t the i l l re la tiv e believes the c a re g iv e r
to be the o n ly one capable o f c a rin g fo r h im /h e r. The questions p e rta in in g to em barrassm ent
over i l l re la tiv e 's b e h a vio r, anger when around the i l l re la tiv e , and negative effects on other
re la tio n s h ip s w ere the areas on the Z a rit Burden In te rv ie w w hich the c a re g iv e rs surveyed
found to be least burdensome (Appendices J & K). T his suggests th a t in te rv e n tio n s should focus
37
on the areas o f re s p ite and fa m ilia l and co m m un ity s u p p o rt fo r the c a re g iv e r w hich would
enable the ca re g ive r to meet o the r fa m ily needs and lessen the dependence o f the i l l re la tiv e on
the ca re give r.
The mean Beck Depression In v e n to ry score fo r the c a re g ive rs was 7 .9 6 w hich is in the
high norm al range (see Appendix 0 ). S ix ty - fo u r percent ( 1 4 ) o f the c a re g iv e rs scored in the
norm al range w h ile 36% ( 8 ) o f those surveyed scored in the m ild to moderate depression range
(T a b le 12 ). S ix o f the ca re g ive rs scored in the m ild depression range and tw o care give rs scored
in the moderate depression range. None o f the c a re g ive rs surveyed scored in the severe
depression range. The r e la tiv e ly low o v e ra ll Beck Depression in v e n to ry scores could re s u lt
fro m the high face v a lid ity o f the in stru m e n t. Older adults m ig ht be less prone to re p o rt
depressive sym ptom s than younger persons due to generational differences.
The Beck Depression In v e n to ry categories w hich the c a re g ive rs most often rated as the
most severe pertained to insom nia, fa tig a b ility , and loss o f lib id o . T h is could e a sily be due to
the increased age o f the persons in the sample. Older persons tend to sleep less at n ig ht than do
younger persons, fatigue e a s ie r, and s u ffe r fro m a decrease in lib id in a l im pulses. Those they
rated as least severe w ere g u ilt, s e lf- d is lik e , and suicid al ideation. As p re v io u s ly stated,
In te rv e n tio n s w hich focus on re s p ite , fa m ilia l and co m m un ity s u p p o rt could lessen the
ca re g ive rs feelings o f fatigue and sleep disturbance.
Exam ination o f the Hypotheses
H ypothesis I - Comparison of the Two Groups
Com parisons w ere made between c a re g iv e rs o f elders w ith A lz h e im e r's and ca re give rs o f
elders w ith c h ro n ic p hysical im p a irm e n ts in o rd e r to check fo r p otential differences between
the tw o groups. There w ere no s ta tis tic a lly s ig n ific a n t differences between ca re g ive rs o f e ld ers
I
38
w ith A lz h e im e r's disease and ca re g ive rs o f elders w ith c h ro n ic p hysical im p a irm e n ts in the
areas o f ca re g ive r age, i l l re la tiv e age, length o f re la tio n s h ip , and length o f illn e s s o f im p aired
older adult. Both groups w ere e sse n tia lly equal on these v a ria b le s at the tim e o f the survey.
The o n ly v a ria b le w h ich tended to approach significance was c a re g iv e r age, w hich fo r c a re g ive rs
o f e lders w ith A lz h e im e r's disease was 6 9 . 13 , and 5 8 .9 3 fo r ca re g iv e rs o f elders w ith ch ro n ic
p hysical im p a irm e n ts. The reason fo r th is d iffe re n ce is due to the re la tio n s h ip d is trib u tio n
between the groups. F o r ty - th re e percent o f the c a re g iv e r's o f e lders w ith c h ro n ic physical
im p a irm e n ts w ere c a rin g fo r a parent w h ile o n ly 2 5 % o f the c a re g iv e rs o f e lders w ith
A lz h e im e r's disease w ere c a rin g fo r a parent. T his lowered the mean age fo r care give rs o f
e lders w ith c h ro n ic p hysical im p airm e n ts.
H ypothesis 2 - Burden
No s ig n ific a n t d iffe re n ce was found between c a re g ive rs o f e lders w ith A lzh e im e r's
Disease and ca re g ive rs o f e lders w ith c h ro n ic p hysical im p a irm e n ts in burden as measured by
the Z a rit Burden In te rv ie w . ,
C aregivers o f e lders w ith A lzh e im e r's Disease had a mean score o f 3 1.8 8 on the Z a rit
Burden In te rv ie w w hich denotes m ild to moderate burden. C aregivers o f e ld ers w ith c h ro n ic
p hysical im p a irm e n ts had a mean score o f 3 5 .5 0 on the Z a rit Burden in te rv ie w w h ic h also
denotes m ild .to moderate burden. These fin d in g s are consistent w ith those o f F ittin g , Rabins,
Lucas, & Eastham ( 19 8 6 ) who found no differen ce s in burden in c a re g iv e rs o f dementia patie nts
and c a re g iv e rs o f depressed patients.
The lack o f a s ig n ific a n t fin d in g could be a re s u lt o f the re la tio n s h ip d is trib u tio n between
the tw o groups. F o r ty - th re e percent o f the c a re g iv e rs o f p h y s ic a lly im p a ire d older adults w ere
c a rin g fo r a parent w h ile o n ly tw e n ty - fiv e percent o f c a re g ive rs o f o ld er adults w ith
39
A lz h e im e r's disease w ere c a rin g fo r a parent. The c a re g ive rs c a rin g fo r a p aren t m ight feel
m ore burdened due to the lik e lih o o d th a t th ey have m ore re s p o n s ib ilitie s and in te re sts outside
the ca re g ivin g ro le than do the c a re g iv e rs c a rin g fo r a spouse. T his could also be the reason th a t
ca re g ive rs o f p h y s ic a lly im p a ire d older adults scored s lig h tly hig he r on the Z a rit Burden
In te rv ie w than did ca re g ive rs o f o ld er adults w ith A lz h e im e r's Disease.
Hypothesis 3 - Depression
No s ig n ific a n t d iffe re n ce was found between c a re g ive rs o f e ld e rs w ith A lzh eim er's
Disease and ca re g ive rs o f e ld ers w ith c h ro n ic physical im p a irm e n ts in depression as measured
b y the Beck Depression In ven to ry.
C aregivers o f e ld ers w ith A lz h e im e r's Disease had a mean score o f 8 .5 0 on the Beck
Depression In v e n to ry w h ich is in the norm al range ju s t below the c u to ff fo r m ild depression.
