Neuropsychiatric symptoms of the elderly with Alzheimer's disease and the family caregivers' distress

ABSTRACT Objective: to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with Alzheimer's disease or mixed dementia. Method: a descriptive, cross-sectional study conducted in the Geriatric and Dementias Clinic of a general tertiary hospital, with 96 elderly people with Alzheimer's disease or mixed dementia and their family caregivers. Questionnaires to characterize the elderly and caregivers, and the Neuropsychiatric Inventory were used. Descriptive statistics and Pearson correlation test were performed. Results: 68.7% of the elderly were women, average age 80.8 years, 56.2% had Alzheimer's disease and 43.7%, mixed dementia. Among caregivers, 90.6% were women, average age 56, 70.8% took care of parents and 64.6% lived with the elderly. There was a strong (r = 0.82) and significant (p <0.01) correlation between the total score on the Neuropsychiatric Inventory and the total score on the Neuropsychiatric Inventory-Distress and strong (r = 0.80) and significant (p <0 01) correlation between the total score on the Neuropsychiatric Inventory Distress and the number of neuropsychiatric symptoms, i.e., the higher the number, frequency and severity of these symptoms in the elderly, the more intense is the caregiver distress. Conclusion: the presence of neuropsychiatric symptoms in the elderly was related to increased distress in caregivers.


Considering this background the question is:
what is the relationship between the presence of neuropsychiatric symptoms in AD and MD patients, treated at a Clinic of Geriatrics and Dementias, and the distress of the family caregiver? Thus, from the knowledge of the relationship between the presence of neuropsychiatric symptoms in AD patients and DM and the family caregiver distress, this paper can contribute to the health professionals who work at the clinic, especially nurses, to target care planning with focus on management of behavioral changes of the elderly, in order to minimize the distress of the caregiver. Given the above, the objective of this study was to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with a diagnosis of AD or DM.

Methods
Descriptive study with cross-sectional design. Inclusion criteria: a) old age-having 60 years or more, male or female, with a diagnosis of AD or MD in attendance at the clinic and being cared for by a family member; b) caregiver -be the caregiver of an elderly, with AD or MD in attendance in the aforementioned outpatient center and needing home care, male or female and over 18 years. Exclusion criteria: a) institutionalized elderlies; b) caregiver -being a formal caregiver.  (9) . The scores for the severity of the behavior ranged from 1 to 3, with 1 being slight (behavior is present and causes the patient little discomfort); 2 moderate (more uncomfortable for the patient, but it can be circumvented by the caregiver) and 3 high (behavior is very stressful for the patient and can not be circumvented by the caregiver) and regarding frequency they ranged from 1 to 4, being 1 incidental (less than once per week); 2 common (about once per week); 3 frequent (several times per week, but less than every day) and 4 very frequent (once a day or more). The total score ranges from 0 to 144 points.
To assess the emotional and psychological stress of the caregiver, caused by the presence of neuropsychiatric symptoms assessed by the NPI, it has been developed an auxiliary scale (10) , the Neuropsychiatric Inventory Distress (NPI-D). The total score ranges from 0 to 60 points. In Brazil, the NPI and the NPI-D were culturally adapted and validated (9) .
Interviews were conducted on the days and hours All statistical analyzes were performed using the statistical software SAS ® 9.0 and R version 3.0.1.
To verify the correlation between the total score of the NPI and the total score NPI-D and the correlation between the total score NPI-D and the number of neuropsychiatric symptoms, we used the Pearson correlation coefficient, noted as r. The maximum possible value of r is 1, and its minimum value is -1, so -1 ≤ r ≤ 1. In this study, the values adopted for r were: r = -1.0 (perfect negative correlation); r = -0.8 (strong negative correlation); r = -0.5 (negative moderate correlation); r = -0.2 (weak negative correlation); r = 0.0 (No correlation); r = +0.2 (weak positive correlation); r = +0.5 (moderate positive correlation); r = +0.8 (strong positive correlation) and r = +1.0 (perfect positive correlation) (11) . The significance level for the statistical tests was 5% (p <0.05). The distribution of occurrence and seriousness of neuropsychiatric symptoms in the elderlies with AD or MD can be seen in Figure 1. The frequency of neuropsychiatric symptoms in AD patients or DM can be seen in Figure 2.

