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 7th leading cause of death and a major cause of dependency amongst the 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 behavioral changes are often brushed aside as being typical problems that occur as a normal part of aging, which contributes to significant delays in diagnosis.
Often the first point of contact is with a professional is when behavior becomes too challenging or embarrassing for family members to manage. Alarmingly, an Alzheimer’s and Related Disorder’s Society of India report mentions treatment gaps are as high as 90% in India meaning only a fraction of people living with Dementia and their families are actually receiving the support they need.
The challenges of Dementia diagnosis and care
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 a deterioration in cognitive abilities, including memory loss, problems with understanding language and expressing oneself, difficulty planning or performing familiar tasks, disorientation, and impaired judgment. Changes in mood and behavior are also common. As a result of these problems, during the 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 on all basic needs, e.g., 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.
Importance of early detection
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 the progression of symptoms, behavioral approaches to managing challenging behaviors, and psycho-social support for family caregivers, have been shown to significantly improve the quality of life for people living with Dementia and their families.
However, early detection of Dementia 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 the 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 USD. 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 the 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 Dementia facilities.
September is world Dementia awareness month and this year organizations 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.
Since 2017, Samvedna Senior Care has been working with resident welfare associations and organizations, to conduct Dementia awareness drives and memory screening camps, in addition to providing Dementia specific services. This month, free online screening camps are being held in an endeavor to encourage early detection of Dementia. At this critical juncture when the number of Dementia is 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.
Dr. Jayashree Dasgupta, Co-Founder & Project Director, Samvedna Senior Care