C aregivers o f e ld ers w ith c h ro n ic p hysical im p a irm e n ts had a mean score o f 7 .6 4 on the B m k
Depression In v e n to ry , w h ich is in the n orm al range. In th is study c a re g iv e r's o f elders w ith
A lz h e im e r's Disease w ere found to y ie ld h ig h e r m o re s on the B m k Depression In v e n to ry than did
ca re g ive rs o f e ld ers w ith c h ro n ic p hysical im p a irm e n ts , though th is d iffe re n ce was not
s ta tis tic a lly s ig n ific a n t.
The s lig h tly h ig h e r score on the B m k Depression In v e n to ry fo r c a re g ive rs o f older
adults w ith A lz h e im e r's Disease could be due to the sp ou sal/p aren ta l re la tio n s h ip difference.
The spouse is losing the m a jo r re la tio n s h ip in h is /h e r life w hich could r e s u lt in feelings o f
hopelessness. The ca re g ive r c a rin g fo r a p aren t is often m a rrie d and has o th e r im p o rta n t
re la tio n s h ip s such as a spouse and c h ild re n w h ich w ould a llo w hope f o r the fu tu re . The
ca re g ive rs who a re c a rin g fo r could experience less depression because o f th is .
40
Hypothesis 4 - R elationship Between Burden and Depression
A s ig n ific a n t p o s itiv e re la tio n s h ip ( r = 7 7 , p < ,0 5) was found to e x is t between burden
experienced by ca re g ive rs and depression. It was found th a t as scores on the Z a rit Burden
In te rv ie w rose, scores on the Beck Depression In v e n to ry also tended to ris e . This indicates th a t
hig he r le ve ls o f burden experienced by ca re g ive rs o f older adults are often accompanied by
depressive symptoms. S tre ssfu l life events have been lin ke d to depression ( M ye rs, L in d e n th a l,
Pepper & O stra n d e r, 1 9 7 2 ; Lloyd, 1 9 8 0 ; P aykel, M y e rs , D ie n a lt, K le rm a n , Lindenthal, & .
Pepper, 19 6 9 ), Burden has been lin k e d to depression in c a re g ive rs in several previous studies
( Poulshock & D e im lin g 1 19 8 4 ; Pagel, Becker, & Coppel, 19 8 5 ; D rin k a , S m ith , & D rin k a ,
19 8 7 ). T his re la tio n s h ip , though s ta tis tic a lly s ig n ific a n t, does not mean th a t burden causes
depression o r th a t depression causes burden.
Im p lica tio n s and L im ita tio n s o f the Study
The fact th a t 73% of the ca re g ive rs surveyed w ere e xpe rie ncing some amount o f burden
dem onstrates th a t ca re g ivin g can be a s tre s s fu l life situ atio n. The association between high
leve ls o f burden and depression illu s tra te s how at r is k ca re g ive rs and the i l l re la tiv e s in th e ir
charge are in o u r society today. The c a re g ive r who feels burdened by the ca re g ivin g ro le and
also becomes depressed can become a less e ffe ctive ca re give r. Depression can sap energy,
s tre n g th , and the a b ilit y to concentrate, w hich a re q u a litie s that the c a re g iv e r needs to be in fu ll
possession o f in o rd e r to p ro vid e optim um care fo r the c h ro n ic a lly i l l re la tiv e . This
re la tio n s h ip between burden and depression has the potential to set in to m otion a downward
s p ira l of-depression and burden. The burdened c a re g iv e r could become depressed, w hich could
leave the ca re g ive r fe e lin g even m ore burdened. E ve ntua lly the c a re g iv e r m ig ht be unable to
41 •
care fo r even th e ir own basic needs, much less the needs o f the i l l older a d u lt Both the
ca re g ive r and the i l l re la tiv e s u ffe r when th is takes place.
N etw o rkin g between the medical c o m m u n ity, mental health, churches, and the
co m m u n ity could help a lle v ia te some o f the burden o f the caregiver. C aregivers often feel
isolated and trapped in the ca re giving ro le (see Appendix I). Help fro m these areas in the fo rm
o f s u p p o rt, re s p ite , and education could lessen these feelings somewhat. Medical professionals
could r e fe r the ca re g ive r to area m ental health se rv ic e s , church ru n s u p p o rt groups, and lin k
them w ith co m m un ity su p p o rt systems. A netw o rk o f o the rs who have been ca re give rs in the
past w ould be e x tre m e ly h e lp fu l. Those who have been ca re g ive rs in the past could be p ut in
touch w ith those who have ju s t assumed the c a re g iv e r role. T his m ig h t help allow the c a re g iv e r
to know w hat to expect and the problem s w hich he/she m ig ht face,
The sm all sample size and nonrandom selection o f subjects could have affected the re s u lts
o f th is study. The subjects w ere a ll drawn fro m a population that is la rg e ly s e m i- ru ra l. The
lack o f s ig n ific a n t d ifferences in ca re g ive rs o f elders w ith A lz h e im e r's Disease and ca re g ive rs o f
c h ro n ic a lly im p a ire d older adults could be p a r tia lly a ttrib u ta b le to th is fact. Sm all
com m unities could p ro vid e the ca re g ive r w ith m ore support, fro m re la tiv e s and neighbors w hich
liv e close by and w ith whom the ca re g ive r is close. These in fo rm a l s u p p o rt systems m ight t o .
some degree p rovide the ca re g ive r w ith v a ry in g degrees o f.re s p ite and o p p o rtu n itie s to v e n t .
some o f the fru s tra tio n s th a t a ris e fro m the re s p o n s ib ilitie s o f caregiving. A comparison of
r u r a l and urban ca re g ive rs could p rovide in fo rm a tio n p e rta in in g to differen ce s in su pp ort
system s o f r u r a l and urban caregivers.
42
Suggestions fo r F u tu re Research
F u rth e r research is necessary to exam ine the effects o f s u p p o rt and choice on burden
and depression in caregivers. A com parison o f r u r a l and urban c a re g iv e rs is needed in o rd e r to
exam ine the possible differen ce s in s u p p o rt systems. Several ca re g iv e rs commented (Appendix
I) on the In fo rm a tio n sheet attached to the questionnaire that re lig io n played a substantial ro le
In th e ir a ttitudes tow ard caregiving. The ro le th a t re lig io n plays in .the acceptance o f and the
a b ilit y to handle the ca re g ivin g ro le needs e xp lo ra tio n . Through phone contact w ith several
subjects the auth or learned th a t few c a re g ive rs had e ver been asked about th e ir experience as a
ca re g ive r o r inform e d about w hat to expect as a c a re g ive r o f a c h ro n ic a lly Im paired older adult.
The i l l o ld er a du lt is the id e n tifie d patie nt and th e re fo re the needs o f the c a re g ive r could often go
unaddressed.
