It’s a really exhausting business taking care of someone who is ill, even if it’s a friend or family member. But if the patient is suffering from dementia, the difficulties are multiplied manifold.
It starts off innocuously, as a problem of memory. From forgetting small things, it progresses to forgetting entire chunks of one’s life. Gradually, the patient loses one faculty after another, ending up completely dependent on the caregiver even for simple activities of daily living.
A person afflicted with dementia makes enormous, unending demands on the caregiver’s time and energy, demands that could lead to deep depression in some cases.
A little over two months ago, the Thiruvananthapuram bureau of The New Indian Express published a story on the plight of a mother-daughter duo (Baby and Sangeetha). The mother was suffering from dementia and the daughter was completely exhausted from round-the-clock care she had to provide day after day, month after month, year after year without respite.
Despite holding a bachelor’s degree in commerce, and a postgraduate diploma in computer applications, Sangeetha could not go to work. The Express article brought in money, clothes and even food, but just as ways to provide respite to Sangeetha were being worked out, her mother died. Alone with her mother’s body, Sangeetha hanged herself, possibly because of a deep-seated state of depression.
The physical strain of caring for someone 24 hours a day, along with the emotional stress, makes it a very complex challenge for the caregiver.
“If there is one disease that affects the caregivers much more than the patients themselves, it is dementia. While the personality of the patient gets altered, the family gets socially isolated. Very few relatives drop in and friends may keep away. The constant demand upon the time of the caregivers coupled with this social isolation and sometimes poverty can lead people to commit suicide,” says Sreekanth P Krishnan, secretary of the Thiruvananthapuram unit of the
Alzheimer’s and Related Disorders Society of India (ARDSI), a secular, non-profit voluntary organisation dedicated to the care, support and research on dementia. Sreekanth himself was a lone caregiver for his father, also a dementia patient.
In countries like India, the greater part of caregiving is informal, particularly by the members of the family. But with globalisation and Indian families shrinking in size, nuclear families pose peculiar challenges.
“In times of crisis, most caregivers are alone. Even when there is no crisis, the loneliness eats into them and even though they look all right physically, they could be victims of depression deep down. The worst happens when they themselves fall sick,” said Dr Rajagopal, the chairman of Pallium India, a palliative care organisation based in Kerala. The lack of specialist medical interventions along with the shortage of specialists such as psychiatrists, neurosurgeons, psychiatric nurses and social workers further add to the problem.
An ARDSI study on caregivers of dementia patients has reported high levels of psychological morbidity, ranging between 40 and 72 per cent. Among older people needing care, caring for a person with dementia places greater demands on the caregiver and leads to more strain.
“We found a strong and statistically significant association between the presence of dementia and psychological morbidity in the carer,” said Leny Mathew Samuel, programme officer of ARDSI National Office.
On an average, 60 per cent of caregivers showed evidence of adverse mental health and the prevalence of major depressive disorders was 2.8 to 38.7 times higher in caregivers than in non caregivers. It has been suggested that the prolonged stress and physical demands of caregiving may increase their risk for physical health problems.
“The social workers and volunteers in our organisation do try to visit such families and give them some respite. But we have to admit that these visits are often far in between. We need to devise some kind of social network to help out these caregivers, at least so that they do get to interact with people other than the patient,” said Vijayakumar, programme-coordinator of Pallium India.
The economic vulnerability of the families who care for people living with dementia in India is another overwhelming hurdle, particularly for the families who live below the poverty line. Studies indicate that 23 per cent of the caregivers cut back on work and nearly a quarter of all caregivers suffer economic losses as they are unable to fulfill their work responsibilities.
The components of the cost of care for a dementia patient include the consultation for the initial diagnosis, medication, at times hospitalisation and paid care, special food and even house modification.
While in some cases of mild dementia there need to be brighter lights and non-skid bathroom floors, even moderate dementia demands better safety arrangements, a high commode for example, and severe dementia calls for special bed with siderails, bed pans, throw-away nappies, and so on.
Reduced family incomes and increased out-of-pocket payment for care takes a toll, increasing the economic vulnerability and making the poor poorer.
Global projections estimate that 24.3 million people have dementia today, with 4.6 million new cases every year. This will double every 20 years to reach 81.1 million by 2040. The rate of increase is predicted to be three or four times higher in developing areas than in developed regions.
Barriers to dementia care in India
* 3.7 million people with dementia and very little specialist manpower to manage them
* Stigma of the disease
* Lack of awareness, a feeling that nothing can be done
* Lack of policy initiatives for people with dementia
* Poor awareness even within the medical fraternity
* Lack of funds for dementia services, research and training
* Lack of training and support
* Considering memory problems as a normal part of ageing
An expensive disease
A landmark report on the Global Economic Impact of Dementia jointly authored by Anders Wimo of the Karolinska Institute, Stockholm, Sweden, and Martin Prince of the Institute of Psychiatry, King’s College London, reveals that dementia exacts a massive toll on the global economy.
The report reveals that the worldwide costs of dementia exceeds one per cent of global GDP at $604 billion. If dementia care were a country, it would be the world’s 18th largest economy. If it were a company, it would be the world’s largest by annual revenue exceeding Wal-Mart and Exxon Mobil. The number of people with dementia will double by 2030, and more than triple by 2050. Reports from individual countries such as the UK suggest that Alzheimer’s is one of the costliest illnesses, yet research and investment is at a far lower level than for other major illnesses.
Alzheimer‘s Disease International (ADI), an international federation of Alzheimer associations throughout the world, has urged the global community to take the following immediate steps:
* Central and state governments should act to make Alzheimer‘s a top priority and develop national plans to deal with the social and health consequences of the disease. Several countries have moved forward to develop national plans, including France, Australia and England. It is critical for other governments to follow suit.
* Governments and other major research funding agencies must increase research funding to a level more proportionate to the economic burden of the condition. Recently published data from the UK suggests a 15-fold hike is needed to what is spent for research into heart disease and a 30-fold increase is necessary to reach parity with cancer research.
* Governments must develop policies and plans for long-term care that anticipate and address social and demographic trends and have an
explicit focus on supporting family/ caregivers and ensuring social protection of vulnerable people with dementia.
* The scale of what is facing us elevates this to a global challenge, which must be addressed as a top WHO priority and on the G-20/ G-8 agenda.
Financial burden on providers
A detailed economic analysis of any disease or health situation is quite limited in India. Even then, it has been inferred that an individual caring for a person with dementia in an urban area needs approximately Rs 10,000-14,000 a month, and that the minimum amount needed to manage one person with dementia would be Rs 42,585 a year.
As much as 56.5 per cent of the cost would be due to informal care (primarily as money not gained by the caregiver who could have been otherwise employed and/or money paid for outside help), while nearly one-third of the cost would be due to direct social cost (such as transportation costs, day-care costs, residential care costs) and about 12.3 per cent would be due to the direct medical costs (cost of the medication, consultation, investigation and hospitalisation).
As the disease progresses, there will be a proportionate increase in cost and estimates indicate that during the average seven years of life for a person with dementia in an urban area, the total cost of care would be Rs 9.6 lakh.
As per this model, India currently spends as much as Rs 16,000 crore a year for the care of persons with dementia. As the number of dementia patients is set to double from the current 3.69 million to 7.61 million in 2030, the cost of care is also set to double. Assuming a nominal five per cent annual inflation, the actual cost of care would treble by 2030.