Shared responsibility for dementia care

Alzheimer’s disease and dementia loom large in India as public health crises, but the emerging challenge of their management needs greater attention than merely taking stock of statistics. The central government recognising the growing challenges due to the increase in the prevalence of dementia is laudable, but more allocation in the health budgets of the Union and state governments is critical to address the issues related to dementia care, prevention and other related public publichealth measures focused on ageing, non-communicable diseases and mental health. Developing a user-friendly toolbox for use by family members of people showing signs of dementia can support early medical intervention for quality care and treatment. The government says that the issues related to dementia care, prevention and other related public health measures are covered by the existing policies and programmes focused on ageing, non- communicable diseases and mental health. The surging population of people suffering from Alzheimer’s disease and dementia calls for undertaking a comprehensive review of whether current policies are adequate to address long-term requirements. The ‘Harmonised Diagnostic Assessment of Dementia for the Longitudinal Ageing Study in inIndia’, conducted by the Indian Council of Medical Research (ICMR), estimated dementia prevalence of 7.4% (88 lakh) in adults aged over 60 years. The government view is that risk for dementia can be potentially reduced by better management of diabetes and hypertension, and therefore, screening, early detection and management of common non-communicable diseases can play a crucial role in dementia management. Building awareness is pivotal to enhance family care for people having dementia or suffering from Alzheimer’s disease. The family plays a crucial role in providing emotional support and care and also shouldering treatment costs, which are also significantly rising, as institutional resources and support systems are often inadequate to cater to the surging number of people having difficulty with daily life due to memory loss. The Central and State Mental Health Institutions and the Psychiatric Wings of the Central and State medical colleges have facilities for early detection and treatment for Alzheimer’s Disease, which is the most common cause of dementia. However, sensitising family members about the progression of dementia-related health conditions is crucial to prepare them for scaling up the support systems at home. Due to memory loss, people having dementia often cannot remember the location of their own house, their own name or contact details of family members. Strangers who come across them on the streets and are willing to help find their house feel helpless, and the options that remain with them are helping the person reach a police station or sharing the information on social media or with a media house with the hope of reuniting them with family. The distressed family members also share information through social or traditional media when their near and dear ones living with dementia go missing and step out of home without their knowledge so that anyone coming across them can help them reconnect with the missing family member. As the family remains the first-line carer for people living with dementia, bringing community participation in its management must be a key component of dementia strategy. Even though the government has recognised the problem of the alarming rise in the number of people with dementia in the country, the institutional mechanism for its management remains part of the broader national health strategy and health systems. The sheer number of people living with dementia in the country and the changing family structure, with many shifting to nuclear families and a growing population of elderly people left to live alone, have precipitated the country’s dementia crisis. The rural and urban local bodies recognising the worsening crisis arising from the gradual loss of support systems at the family level and allocating resources for the construction of more old-age care homes, especially for people suffering from Alzheimer’s disease and other dementia-related conditions, has become an urgent necessity. Even nuclear families who are unable to provide the required support because of their migration to other cities for employment or livelihood can be mobilised to contribute towards building a community support and care system so that elderly populations gripped by dementia are ensured of a quality support system either at home or at a community-run care home. Often the perception of many people in the society about care for elderly people left to live alone is that it is a responsibility to be shouldered by the government with little role for the community, which is erroneous and needs to change. The responsibility of caring for people suffering from memory loss needs to be shared by families, society and the government to ensure that available resources and manpower are optimally utilised to provide better care and support to them. The government adopting a national strategy through a consultative process on dementia and prioritising collective responsibility will help both the government and the society to respond effectively to this emerging public health crisis in the country.