-
Social Work Practice with Alzheimer Caregivers
An Honors Thesis (10 499)
By
Sheila A. Bracken
Jan
Holmes~
Thesis Director
Ball State University
MLlncie~
Indiana
May 1984
~p{'r!\
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I
~ 1:
Acknowledgments
There were many people who contributed to this paper who should
be recognized for their efforts.
Jan Holmes, my social work advisor
for this project, deserves a special thanks.
The direction she gave
me and her patience and flexibility were very valuable.
I wish to
express graditude to David Duff, president of the Muncie support
group, for his willingness to share the amount of information he had
on the disease.
My thanks extends to all the families who were
willing to share their problems, pains and JOYs in order to help
others.
-
-
I also wish to acknowledge Ann Brown for her research recommendations, Dianne Springer for her gerontological expertise and Richard
Bracken, my father, for his computor wizardry.
The support of these
people helped make this an enriching, learning experience for me.
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Jnendingly
c~nsumes
resources and
A
r~view
:aregivers
famil~.
n~lghbor.
comm~ritv
anj
profE5sion~1
su:port systems need to be e\o!ored to g'vs
ne~
of cur-ent literature on the
few
or~duced
recently ccme into
t~e
h~lDful
articles.
public eve.
focused on the famil! or
car?give~s
~ore
Al~helme~
The disease has
as well as the patient.
e~amine
ways professionals
a survey was
ef'ec~i\elv~
The data from the survev orovided
informati~n
and
designe~
adminlstered tc caregivers from the Alzheimer Supoort Groue
~N.
~nly
Attention is :ust begInning tc bs
understand the needs of the caregiver and
can serve caregIvers
needs of
Munc:e,
In
about caregivers'
perceptions of thelr problems and leeds when caring for victims
~lzheime~'s
~h15
avallabl~
c~
disease.
oaper will give an
o~erV12W
of the disease. a review
~f
t~2
literature sn caregiver needs! findings from tne surve\,
recommendations for socia!
wor~
sractlce.
5nd
recomme~daticns
+cr
further -esearch stud:es.
~~Dlanati~n
In
1906~
AlDis Al:helmer
of A!zhelmer's Disease
des~r~bed
a condition in a 51-vea r ole
Thi3 condition is now known as
The woman was
-
eXDeriencin~
memcrv loss and
Alzhei~er'5
frecue~t
disease.
d!SQrjentatlon.
?he late- became decressed and had hallucinations.
died.
~hrunk
Al~heime~
disccvered through an autopsy that her bra:n had
~2trcDhy).
nerve cells
~hich
Alzheimer named neurofibrillary tangles.
~angle~
a~e
Je~ar~went
Anothe~
now Gsej 25 2
of
Healt~
anatomIcal
3n~
m2~8~
composed of the N3s:e
Jl'
,..
" L'" .:'".
l
Serv:ces. et aI .. 2ectemter l c 81
~um2~
=Qnditio~
diagnostic test of the CiSE3SE.
~~ic~
matE~ia~
distinguishEs the
d:~23se
froIT
amv!olc.
i.i C'O,}',
:'
~_,_
The dlsease was criginallv called
demert:a.
p~ese~:le
.
:.I!-.
-~; ;
appear durlng the
cc~rSE
of the d:5e2SE include 2
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it affected 020D12 :n the
Senile
nos~
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1
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ar
lmc2i~ed
attention
SDa~
T~e
3nd retain newlv learned information.
Dement~2
~O~2V
t.he
Si:2.ce.
!ac~
--,
2~~uire
for
.j. ~
."'¥ .... -.
:~f
ind:vidual who
'-1
mi~d12
of the
~~e
vears. somet:mss
Alzheime~'s
d~
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voung
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the
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Me~c~v
1055 :5
~ot
a
cart of the ag:ng
~orma!
A oersor with SDAT
:~5S
0~
memory In the earv stages
~eact:O~5
o~
examples of
th2
o~
~15ea5e
manv
beh2vlo~
2ss0clated
8rsgre5~es
diffe~ent
8/er
~he
fJnctions.
