The Effects of Alzheimer's Disease on Close Relationships between Patients and Caregivers

Author(s): Rosemary Blieszner and Peggy A. Shifflett

Source: Family Relations, Vol. 39, No. 1 (Jan., 1990), pp. 57-62
Published by: National Council on Family Relations
Stable URL: http://www.jstor.org/stable/584949
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 The Effects of Alzheimer's Disease on
Close Relationships Between Patients and Caregivers*

Rosemary Blieszner and Peggy A. Shifflett**

The focus in this research is the relationship of married and parent-child pairs in the presence of Alzheimer's disease. Inten-
sive interviews were conducted with 11 caregivers for early-stage Alzheimer's patients to investigate changes that occurred in
their relationships concurrently with the onset and progress of the disease. Over an 18-month period, intimacy declined in
both spouse and parent-child relationships. Caregivers were saddened at the loss of reciprocal aspects of the close relation-
ships and found it difficult to cope with the uncertain prognosis. They were unable to complete the grieving process and focus
on other primary relationships in place of the lost one because the relationship continued though in a drastically altered form.
The article concludes with implications for future research and suggestions for practitioners who work with Alzheimer's pa-
tients and their families.

A lzheimer's disease (AD) is one
of the most disabling and life
threatening disorders of later
life. Currently it is listed as the fourth
leading cause of death among older
adults. This disease is characterized by
severe brain atrophy and the accumula-
tion of neurofibrillary tangles and
neuritic plaques in the cerebral cortex.
These changes lead to memory loss
and confusion in the preliminary
stages of the disease, then to in-
creased mental deterioration, lethargy,
total helplessness, and death as the
disease progresses. In contrast to the
increasing amount of biomedical data,
there has been less research on the
social psychological aspects of AD. Ex-
isting research focuses, in large part,
on the caregivers' life styles and finan-
cial status.
The impact of AD on family and
other close relationships has been
largely ignored. The symptoms of the
disease, noted above, gradually pro-
gress to loss of ability to interact with
others; therefore, it is possible that AD
has tremendous effects on personal
relationships with family members and
friends of the patient. Educators,
medical specialists, and counselors
will provide more effective assistance
to Alzheimer's caregivers if they under-
stand feelings and problems associ-
ated with relationship change, as well
as those associated with the disease
itself.
Review of the Literature
Changes in close personal rela-
tionships have been studied as proc-
ess. Some aspects of this process are
meeting and becoming attracted to
potential friends or romantic partners,
developing and maintaining close rela-
tionships, and experiencing problems
that may lead to dissolution and ter-
mination of some relationships. Each
phase of a relationship encompasses
multiple steps. For instance, Duck
(1982) proposed a five-phased process
of dissolving close personal relation-
ships which begins with perceived
dissatisfaction with the relationship,
proceeds through confrontations and
negotiations both between the part-
ners and among their larger social net-
works, continues toward the decision
to end the relationship, and ends with
activities designed to help the partners
get over loss of the relationship. No re-
search has been reported on incom-
plete dissolution of relationships, al-
though Van Gennep's (1908/1960) dis-
cussion of status passages included
the theoretical construct, incomplete
passage, in which a person may be
unable to pass from one status to
another.
In gerontology, most relationship
research has focused on static quali-
ties of relationships such as character-
istics of friends, types of interaction
between parents and adult children, or
marital satisfaction in retirement (see
Chown, 1981, Mancini & Blieszner,
1989, and Ade-Ridder & Brubaker, 1983,
respectively, for reviews of these
topics). The few gerontological
research efforts that have focused on
processes in close personal relation-
ships include Adams' (1987) and Shea,
Thompson, and Blieszner's (1988)
studies of friendship formation and
maintenance, Lopata's (1973) study of
adjustment to the involuntary perma-
nent termination of widowhood, and
Hagestad and Smyer's (1982) study of
negotiation and adjustment to divorce
in the middle and later years.
There has been a limited amount
of research on nonterminal relation-
ship processes such as breakdown
(turbulence or disorder in the relation-
ship) or decline (reduction in intimacy
without actual physical withdrawal
from the relationship) (Duck, 1982). Yet,
breakdown and decline in a relation-
ship are psychologically distinct from
dissolution and termination, and these
processes have significantly different
implications for the partners' future life
styles and life satisfaction. Obviously
if a close relationship ends in divorce
or the death of one partner, a new close
relationship may replace it, whereas
breakdown or decline do not necessari-
ly end the relationship. Individuals
may, for various reasons, be unable to
end a no longer satisfying relationship.
