Quality of Life of Patients with Alzheimer's Disease: Differential Perceptions between Spouse and Adult Child Caregivers
Background/Aims: Little research has been conducted into
differences in the perceived quality of life of patients (QoL-p)
when comparing spouse and adult child caregivers of peo-
ple with Alzheimer’s disease (AD). The aim of this study was
to identify the differential variables in perceived QoL-p be-
tween patients and carers, distinguishing between spouse
and adult child caregivers.
Method: Cross-sectional analytic
study of 251 patients and their carers (spouses: 112; adult
children: 139) using the QoL-AD scale and sociodemograph-
ic and clinical data.
Results: The more positive perception of
spouses was associated with higher educational levels of the
caregiver and greater functional autonomy in the patient.
The more negative perception of adult children was associ-
ated with greater caregiver burden and higher levels of de-
pression in the patient. The perception of daughter caregiv-
ers showed the strongest association with mental health
and burden.
Conclusions: Spouse caregivers have a more
positive perception of the patient’s quality of life than adult
child caregivers.
J.L. Conde-Sala, J. Garre-Olmo O. Turró-Garriga J. Vilalta-Franch
S. López-Pousa. Quality of Life of Patients with Alzheimer’s Disease: Differential Perceptions between Spouse and Adult Child Caregivers. Dement Geriatr Cogn Disord 2010;29:97–108
Discussion (for full paper, download the .pdf file)
Differences in Perceived QoL-p between Patients and
Caregivers
The fact that AD patients themselves have a more pos-
itive perception of QoL-p than caregivers has been re-
peatedly reported [2, 10, 13, 18] . This finding could be
interpreted in terms of what has been called the ‘disabil-
ity paradox’, i.e. the presence of high levels of subjective
well-being alongside objective difficulties in physical,
mental or relational functioning that, from the observer’s
perspective, should theoretically produce dissatisfaction
and distress. This paradox has been reported by overall
reviews of well-being in disability [35] , as well as by those
focused on subjective well-being in normal ageing [36]
and dementia [37] . One way of understanding the para-
dox would be as an adaptive coping strategy used by hu-
man beings in the face of insuperable difficulties, al-
though it remains unclear why it occurs in the case of
dementia.
At all events it could be argued that the concept of QoL
is based more on a personal and subjective viewpoint,
whereas caregiver burden can be analyzed in more objec-
tive terms (degree of deterioration and disorders in the
patient, number of hours spent on caring, other family
burdens and the caregiver’s own occupation). The present
results suggest that the perception of QoL becomes more
negative as the relationship to the patient becomes fur-
ther removed. Thus, patients themselves, their spouse,
their adult children and then other family caregivers
would, in this order, report a progressively more negative
view of QoL-p.
Differences in Perceived QoL-p between Spouse and
Adult Child Caregivers
Spouse caregivers had a more positive perception of
QoL-p than adult child caregivers, and patients who were
cared for by spouses also had a more positive perception
of their own QoL than patients with adult child caregiv-
ers. The higher score for patients being cared for by a
spouse is consistent with previous findings [16] , as is the
greater agreement between patient and caregiver percep-
tions in the subgroup of spouse caregivers [17] .
In other words, being cared for by a spouse rather than
an adult child was more favorable to both parties in-
volved. These findings cannot be explained in terms of
differences in the objective clinical status of patients.
However, as suggested by other authors [38] , the different
nature of spouse and adult child relationships with the
patient could be a key factor in terms of understanding
the differences in perceived QoL-p. Thus, spouse caregiv-
ers would consider the tasks of caring as part of their
marital commitment and would be closer, both physical-
ly and emotionally, to the patient. At the same time, the
task of caring would provide them with a role in their old
age that, despite the associated difficulties, would give
meaning and purpose to their lives. As noted by other
authors [39] , this task would thus be associated with less
burden.
In contrast, adult child caregivers would experience
notable generational differences with respect to the pa-
tient and might also feel more distant emotionally. Fur-
thermore, they would have to combine the care tasks with
other obligations (such as family and work) and this could
more easily lead to a clash of responsibilities and greater
burden. As stated by other authors [40–42] the feelings of
guilt reported by adult child caregivers, which also have
negative repercussions for patients, could be associated
with the difficulties that caregivers face in providing the
best possible care for their parents or the emotional dis-
tance they feel with respect to them.
An interesting finding of the present study, not previ-
ously reported in the literature, is that a higher educa-
tional level among caregivers was associated with a more
positive perception of QoL-p in both patients and care-
givers. Such education may help caregivers to understand
the illness better, and perhaps enables them to make
greater use of appropriate resources.
Gender and Family Relationship of Caregivers
The differences between spouses and adult children
were also found when analyzing the subgroups of care-
givers and patients. Both wife and husband caregivers
had a more positive perception of QoL-p than son and
daughter caregivers, the same was true for the respective
patients. Sons and daughters not only had a more nega-
tive perception of QoL-p, but also reported greater bur-
den and worse mental health. Mental health and burden
were especially related to a more negative perception of
QoL-p among daughter caregivers, and this could influ-
ence the more negative perception of QoL-p held by the
corresponding subgroup of patients. Daughter caregiv-
ers, who may find it more difficult to combine their fam-
ily responsibilities with caring for their parent, would
tend to internalize their psychological distress more. The
greater burden experienced by daughter caregivers has
been previously reported [43] .
These findings could be generalizable as the overall
caregiver data in terms of the percentages for gender and
family relationship were very similar to the results of the
studies conducted by Alzheimer Europe [44] .
Clinical Implications
Focusing therapeutic interventions and service provi-
sion on adult child caregivers would help to minimize the
difficulties they face in terms of combining the tasks of
caring with other obligations, thereby reducing the bur-
den they experience and improving their mental health.
These 2 variables, greater burden and worse mental
health, are the key factors that need to be addressed in
order to improve perceived QoL. Indeed, improving the
caregiver’s QoL would enable him or her to take a more
positive view of the patient’s QoL, which in turn may in-
directly improve the patient’s own perception in this re-
gard. As such, therapeutic interventions, whether indi-
vidual or group based, should take into account the dif-
ferent nature of these spouse and adult child relationships
with the patient in order to address more specifically the
main factors associated with each.
To conclude, the high correlation between caregiver
and patient perceptions of the latter’s QoL suggests that
improving the perceptions of caregivers could lead to a
concomitant improvement in the perceptions of patients
themselves.
Limitations
The present study was conducted with a relatively
large sample and numerous sociodemographic and clini-
cal variables were analyzed and compared; thus, provid-
ing a robust set of results. However, it would be useful to
carry out a longitudinal study of AD patients with a high-
er level of deterioration. Research of this kind would en-
able caregiver perceptions to be monitored over time,
particularly at the point when greater outside resources
become more necessary. One would expect the percep-
tions of spouse and adult child caregivers to evolve differ-
ently over time, as is the case with caregiver burden.
