[Profile and burden of care in caregivers of patients with dementia included in the ALOIS program].

AIM

To study the profile and burden of care in carers of patients with dementia who participated in the ALOIS program. A second objective was to evaluate caregiver satisfaction with the intervention, and changes in caregiver burden after participation in the program.

DESIGN

Descriptive study of a specific intervention with no control group.

SETTING

Primary care centers.

PARTICIPANTS

Principal caregivers of patients with dementia.

INTERVENTIONS

Group education sessions led by multidisciplinary teams comprising physicians, nurses and social workers.

MEASURES

Caregiver profile; mean caregiver burden before and 3 months after the intervention (Caregiver Burden Interview, Zarit); caregivers' evaluation of the program.

RESULTS

Participants N=245. Profile (N=173): women (83%), mean age 54.6 years (range, 26-83 years), married (82.5%), no formal education or primary school only (70.2%), housewife (54.3%), patient's daughter (58.5%). More than 60% of the caregivers received informal help, and fewer than 5% received formal help. 72.5% of the caregivers were considered overburdened at the start of the intervention, and the burden was greater in older caregivers. No differences were detected in caregiver relation to the patient, marital status or employment status of the caregiver. Participants rated the program very highly, emphasizing the opportunity to share their experiences with other caregivers and to obtain knowledge and skills that helped them provide better care. Pre- and postintervention burden of care was compared in 68 participants (54.76+/-15.16 points vs 53.02+/-12.55), and no statistically significant difference was found.

CONCLUSIONS

The burden of care was high among caregivers, and increased as caregivers aged. Caregivers considered participation in the program to be highly useful. Care for caregivers should form part of care provided for patients with dementia.