Rusbult (1987) developed a model
to explain possible reactions to an un-
satisfying relationship. Besides exit,
tactics that involve ending or threaten-
ing to end a relationship, the model in-
cludes three other coping strategies.
They are voice, actively and construc-
tively expressing problems; loyalty,
passively but optimistically waiting for
the relationship to improve; and
*This research was supported by the Biomedical
Research Support Grant Awards Committee of Virginia
Polytechnic Institute and State University. An earlier ver-
sion of this paper was presented at the 7th Annual Meeting
of the Southern Gerontological Society, Norfolk, VA, April,
1986. We appreciate Jay A. Mancini's insightful comments
and the help of Phyllis Bridgeman and Laurie Shea in tape
transcription and coding.
**Rosemary Blieszner is Associate Professor in the
Department of Family and Child Development, Virginia
Polytechnic Institute and State University, Blacksburg, VA,
24061-0416. Peggy A. Shifflett is Associate Professor of
Sociology in the Department of Sociology/Anthropology,
Radford University, Radford, VA, 24142.
Key Words: Alzheimer's disease, family gerontology,
marriage, parent-child relations, relationship decline.
(Family Relations, 1990, 39, 57-62.)

January 1990 k FAMILY RELATIONS 57

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neglect, passively allowing it to wither. and communicating love declined early from all respondents and identifying
These concepts may be applicable to on. Spouses with partners in later categories within the range of answers
the situation of AD families. stages of AD felt guilt about the con- given. The authors and five research
flict between traditional marital com- assistants reviewed the transcripts in-
The occurrence of AD, with its in- mitments and their interest in develop- dependently, then met to discuss the
herent memory loss and behavioral ing new interests and relationships. categories and arrive at consensus
changes, presents a unique source of The aforementioned studies il- regarding the placement of responses
change in the close relationships of lustrate some of the ways in which AD in them.
married partners, parents and children, affects close relationships. The pur-
and friends. This disease is very unpre- pose of this research is to explore in Sample
dictable in terms of duration and the more detail changes in husband-wife The sample consisted of family
nature of symptoms, with some pa- and parent-adult child relationships in caregivers of recently diagnosed AD
tients living many years after the onset. families with an AD patient. Several patients. The caregivers were iden-
We can assume that dementia associ- research questions were formulated to tified through an Alzheimer's Disease
ated with AD leads inevitably to break- direct the study: (a) Do close personal and Related Disorders Association
down (disorder) and decline (loss of in- relationships become disorganized support group in a small central
timacy) in these relationships; how- and less intimate in the presence of Virginia city, population 35,000. Six
ever, there have been few studies of AD? (b) If close personal relationships caregivers were spouses of patients
these processes among AD patients do break down and decline in intimacy, (two husbands, four wives). Their ages
and their families. what are the stages and key dimen- ranged from 58 to 74 years, with a mean
sions of the process? (c) How do of 67 years. Their educational level
Most of the research on family caregivers cope with disorganization ranged from 12 to 17 years of school-
members of AD patients has focused and loss of intimacy in close personal ing, with a mean of 14 years. Five care-
on their burdens (O'Quin & McGraw, relationships when both participants giving spouses were retired, and one
1985; Zarit, Reever, & Bach-Peterson, remain physically present? was employed full-time. One was in fair
1980) and the effects of these burdens health, four reported good health, and
on their psychological well-being one enjoyed excellent health.
(Anthony-Bergstone, Zarit, & Gatz, Methodology The adult children included one
1988; Pagel, Becker, & Coppel, 1985). son and four daughters. Their ages
Research Technique
Only a few scholars have addressed ranged from 37 to 57, with a mean of 45
the implications of AD for family rela- Because there is no previous years. They had completed 12 to 16
tionships. Scott, Roberto, Hutton, and literature on which to base this study, years of education, with a mean of 13
Slack (1985) described conflicts that an inductive, exploratory procedure in- years. Four adult child caregivers were
can occur among family members who volving thorough, face-to-face inter- employed full-time and one worked
care for AD patients and determined views with caregivers of AD patients part-time. One rated her health as fair,
that disagreements and perceived lack was used. The research design con- one had good health, and three were in
of support exacerbate feelings of sisted of four interviews beginning excellent health.