Discussion
Neuropsychiatric symptoms are common in dementia and are a source of burden on the family in elderly care (7) . And the higher the number, frequency and severity of these symptoms in the elderlies, the larger is the caregiver distress.
The analysis of the relationship between the family caregiver distress and the presence of neuropsychiatric symptoms in elderly patients with dementia is relevant given the current epidemiological profile. Worldwide, the prevalence rates of dementia, especially AD, are increasing rapidly, being higher in the Americas compared to less developed regions rates, as in Africa (1) .
In this study, the strong and significant correlation between the total score NPI-D and the number of neuropsychiatric symptoms, shows that the number very common symptoms by family caregivers of elderly patients with AD or DM. In this study it was observed that the total score of the NPI and the total score NPI-D are strongly correlated (r = 0,82), i.e., the higher the frequency and severity of neuropsychiatric symptoms interferes with the caregiver distress. It is understood that the caregiver who cares for an senior person that has more than one neuropsychiatric symptom present increased distress, as this elderly may require more care.
Throughout the evolution of dementia, seniors may have different clinical manifestations such as changes in emotions, mood, perception, thinking, motor activity and personality. These changes result in a high level of distress for the elderlies and their caregivers, as well as increased use of health services (12) .
Regarding the presence of neuropsychiatric symptoms presented by the elderly with Alzheimer's disease or MD, apathy/indifference was the symptom mainly referred by their family caregivers, finding similar to other studies (9,13) . Apathy is characterized by indifference and inactivity, which can lead to the distress of the caregiver, because of the sense of frustration on the limitations that the elderly with apathy can present (13) .
The presence of different neuropsychiatric symptoms in elderly people carry different distress patterns in caregivers (13) . The aberrant motor behavior and nocturnal behavior, for example, are highly stressful because they require higher physical demands of the caregiver. Delusions of theft and identification cause greater psychological stress for the caregiver due to the disability of the elderlies in identifying them (13) .
Importantly, the presence of neuropsychiatric symptoms in the elderly is related to the higher degree of cognitive impairment and advancing dementia, reducing the quality of life of the elderly and raising the stress of the caregiver (14) .
The caregivers indicated that the aberrant motor behavior as a very common symptom. This finding corroborates another study (15) . This symptom is characterized by increased psychomotor activity, iterative and frequently without purpose (12) . It is noteworthy that, in addition to the caregiver having to live daily with the elder, performing care activities, the increased frequency of neuropsychiatric symptoms in the elderly requires constant supervision, increasing the physical and emotional stress of the caregiver.
Regarding the severity of the symptoms, there was a predominance of the moderate group, that is, the symptoms cause more discomfort to the patient, but can be overcome by the caregiver. This data shows that for the caregivers in this study, neuropsychiatric symptoms can interfere with the welfare of the elderly.
This data also reveals that the studied family caregivers are able to deal with seniors who have neuropsychiatric symptoms.
As for the caregiver distress related to the presence of neuropsychiatric symptoms in the elderly, the nocturnal behavior was appointed as a high-wearing symptom for the caregivers. Different from other studies (13,(15)(16) that revealed delirium, apathy and agitation respectively as the main distressing symptoms for caregivers.
The strong and significant correlation between the total score of the NPI and the total score NPI-D is in concordance with other studies (13,16) . As already mentioned, the frequency of neuropsychiatric symptoms in the elderly may interfere with the caregiver distress, showing that the increased frequency of neuropsychiatric symptoms will require constant supervision to the elderly, which in turn may increase the physical and emotional stress of the caregiver.  (13 ) .

Conclusion
In this study, we observed a strong correlation between the frequency and severity of neuropsychiatric symptoms and caregiver distress, as well as between the number of these symptoms and caregiver distress.
These data reinforce the notion that the presence of neuropsychiatric symptoms in the elderly was related to increased distress on the caregiver.
Regarding the limitations of this study, it is