S e rvices and in fo rm a tio n provided to ca re g ive rs by p r im a r y physicians should be
examined. The type and amount o f in fo rm a tio n given and its effect on depression and burden in
ca re g ive rs needs to be Investigated.
The sm all sample size obtained in the present study, due in p a rt to the u n w illin g n e ss o f
some area m ental and p hysical health professionals to p a rtic ip a te , could be a re s u lt o f lack o f
in fo rm a tio n and education concerning caregivers. Education o f area professionals could a lle v ia te
p a rtic ip a tio n p roblem s in fu tu re research studies. T his education could be in the fo rm o f
w orkshops o r fact sheets containing in fo rm a tio n about ca re give rs and the problem s they face.
T his m ig h t lead p hysical and m ental health professionals to p a rtic ip a te in a m ore active m anner
in research concerning caregivers.
43
REFERENCES
/
44
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m easuring depression. A rch iv e s o f General P s y c h ia try . 4 , 561 - 5 7 1.
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W illia m s & W ilk in s .
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rese arch . Dallas: Houghton M if flin Company.
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C henow ith, B. & Spencer, B. ( 1 9 8 6 ) . Dementia: The experience o f fa m ily caregivers.
G e ro ntolo gist. 2 6 , 2 6 7 - 2 7 2 .
C lc e re lli, V. G. ( 1 9 8 6 ) . F a m ily re la tio n s and care/m anagem ent o f the dementing e ld e rly .
In M l . G ilh o o ly, S. H. Z a rit, & J.E. B ir r e n ( Eds.). The dementias: P o licva n d
management ( pp. 9 3 - 10 8 ). Englewood C liffs , New Jersey: P re n tic e -H a ll.
C o le ric k , E.J. & George, L.K. ( 19 8 6 ). P re d ic to rs of In s titu tio n a liz a tio n among ca re give rs
o f p atients w ith A lzh e im e r's Disease. J o u rn a l o f the Am erican G e ria tric Society.
3 4 , 4 9 3 -4 9 8 .
D rin k a , T .J.K .; S m ith , J.C .; & D rin k a 1 P.J. ( 1 9 8 7 ) . C orrelates o f depression and burden
fo r in fo rm a l ca re g ive rs o f patients in a g e ria tric s r e fe r r a l c lin ic . J o u rn a l o f the
A m erican G e ria tric Society. 3 5 . 5 2 2 - 5 2 5 .
45
D ye1C. A. ( 1 9 8 5 ) . Assessment and in te rv e n tio n in g e ro o s v c h ia tric n u rs in g . New York:
Grune & S tra tto n , Inc,
F ittin g , M .; Rabins, P ,; Lucas, M.J. & Eastham, J. ( 1 9 8 6 ) C aregivers fo r dementia
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Lancet. 5 4 4 - 5 4 7 .
Hogue, Carol C. ( 1 9 7 7 ) . Epidemiology o f in ju r y in older age. In S.G. Haynes & M.
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older so cie ty. W ashington, D.C.: National Academy Press.
Katzm an, R. ( 1 9 8 7 ) . A lz h e im e r's Disease: Advances and o p p o rtu n itie s . J o u rn a l of the
Am erican G e ria tric S o cie ty. 3 5 . 7 2 1 - 7 2 5 .
K n ig h t, B. ( 1 9 8 6 ) . P sychotherapy w ith o ld er a du lts. B e v e rly H ills : Sage.
Lakatta, E.G. ( 19 8 5 ). H ealth, disease, and cardiovascular aging. In In s titu te o f Medicine
and National Research Council. A m e rica's aging: Health in an o ld er society.
W ashington, D.C.: National Academy Press.
L ip tz in , B.; G rob, M.C.; & E isen, S. ( 1 9 8 8 ) . F am ily.burden o f demented and depressed
e ld e rly p s y c h ia tric inpatients. G erontologist. 2 8 , 3 9 7 - 4 0 1.
Mace, N I . & Rabins, P.V. ( 1 9 8 1 ) , The 3 6 - h o u r dav. New York: W a rn e r Books.
M a le tta , G. J. & H e p b u rn , K. ( 19 8 6 ). H elping fa m ilie s cope w ith A lz h e im e r's : The
p h ysicia n 's role. G e ria tric s . 4 1 . 8 1 - 9 0 .
M e ie r, D. & Cassel, C.K. ( 19 8 6 ). N ursing home placement and the demented patient.
Annals o f In te rn a l M edicine. 1 0 4 . 9 8 - 10 5.
M y e rs , J .K ., L in d e n th a l1J.J. P e p p e r, M.P & O strander, D.R. ( 1 9 7 2 ) . L ife events and
m ental status: A lon gitu din al study. J o u rn a l o f Health and Social B e h a v io r. 1 3 , 3 9 8
-4 0 6 .
M o ry c z , R.K. ( 19 8 0 ). An e x p lo ra tio n o f se nile dementia and fa m ily burden. C lin ic a l Social
W o rk . 8 . 1 6 - 2 7 .
M o ry c z , R.K, ( 19 8 5 ). C aregiving s tra in and the desire to in s titu tio n a liz e fa m ily m em bers
w ith A lz h e im e r's Disease. Research on A oino. 7 , 3 2 9 - 3 6 1.
46
Nee, L I . , P o lln s k y , R J ., E ldridge, R., W eingarte r , H., S m a llb e rg .S . & E b e rt, M. ( 1 9 8 3 ) .
A fa m ily w ith h is to lo g ic a lly co nfirm e d A lz h e im e r's Disease. A rc h iv e s o f Neuroloov
4 0 , 2 0 3 -2 0 8 .
O ry , M.G., W illia m s , T I . , E m r , M 1 Lebow itz, B., Rabins, P., S a llo w ay1J ., Sluss-Radbaugh,
T ., W o lff, E., & Z a r it, S. ( 19 8 5 ). F a m ilie s , in fo rm a l s u p p o rts , and A lzh eim er's
Disease. Research on A oino. 7 ( 4 ) , 6 2 3 - 6 4 4 .
Pagel, M.D., Becker, J ,, & Coppel, D.B. ( 1 9 8 5 ) . Loss o f c o n tro l, s e lf-b la m e , and
depression: an investigation o f spouse c a re g iv e rs o f A lz h e im e r's Disease patients.
J o u rn a l of Abnorm al Psvnhnlnnv. 9 4 C21 1 6 9 -1 8 2 .
P a y k e l, E.S., M ye rs, J .K ., D ie n e lt, M.N., K le rm a n , 0 1 ., L in d e n th a l1J J . , & Pepper, M.P.
( 1 9 6 3 ) . L ife events and depression. A rc h iv e s o f General P s y c h ia try . 2 1 . 7 5 3
-7 6 0 .
