Quality of life, time commitment and burden perceived by the principal informal caregiver of Alzheimer's patients

To evaluate the impact in Health Related Quality of Life (HRQoL), the time commitment and the burden perceived by the principal informal caregiver (PIC) of Alzheimer's patients (AP) in Spain, as well as the type and amount of external help received. Multicentric descriptive cross-sectional study. A randomised sample of 268 PIC were included from 19 Alzheimer's Patient Family Associations (APFA) randomly selected from all Spanish regions. Data were collected using a structured telephone interview with the CATI system. HRQoL was measured using the questionnaire EuroQoL-5D. Information was also collected on the health problems of the PIC, the burden perceived (using the specific Zarit scale), the time commitment of PICs (hours per day), type of activity, as well as the amount and type of external help received. The HRQoL of the PIC showed to be worse than the general population in the EQ-5D, except in the self-care dimension. A total of 84% of PIC had physical problems related to the care given to the AP and 94.4% had psychological problems. The Zarit scale showed that 46.5% of caregivers had a level of burden between severe and moderated, while in 34.7% was severe. Time commitment was more than 8 hours per day in 72.1% of them and more than 20 hours per day in 39.6%. Only 26.9% of the PIC received some sort of socio-sanitary help and 76.5% received help from the APFA. Caregivers of AP suffer a negative impact on their health state and HRQoL; the time they dedicate to the patient is very high.