World Alzheimer's Day: Let us remember those who cannot remember

ALZHEIMER’S & RELATED DISORDERS SOCIETY OF INDIA (ARDSI) is celebrating the “National Dementia Awareness Week" from the 16th Sep to 22nd Sep 2007. Organisations and other like-minded people are arranging and participating in the programme to support the cause of Dementia in India. It will go a long way in supporting the cause of the patients and caregivers.

I am not a doctor, psychologist or social worker by profession but have a passion to work for the elderly and for the cause of Alzheimer’s. I got interested because of my association with ‘Dignity Foundation’. My colleague Hendi Lingiah and I were instrumental in starting India’s first 24 x 7 Dementia Care Centre, near Mumbai. Working with the patients, care-givers and browsing through the internet, I gained knowledge about Dementia, which I would like to share with the society.

Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. The most common form of dementia among older people is the Alzheimer’s disease, which initially involves those parts of the brain that control thought, memory and language. Alzheimer’s disease (AD) is a silent killer of the brain and lives off the world’s elderly people. It is the fourth leading cause of death among the older adults in the developed world. Named after Alois Alzheimer, the German physician who identified it in 1907, it remains elusive as to its cause and is resistive to treatment. It starts as a robber of memory and slowly erodes the intellectual and functional abilities leaving the patients bed-ridden and ultimately leading to their death, mostly through pneumonia (infection of the lungs). The course the disease takes and the pace at which the changes occur vary from person to person. On an average, patients live between eight and ten years after they are diagnosed with the disease, though some may live with the disease for as many as 20 years. Alzheimer’s disease is not senility and it is not a normal part of the aging process. It is a disease. It can strike anyone. It may be diagnosed only by a physician and only after a thorough physical, psychological, and neurological evaluation.

In India, by 2005, approximately 3 to 4 million had been afflicted by dementia. According to a study, about 4% of the population over 65 is afflicted with dementia; it means that by 2010, we will have around 10 million people afflicted with Alzheimer’s disease.

No treatment can cure Alzheimer’s disease. However, for those in the early and middle stages of the disease, the drugs terrine (Cognacs), donepezil (Precept), rivastigmine (Exeo), or glutamine (previously known as Romany) may help pre-vent some symptoms from becoming worse for a limited time. Most often, spouses and other family members provide the day-to-day care to the patient. As the disease gets worse, the patients need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job and finances.

As my ex-colleague Ms Hendi Lingiah, Clinical Psychologist, France, says, “It would be a hard task, knowing for example the number of the Dementia population in India. Following a plan in the public health policy becomes a necessity – it involves recognition of the early symptoms of dementia, the different models of interventions, research on the disease, drug and non-drug therapies, infrastructure-training of professionals and homecare givers.” This challenge to public health is hardly accepted in developing countries; do we let the disease crush us or do we start working together? Research on Alzheimer’s disease in India is still in the initial stages. Medication is expensive. Among the family members, care for Alzheimer’s patients, even with the best of intentions, is accorded low priority. Professional support systems are non-existent. Against this background, general physicians and neurologists try their best to make things better for AD patients. We do not have enough day-care centres or assisted living communes as in the West. Are there any aids or gadgets that make life a little better for the AD-afflicted?”

Due to lack of awareness of AD, most patients / family members tend to ignore the symptoms of the disease as a normal part of the aging process. Clinical help is sought only after a drastic deterioration in the patient’s health has set in. Creating mass awareness about this tragic condition can help detect Alzheimer’s at an early stage and provide avenues for appropriate support and care for patients. What is needed is counselling and support services to help sustain the capacity of the caregivers. Training the volunteers and informal caregivers can be of immense help in supporting the family and caregivers. Also, all old age homes and hospitals should have wards for the AD-afflicted. So if you know anyone suffering from Alzheimer’s or Dementia, take him to the doctor for diagnosis or to any organisation that offers psycho-social care. I know there are not enough specialists in this field or their action is limited, owing to lack of funds and goodwill. But presently in India, ageing and senior care has become an important issue and the government has started to react by integrating it in its policy for the old people. But let us not depend only on the ministry; let us come together and make a joint effort in our own way to make the life of seniors comfortable; let us offer support and care to people suffering from Alzheimer’s as also their care-givers.

Let us salute all the family members and the caregivers of the AD-afflicted patients. Together we can do a lot for the AD-afflicted; so, join the movement!