Neglect and abandonment of persons with dementia in India

Urgent need for residential and day-care facilities

A middle-aged couple attended the outpatient department of a mental hospital in Kolkata with an elderly person who was eventually diagnosed as suffering from dementia (Alzheimer's type) with behavioral and psychological symptoms of dementia (BPSD). They requested for admission as it was not possible for them to take care of him at home because both of them were working and they were unable to get any domestic help to stay with them. As a result, their children's studies were getting affected. The treating doctor tried to make them understand that a mental hospital is not the right place for admission of such a case. Moreover, being overcrowded, it was not possible for them to admit the patient who is likely to be permanently dumped there. They asked the treating doctor to take the patient to any government hospital or nongovernmental organization (NGO) shelter where the patient could be admitted free of cost. They left disgruntled when the doctor failed to provide the same. Few days later, they came with a court order asking for admission of the patient which was complied with. The patient subsequently had multiple physical ailments and had to be frequently shifted to a general hospital where he eventually expired. The family came only to take his body for cremation. There are also multiple instances where persons with dementia are left in old-age homes which have very little infrastructure for caring for these patients and their children do not even attend the last rites. These stories not only point to apathy of the family members but also their helplessness in providing care.

Dementia is primarily a disease of the elderly. The age-standardized prevalence for dementia (all causes) in the elderly (>65 years) is 6.4%.[¹] The number of people affected by dementia is 50 million, and the cost estimate for dementia care is 550 million US dollars. Most of the care is provided by families.[²] The caregiver burden is very high, and the family members have to bear the major brunt. BPSD is the most important factor predicting caregiver burden in dementia.[³] The majority of caregivers are women, approximately in 70% of cases.[⁴]

With the number of working women on the rise, particularly in urban areas, and breaking down of the traditional joint family system, caregivers are being stretched to their limits. BPSD and incontinence are the main sources of caregiver strain which is further exacerbated by lack of support by local health agencies and other family members.[⁵] India has been a country predominantly of youth population, but its population is aging rapidly. Governments are still grappling with issues of maternal and child health and immunization, whereas geriatric health care is in dire need for more resources. The percentage of the elderly was 8% of the total population in 2015 and is likely to be 19% by the end of 2050. Around one-fifth of the elderly are living alone or only with their spouses and they have to manage their activities of daily living alone. The ratio of working persons to dependents has increased to 100 from 15, and there is a huge variation state wise. The Dementia India Report estimated that 3.7 million people were affected by dementia in the year 2010 itself.[⁶]

The burden of dementia care is still with families, and little help is available in terms of day care or residential care in dementia. The WHO has launched a program called “I support” to support families of people with dementia.[²] However, the family structure and culture in our country is also changing so much that the Indian government has to bring out a law for care of the elderly. Migration, economic difficulties, and lack of space are the main factors which are leading to neglect, lack of care, abuse, or abandonment of the elderly. People with dementia living alone are becoming easy targets for looting and cheating and are often being thrown out of their homes. The Indian Association of Geriatric Mental Health in its policy statement has emphasized the need for developing residential, respite, and day-care facilities at every district.[⁷] Urgent action is needed in the form of day care and residential care for the elderly with dementia in both government and NGO sectors. Or else, our streets and mental hospitals, in due course, may become home for a new category of helpless “wandering lunatics” – persons with dementia!