On September 21, the focus will once again be on a health issue that is increasingly becoming a matter of concern to health authorities who now agree that while there is still no cure for Alzheimer’s Disease, its onset can be delayed and progression prevented from worsening with early screening and treatment of patients.
The Sunday Observer spoke to the President of Lanka Alzheimer’s Foundation, Professor Shehan Williams to get more insights into this troubling subject that has long been sidelined.
Q. In four days time the world will once again focus its attention on Alzheimer’s disease(AD) and Dementia. What exactly are these diseases? Are they the same?
A. Dementia is the overarching term used to describe a decline in cognitive function usually manifested as memory loss and impaired ability to think and act as before. It is not a consequence of normal ageing as people can live without significant memory or other cognitive impairment beyond a hundred years if they are not affected by this disease.
The commonest cause of dementia today is Alzheimer’s disease(AD). It is a degenerative disease of the brain that sets in gradually eventually leading to dementia. According to epidemiological studies it is said to account for 50-70 percent of all dementias. Other conditions leading to dementia are vascular dementia, Parkinson’s disease related dementia, brain injury, brain tumours, normal pressure hydrocephalus, chronic renal and liver disease, certain vitamin deficiencies, and alcohol related dementia, infections such as HIV and syphilis and dementia due to endocrine issues such as hypothyroidism.
Q. Is smoking a contributory cause ?
A. Smoking is well established as a toxin to the whole body including the brain. Smoking contributes significantly to atherosclerosis or damage to blood vessels in the body due to atheromatous plaque formation. The brain is highly dependent on oxygen. Even a blockage to the smallest vessels to the brain can compromise the oxygen supply to the brain. Big blockages result in strokes – which manifest as sudden weakness or loss of consciousness. Strokes result in permanent paralysis and disability and even death. What is lesser known is the impact of minor strokes knows as micro infarcts that are common in smokers. Both strokes and micro infarcts result in death of brain cells and lead to dementia. This particular dementia is what we call vascular dementia.
Q. What about excessive alcohol?
A. Excessive alcohol is clearly harmful to the brain. Long term alcohol use leads to shrinking of the brain due to loss of brain cells because of its direct toxicity. There are various other mechanisms such as depletion of vitamins in the body due to alcohol. A deficiency of vitamin B1 or Thiamine is well established in long term alcohol use. Thiamine deficiency can lead to a condition called Wernicke’s encephalopathy when the person becomes confused with altered consciousness. If this deficiency is not rectified immediately it could lead to a condition called Korsakov’s syndrome where a person develops permanent memory problems where new learning is affected.
Q. Pre-existing non communicable diseases (NCDs) like diabetes, hypertension and cardiac problems in patients – If poorly managed can they lead to dementia?
A. Vascular risk factors, particularly poor control of blood pressure, diabetes mellitus and cholesterol levels are implicated in most forms of dementia. These diseases contribute to poor blood supply to the brain due to their long term effects on the brain when not properly treated. Therefore, it is of utmost importance that people take proper treatment for blood pressure, diabetes and hypercholesterolaemia as neglect of these conditions will not only result in strokes, kidney failure and heart disease but also dementia.
Q. Do you see an upward curve in the number of dementia cases being reported country wide?
A. Yes certainly. There are two main reasons for this. First, with increasing awareness of dementia, more and more people are seeking help. Secondly, people are living longer and the number of older persons is increasing by the day. The predictions are that by 2036 every fifth person in the country will be over 60 years. So, it is not surprising that we will be having ever increasing numbers of people with dementia.
Q. What about the unreported cases where many patients are still hidden inside their homes with treatment by families who are still holding on to myths and wrong ideas about the causes of these diseases?
A. Yes. Research shows that most people currently living with dementia have not received a formal diagnosis. Even in so-called developed countries, only 20-50% of dementia cases are diagnosed. This ‘treatment gap’ is certainly much greater in countries like Sri Lanka.
Q. How do you know if a person has Alzheimer’s or dementia? What are the early symptoms?
A. The changes can be very subtle initially and can be mistaken for normal forgetfulness. Yes, all of us forget and should not start worrying each time we misplace something or forget someone’s name or a familiar place. However, if someone keeps misplacing things consistently or forgetting recent events or repeating the same thing over and over again it could be an early sign of dementia. Similarly, a decline in judgment in dealings with others, including financial matters, can be a sign. You should not rush into any conclusion however, before an assessment by a doctor with some expertise in dementia.
Q. Age-wise, who are most vulnerable to developing Alzheimer’s and dementia?
A. The older we are, the higher the risk of dementia. If we live till 90 years we have a one in three chances of getting the disease.
