World Alzheimer’s Day falls today
Imagine waking up one day and not being able to recognise your family, their names or even where you are. This is what a person with Alzheimer’s disease lives with daily. Identified as one of the causes of Dementia, Alzheimer’s could be treated and delayed in certain instances, but never be cured. Dementia is the progressive loss of the powers of the brain. Hence the most common types of Dementia are Alzheimer’s disease and Vascular Dementia. These diseases damage and kill brain cells, so that the brain can’t work at its optimum level.
Having volunteered to work with people diagnosed with Alzheimer’s disease for the past 18 years, Lorraine Yu, Founder and President of Lanka Alzheimer’s Foundation (LAF) has been an inspiration to the society. In view of World Alzheimer’s Day, which falls today (September 21), the Daily Mirror visited the Lanka Alzheimer’s Foundation in Maradana.
“Every possible place should be ‘Dementia-friendly” - Lorraine Yu
“Lot of people think that we run a rich organisation and have foreign donor agencies backing us,” says Lorraine Yu, LAF’s Founder and President. “I was shown this property in December 2002 and I felt that 2/3rds of my battle was won because I only had to find people and start the centre. I faced many challenges at the inception because many people didn’t believe in me and they thought I was a scam. Hence I had to deliver to the people, prove myself and earn credible presence in the community. There’s very little awareness about Alzheimer’s and dementia since they are age-related diseases. Supporting the elderly isn’t fashionable and unfortunately the elderly population has become the ‘forgotten lot.’ Ageing is inevitable and with age the risk of you getting dementia is higher. This isn’t a normal feature of aging. All non-communicable diseases such as diabetes, hypertension and depression could increase your risk of being diagnosed with dementia. We are trying to educate younger people in the community. If you had diabetes in your family then you have to be mindful about it in your younger age because you may have distanced diabetes, which is a risk factor. High blood pressure may give rise to strokes which cause the second-most common form of dementia known as Vascular Dementia. The most common cause of dementia is Alzheimer’s disease. With regard to Alzheimer’s we don’t have a cure. And during the latter stages of this disease the patient totally depends on close associates.
The lack of understanding makes it more challenging for the caregiver,”explained Yu.
Lorraine further said that if someone inquires the time from you about 10 times that definitely is a sure sign of dementia. “Repetitiveness is due to loss of short term memory and they aren’t doing it intentionally to annoy you. But there are family members who will shout at them for asking something repeatedly. There’s no purpose in being hard on them and once they get scolded they feel sad and frustrated because they know they have a problem. People shouldn’t judge those with dementia because there are some people who will be arrogant and insulting.
We have to make every possible place a ‘Dementia friendly’ venue. As service providers we have to educate people about dementia, so that they know how to provide a service without being judgmental. Those who suffer from dementia should always make sure that they are going to a safe, secure and non-judgmental environment. If they don’t have that confidence they will try to isolate themselves. Hence the caregiver too gets isolated. The LAF is there to direct support. We know that there are so many people out there who still haven’t reached us. We come across incidents where people have wandered off and gone missing. So when I come across such a person I phone the family because they have never contacted us,”said Yu.
We are focused on educating people around the island. In addition to that we also conduct memory screening and assessments for those who are experiencing difficulties with memory and reasoning abilities. Assessments are available in both Sinhala and English
A collection of art done by the 'clients'
Speaking about the services offered to its ‘clients’ (as described by Lorraine) she said that as part of the world body, they aren’t supposed to provide direct services. “We play an advocacy role to speak to policy makers and stakeholders about making a change. 60% of people who have dementia have a tendency to wander and we provide them with an Identification bracelet which is hypo-allergenic, water and sweat resistant. We are focused on educating people around the island. In addition to that we also conduct memory screening and assessments for those who are experiencing difficulties with memory and reasoning abilities. Assessments are available in both Sinhala and English and would last approximately 30 minutes. We also have an activity centre which is open from 9am to 4pm on Mondays and Wednesdays, where the clients can engage in reminiscence therapy, music sessions, gentle exercises, arts and crafts, cooking, letter writing etc. These activities provide stimulation socially, mentally and physically. In addition to that we do counseling and educate family members on understanding dementia, the progression of the disease and information on successful, stress-free caregiving,” she said.