P a y k e l, E.5., P ru s o ff1 B A , & U hlenhuth, E.H. ( 1 9 7 1 ) . Scaling o f life events. A rch ive s o f
General P s y c h ia try . 2 5 . 3 4 0 - 3 4 7 .
Poulshock, W.S. & D e im lin g 1 G.T. ( 1 9 8 4 ) . F a m ilie s c a r in g fo r e ld ers in residence: Issues,
in the m easurem ent o f burden. J o u rn a l o f G erontology. 3 9 . 2 3 0 - 2 3 9 .
R ile y , M.W. & F o n e r1A, ( 19 6 8 ). Aoino and society ( Vol. I ). New York: Russell
Sage Foundation.
Sanford, J.R.A, ( 19 7 5 ). Tolerance o f d e b ility in e ld e rly dependants by s u p p o rte rs at home:
It's sign ifican ce fo r hospital practice. B r itis h Medical J o u r n a l. 3 , 4 7 1- 4 7 3 .
Scott, J .P ., Roberto, K.A., & H utton, J.T.
( 1 9 8 6 ) . F am ilie s o f A lz h e im e r's v ic tim s :
F a m ily s u p p o rt to the caregivers. J o u rn a l o f the A m erican G e ria tric Society. 5 4 .
3 4 8 -3 5 4 .
S e k u le r, R. & Blake, R. ( 19 8 5 ), Perception. New York: A lfre d A. Knopf.
Sem ple, S A , S m ith , C .M ., & W ash, M. ( 1 9 8 2 ) . The A lzh e im e r Disease syndrome. In S.
C o rk in 1K. L. D avis, J.H. Growdon, I . U sdin, & R. J. W u rtm a n (E d s .), A lzh e im e r's
Disease: a re p o rt o f progress in research: Vol. 19. Aoino (p p . 9 3 - 1 0 7 ) . New York:
Raven Press.
Shaw, B I . , V a llis , T.M. & McCabe, S.B. ( 1 9 8 5 ) . The assessment o f the s e v e rity and
sym ptom p a tte rn s in depression. In E.E. Beckham & W.R. Leber (E d s.). Handbook of
depression: T re a tm e nt, assessment, and research ( pp. 3 7 2 - 4 0 7 ) . Homewood,
Illin o is : The Dorsey Press.
47
Siegel, U.S. ( 19 7 7 ). Recent and prospective dem ographic trends fo r the e ld e rly
population and some im p lic a tio n s fo r health care. In S.G. Haynes & M. Feinlab
(E d s.), Second Conference on the Epidemiology o f A oino. ( NlH P u b lica tio n Mn 8 0
- 9 6 9 ) , (p p . 2 8 9 - 3 1 5 ) . Bethesda, M aryland: National In s titu te o fH e a lth .
S iIv e rs to n e , B, ( 19 8 5 ).
In fo rm a l social s u p p o rt system s fo r the f r a i l e ld e rly . In
A m e rica's Aging: Health in an older s o c ie ty . In s titu te o f M edicine/N ational Research
C ouncil, (p p . 1 5 3 - 1 8 1 ) . W ashington D.C.: National Academy Press.
Sowa, U. & L ustm an, P.J. ( 19 8 4 ). Gender differences in ra tin g s tre s s fu l events,
depression, and depressive cognition. J o u rn a l o f C lin ic a l Psychology. 4 £ ,
1 3 3 4 -1 3 3 7 .
Spatz, C. & Johnson, J.O. ( 1 9 8 4 ) . Basic s ta tis tic s : Tales o f d is trib u tio n s ( 3 r d ed.).
M onterey, C a lifo rn ia : B rooks/C ole P u b lis h in g Company.
T e u sin k, P.J. & M a h le r, S. ( 1 9 8 4 ) . H elping fa m ilie s cope w ith A lz h e im e r's Disease.
H ospital and C om m unity P s y c h ia try . 3 5 . 1 5 2 -1 5 6 .
Thompson, E.H, & D o ll, W. ( 1 9 8 2 ) . The burden o f fa m ilie s coping w ith the m e n ta lly i l l:
An in v is ib le c r is is . F a m ily R elations. 3 1 . 3 7 9 - 3 8 8 .
United States D epartm ent of Commerce, Bureau o f the Census. ( 19 8 8 ). S ta tis tic a l
a b stra ct o f the United States. 10 8 th ed.
V in o k u r, A. & S e lz e r, M l . ( 19 7 5 ). D esirable ve rsu s undesirable life events: T h e ir
re la tio n s h ip to stre ss and m ental d istre ss. J o u rn a l o f P e rs o n a lity and Social
P sychology. 3 2 . 3 2 9 - 3 3 7 .
W a rh e it, George J. ( 19 7 9 ). L ife events, coping, s tre s s , and depressive symptomology.
A m erican J o u rn a l o f P s y c h ia try . 13 6 . 5 0 2 - 5 0 7 .
W asow, M. ( 1 9 8 5 ) . C hronic schizophrenia and A lz h e im e r's Disease: The losses fo r
p aren ts, spouses, and c h ild re n compared. J o u rn a l o f C hronic Disease. 3 8 . 7 1 1
-7 1 6 .
W e lls , C.E. ( 1 9 7 8 ) . C hron ic b ra in disease: An overvie w . A m erican J o u rn a l o f P s y c h ia try .
m
1-12.
W h itb o u rn e , S.K. ( 1 9 8 5 ) . The aaino body: Physiological changes and psychological
conseouences. New York: S p rin g e r-V e rla g .
W inogrond, LR.; F isk, A.A.; K ir s lin g , R A ; & Keyes, B. ( 1 9 8 7 ) . The re la tio n s h ip o f .
ca re g ive r burden and m orale to A lz h e im e r's Disease p atie n t fu n c tio n in a th e ra p e u tic
setting, G erontologist. Z L 3 3 6 - 3 3 9 ,
48
Z a rit, S.H., O r r , N.K. & Z a r lt1J.M . ( 1 9 8 5 ). The hidden v ic tim s n f A lz h e im e r's Dispasefa m ilie s under stress. New York: New York U n iv e rs ity Press.
Z a r it1 S.H.; Todd1 P A ; & Z a r it1J.M . ( 1 9 8 6 ) . S ubje ctive burden o f husbands and w ives as
caregivers: A lon gitu din al stu d /. G erontologist. 2 6 , 2 6 0 - 2 6 6 .
