An evaluation of the burden of Alzheimer patients on family caregivers Avaliação do impacto no cuidador familiar do doente de Alzheimer

Caregivers are indispensable to persons living with Alzheimer’s disease; however, such care involves hard work, and the consequences of this activity on caregivers are often neglected. The objective of this study was to construct a profile for caregivers of Alzheimer patients and to evaluate the burden such care imposes on them. It is a transversal study of 122 caregivers from the metropolitan region of Londrina, Paraná State, Brazil. Socio-demographic data for the caregivers were analyzed, while the Katz scale and Lawton index were used to evaluate the functionality of Alzheimer’s patients, and the Burden Interview Scale assessed the burden these patients impose on caregivers. Caregivers are predominantly married, are daughters who have learned to care for the patient on a daily basis, usually with some help, and they do so out of love. The caregiver’s age (p < 0.01), whether or not the caregiver had help (p < 0.01), and the number of hours caring for the patient (p = 0.01) were associated with the impact. Results showed that the burden imposed on caregivers by Alzheimer patients is a heavy one. Caregivers; Alzheimer Disease; Home Nursing Introduction Research has shown that caring for a patient with mental problems is a lonely and exhausting task 1,2,3. The redefinition of family roles added to a caregiver’s other activities outside the home can lead to emotional, social and financial problems and many diseases. These may get worse if the caregiver is unprepared or as the patient’s condition deteriorates, thus imposing a burden 4,5,6,7. Alzheimer’s disease is the most common type of mental illness. It progressively disables individuals, affecting their memory, behavior, relationships, language and other functional activities; demanding the constant presence of a caregiver 8. In developed countries, caregivers are extremely important, and public and private networks have been created to help to keep the aging person around his or her family 1,9. In Brazil, the responsibility lies exclusively with the patient’s family which cannot count on effective public support, while private sector support is expensive and available to very few 9,10. Brazilian studies of the burden that Alzheimer disease patients place on caregivers have mostly been carried out in the Southeast region of the country, and they point out co-residence, time spent caring for the patient, and type of relationship with the patient as important factors associated with the burden 6,11,12. However, such studies deal with mental diseases from different etiologies, with a small number of samples. ARTIGO ARTICLE Moares SRP, Silva LST 1808 Cad. Saúde Pública, Rio de Janeiro, 25(8):1807-1815, ago, 2009 The sample size of this study is larger than any other reported in Brazil for this specific type of mental condition. To evaluate the burden that this type of care poses, very few published instruments have been adapted to the reality of Brazil 13. Therefore, this study opted for the Burden Interview Scale 14. The objective of this study was to construct a profile of the family caregiver and to evaluate the burden this activity imposes on his or her personal life, using the Burden Interview Scale.