-
\/ed.
The jis23se
MeffiO~v
In the
usu21!~
late~
the
~ear5.
affected In dlfferent waVE and at
: \;"~:Dl
goat }udgment
c~
~:t~
wl~l
~SU2~!V
d~se2se.
5~ch
(Mace.
gi~lng
25
i 00
.i
-! ~
.,"!..• •",.
and motor f0nctlons sucr 25
diffe~e~t
o~
c
the brain jamage causes 2 loss
times.
These cnanges
ends in death from health
stages
have
the jisease.
~f
and the lac!:
ca~anc~a
~~oce5S.
ffia~
c~mcli=2tisn5
the disease the victim forgets to
swallow and invslun:arv nusc!es no longer function.
(Mace.
1981)
?eview of Literature
Th? role of
caregiv~ng,
3ysrvdaJ. places many
desc~ibsd
These
d
oersor with SDA·
an the person.
some of the reasons the caregiver
~2ascrs
interes~s.
b~rdens
taking care of
be~ins
to feel
b~rdened.
in=lude the :areglver'; inability to find time for se:f
the excessive
de~endencv
oeople with
Alzhe:me~'5
have on
the
caregiver~
~ith
and the constant fear and apprehension caregivers
as they anticipate the appearance of
cerson's behavior.
~ore
..
deterioration
~
.. l i
l~ve
=,- .
WatchIng the oerson deteriorate ment211v was alsc
CIted bv Safford (1980) as being a major problem.
One way of coping
with thE anguish associated with Alzheimer's disease is to locats
other
p2001e
with the S2me problem to share experiences and support.
Recognizing one's limitations in helping the person with SDAT alsc
8rovides some relief from the stress.
There is 2 strong sense of
guilt and resentment found among those caregivers who do not
acknowledge their own physical and mental limitations.
Te help the caregiver manage the person with SDAT. Portnoi and
Shriber (1980) suggest a familiar environment that does not bring
...-
about sudden changes.
The familiar environment will help decrease the
:onfu":;ic'ii t.he person wit.h Alz'leimer'"=. is experiencing.
Adapting the family'S lifestyle and
-
:~nfused
5ac~iflcing
and dependent person creates
~eelings
ensuing feelIngs of guilt bv the caregiver.
(Mac:e~
1981)
cersonal time for the
of resentment and
The family
rembe~5
involved are most likely middle to older age t.hemselves. creating more
(1982)
The problems which these families face when caring for someone
with SDAT begin with the emotIonal stress of the diagnostic
°hysicians hesitate to diagnose the disease without
¥~hich
tal::e beth timE and mone\.'"
3
C-OC8SS.
battery of tests
Some physiCians do not nave
enoGq~
knowledge about the disease to clearly explain to the family the
behaVIors and symptoms to expect and the problems which the famil\
When caregivers e:cect the cerson
hostility
the
towar~
caregive~
wit~
that the disease is oresent which C3uses
about the person's c2oabilities.
SDAT becomes more
im~ul5ive
~5
c~ntinwe
~~
At the same time.
the Alzheimer victim can result.
may also feel guilty about being
SDAT to
ang~v
~nrealistlc
towards someonE
Expectations
the behavior of the cerson
~ith
or belljgerent and reOUlres constant
monItoring, the physical strength of the caregIver becomes a concern.
The
~ith
SDAT will
m05~
likely be active
an~
which fLrther weakens the careglver's strength and
~he
24-hour care
reqUlre~
and the
lac~
3 deep sense of isol3tion frequent among
alene.
The
healt~.
of resources in the community
for family care prOViderS are the major facters
and Cr!S25
restless at
i~
t~e
deve~CDmEnt
c~
c3~eglvers.
ThiS often C2LSES Qreat stress.
1 '?81 )
~inanci21
oroblems develJP as the neet for
The chronic nature oi the d:sease el:m:nates the
JualifJing for Medicare.
crocedures oi
prcvid:~g
con5tan~
oare grows.
in~ividual
fro~
The mentall! impaired only luallf
meals and assisting
~ith
if
~
toilet fun:tlcnln;
.~.
