When I call to wish my father on his birthday, I usually say: “Happy birthday, Acha” (acha or achan means 'father' in Malayalam).
And always, my father replies: “Thank you, same to you”.
My father is nearly 84. He was once a lawyer. Now, birthdays don't matter to him. Nor do anniversaries, festivals, or any occasion, really. Today, he is a shell of the person he once was, physically and mentally. My father, you see, has dementia.
('de' meaning “without” and 'mentia' meaning “mind”) is actually a
misleading term. It does not mean the sufferer is insane or demented.
Rather, it is the term for a group of signs and symptoms associated
with a progressive loss of brain function--the sufferer's judgement,
memory, behaviour, language and daily living skills (washing, cleaning
oneself, brushing teeth etc.,) slowly deteriorate.
is a curious disease, people above 65 are more at risk. But while it is
age-related, it is not part of normal ageing. And it can happen to
people in their 30s, 40s and 50s, in rare cases. Dementia is said to
have various causes--Alzheimer's Disease, Parkinsons, a stroke, a brain
injury (caused by a head trauma, for instance), so on and so forth.
Alzheimer's Disease is the most common cause of dementia, but not the
only one. Also, doctors say an unhealthy lifestyle, no exercise,
excessive alcohol consumption, not actively using one's brain cells
(that is, by doing puzzles/crosswords, or reading/learning new
subjects/languages), no social contact (living an isolated life, no
contact with loved ones, etc.) are also risk factors. Look up http://dementia-care-notes.in/dementia/what-is-dementia/ to know more. (Dementia Care Notes
is probably the only comprehensive guide/resource base available in
India. Bengaluru-resident Swapna Kishore who has created the site, used
to be a caregiver herself. Now she runs it to help others.)
awareness of dementia is key, support systems are equally vital. In the
US, UK and Europe, there are specialised carehomes for people with
dementia. In fact, in the Netherlands, there is a village called Hogewey
which is an experimental facility or carehome. There, 152
residents (all people with dementia) live in groups of six in a small
community that is closed off to the outside world. “Residents are
allowed to freely roam the streets, sit in the sun, stroll in the rain
or enter each others' homes--the doors are always unlocked. Hogewey
offers freedom in a protected environment. Those who get lost are
brought home by carers....” says a report in Spiegel, a German weekly
news magazine. Read more at: http://www.spiegel.de/international/europe/dutch-village-for-elderly-with-dementia-offers-alternative-care-a-824582.html
Care at home, versus carehome
In India, no
such facilities exist though there are a few centres that cater to
people with dementia. The Nightingales Medical Trust runs one such in
Bengaluru--the Nightingales Centre for Ageing and Alzheimer's in
But such places are few. Most people with dementia are cared for at home, not in carehomes. And the carers or caregivers are usually other family members. In our case, my 72-year-old mother cares for my father. They live in Kozhikode, Kerala,
where thankfully, a strong support system exists. Also, being in a
small town such as Kozhikode makes things easier for my mother. When she
goes to teach Spoken English (she is a retired English professor), she
contacts an agency and a guard comes home to watch over my father, for
the time she is away. Apart from that, a woman comes in to help with the
housework, every day. And a carer comes home thrice a week to bathe, shave and clean my father.
Does your loved one have dementia?
am I talking about something that is essentially a private family
matter? Something that still carries a stigma in our society. Because
dementia affects everyone. When a loved one has dementia, he or she will
require care throughout their lifetime. And that is a huge challenge,
mentally, physically, emotionally and financially. Because my mother
looks after my father with courage and patience, my older sister and I
are able to focus on our families and careers. What makes us feel less
guilty about this fact is the undeniable truth that my father is
happiest in his own home. Because that is a familiar environment. There
he lives a routine that soothes him. He hates being in Bengaluru with me
or in Dubai with my sister.
India, there are many people like my father. According to the
Alzheimer's and Related Disorders Society of India (ARDSI), a voluntary
body, in 2010, there were an estimated 3.7 million Indians with
dementia. But the number is merely an 'estimate'. Given our enormous and
rapidly ageing population, there are probably many more people living
with dementia, across the country today. But do their families know? Are
they being treated and cared for?
How did we find out about my father's dementia? We knew something was wrong--he was spending a lot of money, every month. We realised he could not distinguish between, say, a Rs 100 note and a Rs 500 note. A visit to a neurologist gave us the diagnosis. That was 10 years ago.
if you have a loved one at home who is acting strangely, irrationally,
it could be a sign. If he or she is getting violent, forgetting faces,
forgetting his or her own name, unable to recognise you, becoming
suspicious, unable to carry out simple functions, etc, be alert.
Usually, the affected person will deny that anything is wrong, so
getting him or her to go to a doctor will be a challenge.
please perservere. Do not dismiss these worrying signs and symptoms as
'age-related' problems. Because dementia can affect anyone's family.
Next week: The difficulties in keeping track of a person with dementia.