The daily life of patients with dementia: A comparative study between the information provided by the caregiver and direct patient assessment

The functionality concept is very important, as the diagnosis of dementia presupposes the existence of functional impairment. Instruments assessing functional performance present some limitations. In most cases, the assessment is based on the caregiver’s report. Some studies in international literature have evaluated this issue and concluded that a difference exists between the caregiver’s report and direct patient assessment. American and European caregivers tend to underestimate the patient’s functional limitations. However, this issue has hitherto not been investigated in our context. OBJECTIVE: To compare the caregiver’s information with direct assessment of the patient’s performance based on the same functional assessment questionnaire. METHODS: Seventy-two patients and caregivers were attended by the Occupational Therapy service of the Behavioral Neurology Outpatient Clinic between 1999 and 2001, 25 of whom fulfilled the inclusion criteria: having a confirmed diagnosis of dementia according to the DSM-IV; having attended three or more return appointments, and where the caregiver belonged to the patient’s family nucleus. The remaining subjects were excluded because of non-adherence to treatment or refusal to participate in the study. The Functional Activities Questionnaire by Pfeffer et al., 1982 was applied to patients in a laboratory simulation, while another evaluator interviewed the respective caregivers. The data were analyzed based on the weighted Kappa coefficient, and Wilcoxon test. RESULTS: There were significative differences between caregiver’s answers and direct observation of the patient’s performance. The information provided by the caregivers proved unreliable since caregivers underestimated the patient’s functional capacity.