India is one of the countries globally that is aging fast. As per estimates, by the year 2050, about 20% of the country’s population will be over 65 years of age. Age also comes with various associated health disorders, and dementia is one of them. Estimates peg the number of patients with dementia in India at 5.3 million, a number that is set to rise to 7.6 million in 2030. This special segment of the elderly already faces unique challenges which only exacerbated during a crisis of the magnitude of COVID-19, more so because India is one of the worst-hit countries. Dementia-related behavioral problems are a double-edged sword in a situation like this. Reduced access to healthcare, limited resources and fear of contracting the infection are some of the major barriers to care at a time like this. This coupled with stigma, abuse, ageism, financial impoverishment, and institutionalization, loneliness and many other things are wreaking havoc.
The challenges
People with neurological disorders like Alzheimer’s are impaired and do not understand the implications of COVID-19. The guidelines around the pandemic, compliance to protocols such as social distancing, masking, etc., are all extremely difficult for them to make sense of. Every day, there is a huge volume of information around the pandemic as well as changes in guidelines which can get very confusing or overwhelming for them. Older adults with Alzheimer’s – especially those above 65 – are frail, lack respiratory reflexes, and have low immunity. All these can increase the risk of infection. Lower to middle-income countries have 60% of the dementia cases and this is a dual burden during the pandemic.
Multiple lockdowns meant reduced social interaction which is one of the major factors that can accentuate the cognitive decline. For those under institutionalized care, the fact that friends and family could not visit hit hard. Although digitization emerged as an alternative, in a country like India where digital literacy is yet to penetrate across the spectrum, proved a major barrier to any kind of social interaction. In the remote areas, there are several other issues including poverty, unemployment, and the non-availability of digital services in vernacular languages.
India’s immediate network of caregivers includes family, mostly women therein. The restricted movements and lack of ability to understand why they should stay in one place could make their behavioral problems worse – which can impact the caregivers. Although the entire family now spends time together, which is fulfilling in many ways, the fact is that caregivers now have a double responsibility. They face the likelihood of burnout, irritability, and even the risk of acquiring the infection.
Way forward
Lack of access to non-essential health care services including regular health check-ups, rehabilitation, etc., has been a potential source of challenges for people living with Alzheimer’s in India. Physical security, access to care, and a well-knit support environment are critical to the mental and emotional well-being of such people. It is therefore imperative that policies and resultant actions are taken considering the special needs of this population during a crisis like this. There is a need to decentralize Alzheimer’s care and integrate home healthcare providers into the spectrum for better access and to address barriers and delays. At-home caregiving from trusted providers can enable dedicated care for persons living with Alzheimer’s with precautions in place. This will also address the issues of stress and burnout in family caregivers. COVID-19 will not be the last pandemic and therefore, public-private partnerships that address the needs of people with neurological disorders and caregiver support, and strategies around these aspects are the need of the hour. Home visits will ensure that they are able to follow medication schedule and remain in a good support system during crises situations.
In conclusion
COVID-19 has reiterated how the elderly, particularly those with Alzheimer’s deserve a more humanitarian approach. Ageism and neglect of people with this condition is also a form of stigma and abuse. India must develop a comprehensive care model that emerges from continued training and increased sensitivity to this segment of the society. Home healthcare including caregivers are an important ally in this regard. They can not only contribute to advocacy and care but also ensure that in any future pandemics, Alzheimer’s patients are not neglected but rather made a part of the care continuum.
Dr. Vishal Sehgal, President, Medical Services, Portea Medical
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