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Caregiving and Parkinson's Disease

Article  in  Neurological Sciences · November 2003

DOI: 10.1007/s10072-003-0131-1 · Source: PubMed

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Neurol Sci (2003) 24:203–204
DOI 10.1007/s10072-003-0131-1
Caregiving and Parkinson’s disease
C. Pasetti • S. Rossi Ferrario () • R. Fornara
D. Picco • C. Foglia • J. Galli
IRCCS “Fondazione Salvatore Maugeri”, Via per Revislate 13,
Veruno (NO), Italy
Abstract Relatively little has been published in the interna-
tional literature concerning the caregiving-related problems
associated with Parkinson’s disease. We therefore undertook
two exploratory studies that have allowed us to identify the
needs and specific problems perceived by such caregivers in
both qualitative and quantitative terms.
Introduction
Only a little more than 1% of the published papers concern-
ing Parkinson’s disease refer to caregiving-related problems.
These highlight the presence of tiredness, fatigue, and
depression associated with the more-advanced phases of the
disease [1–3], a qualitative worsening in conjugal relation-
ships [4], and financial problems [5].
The aim of this study was to explore the problems per-
ceived by the people looking after patients with Parkinson’s
disease regardless of the stage of the disease. Two samples
were recruited: the first consisted of 25 spouse-patient cou-
ples, and the second of 57 caregivers, mainly consisting of
the spouse/children of the patient.
Methods and results
The 25 couples underwent an individual, audiotaped semi-struc-
tured interview covering the following areas: the impact of the
diagnosis and reactions to the disease; disease-induced changes in
terms of work, everyday activities, and relationships with spouses,
children, and other people; economic problems; drug management;
and expectations. The 57 caregivers, mainly spouses (58%) and
children (36.8%), 35.7% of which were the only caregiver, were
administered questionnaires designed to assess emotional instabili-
ty (as a personality trait), emotional distress, problems related to
social involvement, the need to understand the disease, the quality
of family relationships, thoughts of death, and the degree of satis-
faction with their own lives [6, 7].
The results of the first study showed that the spouses and
patients have similar needs (summarized in Table 1).
The statistical significances emerging from the correlational
and comparative analyses in study 2 show that the need for more
information is mainly felt by the caregivers who perceive greater
emotional distress (p=0.05); positive family relationships correlate
with a general satisfaction with one’s own personal life (p=0.05)
and therefore with greater flexibility in adjusting to modified roles.
Table 1 Categorization of the needs of couples (study 1)a
A need to elaborate the disease cognitively and affetively
The need to be informed about the therapeutic and evolutionary
aspects of the disease, and a simultaneous tendency to “live day by
day” in order to adjust oneself gradually to the progression of the
disease and protect oneself against the fear of worsening
A need to play a role
The need to identify oneself and be identified as playing one’s
usual roles and the new roles related to the disease
A need to share and compare
The need to meet people facing the same type of situation
A need for support
The need for support expressed in socio-familial terms of feelings,
esteem, and approval
A need for spirituality
The need to trust in a dimension that transcends reality in order to
be able to accept and hope
aAfteran analysis of the concordance between two independent
observers
The subjects characterized by emotional instability perceive
more problems during the process of caregiving: they are more anx-
ious, more depressed, and have difficulties relating to social
involvement (p=0.01).
Thoughts of death may be experienced with simultaneous feel-
ings of fear and guilt. Female caregivers perceive a greater emo-
tional burden than their male counterparts (p=0.002); no differences
were found between the patients’ spouses and children.
Discussion
Although the results of these exploratory studies are limited
by the small size of the samples, they do make it possible to
draw some general conclusions. The patients with
Parkinson’s disease and their spouses have similar needs: in
particular, they would like to have an increasingly better
knowledge of the disease (in relation to the real clinical situ-
ation of the patients), and seek the recognition and confirma-
tion of their reciprocal roles. The use of validated question-
naires makes it possible to refine our knowledge perceived by
the needs perceived by caregivers, thus highlighting a target
population for more-economic socio-health interventions.
The differences found between male and female care-
givers, and the absence of differences between spouses and
children, must be considered with caution, because other
studies have shown that male caregivers are more fragile
over the long term and that caregiving spouses have more
psychosocial problems than caregiving children [8].
Further studies must certainly consider the stage of the
disease and identify more-precise relationships between the
disease stage and caregiving problems. However, when mak-
 204
ing the transfer, it is worth bearing in mind that the care-
givers who have more difficulties are not always those who
have to look after the most-impaired patients, and that socio-
psychological screening independent from, but integrated
with, a medical evaluation can improve the efficacy of inter-
ventions aimed at patients and their caregivers.
Acknowledgements The authors would like to thank Kevin Smart,
Link SrL, for his linguistic help in the preparation of the text.
References
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burden and sleep disturbances in partner of patients with
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