burden in the caregiving situation. Ory shortly after the patient was diagnosed
et al. (1985) noted that persons in rela- as probably having AD. (At present, The patients included four hus-
tionships with AD patients that were diagnostic certainty of this disease can bands, two wives, and five mothers of
frail prior to onset of the disease ex- be obtained only by brain autopsy). The the caregivers. They ranged in age from
perience greater feelings of burden participants were interviewed four 61 to 86 years, with a mean of 73 years.
than those whose relationships were of times during the first 18 months after The patients had from 1 to 17 years of
better quality. George (1984) distin- diagnosis, with an average of 19 weeks education, with a mean of 10 years.
guished between spouse caregivers between interviews. Nine of the patients were married, and
and adult child caregivers on well- two were widowed. The caregivers
being. Spouse caregivers had poorer The interviews focused on five rated eight patients in good or ex-
health, were more likely to use psycho- time periods as the disease pro- cellent health and three in fair or poor
tropic drugs, had more financial prob- gressed. Interview 1 covered the time health. All the patients were in the early
lems, and had less leisure time than period prior to any symptoms (T1) and stages of Alzheimer's disease having
adult child caregivers. On the other the time period between the ap- been diagnosed recently.
hand, adult children reported more pearance of symptoms and the
stress and unhappiness than spouses diagnosis of AD (T2). Interview 2 Instruments
of AD patients. Both these groups had covered the first 4 months after the
lower well-being than more distantly diagnosis of AD (T3). Interviews 3 (T4) Four interview schedules were
related caregivers such as nieces, sib- and 4 (T5) followed at 6-month inter- designed for data gathering. The first
lings, and daughters-in-law. These find- vals. Though we conducted the inter- was retrospective and focused on Ti
ings imply that psychological and emo- views with primary caregivers, the and T2. It included questions on demo-
tional closeness to the AD patient af- questions focused on the entire sup- graphic information for caregivers and
fects one's reactions to problems asso- port group, and in some cases, other patients along with questions on pa-
ciated with the disease. Finally, Kvale family members were informally inter- tients' family roles, personality, early
and Bohlen (1985) studied changes in viewed. symptoms, and support by friends and
the marital relationships of spouse The interviews were tape recorded relatives. Also, caregivers responded
caregivers and AD patients. Spouses of and transcribed word-for-word to en- to the Miller Social Intimacy Scale
patients in early stages of AD recog- sure accuracy in reporting the (MSIS) (Miller & Lefcourt, 1982) while
nized changes in marital role patterns, responses. Content analysis of the reflecting on Ti and T2.
especially loss of egalitarian division qualitative data involved compiling The MSIS contains 17 items, 6 o
of labor. Sharing sexual expression answers to each interview question which assess the frequency of intimate

58 __ FAMILY RELATIONS January 1990

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behaviors on a 10-point Likert scale
ranging from 1 = very rarely to 10 =
almost always. Sample items include:
"How often do you keep very personal
information to yourself and not share it
with [patient]?" and "How often do you
feel close to [patient]?" Also included
are 11 items which measure the inten-
sity of intimate feelings on a scale of 1
= not much to 10 = a great deal. Sam-
ple items include: "How much do you
feel like being encouraging and sup-
portive to [patient] when s/he is unhap-
py" and "How important is it that [pa-
tient] shows you affection?" The poten-
tial range of the scale is from a low in-
timacy level of 17 to a high level of 170.
Among college student samples
reporting on the "closest person" in
their lives, Miller and Lefcourt (1982)
found ranges of 66 to 170, and means
of 124 to 156, on the MSIS. Cronbach
alpha coefficients ranged from .86 to
.91, test-retest reliabilities ranged from
.84 (1 -month interval) to .96 (2-month in-
terval), and the MSIS showed satisfac-
tory convergent, discriminant, and con-
struct validity.
The second interview schedule
focused on T3, and the primary interest
was in changes in the patients' symp-
toms and behavior, caregivers' coping
strategies, and changes in the support
patterns of social network members.
The MSIS was also repeated. The inter-
view schedule for T4 again contained
questions on caregivers' coping strate-
gies, changes in support patterns, and
repeated the MSIS. The interview for T5
was used as a termination mechanism
by including review questions from
prior interviews, questions about cop-
ing strategies, and caregivers' and pa-
tients' relationships with support
group members at this stage of
AD-approximately 18 months after
the diagnosis.
