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Reaching out to silent sufferers

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Predicament of Alzheimer’s patients during COVID-19

By Rochelle Palipane Gunaratne

While to us, who are in a frame of mind to reason, make constructive choices and go about our usual business, the current situation seems overwhelming, one cannot fathom the fear and anxiety faced by scores of individuals suffering from dementia. Kelaniya University, Faculty of Medicine, Professor in Psychiatry and Consultant Psychiatrist, Lanka Alzheimer’s Foundation (LAF), President, Dr. Shehan Williams laid bare the dire straits of patients and caregivers due to COVID-19 and the manner in which the suffering can be alleviated to a certain degree in order to mitigate the continuing direct and indirect adverse repercussions of the pandemic. We must reform and better integrate our health and social care systems so that they provide quality care for people affected by dementia and are resilient against future catastrophic events.

 

Tested to the limit

 

According to the recent Alzheimer’s society global report, a study conducted in the west, showed that people with dementia accounted for the biggest spike in excess deaths. Even without including deaths attributed to the Coronavirus, twice the number of people with dementia died at the pandemic’s peak, compared to what would normally be expected.

The challenges presented by dementia itself may also have contributed to difficulties in stopping the spread of the virus. A person living with dementia who has memory problems or confusion may struggle with the guidelines and rules introduced to reduce the risk of infection by the Coronavirus. Measures such as frequent hand washing and social distancing to reduce the risk of catching the disease may be hard for some people with dementia to follow.

We have also heard from care professionals and people affected by dementia that isolation, depression, and not understanding why loved ones are no longer visiting could have contributed to a loss of skills, independence and, ultimately, premature deterioration in their dementia. This could include losing the ability to speak and communicate their symptoms, or even stopping eating and drinking, leading to a greater number of deaths among people with dementia.

The findings also show that the most common symptoms that people living with dementia reported during lockdown were difficulty concentrating (48%), memory loss (47%), and agitation or restlessness (45%). The most common symptoms that carers reported in their loved ones with dementia were memory loss (54%), difficulty concentrating (47%), agitation/restlessness (49%) and stress or depression (46%).

Another possible explanation for the increased morbidity and mortality in persons with dementia is that when health service resources were tightly stretched, people with dementia were not prioritised for treatment and care. Given that diagnosis of health problems in people with dementia can be particularly complex, it is possible that more remote working by GPs and primary care teams made it harder for people with dementia to get help when they needed it.

Tragically, the effects of the pandemic go beyond this terrible death toll. I have seen and heard the devastating impact of social isolation on people with dementia. Without family and friends able to visit, people’s symptoms have worsened much more quickly and connections to their loved ones, sadly even those who play a vital caring role, have been lost. And it is not just people with dementia who are affected. A distressing picture is the impact on those often overlooked – the army of unpaid carers, struggling to care round the clock for their loved ones, exhausted and ‘burnt out’ with nowhere else to turn.

The task of addressing an issue as complex as dementia in these unprecedented times seems daunting, nevertheless it cannot be shelved as the respect and dignity given to dementia sufferers and the support rendered to all concerned is vital as they continue to be the hardest hit in these tragic circumstances.

 

Window of opportunity

 

The devastating impact of COVID-19 on people affected by dementia cannot be undone. However, there is now a window of opportunity for action to mitigate against further effects of the virus and to help those who are recovering.

People affected by dementia have experienced significant harm from the restrictions to social contact and reduction in services over this period. Decision makers at all levels must recognise that informal carers are an integral part of the care system and social contact to people with dementia is invaluable, and give these due priority.

The government needs to set out a clear strategy to enable people, affected by dementia, to recover from the effects of the pandemic, inclusive of rehabilitation to counteract effects on cognitive or physical functioning, support for mental and physical health, and speech and language therapy.

Recognising the key role that informal carers play in the lives of people living with dementia, the government must take action to support people in this role.

COVID-19 has exposed how our fragmented social care system fails to support people with dementia. The need for social care reform is clear and urgent; it must be addressed within this parliamentary term. We know that it will be impossible to put in place an entirely new social care system overnight.

However, we must put in place the necessary strong foundations now. The social care crisis is a dementia crisis, specially since people with dementia are estimated to rise from around 200,000 currently to around half a million as Sri Lanka’s population ages in the coming years. Therefore it is essential that their needs are given priority, by providing love and company, helping with eating, keeping cognitive and communication skills sharp, grooming and recreation and also advocacy and timely detection of changes in health. The Alzheimer’s report also suggests that without visitors or excursions, patients will feel more lonesome and bored and this may be expressed through agitated behaviour or social withdrawal. Also, the lack of physical activity may lead to loss of strength and the lack of cognitive stimulation may lead to greater cognitive decline.

The Lanka Alzheimer’s Foundation (LAF) offers personalised support to anyone with dementia, their carers, families and friends and it connects people to a whole range of dementia support, by phone, online and face-to-face (when safe to do so). It’s free and puts them in touch with Dementia Advisers who offer the support they need, from local help to telephone and online advice.



