Health status of persons with dementia and caregivers' burden during the second wave of COVID-19 pandemic: an Indian study / Estado de saúde de pessoas com demência e sobrecarga dos cuidadores durante a 2ª onda da pandemia de covid-19: um estudo indiano

ABSTRACT. Due to the disruption of normal flow of treatment during the restrictions related to the coronavirus disease 2019 (COVID-19) pandemic, the health status of persons with dementia (PwD) and their caregivers' burden might worsen. Objective: The article aims to find out the health status of PwD and caregivers' burden during the peak of second wave of COVID-19 and make a comparison with the preceding trough phase. Methods: The study was conducted with 53 PwD and their caregivers in two phases. On their visit to the hospital during the unlock phase (phase 1), data were collected for CDR from PwD, and NPI-Q and ZBI from their caregivers. During the peak of second wave (phase 2), data were collected for NPI-Q, ZBI, and DASS-21 through telephonic communication, and statistical analyses were performed on the collected data. Results: Significantly higher caregiver burden (p=0.001) and neuropsychiatric symptoms (NPSs) [both in severity (p=0.019) and distress (p=0.013)] were observed among the respondents during the peak of second wave of the pandemic as compared to the preceding trough phase. Positive correlations were observed between the caregiver burden and depression, anxiety, and stress of the caregivers (p<0.001) and between the severity of dementia in PwD and caregiver burden (p<0.001) for both the first and second phases. Positive correlation was also observed between the severity of dementia in PwD and depression (p=0.042) and stress (p=0.023) of caregivers. Conclusions: Significant increase in the burden and distress was observed among caregivers due to increased NPSs of PwD during the second wave of COVID-19 pandemic.

RESUMO. Devido à interrupção do fluxo normal de tratamento durante as restrições relacionadas à pandemia de COVID-19, o estado de saúde das pessoas com demência (PcD) e a sobrecarga de seus cuidadores podem piorar. Objetivo: O artigo teve como objetivo conhecer o estado de saúde da PcD e a sobrecarga dos cuidadores durante o pico da 2ª onda de COVID-19 e fazer uma comparação com a fase anterior. Métodos: O estudo foi realizado com 53 PcD e seus cuidadores em duas fases. Em sua visita ao hospital durante a fase de desbloqueio (Fase 1), CDR, NPI-Q e ZBI foram administrados às PcD e seus cuidadores. Durante o pico da segunda onda (Fase 2), NPI-Q, ZBI e DASS-21 foram administrados por telefone e foram realizadas análises estatísticas dos dados coletados. Resultados: Foram observados sobrecarga do cuidador significativamente maior (p=0,001) e sintomas neuropsiquiátricos [tanto em gravidade (p=0,019) quanto angústia (p=0,013)] entre os entrevistados durante o pico da 2ª onda da pandemia em comparação com a fase anterior de passagem. Foram observadas correlações positivas entre sobrecarga do cuidador e depressão, ansiedade e estresse dos cuidadores (p<0,001) e entre gravidade da demência em PcD e sobrecarga do cuidador (p<0,001) tanto para a 1ª quanto para a 2ª fase. Também foi observada correlação positiva entre a gravidade da demência em PcD e depressão (p=0,042) e estresse (p=0,023) dos cuidadores. Conclusões: Foi observado um aumento significativo na sobrecarga e angústia entre os cuidadores devido ao aumento dos sintomas neuropsiquiátricos de PcD durante a 2ª onda da pandemia de COVID-19.

Genetic and Clinical Profile of Patients of Duchenne Muscular Dystrophy: Experience from a Tertiary Care Center in Eastern India.

Objectives: To study the genetic pattern, clinical profile and to find any correlation between them in patients of Duchenne muscular dystrophy. Methods: Patients were selected from Neurogenetic clinic on the basis of clinical features, elevated serum CPK level and electromyographic features. After history and clinical examination, molecular genetic testing was performed by Polymerase Chain Reaction (PCR) technique. Results: Among 100 patients, 73 patients had genetically confirmed disease while 8 cases were proven by biopsy, and thus a total 81 cases were further taken up for the study. Mean age of onset of clinical symptoms was 3.9 yrs; Valley sign and calf hypertrophy were most consistent features, while about 51% had facial weakness. Out of 73 genetically confirmed cases 53 (72.6%) showed deletion in distal exons and 12 (16.4%) showed deletion in both proximal and distal exons while 8 (10.9%) had only proximal deletion. There was no correlation between genetic pattern and clinical features. Conclusion: The positivity of PCR- based diagnosis is higher in our study possibly related to highly selective group of patients. Phenotype and genotype correlation was not seen.

Neurological disorders in children and adolescents.

