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This September, WHO released a report on public health response to dementia, drawing attention to the fact that there are more than 55 million people living with dementia across the world, with a new case developing every 3 seconds. Unfortunately, despite being the seventh leading cause of death and a major cause of dependency amongst elderly, public awareness about early signs and symptoms of dementia remains incredibly low. With global population aging and dementia numbers expected to rise to 78 million by 2030, the impending economic and societal burden of care is massive. Ironically, forgetfulness, confusion and behavioural changes are often brushed aside as being typical problems which occur as a normal part of aging, which contributes to significant delays in diagnosis.
Often the first point of contact with a professional is when behaviour becomes too challenging or embarrassing for family members to manage. Alarmingly, an Alzheimer’s and Related Disorders’ Society of India report mentions treatment gaps are as high as 90% in India meaning only a fraction of people living with the condition and their families are actually receiving the support they need.
Dementia is a syndrome, or a group of signs and symptoms, that occur as a result of diseases or injuries in the brain and it is not a normal part of aging. Most common symptoms include:
As a result of these problems, during initial stages, people with dementia often withdraw from work and gradually begin to avoid social activities. It can be embarrassing for the individual who is going through these changes to acknowledge and accept the problems they are facing. They often hide or trivialize their difficulties making it difficult for friends or family members to recognize the early signs of deterioration.
Sadly, despite more than 30 years of dementia research, medical science has not been able to identify a cure for this disease. As a result of degenerative processes in the brain, patients with dementia gradually become dependent for all basic needs, for example, feeding and toileting, requiring 24-hour care and support. The burden of care typically falls on family caregivers as there are few specialized dementia care facilities, most of which are fairly expensive.
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Research shows the average lifespan following diagnosis of dementia is about 10 years, but varies widely anywhere between 5-15 years. Even though currently there is no cure for dementia, a three-pronged approach of medication to slow progression of symptoms, behavioural approaches to manage challenging behaviours, and psycho-social support for family caregivers, has been shown to significantly improve quality of life for people living with the condition and their families.
However, early detection is critical. In addition to the obvious benefits of access to medical interventions and psychological support, timely diagnosis allows families to plan for long-term care which may span a couple of years. Important decisions can be made regarding legal matters and decisions for end-of-life support whilst the person with dementia has capacity to participate in decision making taking cognizance of their wishes. Most importantly, families have time for financial planning.
Caring for dementia is costly. An analysis by Alzheimer’s Disease International estimates the global economic cost of dementia to be a staggering $818 billion. To put this into perspective, this would be comparable to the 18th largest economy in the world if dementia were a country. Direct medical expenses, hospitalization costs and costs of informal care are enormous. In India, annual household costs can run into lakhs of rupees depending on various factors such as severity of the disease; and it is not uncommon for working women to quit their jobs and become caregivers in absence of affordable care support or facilities.
Also Read: The MIND diet: 5 foods that can reduce your risk of dementia
September is World Dementia Awareness Month, and this year organisations across the globe are focussing on creating much needed awareness about early detection and diagnosis of dementia. As the number of people living with dementia in India is expected to touch 7.6 million within the next 10 years, early detection is an absolutely essential first step. Simple psychological tests and clinical examinations are cost effective, non-invasive ways to screen for initial signs of dementia. Sadly, there are barely a handful of memory screening clinics in India.
At this critical juncture when numbers of dementia are increasing globally it is essential to bust the myth that dementia is a normal part of aging. Early detection needs to be encouraged which can help families prepare for the future. The time to act is now.
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