49
APPENDICES
50
APPENDIX A
Human Subjects C om m ittee A pproval L e tte r
51
M o n ta n a State University
Bozem an, Montana 59717
Office of the Vice President for Research
April 24, 1989
Research and Development (4 0 6 ) 994-2891
- Grants and Contracts (4 0 6 ) 994-2381
Susan C. Barnett
719 1/2 S. 3rd Street
Bozeman, MT 59715
Dear Ms. Barnett:
Thank you for sending us a copy of the. cover letter that you
intend to send with your questionnaire.
I see no problem with
the research proposal that you are planning to do or with the
informed consent procedures that are involved.
Sincerel
Stfephen J. Guggenheim, M.D., Chair
Human Subjects Committee
j f l
52
APPENDIX B
L e tte r to Area P hysicians
53
7 1 9 I / 2 5. 3 rd
Bozeman, MT 5 9 7 1 5
December 6 , 1 9 8 8
D r.
Bozeman, MT 5 9 7 1 5
Dear
I w ould g re a tly appreciate y o u r assistance in a research p ro je ct. I am c u r r e n tly a graduate
student in Counseling and Human Development at Montana State U n iv e rs ity . As p a rt o f m y
graduation re q u ire m e n ts I have taken extensive counseling th e o ry courses, p ra cticu m s, and
in te rn s h ip s . I have chosen to take the thesis option in the counseling p ro gram and am c u r r e n tly
w o rk in g on a th esis concerning ca re g ive rs o f c h ro n ic a lly im p a ire d o ld e r adults.
The in te n t o f th is research p ro je c t is to assess and compare burden and depression in c a re g iv e rs
o f p h y s ic a lly im p a ire d o ld er adults and c a re g ive rs o f older adults w ith A lz h e im e r's Disease. I
intend to send c a re g ive rs a s u rv e y w ic h w i ll contain a cover le tte r , general in fo rm a tio n sheet,
the B% k Depression In v e n to ry , Z a rit’s Burden In te rv ie w , and a stamped envelope in w hich to
r e tu r n the q u e stio n a irre . I f a ca re g ive r does not respond I intend to send them a second packet
and cover le tte r. C o n fid e n tia lity o f subjects w i ll be m aintained by using a num bering code
w h ich w i ll th e re a fte r be used to id e n tify subjects. The chairm an o f the Human Subjects
Com m ittee at Montana State U n iv e rs ity found th is research p ro je c t to be such low r is k th a t i t
does not w a rra n t fu ll com m ittee re vie w .
I would g re a tly appreciate any help you m ig h t be able to give me in m aking contact w ith any
ca re g iv e rs o f im p a ire d older adults who m ig h t be y o u r patients. I w ould lik e to ca ll on you to
discuss m y research p ro je c t and discuss any questions you may have. I f you w ant to contact me I
can be reached Saturdays, Sundays, and Mondays at 5 8 6 - 9 6 9 8 . Thank you v e ry much fo r y o u r
tim e and consideration.
S in c e re ly ,
Susan C. B a rn e tt
M ichael W aldo, PhD.
A ssistant P rofessor
54
APPENDIX C
Q uestionnaire Cover L etter
55
Montana State University
Bozeman, Montana 59717
Unit of Human Development and Counseling
Telephone (406) 994-3240
Department of Health and Human Development
Herrick Hall
Hello,
H e a fth ^ n rt u f Counsel,n9 and ""m an Deuelopment In the College of
l d d r l L ^ f h ' 0 ' earn the reSUlts of ,hls studS w rite your name and
I h r f o Z m T f e e T bcZ f ernin9 ' he reS U l,S ° f t h , s s tu d S s lm n lS 'e a u e
Thank you uery much for your time and effort.
Sincerely,
Susan C. Barnett
Michael Waldo, Ph.D.
Assistant Professor
56
APPENDIX D
Request fo r In fo rm a tio n
57
I F
Y O U
W
I S H
C O N C E R N I N G
P L E A S E
I N C L U D E
T O
R E C I E V E
I N F O R M A T I O N
T H E
R E S U L T S
O F
F O L L O W
I N G
T H E
T H I S
S T U D Y
I N F O R M A T I O N :
PROVISION O F INFORMATION CONCERNING YOUR NAME A ND ADDRESS
W ILL N O T TH R E A T E N C O N FIDEN TIALITY. Y O U R NAM E AND A D D R E S S W ILL BE KNO W N BY M E
O N L Y AND W ILL BE KEPT S TR IC TLY C O N F ID E N T IA L
NHME__
ADDRESS
CITV ___
STATE __
ZIP CODE
58
APPENDIX E
In fo rm a tio n Sheet
/
59
I Please answer the following questions about yourself and your
(ill relative._______________ ~____________
1. Vourage_:____________ ____
2. Vour sen________________ __
3. Age of your ill relative_____ _____________________
4. Sen of your ill relative_____ ____________________
5. Diagnosis of ill relative
____________________________
6. How impaired do you feel your ill relative is? (Circle the
number you feel indicates the level of impairment.)
Little Impairment
1
2
3
4
5
Extremely Impaired
7. Nature of relationship (Spouse, parent, relative)_________________
8. How close do you feel to your ill relative at the present time?
(Please Circle the number you feel best represents how close you
presently are to your ill relative.)
Not At All Close
1
2
3
4
5
Very Close
9. How close do you feel you were to your ill relative before he/she
became ill? (Please circle the number you feel best represents how
close you were to your ill relative.)
Not At All Close
1
2
3
4
5
Very Close
10. How long have you had a relationship with your ill relative
(number of years)_________
11. How long has your relative been ill?___________________________
12. Present average yearly income________________________________
13. Average yearly income before you began caring for your ill
relative________________________ _____________________________
14. How many hours per week do you spend caring for your ill
re la tiv e ? __________________
15. Do you feel like you had a choice in caring for your ill relative?
(Yes, No)_______ !_____________
Please Continue To The Next Paae
60
16. Hoiu much freedom of choice do you feel you had in assumming
the role of caregiuer? (Circle the number you feel indicates your
level of freedom of choice.)
Very much freedom of choice
1 2
3 4
5
Very little freedom of choice
17. Your occupation__________________________________________~
18. Previous occupation of ill relative_____________________________
19. Do you feel like you have the support of others________________
20. UJho do you feel supports you emotionally (family, friends)______
21. Hoiv much emotional support do you feel you get from others?
(Circle the number you feel indicates the level of support you have.)
Very much support
1 2
3
4 5
Very little support
22. Can you leave your ill relative at home unattended? (Circle the
number you feel indicates your ability to leave your ill relative
unattended.)
Always
1 2
3 4 5
Never
23. Some people feel caring for their ill family member is a priviledge
iuhich adds great meaning to their lives, others feel it is an
unfair burden that they cannot escape. Many people have a
combination of these feelings ivith some feelings stronger than
others. Please try to rate your feelings over the period of time
that you've cared for your ill relative on the folloiving scale.
