Alzheimer's Disease Day: Treating Dementia with Care Rather Than Cure

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Alzheimer's disease (AD) was considered a disease of the West in the Indian subcontinent, until 1991 and symptoms of the disease such as failing memory were widely attributed to old age. Increasing awareness about the prevalence of Alzheimer's disease in India, hitherto unnoticed, has opened up various possibilities for managing the disease and improving the quality of life of Alzheimer's disease sufferers and the family members caring for the patients.

Medindia interviewed Ravi Samuel, a Cognitive Behavior Psychotherapist trained at National Hospital, Queen's Square, London and certified by the Rehabilitation Council of India as Rehabilitation Professional. With over 20 years of experience in treating people with various mental illnesses, Ravi Samuel provides Cognitive Rehabilitation for patients with Alzheimer's disease, brain damage, dementia and related disorders. He is the Founder of an NGO called Vision Age India that offers solutions to families of patients suffering from Alzheimer's disease and other geriatric diseases.

Q. How aware are Indians of the prevalence of Alzheimer's disease in India?

A. In 1991 a World Health Organization (WHO) project tested people above 65 years in India and found that 4 in 1000 people in India had Alzheimer's disease. A Dementia Clinic was opened in the Government General Hospital in Chennai soon after. It raised awareness among the public, provided treatment and guidance to the family members on behavioral management. This also enabled many students to take up research projects on psycho-social aspects related to dementia.

In 1994 the first Annual Conference in India on Alzheimer's disease brought many International experts to India, to discuss the prevalence and treatment options available for Alzheimer's patients in India. Soon the media turned the spotlights on Alzheimer's disease in India. Now the awareness is so improved that I have people bringing their elders at home with failing memories to my clinic, asking me if it could be vascular dementia or Alzheimer's disease that has affected the patient!

The challenge now lies in diagnosing reversible and irreversible dementias. Acute depression, tuberculosis in the brain, brain damage due to internal or external injuries, thiamine deficiency can trigger symptoms such as failing memory, disorientation, inability to get the right word while speaking etc. Often, these are cases of reversible dementia where the patient can get back to leading a normal life after taking medication and cognitive exercises. In the case of irreversible dementias like Alzheimer's disease and vascular dementias, the patient gradually loses control over life as the brain degenerates and renders the person wholly dependent on family members.

Q. Tell us the progression of Alzheimer's disease as seen in your experience treating patients with the disease? Do people die of Alzheimer's disease?

A. Failing memory, loss of time, day, date, month and year orientation, losing the ability to calculate, to make emotional judgments, undergoing a personality change due to an inner confusion leading to "clinging" behavior that manifests total dependency on another are a few symptoms. Patients often walk out of their home, forget their destination, wander aimlessly and even get lost sometimes. As the disease progresses, caring for the person poses a huge challenge to family members.

Alzheimer's disease is not a life threatening disease, but the patients die of other medical complications like pneumonia, myocardial infarction (heart attack) and other undiagnosed medical conditions. The longevity of the patient depends on the type of medical and psychological care they receive. In India research studies have shown that patients live from 4 - 12 years after early intervention. Since they will not be able to report physical discomfort it is a challenge to diagnose and treat medical problems.

Q. How do patients and their families cope with Alzheimer's disease in India?

A. In the West there are day care centers, assisted living communes and institutions that cater to the needs of Alzheimer's patients. A few such centers are coming up in urban areas in India, to provide respite to the care givers who need to go for work.

Majority of the Alzheimer's patients in India stay at home and are taken care of, by their family members, who sometimes hire carers or nursing aides to take care of the patients at home. If that didn't happen, the number of Alzheimer's patients needing care would be a huge, unmanageable social burden to the country.

There are agencies in urban areas supplying nursing aides to families in need of carers. I have known family members resign a job to stay at home to take of a parent or parent-in-law affected by Alzheimer's disease. With technological advancement, there are people who monitor carers' movements on a web camera from their work spot to ensure the diseased elderly person at home is properly cared for by the nursing aide. When the family brings the patient to my clinic for cognitive rehabilitation sessions, we teach the family to look for telltale signs of abuse at the hands of carers-such as ruffled clothes and complaints of specific aches suggesting manhandling, fatigue and malnourished look suggesting poor feeding habits etc. at the hands of indifferent carers.

Q. Is there a qualitative difference in the way in which Alzheimer's disease sufferers are cared for by families?

A. As far as I have seen, families in lower income groups are more accommodative and readily accept the challenge of having to live with a person diagnosed with Alzheimer's disease. Such families are generally sociable and adaptive; hence the patient lives cheerfully amidst a strong social support provided by the neighborhood. Contrarily, in many cases Alzheimer's patients living in rich households are kept isolated, not getting to meet anyone thereby leading very lonely lives.

Q. How do you use Cognitive Rehabilitation treatment to help people with Alzheimer's disease?

A. There is no known cure for Alzheimer's disease. All we can do is slow down the deterioration of the affected person's mental faculties and maintain the quality of life as long as possible. Just as physiotherapy helps a person regain muscle strength, cognitive rehabilitation is a specialized treatment to help people regain the impaired functions of the brain, as in dementia, through specific mental exercises. Early intervention helps Alzheimer's patients stimulate their memory and try to remember things without succumbing to an �exaggerated' sense of memory loss.

For Restorative rehabilitation, we use specialized computerized and manual exercises to enable the person develop the lost function of the brain. We choose specific exercises for memory, orientation calculation, abstract reasoning, logical reasoning, spatial orientation, reading, writing, comprehension etc. The patients are also given home exercises which they will do everyday to improve their cognition.

If the problem is irreparable or when the patient's condition worsens, we resort to Compensatory Rehabilitation. We help the patient develop compensatory techniques to overcome their impairment such as using a notepad to write down what they need to remember. It is interesting to observe how family members come up with ingenious ideas to help patients in advanced stages of the disease to retain their sanity. Patients need continuous support when they are tormented by an inner confusion that often threatens to affect inter-personal relationships. Our NGO Vision Age is an outreach program which sends out a nursing aide to families who need counseling.

Q. AD is only now gradually getting recognized as a disease that can affect anyone from their sixties with early onset manifesting sometimes from age 40 or 50 onwards? How can Medindia help spread awareness on Alzheimer's disease?

A. Powerful web publications like Medindia can create awareness and motivate people to participate in the care of Alzheimer's disease patients. Carers of Alzheimer's patients require hands-on help: to pay the bills, sit with the patient while they are attending to their personal work, to take little rest after giving bath to the patient or after feeding the patient for two hours! Encourage people to offer support to carers by dedicating few hours in a day or week to help them. What one thinks as a negligible help would actually be an enormous respite for the carer. There cannot be a better feel good exercise than helping a person in need. Due to fear of rejection carers will hesitate to request for help, so please offer help. Do not wait for them to ask. Providing such help need not be just within the family, it can be extended to the relatives, friends and even people in the neighborhood.

We have devised a set of cartoons supported by a simple storyline to explain Alzheimer's disease to the general public. You can use the cartoons in medindia website to spread greater awareness about Alzheimer's disease particularly among the younger age group. Educating the carers would enable them to take informed decisions instead of feeling helpless about the situation.

"I now begin the journey that will lead me into the sunset of my life," wrote the late President of the United States Ronald Reagan, when he was informed that he had Alzheimer's disease. Medindia wishes Ravi Samuel all success in his endeavors at cognitive rehabilitation to improve the quality of life of patients and their families suffering from Alzheimer's disease -a disease in which the focus is on Care rather than Cure.

Source: Medindia

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