:
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heme health care 5e-vices provide in-home tVP2S ef res2:te care.
for a small amount
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time can be supportive
an~
The whole family is affected bv the disease.
Fam~!ies
:o~munitv
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re~reshing
{Dowell & :ou~tiC3!
dealing with an SOAT Victim mav be apprehensive
and among physicians
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have recently teer started
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Self-help grouos
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\
croblems can come tc share and learn.
Support
grou~s
rrov:de
lnfo~mation
expected behaviors related tc
sharing
~~
diSEase.
Among
and the succort
t~s
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In
can develcc in that network are dealt
"='.
pilot "::;tuc!/
feellng5 ane the direction of their l:ves after
caregl~ers
t~e
members.
ca~egl~e~s.
whic~
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::.u.pocr~t
g~ouo
feelings becomes a coring device against
effects of the diSEAse on
~embers
t~e
concerning symptoms. oauses and
the~
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better
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~rom
31tuatio1S
wa~5
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c~oking
durlrg the d:agncstIc oreCESS. Dr Even
study.
soo:al
of dealing with the
most vulnerable
35
se~vices
~ork
Aronso~
and
LIDkc~itz
inter/ention
11981\ target three
necessar; and suggest
15
The slngle
th~ee.
ce~son
wi~h
Alzheime~'s
All the fundamental tasks of
situ2tio~.
meals, managIng morey, etc. become
and setting Uo resources to insure the
late~.
3
pe~son's
l~ving,
"-L
_
: ii=
conce~r.
and
52~et;
suc~
De~50nal
The secord
-
-
provlde
ca~e
.!r .'.• 1--
but at the 52 me time IS overwhelmed
~ith
the
res~ors:~i-
SPOUSES who are elderly themselves and are the sele careg:ve
are typical e!amcles of this
a~~angement.
The professional mL.st
intervene to assure the safetv of the Alzheimer patIent and the
5CO~5e
and at the same time give needed support and attention tG th?
-
overwhelmed caregiver.
conditior:.
ln
Ins~~tutiora!izat:cn
may become
neceS5ar~
situations where the person WIth Alzheimer's diseaSE
has an irdifferent famIly but a friend who is willing to he!c. the
social wcrker's responses will be based on legal concerns.
friend WIll not have legal
~ights
over the ;inances of the cerscn -n
order to secure necessarv serVIces.
J~risdiction
be sought as
earl~
It is suggested that legal
as possible by the care
p~oviding
frlend in order to make adeouate arrangements for the AlzheImer
This is a de!icate situation.
-
r
Wor~ing
WIth both the friend
and
t~e
familJ recuires the social worker to take on the
~oles
of
mediator and advocate.
~ore
effective when working with overburdened caregivers
the informal social systems
~~ ~tilize
a~ai:atle.
comm~nity
resources are
_
.:i
1,
oJ.
1
...
In the area of nursing heme placement. the social
and
wepke~s
other crofessionals working in that setting should je avaIlable durIng
the busv visiting hours in order to meet the needs of
-
One hour interv:ews were
conducte~
social worker
frQ~
a nursing home located
3uoport Groue. during the time the
-
-
four males 3nd
~ortie5
female
to middle SEventies.
:aregivers
peoole
~~elye
~ere
i~
t~ei~
A!zheimer's Dlsease
~ith
In the
and O\ef half
c~
st~~y.
inter~~ews
WIth one
~nd
were conducted.
~ad
In thE samcle
the~5
~anging
_~
Ir th:s groue. 50 oercert
forties.
age
G~
~rom
we~e
{see table 1:
~erE
all 60
~ears
21t
46 cercent of the caregivers
the care providers were
ch~ldren
O~
we~e
cIder,
jau~hters
of the cerson Hitr
;our basic l:ving arrangements e!isting between
caregivers and AlzheImer oatlsnts
~usbanj/~ife
prOVIded care
-
~elatiorshics
.~
thei~
ow~
oresent {table 3;
homes.
ea~:
thE
(:iee ta.ble 3)
~here
an0
Muncie.
