BENGALURU: In a first-of-its-kind initiative in India, the National Institute of Mental Health & Neuro Sciences (NIMHANS) with the support of Cipla Foundation, has set up a multidisciplinary neuro palliative care unit to reach out to people with neuro-degenerative disorders, among whom dementia patients and their caregivers form a major proportion.
Set up in November 2021, the pilot initiative has reached out to over 2,000 patients with neuro-degenerative conditions, and 206 dementia patients from Karnataka and outside have received advanced care through telephone/home-based supportive care after initial diagnosis and treatment plan. There are plans to scale it to the national level because the need is huge.
According to a recent multi-centric study, the prevalence of dementia in India is around 7.4% with nearly 90 lakh people suffering from the debilitating neuro-degenerative brain disease. By 2036, the number of individuals with dementia will rise to 1.7 crore. Unfortunately, less than 10% of dementia cases in the country are currently diagnosed and treated, largely because of ignorance, lack of awareness and resources, stigma and scarcity of experts and memory clinics. Alzheimer’s disease, which causes the brain to shrink and brain cells to eventually die, is the most common cause of dementia.
Dementia is characterized by progressive memory loss, mobility and communication difficulties, impaired judgment, and behavioural changes. “Most of the neurological conditions have high support needs. Dementia poses a significant challenge to affected individuals, their families and immediate caregivers. External support services are often unavailable, inaccessible, unaffordable and unsuited to meet the needs of patients. This leads to increased suffering, owing to the direct and indirect costs associated with caring,” said Dr Priya Thomas, additional professor, Psychiatric Social Work (PSW), Neurology, Nimhans.
She added that patients with neurological diseases have unique requirements owing to mobility issues, communication difficulties, cognitive impairment, among several other neurological deficits.
“Most degenerative neurological diseases remain incurable, shorten a person’s lifespan, increase dependence on caregivers, diminish quality of life, and are associated with pain and other physical, psychological, and spiritual suffering that are often difficult to control,” she said.
Palliative care is a multi-disciplinary approach for patients with terminal illness like cancer. It focuses on pain and symptom management, psycho-social and spiritual support, and effective communication to improve the quality of life of patients, their families and caregivers.
“Palliative care need not be limited to end-stage cancer patients only. The neuro-palliative care unit at Nimhans is an outreach initiative for people with life limiting, chronic neuro degenerative conditions. It can supplement routine care of neurological patients in many ways, and is an important component of patient care,” she added. With India’s elderly population expected to reach a staggering 20 crore by 2031, there’s an urgent demand for a national action plan to address Alzheimer’s disease.