When we walked through the corridors at LAF a group of clients were engaged in a music session. Another was playing carom with a volunteer. The Centre is set in a warm, welcoming and tranquil environment providing specialized care for the clients.
Volunteers and funds
The LAF solely relies on funds given by donors and well-wishers. If a client walks in, the services are absolutely free-of-charge, but there’s a registration form. The model of this Centre is not that of a day-care centre. It’s a home for them and they enjoy getting together with others. The success story of LAF is dedicated to its volunteers who enjoy spending time with the clients. Alnaaz Esufally is one of them who has been volunteering for over a year and half. Speaking to the Daily Mirror she said that it’s quite an enriching experience to spend time with them. Dementia and Alzheimer’s could affect anyone across all borders. You can be clever and wealthy, but the disease is unavoidable and at one point you become helpless. People at home have to attend to their daily needs and when family members need a break we are there to help. I do very little for them, but it has made me a happier person. Every Friday I visit LAF and I’m planning to come regularly. We sing, paint and dance with them and try to make their Friday a happening one. I would like to request from those interested to please come and be a part of this experience and help people who have no expectations,”said Alnaaz Esufally.
We have to train doctors as well as nurses because the caregiver has a bigger role to play in this situation. The issue at hand is that most people with Alzheimer’s disease are being taken care of by relatives who don’t have adequate training
Dearth of geriatricians in Sri Lanka
Although Sri Lanka is experiencing a boom in the ageing population, little has been done to offer a hand for active ageing. Hence, they are vulnerable to conditions such as dementia and Alzheimer’s disease. Speaking to the Daily Mirror, Prof. Chandrika Jayasinghe, Professor in Medicine at the University of Peradeniya, said that there’s a dearth of geriatricians in Sri Lanka. “Although there are people who have studied geriatric medicine there’s a dearth in Board Certified Geriatric consultants. Therefore, there’s an issue in addressing the root causes of the issue. This is an urgent need and I believe that there are several postgraduate programmes in gerontology and geriatric medicine which is a good sign. We have to train doctors as well as nurses because the caregiver has a bigger role to play in this situation. The issue at hand is that most people with Alzheimer’s disease are being taken care of by relatives who don’t have adequate training. Therefore there could be certain weaknesses in the caregiving process. If the elderly population isn’t taken care of, we will have an equally high disabled population because people with Alzheimer’s have a tendency to meet with accidents which could cause physical harm as well. Therefore a policy decision has to be taken to improve the process of active ageing. ” Prof. Jayasinghe said.
Repetitiveness is due to loss of short term memory and they aren’t doing it intentionally to annoy you. But there are family members who will shout at them for asking something repeatedly. There’s no purpose in being hard on them
When asked about the situation in rural areas Prof. Jayasinghe said that in rural communities, the family unit is tightly knit. “But in Colombo and suburbs, children have a tendency to leave their parents and migrate. Hence parents grow old and in case they have Alzheimer’s disease the matter would be worse. On the contrary, in rural communities we can be sure that at least one person would remain with the patient,”said the professor.
-Pics by KushanPathiraja
Reducing risks of Dementia
Dementia has been identified as the fourth biggest killer after diseases like strokes and cancer. As life expectancy increases, there will be older people and many more people suffering from dementia. By 2050 it is estimated that there will be approximately half a million people with dementia in Sri Lanka. In order to reduce risks of dementia several things could be done:
- Follow a healthy diet: A brain-healthy diet is one that reduces the risk of heart disease, diabetes and encourages good blood flow to the brain. Studies have shown that a high intake of leafy vegetables would reduce the risk of Alzheimer’s disease by 55%.
- Challenge your brain: Activities that need mental energy such as reading, playing board games, doing crosswords or puzzles may help reduce risk of dementia.
- Be physically active: Regular physical activity helps the blood flow to the brain. Studies show that people who exercise three or more times a week have a 30% - 40% lower risk of developing dementia.
- Enjoy social activities: Having an extensive social network seems to protect against dementia. Therefore keep in touch with friends and family, get involved in your community, volunteer or join an activity group.
Information courtesy :http://alzlanka.org/
(If you know of anybody with Alzheimer’s, dementia or other memory problems please contact the Lanka Alzheimer’s Foundation on 0112 667 080 or visit them at No. 110, Ketawalamulla Lane, Colombo 10.)