Living as a forgotten memory

The year 2015 will end on a momentous note for my family–my parents’ 50th wedding anniversary. Not that the occasion matters to my father. Places, events, dates, anniversaries, birthdays, festivals, names, and sometimes, people too, have become forgotten memories for him.

Because my father has dementia. And he is just one of the estimated 4.1 million people with the progressively degenerative condition in India (as per the World Alzheimer’s Report 2015). September 21 was World Alzheimer’s Day.

What is dementia?
According to the Alzheimer’s Association of the US, “…dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s Disease (AD) accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies”, says a note on the Association’s website.

The problem with dementia is that once someone is diagnosed, it lasts throughout the life of that person. Which means he or she will require lifelong care after diagnosis. What’s more, the number of patients with dementia, especially in India, is only an estimation. Meaning, there could be more people out there, whose families don’t yet know that a loved one already has dementia.

Signs and symptoms
Dementia commonly develops in the over-50s age group (but can, in rare cases, develop in much younger people too as portrayed by actor Kajol in the Hindi movie U Me Aur Hum). But signs and symptoms often go unnoticed. In my father’s case, his symptoms began over 10-12 years ago with memory loss and difficulty in handling money, specifically difficulty in distinguishing between currency notes of various denominations. He could not make out the difference between say, Rs 100 or Rs 500. He lost a lot of money that way, because people took advantage of his problem. And because he did not speak of what he was going through, my mother did not find out either, until much later.

Please note that dementia is not mental illness. A person with dementia is not demented or mad, as people used to believe earlier. Nor is it appropriate to use the term demented to describe people with dementia. But he or she will have difficulty in remembering certain words, in framing sentences and even, in making judgements (Should I put sugar or salt in the tea and coffee?), they will have problems with memory (Did I turn off the gas? Where did I keep my keys? Did I have breakfast?). He or she will be unable to carry out daily living activities—eating, bathing, brushing teeth, ensuring personal hygiene. He or she can also change in terms of behaviour and attitude—they can become suspicious, rude, verbally abusive, claim to be victims of abuse themselves, so on and so forth. Sometimes changes are subtle, some are more pronounced—insisting they have not eaten even if they have just finished a meal, insisting that they have bathed when they haven’t, etc.

Dementia care
Such changes are significant, say specialists in dementia care. Because early detection can lead to better care. What’s more “such symptoms should prompt a visit to a neurologist trained to diagnose dementias. Early intervention is important to identify the type of dementia and is paramount in delaying the progression of dementia,” says Dr Ratnavalli Ellajosyula, consultant neurologist and specialist in cognitive neurology, Manipal Hospital.

Doctors like Dr Ratnavalli also believe that healthier lifestyles—more exercise, more “social” bonding with loved ones, keeping the brain active through puzzles , eating simple, wholesome foods, etc–can help delay (and hopefully in future, even prevent) dementia. That is also the message this year from the Alzheimer’s and Related Disorders Society of India (ARDSI), a voluntary national body that works to create awareness on dementia. ARDSI and it’s local chapters, including the Bengaluru one, collaborates with hospitals in various cities to conduct awareness camps, memory screening clinics and so on.

Who will care for the caregiver?
Dementia care involves a host of healthcare professionals–cognitive neurologists, geriatric psychiatrists, nurses trained in dementia-care, neuropsychologists etc.

But most importantly, dementia concerns you and me, because it can happen to any family. To any one. And when it does, it involves people like my mother, and other nameless, faceless, selfless, caregivers. They are the ones who live with and care for, people like my father.

To help carers and the general public learn more, on Saturday, September 26, the Cognitive Neurology Clinic (CNC), Manipal Hospital, with the Annaswamy Mudaliar General Hospital (AMGH) and the Bengaluru chapter of ARDSI, has organised a free event on prevention/early detection, managing behavioural problems in dementia, healthy ageing, brain donation, etc. 

Date: Sept 26, 2015
Time: 5-7 pm
Venue: Annaswamy Mudaliar General Hospital
No. 1, Bourdillon Hospital,
Behind Mosque Road Empire Restaurant
Fraser Town  
Contact: 9538455077/9986228883

Keep this in mind
Remember, not every loss of memory or change in personality, is a sign of dementia, some of that is normal ageing or even a sign that something else (medically) is wrong. But if you are above 50 years of age or have a parent of that age or older, here are some handy tips to help with memory loss:
Stay organized (use sticky notes, jot down reminders on your phone etc.).
Pay attention and focus on the task at hand.
Unwind and try to de-stress.
Stay active (mentally and physically).
Most importantly, stay happy (stress-free) and do at least one activity that you enjoy everyday.
(Source: ARDSI/CNC Manipal Hospital)
Contact CNC on: 98450 05077/99862 28883

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