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
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?
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
. Acute depression, tuberculosis in
the brain, brain damage
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
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
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?
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
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?
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?
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
For Restorative rehabilitation,
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?
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
"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.