Dementia is a group of symptoms that occur due to damage or impairment of the brain cells. Impaired memory, thinking, language, prolonged comprehension, judgement, decision-making and orientation are all commonly experienced while suffering from the disease. In this essay, we look at key reports, studies and care networks serving people living with dementia, their families and caregivers.
18th September, 2021
Mahesh Venkateswaran
Dementia in India
Dementia is a group of symptoms that occur due to damage or impairment of the brain cells. Impaired memory, thinking, language, prolonged comprehension, judgement, decision-making and orientation are all commonly experienced while suffering from the disease. As time passes, the patient cannot carry out their day-to-day tasks on their own. Eventually, the disease gets worse with ageing.
According to the WHO, the number of people living with dementia is growing around the world. The WHO estimates that more than 55 million people (8.1 % of women and 5.4% of men over 65 years) are living with dementia. This number is estimated to rise to 78 million by 2030 and to 139 million by 2050. The global cost of dementia is projected to increase to $1.7 trillion by 2030, or US $2.8 trillion if corrected for increases in care costs.
As of 2020, India is estimated to have over 5 million people living with dementia. The Dementia India Report of 2010 had mentioned that there were 3.7 million persons living with dementia in that year, and the number was likely to double by 2030. In 2010, the total societal cost of caring for known dementia patients was ₹14,700 crores, projected to increase three-fold by the end of 2030. A 2013 study in the Indian Journal of Public Health mentioned that the annual expenditure to care for a Dementia patient could go as high as ₹2,02,025 in urban areas and ₹66,025 in rural areas in India.
The treatment gap in India for Dementia patients is almost 90 per cent. This means that only one in ten patients receive a proper diagnosis, treatment and care. There can be several reasons to justify that.
Some of the most common reasons are,
- lack of awareness about the condition amongst people and the healthcare professionals
- lack of human resources to treat the patients
- lack of public health priority for Dementia
Dementia Care Networks
Alzheimer’s and Related Disorders Society of India (ARDSI) is a non-profit organization that works towards a dementia-friendly society, and is part of the Alzheimer’s Disease International (ADI), an umbrella organization of more than 100 associations. Established in 1992 by Dr Jacob Roy Kuriakose along with likeminded individuals, it today has a network of 24 chapters across the country, providing medical care and support for individuals, and their families and caregivers. The services provided ranges from day care clinics, full time residential centres, helpline numbers and support to meet the needs of people living with dementia. Some centres also have the facility to provide free medication to the elderly. Below is the list of care services provided at ARDSI’s city centres.
- Day care facilities for persons with dementia
- Respite care services
- Residential care facilities
- Counselling and guidance for family care givers
- Home care services
- Memory clinics
A 2020 study by ARDSI’s Cochin chapter stated that there are three stages of the progression of the disease.
- Early-stage is when the patient can carry out their routine but often forgets and misplaced things and cannot do multi-tasking. They might face problems in remembering names and time and have a slowed concentration, planning and decision-making.
- In the middle stage or the moderate degree, patients face increasing dependency, forget personal information, are disoriented and experience behavioural changes like wandering and aggression.
- In the late stage or severe dependency, they can forget the names of relatives, and in worst cases of themselves too and face difficulty to communicate.
ARDSI’s 2018 report titled Dementia India Strategy lays out a vision and seven action areas for comprehensive and sustainable dementia diagnosis, care, rehabilitation and supportive services across the country.
Much of the work in this space is largely driven by passionate individuals, experts from various disciplines (geriatricians, clinical psychologists, neurologists, psychiatrists, neuroscientists, gerontologists), caregiver advocates, non-profits and institutions focused on elder care. Organizations like Nightingale Medical Trust, a non-profit based in Bengaluru, have focused programs on active ageing and dementia care programs. They manage at least five such centres, a combination of day care and residential care facilities in Bengaluru, Kolar (in partnership with Methodist Church of India) and Hyderabad (in partnership with Red Cross). The Kolar centre is based on the Hub-and-Spokes model. The clinical team constantly monitors the centre using specially designed Teledementia Management Software from Nightingales Centre for Ageing and Alzheimer’s in Bangalore. Similarly, Dignity Foundation manages two day care centres in Chennai and Mumbai while Silver Innings Foundation offers dementia care in its A1 Snehanjali assisted living facilities. These institutions can be broadly classified as below.
- ARDSI chapters offering day care and/or residential facilities along with many other services listed above.
- Hospitals that have a specialized neuro or memory clinic, and provide clinical and medical assessments for people with dementia with an interdisciplinary approach. Some of them also offer other services (caregivers, support groups, etc.).
Examples: AIIMS, NBRC, AIISH, KMC, Manipal hospitals, etc. - Clinics managed by a small group of multi-disciplinary experts offering clinical and medical assessments. They are mostly at-clinic services, and rarely care services.
Examples: Chronic care dementia facility, Manobal Klinik, Cogworks cognitive neurology clinic, etc. - Non-profits that offer dementia care services; they offer day care clinics and/or fully residential facilities, and also support to patients, families and caregivers.
Examples: Hope Ek Asha, Nightingales Medical Trust, Silver Innings Foundation, etc. - Assisted living facilities and seniorcare service providers that offer dementia care services as part of their programs through a dedicated internal team and network of experts.
Examples: Samvedna Seniorcare, Aaji Care, A Silver Amore, Epoch Eldercare, etc.
Dementia Care Resources
Dementiacarenotes.in is a fabulous resource for all things related to dementia in India. Maintained by Swapna Kishore, a resource person for dementia, trainer and writer, the site provides resources, tips, caregiver stories for dementia caregivers in India. For example, the caregiver stories page has a rich set of firsthand experiences and a diverse set of views from across India. For anybody looking to understand dementia from a lay person’s perspective (and not medical or other advice), this is a site that needs to be the first stop. A Hindi-version of the site is also available at dementiahindi.com. Many other care providers and networks also provide locally relevant information and updates on events, interactions, etc.
The ARDSI main website (https://ardsi.org) and chapter sites provide quite a lot of information on resources, training programs and city networks. Websites of the Alzheimers Disease International (https://www.alzint.org) and Mayo Clinic’s Dementia page (https://www.mayoclinic.org/diseases-conditions/dementia) are also useful references for those keen to learn more.
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