~n
=~re~~vers
famil~
cr:mar~
from the Alzheimer suoport groue In Muncie. :N
:3re~iyers
~e~e
sixteer
wit~
bot~
all
~;
the SDouses
had sorreone else
livin~
them to helc.
w~tn
3nd were
stranger~
(see table 4)
~he
diffi~u!~~
~{
One
'inding someone to take
commented or
careg~~er
POSItIon.
~h2
person acceoted the posltlon. there were still problems
lard tc kees the
the
Al~heime~
li~e-in
v~ctins
ass:stant for
and living environment were
~ehavior
J..
the family members
!lctim in her
Age
_"I
This
~able!
Caregive~s
Female
J
1:
~ab!~
3 Caregiver's
relatiJnS~lD
necessar~.
caregIver
t~e
Derson'~
one of the
!~
livin~
~i~
shifts ire
did not clace the
arran~ment
fam~lv
.able
Total
2
~
L
..
°er son
>';1 :. :~~
SDA'"
Fea-ial e
Tota:
.,.
:
7(;_10
,.
30-89
'"J
~D:~L
3
it
t: SDA T person
~
3
~l~ing
Daughter
~esconsl~i:-
member~
Male
Age
JO-69
~
.:.
;,l.i
arrange]2nts
Caregiver net :n home
Saregiving spouse in home
4
SDAT
:erSQ~ mQ~es :~
Someo:1€ Qutside mOves . "
After the demcgrachlc
:~llected.
the survey
qUestlors were
-
_ I
:::li_C:C·
-
hame.
~~
'.. ULr
but allowet
d.l .;,
lO-49
-
~wn
'I
ities
M": e
,;c.
terms of
which recu:ret
~omes
of the person's home. constant surveillancE nf the
ou~side
W2~
:t
length of tiTS.
3n~
moved into family member's
T~
beca~se
in:ormatic~
ccntai~in;
cDen-ende~
to
~ust
de5cribe~
had beer
ten questions was 3dminlstered.
p~ovide
lnsight into the
percectlc~5
The
ant
-
Could vou list the f:ve ma,cr problems vou see tha:
:areglvers
would you say
~hlCh
-
naye~
What kine of
th.;t.
with this
JOU
~Lt
find
about. the support.
What types of changes did vou have to
~
Every jay
arcun~
t~e
ma~e
in vou·
have lour responsibilitIes
~ow
hOUSE changed~
Have t.he
3.
grou~~
living~
As a caregi\er.
wlt.hin your family been
~elatlonshics
effected tv the
-
:::::JU 1 d
protle~~
Yow did
-
;roblem~
have vou gotten :n this area
Dei
1
-
hel~
the bIggest
i5
disease~
Ir what ways
10.
Aside from the
~elp
would you Ilke to have
suppo~t
group, what ether kinds
D~
now~
Each case of Alzheimer's is unicue because of the varying
~n
~he
~erson,
eff~ct~
t.he type of environment in which t.he cerson lives and
A!l sixteen cases
lerv cifferent. bwt Eome
EaCh caregiver
t.he
Q~
~rcvided
~2jQr
problems were
eroblem was the
inabi:it~
t".~.
-.
H!::.
~-.
~:..
,'.
The most frequent. malor
to get a comclete nIght's sleeo.
or become restless at night.
:he caregiver'; strengt.h.
recccwrr~n;.
the interviewer
Qroolems the disease had created for them.
~ere
These nightly interruct:ons wear dowr
~even
of the
~aregiver5
listed the
~rQblem
)
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-
~a~ch
his wife
car2full~
~hi12
on their weekly shoDDing trips jecaus2
-
-
to buy :he items she
~ande~ing
Because the
~ot
She could
she had the habit
t~at
she
wante~.
away from the house is another
Qerso~
~emember
~ith
~art
o~
the
Alzhe:mer's DiseaSE has trouble
p~oblem.