Meaningful priviledge
1
2
3
4
5
Unfair Burden
Additional Comments:
!Please Continue To The Next Pape
61
APPENDIX F
Z a rlt Burtten In te rv ie w
62
flNSTBUCTIONS: The folloiuing is a list o f s ta te m e n ts which re fle c t
Jhoiu people som etim es fe e l when tak in g care o f a n o th e r person.
A fte r each s ta te m e n t indicate how o fte n you fe e l th a t w ay; n ever,
ra re ly som etim es, quite fre q u e n tly , or n early alw ays. There are no
rig h t or w rong answ ers. Please circle the w ord and num ber which
best rep res en ts your feelngs.___________________ ___________________
j_.
Do you fe e l th a t your re la tiv e asks fo r more help than he/sh e
needs?
0. Never
2.
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you fe e l th a t because of the tim e you spend w ith your re la tiv e
th a t you don't have enough tim e fo r yourself?
0. Never
I.
1. Rarely
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you fe e l stressed b etw een caring fo r your re la tiv e and trying
to m e et o th e r responsibilities fo r your fam ily or w ork?
!
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you fe e l em barrassed o ver your re lative 's behavior?
0. Never
5.
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you fe e l your re la tiv e is dependent on you?
0. Never
9.
4. Nearly Always
Are you a fra id w h a t the fu tu re holds fo r your re la tiv e ?
0. Never
8.
3. Quite Frequently
Do you fe e l th a t your re la tiv e cu rren tly a ffe c ts your relationship
w ith o th e r fam ily members or friends in a n egative w ay?
0. Never
%.
2. Sometimes
Do you fe e l angry when you are around your re la tiv e ?
0. Never
6.
1. Rarely
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you fe e l strained w hen you are around your re la tiv e ?
0. Never
I . Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
!Please Continue To The N ext Page
63
JLQ.. Do you fe e l yo u r health has su ffered because o f your inuoluem ent
ujith yo u r re la tiv e ?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
11. Do you fe e l th a t you don't have as much privacy as
because o f your re la tiv e ?
0. Never
12.
1. Rarely
2. Sometimes
3. Quite Frequently
you mould like
4. Nearly Always
Do you fee l th a t your social life has su ffered because you are
caring fo r yo u r re la tiv e ?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
15 . Do you fee l uncom fortable about having friends o ver because o f
yo u r re la tiv e ?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
14 . Do you fe e l th a t your re la tiv e seems to expect you to tak e care
o f h im /h e r as if you m ere the only one he/sh e could depend on?
0. Never
I. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
15 . Do you fe e l th a t you don't have enough money to care fo r your
re la tiv e , in addition to the rest o f your expenses?
p. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
J_6. Do you fe e l th a t you mill be unable to take care o f your re la tiv e
much longer?
0. Never
1. Rarely.
2. Sometimes
3. Quite Frequently
4. Nearly Always
I ?. Do you fee l th a t you have lost control of your life since your
re la tiv e 's illness?
0. Never
18.
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Do you mish you could ju s t leave the care o f your re la tiv e to
someone else?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
I g. Do you fee l uncertain about m hat to do about your re lative ?
0. Never
I . Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
Please Continue To The N ext P age
64
20. Do you feel you should be doing more for your relative?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
21. Do you feel you could do a b etter job in caring for your relative?
0. Never
1. Rarely
2. Sometimes
3. Quite Frequently
4. Nearly Always
22. Overall, hoiv burdened do you feel in caring for your relative?
0. Not at all
1. A little
2. Moderately
3. Quite a bit
4. Extremely
Please Continue To The Next Page
65
APPENDIX G
Beck Depression In v e n to ry
66
f
Read ouer the statem ents grouped mith each letter, fl through U.
Pick out the statem ent within each group that best describes the
wag you feel today. Put an (K) next to the statem ent you haue
chosen in each group. I f two or more statem ents in a group
describe the way you feel equally well, put an (K) next to each one.
Be sure to read ouer all of the statements in each group before you
decide on one.
s
fl.
__
__
__
__
__
I
I
I
I
I
do not feel sad.
feel blue or sad.
feel blue or sad all the time and I can't snap out of it.
am so sad or unhappy that it is quite painful.
am so sad or unhappy that I can't stand it.
B.
__ I am not particularly pessimistic or discouraged about the
future.
__ I feel discouraged about the future.
__ I feel I haue nothing to look forward to.
__ I feel that I won't euer get ouer my troubles.
__ I feel that the future is hopeless and that things cannot
improue.
C.
__ I do not feel like a failure.
__ I feel like I haue failed more than the auerage person.
__ I feel I haue accomplished uery little that is.worthwhile or that
means anything.
__ As I look back on my life all I can see is a lot of failures.
__ I feel I am a complete failure as a person.
D.
__
__
__
__
__
I
I
I
I
I
am not particularly dissatisfied.
feel bored most of the time.
don't enjoy things the way I used to.
don't get satisfaction out of anything anymore.
am dissatisfied with euerythinq.____________________________
!Please Continue To The Next Page
67
I
I
I
I
I
don't feel particularly guilty.
feel bad or unworthy a good part of the time.
feel quite guilty.
feel bad or unworthy practically all the time now.
feel as though I am very bad or worthless.
I
I
I
I
I
don't feel I am being punished.
haue a feeling that something bad may happen to me.
haue a feeling I am being punished or will be punished.
feel I deserve to be punished.
want to be punished.
I
I
I
I
I
don't feel disappointed in myself.
am disappointed in myself.
don't like myself.
am disgusted with myself.
hate myself.
I
I
I
I
don't feel I dm any worse than anybody else.
am critical of myself for my weaknesses or mistakes.
blame myself for my faults.
blame myself for everything bad that happens.
I don't have any thoughts of harming myself.
I have thoughts of harming myself but I would not carry them
out.
I feel I would be b etter o ff dead.
I feel my fam ily would be b etter o ff if I w ere dead.
I have definite plans about committing suicide.
I would kill myself if I could.
Please Continue To The Next Page
68
I don't cry any more than usual.
I cry more noiv than I used to.
I cry all the time noiu. I can't stop it.
I used to be able to cry but noiv I can't cry at all euen though I
ivant to.
I
I
I
I
am no more irritated now than I ever am.
get annoyed or irritated more easily than I used to.
feel irritated all the time.
don't get irritated at all at the things that used to irritate me.
I haue not lost interest in other people.
I am less interested in other people now than I used to be.
I haue lost most of my interest in other people.
I haue lost all my interest in other people and don't care about
them at all.
I
I
I
I
make decisions about as well as euer.
try to put o ff making decisions.
haue great difficulty in making decisions.
can't make decisions at all anymore.