Findings
The first research question-Do
close personal relationships become
disorganized and less intimate in the
presence of AD?-was examined by
comparing the mean scores on the
MSIS for each occasion. (See Table 1.)
The mean score on the MSIS was 127
for Ti, with an average of 131 for
spouses and 122 for adult children of
AD patients. These scores fall within
the range reported by Miller and Lef-
court (1982) for normal student sample
members rating their relationships
with their closest person. Given the
theoretical basis of the MSIS, it is ap-
propriate that parent-child relation-
ships would be rated somewhat less in-
timate than marriage. Thus, these data
January 1990
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Table 1.
Mean Scores on the Miller Social Intimacy Scale by Interview and Category of Participant
Spouse
Number Mean Number Mean Number Mean
Time 1 6 130.5 5 122.0 11 126.6
Time 2 6 122.0 4a 107.0 10 116.0
Time 3 6 107.5 5 76.8 11 93.6
Time 4b 5 92.0 3 83.7 8 88.9
Time 5c 4 100.8 3 78.0 7 91.0
al participant declined to respond to the Miller Social Intimacy Scale for Time 2.
b3 patients died between Time 3 and Time 4.
cl patient died between Time 4 and Time 5.
indicate that prior to symptoms of AD
the caregivers had levels of intimacy
with parent or spouse similar to those
reported by Miller and Lefcourt (1982).
For T2, the mean dropped to 116
overall, at T3 it was 94, at T4 the mean
was 89, and at T5 it was 91.
Using the dependent mean t-test
procedure, these means with p < .10
were compared as a liberal, exploratory
standard for identifying significance of
differences. In the first set of com-
parisons, the Ti mean was contrasted
with each of the others. Ti was
significantly higher in each case [with
T2, t (df = 9) = 1.84; with T3, t (df = 10)
= 4.01; with T4, t (df = 7) = 3.32; and
with T5, t (df = 6) = 2.05]. In the sec-
ond set of comparisons, pairs of means
across the study were contrasted. As
indicated above, Ti was significantly
higher than T2, and also T2 was signifi-
cantly higher than T3 [t (df = 8) =
2.68]. The mean differences between
T3 and T4 [t (df = 7) = 1.29] and be-
tween T4 and T5 [t (df = 6) = -0.72]
were not significant. It is recognized
that the Type I error rate for these sets
of comparisons is p = .40, and readers
are cautioned accordingly. Nonethe-
less, these results suggest that in-
timacy was lower in the presence of AD
than it had been before the onset of the
disease, and that the major decline oc-
curred during the period of symptoms
until diagnosis of AD, with a steady
lower level through the first 18 months
after diagnosis.
The second research question
was: If close personal relationships do
break down and decline in intimacy
with AD present, what are the stages
and key dimensions of this process?
To present the data used to examine
this question, the findings have been
organized by caregivers' perceptions of
their relationships with the patients at
the various time periods previously
defined.
Time 1-Relationship Prior
to AD Symptoms
This time period was examined
with the following indirect, open-ended
__ FAMILY
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Adult Child Total
questions: What kinds of roles and re-
sponsibilities did [patient] have in the
family? Did [patient] have health prob-
lems? Did [patient] have alcohol prob-
lems? How would you describe [pa-
tient's] personality before any signs of
AD? How involved was [patient] in fami-
ly, church, and community activities?
Responses to these retrospective
questions fell into several themes.
Both spouses and adult children noted
a variety of family roles and responsi-
bilities that the patients had main-
tained. Caregivers discussed the com-
panionship and shared activities they
had previously enjoyed with patients.
They mentioned the importance of
sharing feelings, ideas, and conversa-
tions. Spouses had typically antici-
pated travel and other activities for
their retirement years.
Time 2-Relationship During
Symptoms but Prior to
Diagnosis of AD
This time period was examined
with indirect, open-ended questions
such as: What were the first symptoms
and behavioral changes? Was there a
specific event that triggered the symp-
toms? Did they appear gradually or
suddenly? How did you explain the
symptoms to yourself? to others? to
the patient? Two themes emerged in
the discussion of these questions.
First, the caregivers found themselves
gradually assuming more and more of
the patients' roles and responsibilities
as the symptoms developed (cf. Kvale
& Bohlen, 1985). Second, the caregivers
found themselves with very mixed
emotions about the patients' behav-
iors. They reported that because they
had no definite explanation of the be-
havioral changes, they were frustrated,
embarrassed, and hurt.