Q. Gender wise are men or women more likely to develop AD?
A. Women have a three-fold higher chance of getting AD, although this may not be the case in other forms of dementia such as vascular dementia or alcohol related dementia.
Q. Is it necessary for the final diagnosis to be made by a specialist in the field?
A. It is best for a specialist such as a Neurologist, Psychiatrist or a Geriatrician to make the diagnosis as there are many causes of dementia and the person may have to undergo a careful assessment which includes certain tests.
Q. Are there different stages in the progression of dementia?
A. Dementia is usually classified as mild, moderate and severe. There is also a pre-dementia stage called mild cognitive impairment (MCI). The progression of the disease can be very variable. There are many persons with dementia who manage well in the mild stages of the disease for many years. They remain independent and lead active lives even driving, shopping and cooking on their own or with some minor assistance.
Q. Is Alzheimer’s and dementia curable or reversible ?
A. A cure for AD has still not been found although some new drugs like Aducanumab and Lecanamab appear to have some effect on reversing the progression and have been termed the first disease modifying drugs for AD.
There are also other forms of dementia such as normal pressure hydrocephalus which can be reversed by surgical intervention.
Q. If screened and treated early can its progression be at least controlled or managed?
A. There are certain medicines called Acetylcholinesterase inhibitors, namely Donepezil and Rivastigmine which can delay the decline in mild to moderate AD. Another drug called Memantine is useful in moderate to severe AD. Beyond medicines, an early diagnosis will help introduce physical and mental activities that can help delay functional deterioration. Furthermore, the patient and the family can plan for the future and make appropriate arrangements for care.
Q. Challenges you face?
A. Management of risk is a major concern. Often a person with dementia is vulnerable to exploitation and abuse. Financial exploitation is a concern where persons who win the confidence of a person with dementia can misappropriate money from them. Similarly, a person with dementia could get lost while on a walkabout alone.
Q. Yoga, mild exercise, reading, crocheting and engaging in easy life skills are some solutions offered to patients. What’s your take on this?
A. Persons with dementia should keep themselves active, doing things they enjoy as well as taking on new pursuits that will keep them stimulated. All the above can be useful depending on each person’s physical fitness and prior interest.
Q. The theme for World Alzheimer’s month 2023 is “ Never too early, never too late”. What is its significance?
A. The campaign slogan emphasises that it is ‘Never too early, never too late’ to learn about dementia and take steps to prevent its onset and progression.
Q. As you are the President of the Alzheimer’s Foundation of Sri Lanka, tell us briefly why it was started and how far you have progressed in achieving the goals you set out initially?
A. The Lanka Alzheimer’s Foundation is the only organisation solely dedicated to the cause of dementia in Sri Lanka. It was incorporated in 2001 to ‘to improve the quality of life of those with Alzheimer’s and related dementias and enhance the well-being of their families and carers’. Lorraine Yu, a co-founder dedicated 20 years of her life to raise funds for the Foundation. She established a state of the art activity and resource centre in Maradana in 2011, developed resource material in all three languages and mobilised volunteers to carry out activities for elders with dementia. Regular media and advocacy programs were conducted with an annual ‘Memory walk’ and ‘run to remember’. We have succeeded in creating greater awareness in Sri Lanka and providing care and information to numerous persons with dementia and their family caregivers. We are also a training and resource centre for doctors, medical students, psychologists, speech and language therapists and researchers.
Q. Dementia is a disease that requires a 24-hour duty. What has your Foundation done to help ease that huge burden on the Caregiver?
A. It is important to get away from the idea that all persons with dementia need full time care. Persons with dementia can live independently for many years as the condition often progresses slowly. With the right support and guidance many persons with dementia and their family carers are able to achieve this. The Foundation provides information and counselling on supporting patients and families in this journey and conducts Carer support groups. Anyone interested, can join our group via zoom. We have also started community outreach activities to support persons with dementia in their homes.
Q. Do you believe that home care is better for patients than placing them in an institution?
A. Of course, keeping the person in their familiar surroundings and as independent as possible with those near and dear to them is the most beneficial.
The home is always best and should be encouraged. However, as the condition progresses and when it becomes dangerous for the person to be in their homes alone, with working children and others overseas, institutional care becomes the only option.
Q. What is your message to the public on protecting themselves from AD?
A. Be active both mentally and physically. Eat healthy, try to maintain a normal body mass index and make sure you keep your blood pressure, cholesterol and blood sugar in good control.
Sleep well, avoid stress and be socially connected and engaged.