I don't feel I look any worse than I used to.
I am worried that I am looking old or unattractiue.
I feel that there are permanent changes in my appearance and
they make me look unattractiue.
I feel that I am ugly or repulsiue looking.
I can work about as well as before.
It takes extra effo rt to get started at doing.
I don't work as well as I used to.
I haue to push myself uery hard to do anything.
I can't do any work at all.
Please Continue To The Next Page
69
I can sleep as iuell as usual.
I make up more tired in the morning than I used to.
I make up 1-2 hours earlier than usual and find it hard to get
back to sleep.
I make up early euery day and can't get more than 5 hours
sleep.
I
I
I
I
don't get any more tired than usual.
get tired more easily than I used to.
get tired from doing anything.
get too tired to do anything.
My appetite is no morse than usual.
My appetite is not as good as it used to be.
My appetite is much morse nom.
I have no appetite at all anymore.
I
I
I
I
haven't lost much meight, if any, lately.
have lost more than 5 pounds.
have lost more than 10 pounds.
have lost more than 15 pounds.
I am no more concerned about my health than usual.
I am concerned about aches and pains ar upset stomach or
constipation.
I am so concerned about horn I feel orm hat I feel that it's hard
to think of much else.
I am completely absorbed in mhat I feel.
I
I
I
I
have not noticed any recent change in my interest in sex.
am less interested in sex than I used to be.
am much less interested in sex nom.
have lost interest in sex completely.
70
APPENDIX H
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72
APPENDIX I
C aregiver Comments
73
Please Note: th e fo llo w in g comments w ere taken v e rb a tim fro m the in fo rm a tio n sheets fille d
out by the caregivers, A ll s p e llin g , g ra m m e r, and punctuation w ere supplied by the
respondents.
1. I f I w ere the i l l person, th e re is n 't a nyth in g m y husband w o u ld n 't do fo r me, We have been
so blesed w ith good health most o f o u r liv e s th a t th is is n 't too bad, especially since we
have discovered th a t by going to M exico e v e ry s ix months he can get treatm ents th a t have
stopped the p rogress o f A lzh eim er's.
2. He is a v e ry s e n sitive person, He sometimes becomes upset about som ething I say and w i ll
go o ff to the bedroom , close the door and. weep. I get him to come to the liv in g room. We
s it together on oUr davenport w ith a rm s around each other, He w i l l have forgotten w hat
he is upset about b ut w i ll c r y i t out anyway. Then he te lls me how much he loves me,
how much he needs me, and wonders w h y he c rie s . Before th is illn e s s he never cried.
T his often happens when I'm tr y in g to get som ething done. T h is is the o nly r e a lly
fr u s tr a tin g p a rt o f h is behavior.
3. I care fo r both parents.
4. I love h e r, b ut when I go to v is it c h ild re n and grandkids, she c a lls everday asking me to come
home as m y o th e r s is te r doesn't lik e to come to h e r house. So not a good vacation i f
problem c a lls you everyday.
5. I was converted to Jesus C h ris t 4 y r s ago. I see ta k in g care o f m y M oth er as a way of
honoring both her and God. When I saw som ething was w rong I asked God fo r the
p r iv ile g e o f c a rin g fo r her. She liv e d about 3 0 0 m ile s away and I had to ta lk h e r in to
com ing fo r a v is it and ju s t kept her. She doesn't know w hat is w ro ng and fr e ts to go
home. That is hard to cope w ith sometimes. I was a v e ry nervous in d iv id u a l before
C h ris t came in to m y life and I can't im agine how I would have coped w ith a ll th is w ith o u t
him ,
6. M y c h ild re n and h is s is te r's never offered to help not even long enough so I could r e a lly go
take a bath o r have a meal fo r m y s e lf I feel trapped I love m y husband so much
7. R e s tric tio n s fro m tr a v e le r & going to place p u b lic w here th e ir is sm o k in g 8. Tim es she is fu n to be w ith and one can le a rn fro m her experience and o the r tim es, v e ry
hard to deal w ith
9. Mom has alw ays took care o f me, now I feel i t m y tu r n & p riv ile d g e . Mom need a lo t of
personal ca re , I feel s tro n g ly about h elping her. I've enjoyed it. I would not have i t any
o th e r way!
I
74
10. N o to n ly a p r lv lle d g e b u t also an o bliga tion because o f o u r m a rria g e vows. A ls o lt t s a b t b le
obligation. It Is not an u n fa ir burden.
11. He had 5 bypass open h e a rt s u rg e ry Feb '8 8 . He had In fe ctlo come In h is Incision. We
co uldn 't leave the hospital u n til th ey learned the name o f the Infection. He was In
hospital 8 2 d a y s -ln B illin g s and Bozeman. Came home May '8 8 . F in a lly the In fe ction
q u it the m iddle o f Nqy . '8 8 . He is n ota n In va lid .
12. S trong resentm entl She did not ra is e me o r m y h a lf b ro th e r. Too busy chasing around w ith
an assortm ent o f men. Now th e re is no one b ut me th a t w i ll care fo r her.
13. Mom re c e n tly passed away at 9 6 y rs . Fed her tw ic e a day, did h e r la u n d ry , etc. T o o km y
husband along. A y e a r ago they w ere both in the home. W asn't easy, b ut I wished I could
do more. Had to g ive up. M y husband got v io le n t. For
health reasons I had to g ive
up, M y husband had to go t o ____________________ I go th e re as often as possible. He's
been th e re fo u r months.
14. He w i ll be at home as long as I can p h y s ic a lly care fo r h im - w ith help.
75
APPENDIX J
Table 9. Z a rtt Burtten In te rv ie w Item Means and S ta tis tic s
76
Table 9. Z a rit Burden In te rv ie w Item Means and S ta tis tic s
QUESTION *
MEAN
ST. DEV.
