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Caregiver strain in Parkinson's disease and the impact of disease duration.
Lökk J.
Institution of Neurobiology, Caring Sciences Society Karolinska Institutet, 
Stockholm, Sweden [log in to unmask]
AIM: The task of managing care for patients with Parkinson's disease (PD) 
often falls upon a family member taking on the role as a caregiver (CG) 
implying a burden on these CGs. The aim of this study was to evaluate CG 
strain of PD patients with regarding different psychosocial domains and the 
influence of PD/CG duration of PD. METHODS: A cross-sectional telephone 
interview survey of 451 CGs randomly selected from the registry of the 
Swedish Parkinson's Disease Association. A structured questionnaire covering 
sociodemographic, psychosocial, and general CG factors, sleep and depression 
of the CG as well as issues of the patient's disease was used by 4 
independent interviewers blinded to the study objective. RESULTS: Four 
hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years 
with 62% females. The results were stratified in 3 groups with regard to 
disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. 
General health condition of the CGs was regarded satisfactory independent of 
disease duration. Insufficient sleep and disease related stress were 
considered to be prominent in 36% and 61%, respectively, being significantly 
more prominent in the group with the longest disease duration. Decreased 
mood was reported in 31% with no difference between groups. More than 30% of 
CGs also experienced daily problems with tiredness and sleep disturbance; 
27% hypertension; 17% muscle strain, headache and fatigue; and 14% 
gastro-intestinal problems most items regardless of disease duration. The 
most troublesome symptoms of the patients to the CGs were reported to be the 
motor dysfunction (58%). More than half experienced little or no 
understanding of their situation. CONCLUSION: CGs are afflicted with strain 
and burden in many psychosocial and somatic domains despite satisfactory 
general wellbeing independent of disease duration. The longer disease 
duration, and, accordingly CG duration, the more impact on certain domains 
of CG burden, however, with little understanding of their situation. These 
findings should be given greater consideration when organizing and planning 
for PD care in the health care system and the community.

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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