... I find it harder to visit with her
... just to try to get up a conversa-
tion, I find it real frustrating. [son,
age 43]
The last two times I left him at
home alone, he called the police.
RELATIONS 59
 ... One time he called the police
in the middle of the night when I
was in bed asleep beside him.
[Another time] he told me I was an
imposter and that he was going
out to find [me, his wife].
A lot of times he would think I was
his mother. [wife, age 65]
Caregivers reported various
strategies used to justify the changes
in their relationship with the patients.
These included looking for physical
causes such as brain tumor or hearing
loss. Other explanations were per-
sonality changes, old age, AD, marital
problems, and menopause. The most
frequent explanation, however, was
"no explanation" suggesting that the
spouse or adult child was experiencing
vast changes in a significant relation-
ship with no understanding of the
causes.
Time 3-Relationship After
Diagnosis of AD
This time period was examined
with questions such as: When the doc-
tor finally used the term AD, how did
you feel? Caregivers stated that they
felt relief, sadness, grief, anger,
disbelief, and a lack of knowledge of
AD.
Probably the emotion that's been
with me most of all is just sadness
that we didn't relate more when
she was having symptoms. And [I
was] angry at her for not telling
me. . . I kind of displace [my
anger]. [daughter, age 47]
I really wasn't that familiar with
Alzheimer's. I never heard of it
before, but after they explained it
to me . . . I was really hurt and let
down. I felt really saddened by it. I
couldn't understand why my
mother had to be the one. ...
[daughter, age 39]
I tell you I felt relief in that-and I
guess this is a selfish thing to
say-in that someone else could
take over and do something that I
couldn't handle, and I could not
handle it. [wife, age 71]
I was relieved that I had something
to call it. I had gotten tired of hear-
ing, "Your wife is not aging well."
[husband, age 66]
Caregivers reported that they
found themselves to be more patient
and accepting of their loved ones'
behaviors now that they had a medical
60 I'M FAMILY
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diagnosis. They were more willing to
help their spouses and parents than
age
they had been prior to the diagnosis.
Time 4-Relationship
6 Months After
AD Diagnosis
This time period was examined
with items from the intimacy scale and
open-ended questions about spousal
and parent-adult child relationships in
terms of feelings of closeness, affec-
tion, and the nature of interaction. Re-
sponses to intimacy scale items con-
cerning the importance of the relation-
ship to the respondents and their feel-
ings of affection, understanding, and
closeness for the patients remained
fairly stable across the course of the
study. In contrast, items about aspects
of intimacy such as confiding in the
spouse or parent, enjoying time spent
together, finding the relationship satis-
fying, and receiving encouragement
and support from the patient dropped
sharply after the onset of AD symp-
toms. These responses reflect relation-
ship decline as described by Duck
(1982). The caregivers reported loss of
the normal spouse and parent-child
relationship.
The relationship is there but it is
not there. [daughter, age 47]
It's worse than being a widow. I'm
tied down. I'm trapped, and I can't
do what I'd like to do. I'm the only
person that can do for him. [wife,
age 66]
I'd have to say that she is not the
woman I married, but I still love
her. [husband, age 66]
Instead of a companion who
shares my interests, my husband
is now an old person who needs
help. [wife, age 65]
Someone is dying before you.
[daughter, age 37]
More specifically, caregivers men-
tioned the loss of reciprocal aspects of
the relationship.
You feel the same affection, but
it's frustrating . . . I can argue with
her. I can do anything with her, but
I like a little feedback.... You real-
ly just don't know where you are.
[daughter, age 47]
It's just that we used to share so
many things, so many interests,
and pursue them together. And
now ... he can't. [wife, age 65]
RELATIONS
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As a daughter, I guess it's sort of a
one-sided relationship. [daughter,
39]
Adult child caregivers observed role
reversal in their relationships with
parents.
Our roles have switched in a way. I
feel more like now I'm taking care
of my mother, instead of her tak-
ing care of me. [daughter, age 39]
Careg ivers expressed many feelings
and reactions to the changes in their
relationships. They felt sadness, loss,
and grief.
The relationship is dying. It's like
falling out of love with someone.
Love is dying because it's not the
same person. [daughter, age 37]
It makes me feel sad, because I try
to be kind and understanding, to
do anything that will make her
happy, but as far as the closeness,
I feel like I can't be close anymore.
[daughter-in-law, age 57]
I miss him. [wife, age 71]
They also had significant feelings of
confusion, frustration, and anger which
are evidence of disorganization in the
relationship.
