ABSTRACT
To investigate subjective and objective changes in function in subjects with Parkinson's disease (PD) home visits with interviews were performed with a 1-year interval. Depressive symptoms were rated with the Geriatric Depression Scale, subjective health with the generic SF-36 scale and the disease-specific PDQ-8 scale; objective changes were assessed according to the Hoehn and Yahr scale; insomnia was rated with an eight-item questionnaire and the sense of coherence (SOC) was determined with the short version of that scale. A total of 91 subjects (39 women and 52 men with a mean age of 70 years) living at home, most of them moderately to severely disabled, were interviewed. Time since diagnosis was <2 years for 13%, 2-10 years for 55%, and >10 years for 32%. During the studied year the subjects' status declined significantly as shown by changes in both the PDQ-8 and the Hoehn and Yahr scales. The most striking finding was a pronounced decrease in the SOC scale (p < 0.0001). This indicates that the subjects' ability to handle stress-related problems secondary to the progress of disease might have decreased. In order to optimize nursing care for subjects with PD, in addition to medical treatment, an assessment of the SOC could aid nursing staff in evaluating subjects' ability to handle their life situation.
Subject(s)
Activities of Daily Living , Adaptation, Psychological , Attitude to Health , Health Status , Parkinson Disease , Surveys and Questionnaires/standards , Aged , Aged, 80 and over , Chronic Disease , Disease Progression , Female , Geriatric Assessment , Humans , Internal-External Control , Male , Middle Aged , Nursing Assessment , Parkinson Disease/complications , Parkinson Disease/physiopathology , Parkinson Disease/psychology , Self Efficacy , Sensitivity and Specificity , Severity of Illness Index , Sleep Initiation and Maintenance Disorders/etiology , SwedenABSTRACT
BACKGROUND: Approximately 1% of the population over 65 years of age is afflicted with Parkinson's disease (PD). The number of patients with the disease will most probably increase in the future because of the increased longevity of the population. There is no curative therapy for the disease. AIM: To explore women's experiences of living with symptoms related to PD, and to analyse how the symptoms influence their quality of life. METHODS: A phenomenological-hermeneutic method, inspired by the philosophy of Ricoeur was used. The study focuses on eight women between 63 and 80 years of age who have been diagnosed with PD for 5-15 years. The women all lived at home, were moderately to severely disabled and cognitively intact. FINDINGS: In the analysis, four themes emerged: (1) wish for a stable body image; (2) wish to keep traditional female competence; (3) need to feel accepted for the person she is; and (4) perceived stigmatization. All themes showed that trying to adapt to unpredictable fluctuations in physical and psychosocial competence has a great impact on the females' lives. It became clear that fluctuations in competence and not knowing when to expect impaired mobility are connected with frustration and social withdrawal. CONCLUSION: The experience of PD from eight disabled female patients has revealed that the disease affects quality of life not only for the person who has it, but also for her family. Thus, it is equally urgent that patients, relatives, nurses and caregivers gain better knowledge and more understanding of PD, so as to ease the impact of the disease on the patient's daily life.
Subject(s)
Parkinson Disease , Quality of Life , Activities of Daily Living , Aged , Aged, 80 and over , Body Image , Female , Humans , Middle Aged , Parkinson Disease/psychology , Prejudice , Social Adjustment , SwedenABSTRACT
BACKGROUND AND AIMS: Caregivers of Parkinson's disease patients are vulnerable to detrimental factors related to caregiving because of the progressive course of the disease. Studies of caregivers of these patients are scarce. The aim of this study was to examine the caregiver burden in Parkinson's disease by analyzing caregiver and patient-related factors. METHODS: Every 3rd patient with Parkinson's disease registered at the outpatient clinic of the Neurology Department was invited to participate. One year after the first investigation, a follow-up was performed with a study of caregiver burden. A total of 65 caregivers took part. In-home interviews with patients and caregivers were performed. ASSESSMENTS: a) caregiver burden, 22 items, comprising five indices: general strain, isolation, disappointment, emotional involvement, and environment; b) sense of coherence, 13 items, with the components comprehensibility, manageability and meaningfulness; c) depressive symptoms, using the Geriatric Depression Scale, 15 items; d) social contacts, 6 items; e) patient subjective health, assessed with the Parkinson's disease questionnaire, 39 items; and f) patient functional status. RESULTS: Bivariate analyses showed significant correlations between caregiver burden and sense of coherence in caregivers, patient functional status, depressive symptoms in caregiver and patient, patient subjective health and time since diagnosis. Multivariate analysis showed depressive symptoms and sense of coherence in caregiver, and functional status in patient to be the most important variables for caregiver burden. CONCLUSIONS: To ease the caregiver burden, attention should be paid to patient functional status and caregivers depressive symptoms. The sense of coherence in caregivers is probably more difficult to influence.
