Keywords:
aged - caregivers - dementia - knowledge
Palavras-chave:
idoso - cuidadores - demência - conhecimento
Population aging is associated with an increase in the prevalence of dementia, the rate of which doubles every five years from the age of 60[1]. The prevalence of dementia in Latin America is 7.1%, similar to that found in many other studies worldwide[2],[3].
Dementia is associated with functional dependency. The symptoms of dementia affect the quality of life of both patients and their caregivers[4],[5].
Lack of knowledge about dementia is associated with unnecessary and stressful interventions such as catheter feeding, hospital and emergency room transfers, and intravenous treatment, especially at advanced stages of the disease[6].
There are instruments available to evaluate knowledge and attitudes towards dementia among health professionals, mainly doctors and nurses. However, such instruments for caregivers are scarce[7].
Toye et al.[7], from 2006 to 2008, developed the Dementia Knowledge Assessment Tool Version One (DKAT1), which measures knowledge about the trajectory of dementia and assesses changes in the knowledge of participants before and after educational programs. It was first developed for formal caregivers (meaning people employed to provide care) and, after testing, it was improved for use in both formal and informal caregivers. In 2009, the second version (DKAT2) was developed by the same authors.
The DKAT2 has 21 statements addressing several areas of dementia knowledge, encompassing features of Alzheimer's disease and vascular dementia, behavioral, emotional, physiological, functional and sensory symptoms of dementias, as well as symptoms that are not necessarily associated with dementias. There are three possible answers for each statement: “yes”, “no” and “don't know.” Answers are scored as 1 if correct and 0 if incorrect or “don't know”. The higher the final score, the higher the knowledge about dementia.
This study aimed to develop the Brazilian Portuguese version of the Dementia Knowledge Assessment Tool Version 2.
METHODS
The study was conducted between April 2016 and May 2017 at the Inpatient Geriatric Clinic of the Botucatu Medical School, São Paulo State University.
The Brazilian Portuguese version was developed as below:
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Authorization for the study given by the author of the instrument.
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Translation from English into Portuguese as spoken in Brazil by two individuals whose native language was Portuguese and who were fluent in English, where one of the translators was aware of the study.
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Consensus between the researcher (MP) and his advisor (AFJ) in order to obtain a version based on the translations carried out in item B.
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Back translation (Portuguese into English) of the version from item C by two individuals unaware of the study whose native language was English and who were fluent in Portuguese spoken in Brazil.
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Obtaining a final version of the two versions from item D.
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Analysis of the whole process (items A to E) and submission of the final version to the author of the instrument for its appraisal.
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Application of the final version to caregivers of the older people with dementia.
Thirty caregivers, to whom the Brazilian version of the DKAT2 was administered, were interviewed at the Geriatric Clinic of the Botucatu Medical School, São Paulo State University. For inclusion, caregivers had to have given care for at least one year on a regular basis. The caregivers were assessed before or after the medical appointment of the elderly person with dementia. The patient's diagnosis of dementia was confirmed by the researcher through checking of the medical registration. None of the caregivers refused to participate in the study.
For the evaluation of the caregivers, the following instruments were administered: sociodemographic questionnaire, the DKAT2[8], Functional Activities Questionnaire (to evaluate the elderly patient's instrumental activities of daily living)[9], Katz Index (to evaluate the patient's basic activities of daily living)[10], Zarit Burden Interview (to evaluate caregiver's burden)[11] and the Patient Health Questionnaire-2 (to screen the caregiver for depression)[12].
All caregivers signed the informed consent form before the interview. The study was approved by the Ethics Committee of the Botucatu Medical School, São Paulo State University (number: 50028115.6.0000.5411).
The categorical variables were expressed as raw numbers and percentile values. Continuous variables, according to their normal distribution or otherwise, were expressed as measures of central tendency: means and standard deviations or medians and interquartile ranges[13].
The relation among DKAT2 scores and the other variables was explored spatially by multiple correspondence analysis, where the association of categories is represented as a spatial proximity[14].
RESULTS
[Figure 1] shows the original Australian version of the DKAT2[7].
Figure 1 Original Australian version of the DKAT2.[7]
[Figure 2] shows the Brazilian version of the DKAT2.
Figure 2 Brazilian version of the DKAT2.
Thirty caregivers with a mean age of 55.7 (± 12.5) years were interviewed. The mean number of correct answers on the DKAT2 was 15 (± 2.5) and the mean caring time was 4.7 (± 3.3) years; 93.3% were female, 56.7% were sons/daughters, 70% showed some degree of burden and 23.3% screened positively for depression.
Regarding the older adults assessed, the mean age was 82.4 (± 6.7) years, 19 (63.3%) had a diagnosis of Alzheimer's disease, five (16.7%) vascular dementia and six (20%) other types of dementia. The mean Functional Activities Questionnaire score was 22.3 (± 7.7), indicating that 100% of the older adults were dependent for instrumental activities of daily living and 70% had some degree of dependence for basic activities of daily living according to the Katz Index.
The questionnaire was considered easy to fill in, as all participants completed it in less than 10 minutes.
[Figure 3] shows the perceptual map from multiple correspondence analyses, accounting for about 30% of overall variance of the model. The DKAT2 scores were categorized in three levels (11-13; 14-16; 17-20). Especially, higher DKAT2 scores were in proximity to being diagnosed with Alzheimer's disease, higher Katz Index scores and lower PHQ-2 scores. Lower DKAT2 scores were in proximity to higher Zarit Burden Interview scores and lower Functional Activities Questionnaire (Pfeffer) scores.
Figure 3 Perceptual map from multiple correspondence analyses
DISCUSSION
The cross-cultural adaptation process of the DKAT2 to Brazilian Portuguese revealed some particular adaptations during translation and back translation phases of the instrument, although no substantial differences in the essential meaning were observed.
The present study showed that 93.3% of the caregivers were female, 56.7% were daughters or sons, and 23.3% spouses of the older adults with dementia, a finding in line with other studies[15],[16],[17].
Previous studies involving caregivers of patients with dementia or mental disorders have found that the mean age of caregivers was 56 years, similar to that found in the present study [6],[11],[18].
Regarding the emotional state of the caregivers interviewed, 70% showed some level of burden. Previous studies[4],[17] have found that older people's dependence for activities of daily living affects caregivers’ quality of life and, when the caregiver does not know how to deal with the tasks of caring, the stress and burden generated by it can affect their physical and emotional health.
The mean age of the older adults with dementia in the present study was 82.4 years, which is in accordance with the projections of the Brazilian Institute of Geography and Statistics[19].
In this study, dementia due to Alzheimer's disease was the most prevalent type (63.3%), confirming the information previously stated on the most common cause of dementia[1]; all of the older adults with dementia were dependent for instrumental activities of daily living and 70% had some degree of dependence for basic activities of daily living. These data confirm the progressive impairment of the individual's functional abilities caused by dementia[17].
On the multivariable analysis, caregivers’ lower depression scores were related to higher knowledge scores, which leads to the hypothesis that efforts in the promotion of mental health can result in better performance of care.
Lower knowledge scores were related to the older person having been diagnosed with non-Alzheimer's disease. This finding can be explained by the fact that the media content on dementia is more often associated with Alzheimer's disease.
A validation study of this construct is warranted.