I feel frustrated sometimes
because I can't seem to do any-
thing she needs.... It's not the
time, it's that you don't know what
to do, or can't understand, or get
her to understand. You get frus-
trated because what you do is not
helping anything; [you] tell her
something and later you've got to
tell her again. [husband, age 58]
The loss of cognitive functioning
that occurs in AD patients limits the
strategies available to family members
who experience growing dissatisfac-
tion with the marital or filial relation-
ship. Two of the options in Rusbult's
(1987) model, exit and voice, were not
available to the respondents. They
stated that they had not considered ter-
minating the relationship (even even-
tual institutionalization of AD patients
reduces caregiving responsibilities but
does not end relationships), and they
were not able to communicate their
concerns verbally. Thus family mem-
bers were apt to apply the more passive
options of loyalty to the spouse or
parent by continuing to provide care,
coupled with neglect of the relation-
ship to the extent that they sought
emotional support and companionship
from others in the social network, not
f rom the AD patient.
January 1990
Time 5-Coping with
Nonexistent but
Nonterminal Relationships
After one year, three of the pa-
tients had been hospitalized, two of
whom had died. Eight patients con-
tinued to reside with the caregivers,
and one had died. Thus, seven patients
remained physically present with study
respondents, and with the latter the
third research question was exam-
ined-How do caregivers cope with
disorganization and loss of intimacy in
close personal relationships when
both partners remain physically pres-
ent? The coping mechanisms fell into
three themes: redefining the positive
and negative aspects of the relation-
ship; the need to put closure on the
relationship; and a change in role from
partner in a close personal relationship
to a new role as caregiver.
Contrary to what might be pre-
dicted from relationship theory (Duck,
1982), the caregivers mentioned a
range of positive aspects of the new
nonexistent relationship.
I take pleasure in the little things
that please her-cooking and hav-
ing her like it. [daughter, age 37]
The rewarding thing is that I feel
like when I go over there and she
sees me walk in the door, and a
smile comes across her face and
she knows that it is me. That's re-
warding, just to know that, be-
cause she doesn't know anything
else. [daughter, age 39]
On the other hand, the negative
aspects included the typical burdens
and concerns associated with AD: fi-
nancial worries, grief and regret, loss
of communication, restriction in ac-
tivities, and the unpredictable nature of
the patient:
You never know how to take her.
... One day she's pretty aware,
and she gets upset if you explain
things like you do on the days
she's not [aware]. [husband, age
58]
The majority of caregivers ex-
pressed a need to put closure on the
relationship. Because of the uncertain-
ty surrounding AD, many had lost com-
munication prior to closure.
[If I could talk to her now], I would
want her to know that everybody
loves her. [daughter, age 47]
[If I could talk to her now], I would
want her to know how special she
was. [daughter, age 37]
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I guess I'd just tell her how much I
loved her and appreciated her for
being a good mother to me all
these years. [daughter, age 39]
Caregivers expressed concern
that the patient may fear abandonment
and stated a need to affirm their role as
caregiver for the patient:
[I would] tell him we will be at his
side until the end. [wife, age 71]
I want her to know that she will be
safe. [daughter, age 37]
I would want him to know that I
just hope I can always be there for
him. [wife, age 74]
She thinks everybody's against
her, and I would try to explain to
her that I do care for her and what
I'm trying to do is to help her. [hus-
band, age 58]
I want to tell her that all the things negotiate the relationship and maintain
I'm doing is trying to take care of
her, even though I lose my pa-
tience. [husband, age 66]
Summary and Conclusions
The purpose of this study was to
explore the effects of AD on close per-
sonal relationships, specifically spous-
al and parent-adult child relationships.
Prior to discussion of conclusions, it
should be pointed out that this ex-
ploratory study has several limitations.
The findings are tentative and of lim-
ited generalizability because of the
small sample size. Also, the sample
size precluded the use of statistical
techniques to pinpoint effects of one
variable on another. The descriptive
analyses, however, are useful for chal-
lenging current theoretical models of
close personal relationship processes,
and thus for encouraging further
research.
The study found that AD does af-
fect close personal relationships, as
reflected in the declining level of in-
timacy over an 18-month period. The
impact of AD on close personal
relationships varied in two
stages- prediagnosis and postdiag-
nosis. Prior to AD diagnosis, spouse
and adult child caregivers were frus-
trated, angry, embarrassed, and hurt.