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Strong on vocals

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The group Mirage is very much alive, and kicking, as one would say!

Their lineup did undergo a few changes and now they have decided to present themselves as an all male group – operating without a female vocalist.

At the helm is Donald Pieries (drums and vocals), Trevin Joseph (percussion and vocals), Dilipa Deshan (bass and vocals), Toosha Rajarathna (keyboards and vocals), and Sudam Nanayakkara (lead guitar and vocals).

The plus factor, where the new lineup is concerned, is that all five members sing.

However, leader Donald did mention that if it’s a function, where a female vocalist is required, they would then feature a guest performer.

Mirage is a very experience outfit and they now do the Friday night scene at the Irish Pub, in Colombo, as well as private gigs.

 

 

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Dichotomy of an urban-suburban New Year

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Ushered in by the ‘coo-ee’ of the Koel and the swaying of Erabadu bunches, the Sinhala and Tamil New Year will dawn in the wee hours of April 14. With houses to clean, preparation of sweetmeats and last-minute shopping, times are hectic…. and the streets congested.

It is believed that New Year traditions predated the advent of Buddhism in the 3rd century BC. But Buddhism resulted in a re-interpretation of the existing New Year activities in a Buddhist light. Hinduism has co-existed with Buddhism over millennia and no serious contradiction in New Year rituals are observed among Buddhists and Hindus.

The local New Year is a complex mix of Indigenous, Astrological, Hindu, and Buddhist traditions. Hindu literature provides the New Year with its mythological backdrop. The Prince of Peace called Indradeva is said to descend upon the earth to ensure peace and happiness, in a white carriage wearing on his head a white floral crown seven cubits high. He first plunges, into a sea of milk, breaking earth’s gravity.

The timing of the Sinhala New Year coincides with the New Year celebrations of many traditional calendars of South and Southeast Asia. Astrologically, the New Year begins when the sun moves from the House of Pisces (Meena Rashiya) to the House of Aries (Mesha Rashiya) in the celestial sphere.

The New Year marks the end of the harvest season and spring. Consequently, for farming communities, the traditional New Year doubles as a harvest as well. It also coincides with one of two instances when the sun is directly above Sri Lanka. The month of Bak, which coincides with April, according to the Gregorian calendar, represents prosperity. Astrologers decide the modern day rituals based on auspicious times, which coincides with the transit of the Sun between ‘House of Pisces’ and ‘House of Aries’.

Consequently, the ending of the old year, and the beginning of the new year occur several hours apart, during the time of transit. This period is considered Nonegathe, which roughly translates to ‘neutral period’ or a period in which there are no auspicious times. During the Nonegathe, traditionally, people are encouraged to engage themselves in meritorious and religious activities, refraining from material pursuits. This year the Nonegathe begin at 8.09 pm on Tuesday, April 13, and continues till 8.57 am on 14. New Year dawns at the halfway point of the transit, ushered in bythe sound of fire crackers, to the woe of many a dog and cat of the neighbourhood. Cracker related accidents are a common occurrence during new year celebrations. Environmental and safety concerns aside, lighting crackers remain an integral part of the celebrations throughout Sri Lanka.

This year the Sinhala and Tamil New Year dawns on Wednesday, April 14, at 2.33 am. But ‘spring cleaning’ starts days before the dawn of the new year. Before the new year the floor of houses are washed clean, polished, walls are lime-washed or painted, drapes are washed, dried and rehang. The well of the house is drained either manually or using an electric water pump and would not be used until such time the water is drawn for first transaction. Sweetmeats are prepared, often at homes, although commercialization of the new year has encouraged most urbanites to buy such food items. Shopping is a big part of the new year. Crowds throng to clothing retailers by the thousands. Relatives, specially the kids, are bought clothes as presents.

Bathing for the old year takes place before the dawn of the new year. This year this particular auspicious time falls on April 12, to bathe in the essence of wood apple leaves. Abiding by the relevant auspicious times the hearth and an oil lamp are lit and pot of milk is set to boil upon the hearth. Milk rice, the first meal of the year, is prepared separate. Entering into the first business transaction and partaking of the first meal are also observed according to the given auspicious times. This year, the auspicious time for preparing of meals, milk rice and sweets using mung beans, falls on Wednesday, April 14 at 6.17 am, and is to be carried out dressed in light green, while facing east. Commencement of work, transactions and consumption of the first meal falls on Wednesday, April 14 at 7.41 am, to be observed while wearing light green and facing east.

The first transaction was traditionally done with the well. The woman of the house would draw water from the well and in exchange drop a few pieces of charcoal, flowers, coins, salt and dried chillies into the well, in certain regions a handful of paddy or rice is also thrown in for good measure. But this ritual is also dying out as few urban homes have wells within their premises. This is not a mere ritual and was traditionally carried out with the purification properties of charcoal in mind. The first water is preferably collected into an airtight container, and kept till the dawn of the next new year. It is believed that if the water in the container does not go down it would be a prosperous year. The rituals vary slightly based on the region. However, the essence of the celebrations remains the same.