~-ememberln~
things. thev may be trv:ng to go _ specific place but are not sure
-
one
~f
the caregivers who listed wanderinc
wandering of a perscr
the daughter of
w~th
victim.
3
does not speak, or
the disease
~as
25
a problem.
describe~
Her mother may get i.:. .-',.-. .J-',~=~
The
as dangerous bl
~
landmarks a stranger would not be able
~ecognize
~~
direct her back home.
-
The comclete decendency. the confinement placed on the caregiver.
and the feelings of
~e8ple
interviewed.
and loneliness were all listed bv other
(see table 51
The
depende~cy
on the caregiver
included following
t~e
person wherever he/she went. even to the
Some of
t~e
Yi~tims
bathroom.
-
i501atic~
of SDAT would net allow anvone else
except the person taking care of
.jai:y activitv_
It
~as
the~
to help them eat or do any cthe-
hard for the caregivers to get out of the
house because of the increaSIng deterioration of moter and menta:
caoacities of the SDAT victim.
Providing a wheelchair for his wife to
use when going outside was one man's solut:en to coping
-
=onfinement he contInually felt.
~ith
the
When const3nt care is required and
the person with SCAT begins developing some strange behaviors. friends
feel
unc~mfortable v~siting
and tend to visit less.
Two of the
caregivers descrIbed their situations as lonely because thev did not
have friends or family on which to deoend.
it
There was
~o
~ne
avallable
~o
talk
who would understand the loneliness and isolatian that
~ith
comes with an overdependent spouse.
~he
strong dependency Alzheimer oatients have on their =aregivers
was chosen by twentv-four percent of the caregivers as being thE
biggest problem.
(see table 6)
the second question on the
This information was obtained
su~vev.
~rom
The caregivers felt that the
amount of sacrifice in oersonal time and orivacv was averwhelming.
Watchlng the person with SDAT constantly, being followed by the person
everjNhere~
and the refusal to be cared for by anyone other than the
primary caregiver were all indicated In the survey as part of the
jependency problem.
~ab!e
6 Question 2: Biggest problem
4
dependency
jealing with deteriofition
violence
;eeling of helplessness
lack cf k~owlecgE
restlesS1ess a: night
financla;
stays In bed
Jerscnalitv change
~~eDaring meals
Table
~
Question 3: Help received wi~h biggest prob:em
Nurse lIn-home carE'
Slioport group
neighbors
~hysician
literature
lawyer
taking oersor D~t
psychiatriC help
someone li~ln~ :n home
:hange
!
~lysicia~s
~eaI5-o~-WheEI5
:hurc~
...
I~
~ion
is
f~om
5UODort
the demands of the dependent person and the deterlora-
of the disease
t~at
frLst-2ti~n5
build-up and violence
relationship t, both the careg:ver and the cerson wlth
disease can result.
for
he~
stean".
reallv had the jisease.
mather, and
Some
~f
the
Alzhelme~'5
Jne of the daughters of an Alzheimer's vi=tim
confessed that her mother had troLble coping with the
~Lsband
withi~
i~
realit~
that her
The frustration level was verv high
was net uncommon for her mother to hit her
the tehav!ors WhICh
~eoc!e
wlth SDAT
de~e~oc
SEem
-
clanned to be
pu~pcsef~!ly
bei~g
the
fiolenc?
h~s
immed:ate
~ost
hands
~o
~all
a~ms
50
tl;htlv that i t was ver; paln1ul
wife.
h~5
~trength
an~
and wowld
One t!me she was net able to reach the phene
her neIghbor for help and was traoped in her house with
-
t~e
The caregivers arE not always able
~o
-
o~
a~
of one man who grabbed held of
habi~
per sen WIth BDAT was wnaware of his
T~e
not let :0
o~oblem.
wOLld be the
po~s~ble
w~fe's
stubbo~n.
de~end
~ealize
the strength that her or snE 005525525 and the
contrast.
TWO
themselves.
15
tired
~rJm
the 24-haur
c~re
careg~ver.