N
ST. ERROR
22
22
22
22
22
.2 2 3
.2 9 9
.2 4 5
.2 1 8
I
1 .0 4 5
1 .0 4 6
2
3
4
1 .8 1 8
2 .09 1
.7 7 3
1 .4 0 2
1.151
1 .0 2 0
1 .11 3
5
1 .0 0 0
6
7
.8 1 0
2 .0 9 1
8
3 .7 2 7
1 .2 6 9
.5 5 0
22
.1 1 7
9
IO
1 .1 4 3
1 .5 0 0
1 .0 1 4
1 .3 0 0
21
22
.221
.2 7 7
11
1 .5 0 0
1 .4 3 9
1 .7 7 3
. 1 .1 3 6
1 .5 1 0
22
22
22
.3 0 7
12
13
14
15
2 .4 5 5
1 .2 8 6
1 .5 9 5
1 .3 4 7
16
1 .1 8 2
1 .05 3
21
22
17
1 .7 2 7
1.091
1 .48 6
1 .4 1 1
22
22
.3 1 7
.301
1 .4 2 9
1 .81 0
21
21
1.381
1 .5 0 2
1 .3 6 5
1.161
21
.3 2 8
.2 9 8
.2 5 3
1 .7 7 3
1 .2 3 2
22
.2 6 3
18
19
20
21
22
1 .1 6 7
1 .16 7
21
22
22
237
.2 5 5
.271
.3 2 2
.2 4 9
.3 4 0
.2 9 4
.2 2 4
77
APPENDIX K
Figure I. Zarit Burckn Interview Item Means Graph
78
Figure I . Zaht Burden Interview Item Means Graph
Question
°
I
2 3 4 5 6 7 8 9
10 11 12 13 14 1 5 1 6 1 7 1 8 1 9 2 0 2 1 22
79
APPENDIX I
Table 10. Z a rit Burden In te rv ie w Score D is trib u tio n
80
Table 10. Z a rlt Burden In te rv ie w Score D is tib u tio n
L ittle
o r No
Burden
(0 -2 0 )
M ild to
Moderate
Burden
(2 1 -4 0 )
Mocterate
to Severe
Burden
(4 1 -6 0 )
Severe
Burden
Total
(6 1 -8 8 )
C aregivers o f Elders
w ith A lzh e im e rs
>
I
2
I
6
5
I
14
7
7
2
22
4
1
.2
6
8
C aregivers o f Elders
W ith P hysical
Im p a irm e n ts
Total
81
APPENDIX M
Table 1 1 . Beck Depression In v e n to ry Item Means and S ta tis tic s
82
Table 11. Beck Depression In v e n to ry Item Means and S ta tis tic s
QUESTION *
MEAN
ST. DEV.
N
ST. ERROR
A (S ainess)
B (P e s s im is m )
C (Sense o f F a ilu re )
.5 2 4
.601
21
.131
.6 0 0
.1 9 0
.681
.6 8 0
20
21
.1 5 2
.1 4 8
D (D is s a tis fa c tio n )
E ( G u ilt)
.5 2 4
.091
21
22
F ( Expectation o f P unish m e nt)
.0 9 5
.5 1 2
.4 2 6
.4 3 6
21
.1 1 2
.091
.0 9 5
G ( S e lf- D is lik e )
H (S e lf-A c c u s a tio n )
I (S u ic id a l Ideas)
.0 0 0
.4 7 6
.0 0 0
.7 5 0
20
21
.0 0 0
.1 6 4
.0 0 0
.2 7 3
.5 4 5
.0 0 0
.4 6 5
21
22
.0 0 0
.0 9 7
J (C ry in g )
K ( Ir r it a b ilit y )
L (S ocial W lth d ra w l)
.2 2 7
.5 1 0
.5 2 8
N (B ody Image Change)
.1 3 6
.2 3 8
.6 2 5
21
.1 3 6
0 (W o rk R etardation)
.5 4 5
.5 9 6
22
.1 2 7
M (Indecisiveness)
.351
22
.1 0 9
22
22
.1 1 3
.0 7 5
P (In s o m n ia )
.9 5 5
.9 9 9
22
.2 1 3
Q ( F a tig a b ility )
.8 6 4
227
.5 2 4
22
22
.1 3 6
R (A n o re x ia )
S (W e ig h t Loss)
.6 4 0
.4 2 9
.981
T (S om atic Preoccupation)
U (L o s s o f L ib id o )
.1 8 2
.501
21
22
1 .0 0 0
1 .17 0
20
.091
.2 1 4
.1 0 7
.2 7 6
83
APPENDIX N
F ig u re 2. Beck Depression In v e n to ry Item Means Graph
84
Figure 2. Beck Depression Inventory Item Means Graph
3 .0 0
2 .7 5
2 .5 0
2 .2 5
0£
Z
£
2.00
uj
o
1.75 - tS . - T=-O1.50
1.25
1.00
.75
Question *
A B C D E F G H I
J
K L
M N O P
Q R S
T
U
85
APPENDIX O
Table 12. Beck Depression In v e n to ry Score D is trib u tio n
86
Table 12. Beck Depression In v e n to ry Score D is trib u tio n
I
N orm al
M ild
Moderate
Severe
(1 0 -1 5 )
(1 6 -2 3 )
(2 4 -6 3 )
5
I
2
O
9
5
O
O
14
14
6
2
O
22
Total
C aregivers o f Elders
W ith A lzh eim ers
8
C aregivers o f Elders
W ith Physical
Im p a irm e n ts
Total
87
APPENDIX P
In fo rm a tio n Sheet For Subjects
88
7 1 9 1 /2 5. 3 rd
Bozeman, MT 5 9 7 1 5
August, 1 9 8 9
D e a r _________ ,
Thank you so much fo r y o u r help w ith m y research p ro je ct. The in fo rm a tio n you provided when
you fille d out the questionnaire on c a re giving was inva lua ble and h o p e fu lly w i ll help o the r
ca re g ive rs lik e yo u rs e lf.
M y research p ro je c t Investigated w he th er c a rg iv in g can be an e m o tio n a lly s tre s s fu l and
d if fic u lt situ a tio n . I found th a t ca re g ivin g could be an e m o tio n a lly s tre s s fu l and d iffic u lt and
th a t these stresses had effects on caregivers.
The re s u lts o f th is research study suggest th a t the s tre s s o f c a re giving is related to e xpe rie ncing
d if fic u lt emotions. M y research and the research o f o th e rs suggests th a t ta lk in g w ith people
about the stre ss o f ca re g ivin g can re lie v e some o f these d iffic u lt emotions.
I f you a re fe e lin g th a t you need to ta lk w ith someone about the stresses o f care giving please
contact someone you feel co m fo rtab le ta lk in g w ith . T his could be a fa m ily m em ber, a frie n d ,
y o u r d octo r, m in is te r , o r a professional counselor. Low cost counseling is available in
Bozeman. Please feel fre e to contact me a nytim e i f you have any questions concerning the
q ue stion na ire , the re s u lts o f the research p ro je c t, o r i f you would lik e the name of a counselor.
M y phone num ber is 5 8 6 - 9 6 9 8 .
Thanks again fo r y o u r help. It was v e ry much appreciated.
S in c e re ly ,
Susan C. B a rn e tt
Address and Phone Num ber
Susan C, B a rn e tt
7 1 9 1 /2 S. 3 rd
Bozeman, Montana 5 9 7 1 5
5 8 6 -9 6 9 8
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