Avaliação do impacto no cuidador familiar do doente de Alzheimer
Sandra Renata Pinatti de Moraes; Luis Sidônio Teixeira da Silva
Hospital de Clínicas, Universidade Estadual de Londrina, Londrina, Brasil
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
O cuidador é indispensável ao paciente com doença de Alzheimer, no entanto cuidar é uma tarefa árdua, e as conseqüências dessa atividade em quem cuida são negligenciadas. Estudo transversal realizado na região metropolitana do Município de Londrina, Paraná, Brasil, tem por objetivo caracterizar o perfil e avaliar o impacto da ação sobre 122 cuidadores principais de pacientes com doença de Alzheimer. A escala de Katz e o índice de Lawton foram utilizadas para avaliar a funcionalidade dos pacientes com doença de Alzheimer, e a Burden Interview Scale, para avaliar o impacto no cuidador. Caracterizaram-se seus dados sócio-demográficos. Os cuidadores foram predominantemente filhas, casadas, que aprenderam o cuidado no dia-a-dia, contavam com auxílio e exerciam a função por afeto. Associaram-se ao impacto de forma independente: idade do cuidador (p < 0,01), contar com auxílio (p < 0,01) e número de horas de cuidado (p = 0,01). Os cuidadores estudados apresentaram impacto elevado.
Cuidadores; Doença de Alzheimer; Assistência Domiciliar
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.
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.
A transversal observational study was carried out at the Mental Health Outpatient Clinic (AHC-UEL) of the Londrina State University, Paraná State, Brazil, having been approved by the Research on Human Beings Ethics Committee from the same institution, under reference 066/06.
A list of all patients seen by the clinic from January 2005 to December 2006 (total 330) was provided by the Medical Archives and Statistics Sector of the AHC-UEL. All patients' records were evaluated, and 196 of 330 showed a probable clinical diagnosis for Alzheimer's disease, according to the criteria of the National Institute for Communicative Disorders and Stroke and the Alzheimer's Disease and Related Disorders Association (NINCDS-ADRDA) 15. The search for caregivers was done by phone and/or mail. Family caregivers were characterized as individuals with greater or total responsibility for supervision and care, and for all activities involving the Alzheimer disease patient 16.
Family caregivers of both sexes participated in the study, whether they were living with the patient or not, and were required to be over 16 years of age. Caregivers who were excluded included those of deceased patients (n = 16), those who lived outside the Londrina metropolitan area (n = 16), where they reported that the patient had been institutionalized (n = 4), as well as professional and non-professional paid caretakers (n = 16). In addition, caregivers that were not registered with the phone company, and those who never returned the contact, which was made twice (n = 13), were also excluded.
All in-house interviews were carried out between June 2006 and May 2007, by the researcher, during pre-arranged days and times, when the signature of the free and informed terms of consent was obtained. Socio-demographic data showed how caregivers evaluated the functionality of the patients according to the Daily Life Activities Scale 17 and the Daily Life Instrumental Activities Scale 18, adapted by Scazufca and published by Almeida 19. Patients who did not need any help were classified as independent whereas those who needed supervision and help to carry out their daily activities were classified as partially dependent. Dependent patients were those classified as totally dependent on a caregiver for performing basic functional needs.
To evaluate the adverse effects of this type of care on the physical, emotional, social and financial life of caregivers, this study used the Burden Interview Scale translated into Portuguese and adapted to the reality of Brazil by Scazufca 14. The scale is easy to apply and contains 22 questions with five possible answers ranging from "never" to "always". Possible answers were printed on two cards: one numbered from 0 to 4, to be used with illiterate caregivers, and; another for literate caregivers, showing the graded answers. Global scores were obtained by the sum of all answers, varying from 0 to 88, so that the higher the score, the greater the burden imposed on the caregiver. All caregivers were instructed to estimate the frequency of the problems occurred during the last month.
Although the scale includes self-explanatory statements, the interviewer read the questions and filled out the questionnaire according to the options selected by the interviewees. Examples taken from the caregivers' experience with the patients were used for clarification in case of doubts regarding any of the questions.
