ABSTRACT
Background
Despite growing awareness of dementia care, few studies have consistently examined the stigma experienced by caregivers of people with dementia (PWD), which can negatively affect their mental health and caregiving quality.
Aim
The present study aimed to evaluate the extent of stigma and its correlates among the caregivers of the PWD.
Methods
This was a cross-sectional study with a purposive sampling technique conducted in a tertiary care treatment setting. The patient should be diagnosed with dementia as per the Diagnostic and Statistical Manual-5 with a minimum duration of 1 year. A caregiver involved in the primary care of a patient, who should be at least 18 years old, free from any diagnosed psychiatric morbidity, and able to read Hindi, Punjabi, or English, was included. Patients were assessed using the Neuropsychiatric Inventory Questionnaire, and their caregivers were assessed using the Caregiver of People with Mental Illness (CPMI), perceived criticism measure (PCM), Warwick–Edinburgh Mental Well-being Scale (WEMWBS) and General Health Questionnaire-12 (GHQ-12). Statistical Package of Social Science version 21.0 was used. Descriptive analysis was done to calculate frequency, percentage, mean and standard deviation. The t test, a Mann–Whitney test and a χ
2 were used for comparison. Correlations were evaluated using the Spearman/Pearson correlation analysis.
Results
A total of 100 caregivers of PWD were included with a mean age of 51.1 years (SD = 15.1), with a mean number of years of education of 5.1 years (SD = 1.9). The mean duration of caregiving was 3.6 years (SD = 2.9), with a mean duration of time spent in hours/day in caregiving was 9.9 (SD = 4.8). On the CPMI, the overall score was 49.5 (SD = 13.5). On the sub-domain of CPMI, the overall highest weighted score was on the affective domain (2.6; SD = 0.7), followed by the behavioural (2.1; SD = 0.7) and cognitive domain (2.0; SD = 0.67) of stigma. Higher severity of delusion, agitation/aggression, disinhibition, and higher levels of behavioural and psychological symptoms had a significant positive association with stigma. Apathy and aberrant motor behaviour had a significant positive association with the affective domain of CPMI. A significant negative association was found between stigma and the mental well-being of the caregivers. Stigma had a significant positive association with expressed emotions.
Conclusion
Stigma was associated with higher severity of expressed emotions and higher severity of behavioural and psychological symptoms like delusions, aggression, aberrant motor activity, etc. Hence, there is a need to adequately address the behavioural and psychological symptoms in dementia and caregiver issues to improve the psychosocial outcome of dementia.