~!
responsibilities.
of the careci jers be!:eved that dealing With the detarioraDealing with oersunalit,
to accect that the
~t~mulation
must
pe~50~
~ow
be
~hc
give~
TWO other careg:vers
ence hat
c~ovidet
ji~ection5
d~~
net see
irtel:ectual
on what to de if the 8hone
t~at
detericratlD~
the
was 25
feeling of helclessness that
-,
do J.
~boct
.,
~.
c:-f the
what to o:oect
~rom 50~eone
The lack cf
with the disease oresented a ma.or
The frustratic:-ns
10
c:-~
net
~nD~ln~
where te turn fer help accentuate the feelings of
resources used t; ca-egivers.
most
menti~ned
was the help
~~ter
heme health care ser/lces.
the Health Care
I~
beth questions. the resource
~rovljed
b~
a
Isee tables - and 8'
and the Visiting
Cent~r
nurses who manito· the health
o~
helDle5snes~.
~urse
who administered
n~rse
In the Munc:e arS6,
AssGciati=n empl=v
the homebound and als0
gi~e
bathin~
assistance.
ca~egivers
sources :f help fer problems
listed
...
(see table
was the supoort group.
n~ne
25
f~equent
As the caregivers deal with the
changes
In ~2ilv !~v!ng
arrangements,
change~
~nterestjng
c2~eglverE
oroble~s
creatd bv the diseaSE .
The
~hre? c~ange5
the respondents were changes in flnancia:
~
In I1's-style because sf the necessarv full-time
care responsibilities and givlng 'ul!-time care, and changes
:a~e~lV2~'S
Table 8 QuestIon 4:
mobility,
Vncw~
rescurces
(see
~~at
t~ble
could
hel~
~,
ths
~\
Table 9
Q~Esti~n
6: Types of
everyja~
living
fi~incial
none
f~ll-timE ca~e!deoender:v
:nyslcia15
lImited mobi!itv
sleeping habi~s
whole 5:~eju!e
teac~ing rather to
,eighbDr~
supo~r~
~atiDnal
r
group
Association
.,
visiting
·a~IIV
Silver
St~e3k
getting
aWiV
+r
answer.
satterns are necessary.
most freQuentlv described
It is
the major ones. the
~evcnd
the sec and most
7)
~erscn
driVE
1ess
stop working
sacrIfice o~n needs
Increase housekeeDing
(transportal!
:hurch
~lve
~ospita]
someone mOVE i~
lisiting persGn
10
up
recreat~Jn
~hange~
:n the area of finanClal responsibilitIes. three of the five
caregivers describing changes
~e8C
track
o~
of the cersor with
~bt3ining
Of
~ail\
l~v~ng
found it
nEce55ar~
their personal 'in2nces for the first time.
two peDDle who made
-
~n
financ~a!
S~AT.
changes had tD sacriflce same clannet
~aj:ng
power of attorney
o~er
for constant health care ant
the BDAT victim's finances were some
the changes e!cla:ned in the interViews.
Oro~idlng
~uIl-~ime
care was another
c~ange
that five of the
The full-time care
~ade
~equlret
it necessarv for some of the caregivers to give up planned
Not
were vacations cancelled but. as one careg:ver
onl~
the othe- charges categorlzed :r
:are
-
rec~irements
work:rg in
s~ch
as the
Ta~le
9
necesslt~ Of
a result of full-tlme
one caregIver to stoc
to Natch her husband.
orde~
Providing fwl!-:ime care was also a factor in the limite1
change in
dail~
livir~
fer one Of the careglvers.
many outdoor sDorts fOLnd it necessarv to
he needed to stay in the hOUSE
to
ta~e
their
When
actual
5pouse~
loo~irg
mo~e.
~iV2
One man who
Other caregIvers found it easier
with them on the shoGoing trios and outings
hcusehol~ resc~nsibilities~
~e
en~ovet
up some of them because
at the changes made bv the c3regivers In
again consijered to
-
we~e
ta~ing
te~ms
~~
of
control of the finances was
a ma;or :hange for the caregivers.