They were constantly searching for a
reason to explain the changes in their
relationship (cf. Gubrium & Lynott,
1985). Immediately after the diagnosis
of AD, spouses and adult children felt
grief, sadness, relief, and regret. But
now that they have accepted the
medical diagnosis, they reported more
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patience with and understanding of the
changes in their relationships with the
patients. After some time, spouses and
adult children reported a redefinition of
expectations from the relationship, a
need for closure on the previous rela-
tionship with the same person, and a
need to clarify the new way of relating
to the person who was still physically
present but emotionally absent from
the relationship.
The existing theoretical models of
close personal relationship disengage-
ment and dissolution, based on divorce
and breakup of dating partners, imply
voluntary choice (Duck, 1982). Models
based on death of a partner imply in-
voluntary permanent termination of the
relationship (Lopata, 1973). Models of
nonterminal relationship processes
such as breakdown or decline (Duck,
1982) are different from dissolution or
termination in the sense that the op-
tion is available for partners to re-
it or to terminate it.
None of these models pertain to
the situation of nonvoluntary relation-
ship decline inherent in families with
AD present. Having a loved one devel-
op AD results in a loss of personal con-
trol over the status and course of the
relationship as well as loss of the abili-
ty of partners to negotiate aspects of
the relationship change. There is no im-
mediately available possibility of ceas-
ing the old relationship and beginning
a new one. There are no special mark-
ers of transition, such as funerals, to
ease the way into a new life style. The
spouse's or adult child's responsibil-
ities to the AD patient can endure for
an unknown length of time with unpre-
dictable rates and types of changes,
and with continued loss of control over
the relationship. As such, Van
Gennep's (1908/1960) concept of in-
complete passage may apply.
Implications for
Future Research
The findings point to several direc-
tions for future research. First there are
theoretical issues. As indicated in the
introduction, the relationship situation
of AD caregivers does not correspond
to models of relationship termination
that presume voluntary decisions, joint
negotiations, and permanent dissolu-
tion (e.g., Duck, 1982). A more ap-
propriate framework for study of the
relationship of AD patients and their
caregivers is one that includes multiple
reactions to and outcomes of decline
in intimacy, such as Rusbult's (1987)
RELATIONS 61
Exit-Voice-Loyalty-Neglect Model. It
appears from the data of the current
study that loyalty (hoping for improve-
ment and continuing to have faith in
the relationship and the partner) and
neglect (ignoring the partner and
spending less time together) are two
strategies that caregivers use to cope
with relationship changes caused by
AD. Future research could opera-
tionalize and test Rusbult's model in
the unique AD situation. Also, it might
be profitable to compare relationships
between AD patients and caregivers
with other atypical relationship situa-
tions, such as long-term incarceration,
in an effort to refine theories of rela-
tionship decline.
With respect to empirical issues,
longitudinal studies with large,
representational samples of AD
careg ivers and thei r fami I ies are recom-
mended to yield generalizable data
about the effects of AD on the entire
family. Such studies should attend to
variables and concepts that were
significant among caregivers in the
present research: changes in intimacy,
role behaviors, and plans for the future;
and caregivers' subsequent affective
reactions and coping patterns. This
body of studies would complement the
wealth of medical data that are being
accumulated on AD, and provide a
stronger basis for planning appropriate
interventions for caregivers and others
in the social network of AD patients.
Implications for Practice
As an increasing proportion of the
U.S. population lives to very old age,
the incidence of AD is likely to in-
crease. Health professionals who work
with Alzheimer's patients and their
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families, counselors who provide sup-
port to caregivers, and educators in
many settings have, and will continue
to have, numerous opportunities to ap-
ply these and future research findings
in their work. All of these practitioners
must be sensitive to the fact that
caregivers are coping not only with the
stresses and burdens of the patient's
unusual behavior, disruption to daily
routines, financial worries, and the like.
They are also coping with loss of the
partner in one of their significant adult
roles-a partner who, though physical-
ly present, no longer responds to the
relationship itself. Many caregivers
may find themselves in this situation
without having had the occasion to
convey their feelings to the patient
while the patient could still understand
them. Caregivers are upset because of
the relationship gap in their lives, yet
are unable to resolve their grief com-
pletely because the relationship has
not been fully dissolved. Awareness of
such feelings among caregivers should
motivate family practitioners to provide
holistic forms of assistance, rather
than attending only to the AD patient's
health and behavior problems.
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