OBJECTIVE: To ascertain the prevalence of active epilepsy, febrile seizures (FS), cerebral palsy (CP) and tic disorders (TD) in aged 19 years or less. METHODS: This was a cross-sectional observational study conducted as a two-stage door-to-door survey of a stratified randomly selected population in 2003-04. Trained field workers screened the population followed by case examination by the field neurologist. RESULTS: A total of 16979 (male 8898, female 8081) subjects aged <or= 19 years were surveyed. The prevalence rates per 100,000 population of active epilepsy, FS, CP and TD with 95% confidence intervals are 700.87 (580.60-838.68), 1113.14 (960.07-1283.59), 282.70 (CI 208.43-374.82) and 35.34 (12.96-76.92) respectively. Active epilepsy prevalence shows a rising trend and that of other disorders a declining trend with age. Of the epileptics who had brain CT scans, 23.4% showed single or multiple lesions suggestive of neurocysticercosis. Regarding treatment, 23.5% of the epileptics never received any antiepileptic drugs. Among those with history of FS, 9.5% developed epilepsy later on. The prevalence of FS among slum dwellers is lower than in the non-slum population. Among CP cases, 39.6% gave history of birth anoxia, 16.7% kernicterus and 31.3% epilepsy. Prevalence of CP is significantly associated with lower education status. CONCLUSION: The prevalence of CP and TD is lower than reported from western countries. CP prevalence is also comparatively lower than in many community studies from India. Compared to western nations, higher proportion of FS cases develops epilepsy. A third of the CP cases have seizures which is higher than in many Indian studies. Birth anoxia is a common cause of CP and educational underachievement is frequent.

A random sample survey for prevalence of major neurological disorders in Kolkata.

BACKGROUND & OBJECTIVES: Large scale epidemiological studies on neurological disorders are very few in India. We therefore planned to conduct a cross-sectional population-based epidemiological study on a stratified randomly selected sample from the city of Kolkata to study the prevalence of major neurological disorders such as epilepsy, stroke, dementia and Parkinsonism. METHODS: The method of case ascertainment was two- stage house-to-house survey; the first stage was undertaken by a field team consisting of four field workers and a neuropsychologist. Screening questionnaire based on National Institute of Mental Health and Neuro Sciences (NIMHANS) protocol was used. In the second stage a neurologist examined all the screened positive cases. RESULTS: A total of 52,377 subjects participated in the study. The crude prevalence rates (per 100,000 population) of major neurological disorders with 95 per cent confidence intervals (95% CI) and age adjusted rates (AAR) based on US 2000 population were 557.5 (95% CI 496.17-624.40 and AAR - 516.77) in epilepsy, 486.85 (95% CI 377.0 to 551.11 and AAR-765.68) in stroke, 87.82 (95% CI 64.02-117.50 and AAR-168.4) in dementia and 45.82 (95% CI 29.64-67.63 and AAR-71.64) in Parkinsonism. The weighted prevalence rates (per 100,000) of the whole population based on re-screening of 10 per cent of negative samples were 763.89 (95% CI 690.55- 842.57) in epilepsy, 624.32 (95% CI 555.64-699.24) in stroke and 139.37 (95% CI 108.71-176.06) in dementia. INTERPRETATION & CONCLUSION: A high rate of stroke and overall lower prevalence of Parkinsonism and dementia was recorded as compared to western studies. High prevalence rate of stroke emphasizes the need to study incidence, morbidity and mortality profile of stroke including its socio-economic impact and also case-control analysis to determine the underlying risk factors.

Dementia in india--a critical appraisal.

Dementia is a clinical syndrome characterised by acquired loss of cognitive and emotional abilities that interfere with activities of daily living. It is a disease of the older adults. The overall prevalence of dementia in developed countries has been reported to be between 5% and 10% after 60 or 65 years and older. India is the second largest populous country. The prevalence doubles with every five-year increase in age. Looking at some studies, it appears that the prevalence of dementia in India is lower as compared to developed countries and even from other developing countries. The probable reasons for lower prevalence in India are enumerated as: False negatives, low life expectancy, shorter survival and duration of disease, low age-specific incidence. Risk factors include greater age, female sex, less education, positive family history, Down's syndrome, stroke and its risk factors, head trauma with loss of conscionsness and thyroid diseases. Protective factors include higher education, APOE2 gene, intake of antioxidant substances, use of anti-inflammatory drugs, oestrogen supplements in women and also cigarette smoking (controversial). Alzheimer's disease has been found to be commonest cause of dementia. Patients of dementia require proper evaluation and management requires a multidisciplinary approach. The government and the social organisations should come forward and only a concerted effort of all people in every sphere of life will enable to tackle the new menace of this country.