Problematic areas of activities of daily living in patients with Huntington's disease. A view from the scope of occupational therapy
Abstract
Background: Patients with Huntington's disease have a variety of problems in performing activities of daily living (ADL) because of the incurable neurodegenerative disease. Progressive cognitive impairment (which includes mainly executive dysfunction, problems with attention, learning and memory) also has a negative impact on patients' everyday life.
This research explores subjective problematic areas in the performance of ADL from the perspective of patients and their caregivers or family members. Methods: Twenty-five patients (15 women, 10 men, average age 49, 6) and their caregivers met the selection criteria for the research.
During one meeting with a patient and caregiver, standardized test methods available in the Czech language were used: the Montreal Cognitive Assessment (MoCA), the semi-structured interview Canadian Occupational Performance Measure (COPM), and the questionnaire for caregivers called Bristol Activities of Daily Living Scale (BADLS-CZ). Results: The statistical analyses consisted of methods of the nonparametric statistics, qualitative analysis was processed by data categorizing.
A relatively high variability of responses was noted during interviews about problematic areas in ADL, both between patients and between patients and their caregivers, who reported twice as many problematic areas on average. It was proved that cognitive impairment correlates mostly in decreased performance in instrumental ADLs, patients and caregivers also mentioned more difficulties in this area of performance.
Conclusions: For various reasons, patients with Huntington's disease did not mention as many problematic areas in performing ADL as their caregivers. Therefore, it is appropriate in clinical practice and rehabilitation to supplement the assessment of the patient's performance of ADL by information from caregivers.
Compensatory strategies in everyday life could prevent problems in performing activities of daily living.