'see table
:01
The
or decrease in the amount of housekeeoing duties
inc~ease
were listed 25 changes
caregIvers
mentione~
b~
that when a persor has to be
the heavy housekeeping does not get done.
~he
~or
w~th
SDAT
g~ew
worse.
continuouslv
~atchec
the male
amount of their nOLsekesoing responsIbIlities
spouses
Some cd: ths
four of the ceocle interviewed.
careg~ver5.
inc~eas2d
as their
Cooking the meals and shopcing were
n2~
activities for some of
mentioned the need to keec all the furnIturE around the house in the
Catastrochic
refusing to sit in
~een
mov~d
t~e
ma v result
~eactions.
-
-
numbe~
of catastroohic
Tab!e 1t Question 7:
Ch~nges
ir
as a oerson
~ith
SDAT
liv!ng room because his/her favorite chair
~hen
are made in the house.
cha~oe5
5chedullrg of meals. bedtime
-
5UC~
a~d
medication
.f- .-.
'.L..'
ha~
S:c;uti ne
Ii. mi t
~eactions.
~ouse~cl~
res:onsitilitles
Table
finan:es
it
QUEstlcn 8:
Relations~ics
~Guti~e
su~port i 'IE
dralrln clOSEr
~at:~ Derson ~ith SDA~
:ooking meals
SD~cific furnitLre placement
Jower of attornEV
nurse 40r 2hysica! hyg:ene
;uilt trio on car~giver
conflIct
:annot COD2
not acceDting
j: not talk about oroblem
not understancing
;enetic worr'"ies
s:hedule
~o~sekeepi~g habits
u~:offifartable
with famil\
with SDA:
role reversal
lost :ortact
:areglver embarrassed
Each c3regive r gave
relatlonshics had changed.
su~portive
3
number of 8\amoles of hew family
The change described most was that of
2
family.
'amilv ~id not alwavs completel\ understand the dlse2sE but were
~!lling
~~
do anyth:ng the; could
t~
helD.
The devastatinc effects of
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c~
50me family reactions as
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:3regiver, the careg:ve r
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t~e
o~
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2S
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lS isolated from possible sources of help and
the SDAT vIctim alone.
fo~
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confllct5~
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and behaviors was the pur8cse 0 4 Quest!cn
number 9 in the survey.
depended or hobbies,
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w~th
in the
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listed some type
stud~
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also found that taklng
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~r8vides
inf~rmation
=~
estab:isned sucoort
However, onlv ene caregIver
A daj care center was
t~e
grOUtS
~sed
from
t~e ~at:on2!
th15 resource.
most ccmmen need mentIoned.
(see
table 141 A day care facility :n Muncie would brIng
c~nS!der3ble
support to
D~ace
t~e
careg:vers.
The facilitv
~culd
be s
where
staff of orofesslonais to orovide adequate Dare and funding
because of the diversity
clientele ;unction:nc.
free-tlme to
~ela
c~
oeoDle and
t~e
different
:eve~s
of
The day care center wou!d crovlde the person
socialIze
a~d
Co other thinGS.
many times unable to accomo!ish necessary errands becaUSE
constant monitoring needed of
~~e
Alzheimer
OL
the
~~cti2.
Dav
Center
~'.I:n2
fr:enj
.financial helc
~cre support ~rcups
in-dept~ exclaraticn c4 SDA~
:nore friends
more work with fami:v
Alpha Cent9f par~icioati:'
~nderstanding do:tors,rurses.
lurslng home staff
Jwn
;~formatiJ:i
Natlcna! Headcuarters
crcfeSSlo~al
contact
radi 0
-
Ca~e
leWS;Hp&f
Two of the
~aregjve~s
wanted to find o~t more about the disease.
and the possibility of
caregivers had
~eve~51ng
the
o~oblems
we~e
311 Questions that
the disease of their relative.
concer~ing
The mere
information there is on the disease the easier :t is for some Geepls
to ceDe with the effects of the disease.
thraugh personal resear:h or from
expressed
careg~ver
I~formation
consultat~ons
with
may be
obtaine~
One
chysic~ans.
wish that physicians and social service agenclEs
E
would work more closely with the whole family.
