Integrating Palliative Care in Dementia in India: How Long Can We Afford to Wait?

Dementia is the most common neurological condition, significantly impacting individuals, caregivers, and healthcare infrastructures worldwide. The prevalence of dementia is increasing rapidly across the globe. In India, approximately 5.3 million individuals are affected by dementia. However, there is a treatment gap of 90 percent.^1,2 The median survival after Alzheimer’s disease (AD) dementia diagnosis has been reported to be 5.8 years. In contrast, for non-AD dementia variants, it was, on average, 1.1 years lower. ³ Typically, dementia care in India revolves around culturally driven, home-based, family-centric care supported by medical consultations, which imposes physical, emotional, and financial burdens on the caregivers. However, in patients with dementia, death is often not directly due to dementia but from complications such as respiratory infections, sepsis, aspiration pneumonia, and falls from bed.^4,5 Traditional mentality, societal taboos around discussions of death, and the stigma associated with cognitive decline further magnify caregiving challenges. This growing prevalence, rural-urban disparity, and caregiver burden underscore the pressing need to address significant gaps in current treatment strategies for dementia in India.

Owing to the risk of death from complications due to a lack of proper care and increased demand on caregivers, palliative care principles might be of great importance in the context of dementia. In the Indian context, palliative care primarily focuses on cancer; however, due to the progressive nature of dementia, it can play a significant role in its effective management.

Discussion

Dementia-specific palliative care may ensure comfort, dignity, and holistic management, enhancing quality of life. The palliative approach must focus on proactive symptom management in a tailored manner, focusing on individual needs at each stage, including pain relief, control of infections, behavioral symptom regulation, and ensuring adequate nutrition and hydration. Advance care planning (ACP) is vital in maintaining patient autonomy and aligning care with the patient’s values and preferences. It is important to introduce palliative care early in the disease course, reserving end-of-life (EOL) care discussions for later stages. EOL care in dementia differs from other conditions, given that patients often lack insight into their disease progression, making proxy decision-making and advance directives essential. Discussions surrounding dignified death and other ethical debates also emerge in this context. Clinical decisions around interventions such as percutaneous endoscopic gastrostomy need to balance prolongation of life with comfort and quality considerations. ⁶ Preventing bed sores, using water or air beds, and providing attentive nursing care can be more effectively delivered through a palliative care model and can thus ensure patient comfort.

A multifaceted approach integrating palliative care along with structured respite care, partial nursing home admissions, and community-based support systems can be critical in reducing caregiver burden. India has made notable strides in this direction over the past decade. Establishing a neuro-palliative and supportive care clinic (SANTVANA) at the National Institute of Mental Health and Neurosciences is a landmark initiative offering specialized services for individuals with neurological disorders.^7,8 Other focused initiatives and training programs are necessary to meet the increasing demand for neuro-palliative care.

Legal frameworks such as the Mental Healthcare Act 2017, ⁹ have recognized the importance of ACP, enabling individuals to draft advance directives and select nominated representatives (proxy decision-makers). Similarly, the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana scheme incorporates healthcare coverage for neurological conditions such as dementia for individuals above 70 years. Despite supportive legislation, the practical implementation of these provisions remains limited due to cultural reluctance to discuss death, low public awareness, and inadequate training on EOL care planning among healthcare professionals.

Remote home-based palliative care models, integrating healthcare professional input with caregiver training, can enable families to manage the complex care requirements of advanced dementia. Expanding community and home-based dementia palliative care services and tailoring these services to rural areas with limited health resources can bridge the urban-rural disparity. These services can be offered on a choice basis and can be incorporated into the advance directive. The models must be thoughtfully designed to provide respite care and reduce caregiver burden, while upholding the dignity and autonomy of the person with dementia. It is essential to ensure that the setting is a compassionate, community-oriented space rather than institutional, to avoid replicating stigmatized asylum settings. If implemented this way, these settings can also help in spreading awareness, dismantling the stigma surrounding dementia, and encouraging early ACP and EOL planning. Dementia villages and holistic residential care models integrating healthcare, community engagement, and recreational facilities within secure environments can provide both independence and safety to patients.

Recent advancements in technology can be thoughtfully incorporated into the home and community-based palliative care model for dementia, to improve comfort, safety, and caregiver support. Neuro-palliative telemedicine support can facilitate timely consultations and symptom management, reducing unnecessary hospital visits. Mobile health applications and remote patient monitoring systems can offer real-time insights into health status, enabling early interventions that align with the goals of care. Smart home technologies, sensor-equipped living spaces, and smart clothing with biometric sensors can enhance safety by alerting caregivers to potential health concerns or emergencies. While technologies such as smart intensive care units (ICUs) may initially appear more aligned with acute care, certain features, such as round-the-clock monitoring, can be adapted to support palliative care in advanced dementia. Additionally, dementia-friendly architectural design that prioritizes safety, accessibility, and sensory engagement remains a vital aspect of supportive environments. While these innovations are promising, their implementation in rural and resource-limited communities is challenging. Government initiatives and public-private partnerships to introduce low-cost, user-friendly technological support can help resolve this concern to a certain extent.

India’s cultural, religious, and linguistic diversity must be woven into dementia care strategies. Collaborating with community leaders, religious organizations, and cultural influencers can enhance care delivery acceptance and build community trust. This can be achieved through training frontline health workers in dementia-specific palliative care, introducing palliative care centers through primary care centers, training community, and religious leaders to promote awareness of the importance of palliative care, and developing dementia resources and information on palliative and respite care, as well as educational material on ACP in regional languages. Caregiver education on the importance of these care models can empower families to provide more informed and supportive EOL care and reduce burnout.

Conclusions

The path to achieving holistic palliative care for dementia is complex and demands coordinated efforts from healthcare providers, policymakers, communities, and families. This goal is within reach through collective commitment and proactive planning. However, the question remains how long can we afford to wait?