Data were fed into the Epi Info program for Windows 2005 (Centers for Disease Control and Prevention, Atlanta, USA). Discrete variables were given as frequency percentiles and continuous variables as means and standard deviations. The Kolmogorov-Smirnov test verified the presence of a Gaussian distribution in the continuous variables. Student's t tests and the analysis of variance (ANOVA) were used to compare means. Later, data were transferred to the SPSS program version 13.0 (SPSS Inc., Chicago, USA) and a multivariate analysis by the stepwise method was conducted to identify independent variables. The Burden Interview Scale score was used as a dependent variable during the multivariate analysis. In the beginning, the variables selected to be included in the model were those that, during the univariate analysis, showed a p > 0.10 level of association with the dependent variable. All tests were carried out at the 5% level of significance.
Of the 131 eligible caregivers, nine refused to participate in the study, limiting the sample size to 122 caregivers. The socio-demographic characteristics of the family caregivers are shown in Table 1.
The burden on the caregiver was evaluated using the Burden Interview Scale. Total mean was 37.3 ± 13.08 points. The lowest score was 10 and the highest was 66 points. Answers to the Burden Interview Scale questions are presented in Table 2. The highest levels of burden were observed in women under 60 years of age, with high school and college degrees, who learned to care for the patient on a daily basis, did not get any extra help, and who cared for the patient for more than 10 hours per week (Table 1). A major burden was also observed among caregivers of patients who were dependent on them to carry out instrumental activities such as using the phone (p < 0.01), leaving the house (p = 0.01) going shopping (p = 0.03) and doing chores around the house (p = 0.04) (Table 3). Similarly, a greater burden was verified among caregivers whose patients were dependent on them for basic needs such as bathing (p < 0.01) and getting dressed (p = 0.03) (Table 4).
Variables such as caregiver sex, age, educational level, income level, professional level, as well as type of help (if any), period during which the caregiver cared for the patient, and number of hours spent caring for the patient were included in the mutivariate analysis. Analysis by the stepwise method highlighted the following as significant and independent variables, using an r2 = 0.31, p < 0.01 model: caregiver age (p < 0.01), the presence of extra help (p < 0.01) and number of care hours (p = 0.01).
This study is pioneering in its attempts to construct a profile and to evaluate the burden that Alzheimer disease patients impose on caregivers. It uses patients from AHC-UEL and an expressive sample of 122 caregivers, a number higher than any other found in studies published in Brazil 3,6. There is no universal benchmark established which allows for the classification of burden measured by the Burden Interview Scale as low or high; however, by comparing the burden index found in this study with other Brazilian studies, we observed that the scores were similar to those found for Porto Alegre, Rio Grande do Sul State 3 and higher than those found for the city of São Paulo 6,11,12. Compared to international studies, the burden described in this study is greater than those reported in China and India, showing that in cultures where people are devoted to their elderly people and see caring for them as a family (children or spouse) obligation, caregivers have difficulty admitting any suffering, a characteristic that was more readily apparent among Latin caregivers 2,7,10.
Some characteristics of caregivers found in this study such as female, age below 60, and being the patient's relative were the variables most commonly found in many international studies 1,13,16. For cultural reasons, societies pass on to women the caregiver role, and single daughters are more predisposed to care for the patient due to their emotional and/or financial dependence, for co-residing with the patient and for not yet having started their own family 7,16,20. However, due to financial needs and the search for equal rights between the sexes, this paradigm is shifting and women are participating in the job market, accumulating skills. Consequently, they are subject to emotional, physical and social problems which can intensify the burden score 21. Results have also shown that female caregivers are subject to a greater burden than their male counterparts 6,22. Although, males also act as caregivers, the care they provide to Alzheimer's disease patients is limited to their instrumental needs 6,10,16,22. Data from this research was insufficient to evaluate the burden on this subgroup due to the small sample size.