More financial hele
was described bv two caregivers as a needed resource.
Fam:lies who
have been successfully making ends meet find it dIfficult to have te
ask for assistance as the cost of caring for the Alzheimer patIent
increases.
ApplYIng for a public assistance program can be a
demeaning and undignified chore.
this relL'ctance to ask
~or
The socia! worker interviewed
foun~
financial helD frequently in working with
the families in nursing home.
Guardianship and power of attorney are
legal actions that can be taken to monitor the patient's financial
status.
Some caregivers were not informed of this possibility during
the diagnostic process.
One of the caregivers felt very strongly
about the paint that the
doctors~
nurses and nursing home staff should
be more Lnderstanding toward the SDAT
pati~ftnt.
The caregiver had
trouble getting the nurses to understand that some of the actions by
the oerscn with Alzheimer's disease were not done on purpose or to
irritate them.
The
~nderstanding
may develop as these professionals
acquire more knowledge about the disease.
Increased knowledge about
the dIsease and a greater understanding by the pro'essionals working
with the cases were all suggested by the careqivers interviewed.
Limitations of the Study and Suggestions for Action.
-
This
study of caregiver's perceptions of thelr needs has some
limitations.
The sample was not randomly selected from the total
population of caregivers in Muncie.
Only ten percent of
membership of the suoport group was surveyed.
~he
total
Sampling members of the
support group places further limits on the studY.
The survey onlv
described the oerceptions of those caregivers who were seeklng
from the Al:heimer
S~pDort
grou~
and who were willing to
the experiences through which they had lived.
and the questions painful.
~ere
as~ed
meetings.
we~e
p~inful
Tne nature of the interview
to remember.
to partlcipate in
People were alsc
t~e
president of the support group.
-
5sked if thev knew anyone els2
willing to be
interv~ewed.
rea~lred
of the
~rogr~ssi~n
Members of the
sU~pDrt
study during one of the
chcse~
abcut
~all
The survey was personal
caregivers to reflect on various moments juring the
disease which
~elp
with the help of Mr.
grDu~
~onthl~
D2Vi~
Duf~.
Ye provided names of caregi:ers who
f~om
the support group who would te
The goal of the study
caregivers and prcfessionals having contact
~ith
W2S
surve~
to
caregivers.
TWO of
the people were unable to be reached and one of the caregivers
refuse~
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~:
In
proposed
!~c~eased
d2~
care
ce~ter~
also
I~
the dIverse set =f needs
and in other ccmmun:ties.
Munc~e
fer already
'und~ng
in-home res::te care
Q~
in
orograms
est~blished
~eccmmended
t~2t
provide
for a more comolete coverage
among the families.
~ound
also possibilities.
The suoport of further
possible causes of the jisease
increase resources
f~r
en Alzheimer's Disease is a
resear~h
a~~
e'fect~
on the familv wi:l he}:
Alzheimer caregIvers.
CDr1clu.sicl
Alzheimer's disease
enl; effects
t~e
11fe and
There are
:5 2
deterIorating braln disease which not
of
beh2v~ors
2
t~e
m~ltitude c~
person havln; the disorder,
croblems with wh:ch the
additlon to helping the patient, the he:ping network
jir~ct
-
its attention towards the caregiver
wnelmed, tired
and
manv times
Knowledge about the
21o~E
di~e2~e
should be done about the disease
~h~
~ee~s
tc alsc
i3 ;~n~ral:~ c~~r-
in prov:ding care.
in
15
a~d
-:"',.-.,
;~~
infancv and more research
the strain it
~J2ce5
or the
jive~51ty
~ave
found
cancer~ing
\/i
amo~g
th~~
group oJ aecolE.
the total dependency and
:::t 2. iT can be
le55ene~
~jt~
t~e
120\
of
--.-
UT
The te\elocment of such resourC2S
need
ore0ict2bi~itv
.-~
'.J
07
_.....
-:~.
2oi~ts
tc SEcure adeou2te
toward
~,
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