Anointing of oil is another major ritual of the New Year celebrations. It falls on Saturday, April 17 at 7.16 am, and is done wearing blue, facing south, with nuga leaves placed on the head and Karada leaves at the feet. Oil is to be applied mixed with extracts of Nuga leaves. The auspicious time for setting out for professional occupations falls on Monday, April 19 at 6.39 am, while dressed in white, by consuming a meal of milk rice mixed with ghee, while facing South.

Traditionally, women played Raban during this time, but such practices are slowly being weaned out by urbanization and commercialisation of the New Year. Neighbours are visited with platters of sweetmeats, bananas, Kevum (oil cake) and Kokis (a crispy sweetmeat) usually delivered by children. The dichotomy of the urban and village life is obvious here too, where in the suburbs and the village outdoor celebrations are preferred and the city opts for more private parties.

 

 

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New Year games: Integral part of New Year Celebrations

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Food, games and rituals make a better part of New Year celebrations. One major perk of Avurudu is the festivals that are organised in each neighbourhood in its celebration. Observing all the rituals, like boiling milk, partaking of the first meal, anointing of oil, setting off to work, are, no doubt exciting, but much looked-forward-to is the local Avurudu Uthsawaya.

Avurudu Krida or New Year games are categorised as indoor and outdoor games. All indoor games are played on the floor and outdoor games played during the Avurudu Uthsava or New Year festival, with the whole neighbourhood taking part. Some of the indoor games are Pancha Dameema, Olinda Keliya and Cadju Dameema. Outdoor games include Kotta pora, Onchili pedeema, Raban geseema, Kana mutti bindeema, Placing the eye on the elephant, Coconut grating competition, Bun-eating competition, Lime-on-spoon race, Kamba adeema (Tug-o-War) and Lissana gaha nageema (climbing the greased pole). And what’s an Avurudhu Uthsava sans an Avurudu Kumari pageant, minus the usual drama that high profile beauty pageants of the day entail, of course.

A salient point of New Year games is that there are no age categories. Although there are games reserved for children such as blowing of balloons, races and soft drinks drinking contests, most other games are not age based.

Kotta pora aka pillow fights are not the kind the average teenagers fight out with their siblings, on plush beds. This is a serious game, wherein players have to balance themselves on a horizontal log in a seated position. With one hand tied behind their back and wielding the pillow with the other, players have to knock the opponent off balance. Whoever knocks the opponent off the log first, wins. The game is usually played over a muddy pit, so the loser goes home with a mud bath.

Climbing the greased pole is fun to watch, but cannot be fun to take part in. A flag is tied to the end of a timber pole-fixed to the ground and greased along the whole length. The objective of the players is to climb the pole, referred to as the ‘tree’, and bring down the flag. Retrieving the flag is never achieved on the first climb. It takes multiple climbers removing some of the grease at a time, so someone could finally retrieve the flag.

Who knew that scraping coconut could be made into an interesting game? During the Avurudu coconut scraping competition, women sit on coconut scraper stools and try to scrape a coconut as fast as possible. The one who finishes first wins. These maybe Avurudu games, but they are taken quite seriously. The grated coconut is inspected for clumps and those with ungrated clumps are disqualified.

Coconut palm weaving is another interesting contest that is exclusive to women. However men are by no means discouraged from entering such contests and, in fact, few men do. Participants are given equally measured coconut fronds and the one who finishes first wins.

Kana Mutti Bindima involves breaking one of many water filled clay pots hung overhead, using a long wooden beam. Placing the eye on the elephant is another game played while blindfolded. An elephant is drawn on a black or white board and the blindfolded person has to spot the eye of the elephant. Another competition involves feeding the partner yoghurt or curd while blindfolded.

The Banis-eating contest involves eating tea buns tied to a string. Contestants run to the buns with their hands tied behind their backs and have to eat buns hanging from a string, on their knees. The one who finishes his or her bun first, wins. Kamba adeema or Tug-o-War pits two teams against each other in a test of strength. Teams pull on opposite ends of a rope, with the goal being to bring the rope a certain distance in one direction against the force of the opposing team’s pull.

Participants of the lime-on-spoon race have to run a certain distance while balancing a lime on a spoon, with the handle in their mouths. The first person to cross the finish line without dropping the lime wins. The sack race and the three-legged race are equally fun to watch and to take part in. In the sack race, participants get into jute sacks and hop for the finish line. The first one over, wins. In the three-legged race one leg of each pair of participants are tied together and the duo must reach the finish line by synchronising their running, else they would trip over their own feet.

Pancha Dameema is an indoor game played in two groups, using five small shells, a coconut shell and a game board. Olinda is another indoor board game, normally played by two players. The board has nine holes, four beads each. The player who collects the most number of seeds win.

This is the verse sung while playing the game:

“Olinda thibenne koi koi dese,

Olinda thibenne bangali dese…

Genath hadanne koi koi dese,

Genath hadanne Sinhala dese…”

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