Pandemic made access to medical care, support challenging for dementia patients
In India, it is estimated that one in 27 people (5.3 million) above the age of 60 had dementia in 2020, according to the Dementia in India 2020 report published by the Alzheimer’s and Related Disorders Society of India (ARDSI). This is projected to rise to 7.6 million by 2030. Also, in Karnataka, 2.25 lakh elders have dementia, while in Bengaluru, the number of people with dementia is around 46,000. And for this population, the COVID-19 pandemic has been, to put in milder terms, challenging.
“Dementia requires prolonged management and support. The pandemic made access to medical care and dementia management extremely challenging. Moreover, the closing of daycare services, no admissions at residential and respite centres further enhanced the burden of caring for family members. People with dementia are at high risk of mortality due to COVID-19 which was evident in care homes in the West which were worst-affected during both waves of the pandemic. We faced a similar challenge in our residential care homes and we had to make significant changes to tackle infections,” said Radha S. Murthy, managing trustee, Nightingales Medical Trust (NMT).
P.T. Sivakumar, professor and head of Geriatric Psychiatry, Department of Psychiatry, NIMHANS, echoed the difficulty in accessing support services and threw light on the patients’ difficulty in cooperating with restrictions due to COVID 19. “Most of our patients are home-bound, but those with behavioural problems would not listen to restrictions due to the lockdown, etc. Patients of dementia developing COVID-19 too found it challenging to get treatment in isolation. Many found it difficult to be away from their family and were confused in an unfamiliar place,” he said.
Dr. Sivakumar said though there is nothing to suggest that those with dementia faced higher infection, they did have some patients who got affected, and post COVID-19, worsening of cognitive problems was noticed in some – a condition for which there is ‘increasing literature’. Many who had postponed consultations now suffer from more severe problems, he added.
Talk about it
With World Alzheimer’s Day on September 21, Dr. Murthy stressed on the need for caregivers and society to talk about dementia. “There is a lot of stigma around dementia and mental health as such. Family members affected by dementia and people with memory issues should seek help and not hide the condition. We need to build an inclusive society where people with dementia are also treated normally,” she said, adding that recognising dementia as a health care priority by policymakers, funding allocation, active engagement of NGOs, and strong advocacy efforts are crucial in building a dementia-friendly India.
Cost of care
The annual household cost of caring for a person with dementia in India, depending on the severity of the disease, ranges between ₹45,600 to ₹2,02,450 in urban areas and ₹20,300 to ₹66,025 in rural areas, explained Premkumar Raja, co-founder and secretary, NMT.
“Costs increase with the increasing severity of the disease. Residential care cost for dementia ranges from ₹18,000-₹80,000 per month depending on the type of care, the severity of the disease, and the requirement of the family caregivers,” he added, stating further that the Mental Health Act, 2017, gives details on advance directives, nominated representatives and minimum standards, though more work needs to be done about financial support.
However, the experts acknowledge that Bengaluru is a hub for research in dementia and neurodegenerative conditions.
“With NIMHANS, the Centre for Brain Research, and initiatives such as SKAN, there has been active research in the field of dementia diagnosis and treatment. This has significantly increased awareness about dementia. However, the majority of research is being conducted in the areas of diagnosis and pharmacological treatment. There is a lacuna in the field of care research,” Mr. Raja said, stressing upon the need for research that contributes to risk reduction through active ageing practices, improving the quality of life of people with dementia through non-pharmacological interventions and care strategies.
Online screening platform to be launched
The Alzheimer’s and Related Disorders Society of India (ARDSI), Bengaluru Chapter, is launching DEMCLINIC, an expert-led online screening platform for dementia, in collaboration with Nightingales Medical Trust (NMT), to mark the day. The virtual cognitive assessment platform, said to be the first of its kind in the country, aims to provide timely dementia diagnosis and post-diagnostic support.
DEMCLINIC (www.demclinic.com) will provide memory screening for senior citizens with memory issues, interactive videoconferencing with medical experts for dementia diagnosis and management, access to information on care services available across the country, and periodic follow-up, said NMT officials. While the memory screening by psychologists will be available for free, there will be nominal charges for consultations with medical experts. The web portal will allow people to book and get an assessment with dementia experts from their homes.