Some methodological limitations such as the use of a convenience sample made up of caregivers of patients from a tertiary service do not allow generalizations to other types of chronic-degenerative diseases. Other possible interferences came from estimating the patient's functional and cognitive needs based only on the caregiver's point of view and from adopting instruments developed originally to be self-applicable but which, in this study, were conducted by the interviewer. The instrument stresses subjective data which can be underestimated or overestimated in different populations, thus jeopardizing any comparison among published studies. In addition, patients were not categorized according to their Alzheimer disease stage, and the difference of the burden on caregivers in different phases of the patients' disease were not evaluated. The non-categorization of the deficit levels of patients with Alzheimer disease also makes comparison among studies difficult 3,6,11, since it is not clear whether caregivers were involved with patients with similar levels of the disease.
The incomes of elderly person and of the caregiver were not considered important factors in this study; however, Printz-Feddersen 23 believes that this variable affects burden, since a higher income could provide the caregiver with additional help to ease his or her burden. An outside job to complement family income prevents the social isolation of the caregiver but reduces the time spent with the patient as the disease intensifies and his dependence on the caregiver increases. This task is usually taken over by other family members and indirectly by maids. A study of Brazilian and Japanese family caregivers in the Southeast region of Brazil showed that the help of maids is effective and gives the caregiver more time for his or her other family businesses, spending more time with their family and on personal and professional activities 10.
In this study, the level of education of the interviewees was up to 8 years, a finding similar to those reported by other national publications 3,6,11. However, higher levels of education had a significant positive impact on the caregiver. Other studies do not show this association, probably due to the lack of standardized data collection instruments and categorization of analyzed variables, which could have prevented comparison between studies , thus making the generalization of findings difficult 6,12,13.
Affection contributed the most to the exercise of caring analyzed in this study. According to the literature, the caregiver carries out his or her role out of love, gratitude, and marital or legal obligations 10,21. Among the "time spent with the patient" variables, only the "weekly assistance" affected burden, which was greater according to the number of hours spent caring for the patient, a finding corroborated by the literature 6,12. The influence of time on the caregiver's burden is controversial since this variable is seldom studied, and can be registered without the association of this variable with burden being evaluated 13. Garcia 24, studying family life and the Alzheimer disease patient, verified that a long period of caring for the patient can work as a protection against burden. Conversely, data from this research show the increasing dependence of the patient to be a strong source of burden on the caregiver, a finding that is supported by Garrido & Menezes 6.
As for the daily activities and the burden they impose on the caregiver, previous research findings are inconsistent 19,25,26. In this study, instrumental and basic daily activities which had a greater influence on burden were: using the telephone, locomotion, going shopping, carrying out household chores, bathing and getting dressed. The sample size may have been too small to detect the statistical significance of other variables.
Results showed that family caregivers are generally women, 29 to 88 years of age, with 8 years of schooling, who live with the patient and care for him/her with love. The burden that Alzheimer's disease patients place on family caregivers evaluated at AHC-UEL was great and independently associated with gender, the presence of extra help and the number of hours spent caring for the patient.
The provision of structured assistance to caregivers is still lacking in Brazil, and for this reason the attention given to family caregivers needs to be reevaluated by health officials. Support to caregivers through meetings, lectures and home visits with the help of a multiprofessional team will contribute to the planning and implementation of activities for the patient, encouraging caregivers to accept their limitations and to ask for help, promoting the sharing of experiences among them and mutual growth. These strategies can reinforce family and community bonds, reducing the great burden imposed on caregivers. Longitudinal research that investigates the relevance of the variables studied here will provide information on the caregiver burden in different regions around the country, on areas that need intervention and on the best strategy to be adopted, since the well being of the caregiver is essential for good quality care.
S. R. P. Moraes was responsible for the bibliographic review, data collection, data processing and revision, interpretation of results and the writing of the article. L. S. T. Silva helped with the selection of the instruments, methodology, development of the article and revision of the final draft.
To José Carlos Dalmas, PhD for his statistical contributions and Rose Meire de Albuquerque Pontes, PhD for her critical revision of the text.
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S. R. P. Moraes
Ambulatório de Demência, Hospital de Clínicas, Universidade Estadual de Londrina
Rua Caetano Vicentini 100, Londrina, PR
Submitted on 12/Aug/2008
Final version resubmitted on 08/Jan/2009
Approved on 13/Feb/2009