Myths impact on AD patients and create Dementia-friendly communities | Sunday Observer
Compassion, caring, patience, the three magical words - President, Lanka Alzheimer’s Foundation

Myths impact on AD patients and create Dementia-friendly communities

3 September, 2023

In a few days we will be observing World Alzheimer’s Day (WAD) which falls on September 21. The Sunday Observer spoke to President Lanka Alzheimer’s Foundation (LAF) Prof. Shehan Williams ahead of (WAD) to get a more accurate insight into AD and Dementia which continues to remain shrouded in myths and wrong beliefs, among some communities in Sri Lanka instead of supporting and encouraging them by adopting the right attitude towards those with Alzheimers and Dementia leading to unnecessary delays in early screening/treatment thus aggravating their condition.


Prof. Shehan Williams

Q. Alzheimer’s disease(AD) is a mysterious disease that continues to baffle scientists and researchers. I understand that in the past 15 years biomarkers (biological markers), including new brain-imaging techniques such as Positron Emission Tomography (PET) scans, and new methods to analyse cerebrospinal fluid have helped researchers to detect early changes in brain function in people with Alzheimer’s according to a recent study. Is this a step forward in solving some unsolved mysteries about AD?

A. Yes. There have been vast strides in identifying the changes of Alzheimer’s early. In fact, the changes in the brain come on many years before the disease begins to manifest itself. In this backdrop, the new drugs such as aducanumab and lecanemab that have been approved in recent months in the USA and the UK hold promise in reversing the changes even before the symptoms are identified. They are able to dissolve the extra-cellular amyloid plaques which is one of the main mechanisms in AD that contributes to eventual death of brain cells, leading to shrinking of the brain.

They give some hope but we are not clear whether these medicines have serious side effects or whether they will be able to reverse the symptoms of dementia. The costs of this treatment are very prohibitive at the moment.

Q. Another puzzle to scientists is that some parts of the brain seem to be more vulnerable to AD than the rest. What is your take on this?

A. Although the whole brain is affected in the later stages of the disease, in the initial stages it affects the temporal lobe of the brain and there is essentially atrophy in what is called the hippocampus. The hippocampus, which means a seahorse in Latin because of its shape, plays an important function in storing and consolidating short term memory into longer term memory. Hippocampal atrophy leads to the characteristic impairment of memory in AD, where recent events are forgotten as there is a problem in storing this information in longer term memory. The past memories, which have been saved before of course will be preserved in the initial stages,

Q. Another little known discovery that has now emerged from recent research is that chronic sleep deprivation can contribute to AD. True or false?

A. Sleep is important for the wellbeing of the brain. It is during sleep that the body does its housekeeping functions. The brain too heals itself during the sleep process. Lack of sleep particularly when it is chronic or prolonged can lead to the accumulation of free radicals and sub clinical inflammatory processes that can trigger AD at some point.

Q. Neurologists have opined that music can help AD patients by boosting their brain activity. Myth or fact?

A. Any activity that stimulates the brain is useful. Music in particular can be pleasant and enjoyable to the person concerned leading to stimulation in various parts of the brain. So, any activity that can be practically engaged in by a person with AD can help a person. Evidence has shown that Music therapy is beneficial and improves behavior disorders, anxiety and agitation in subjects diagnosed with dementia, and can be used to treat patients with dementia at any stage, even when cognitive deterioration is very severe.

Q. Are alcoholics at higher risk of getting AD ? If so, how?

A. There is clear evidence that alcohol is harmful to the brain. It can directly cause brain damage and shrinking of the brain. Alcohol related dementia and another form of dementia called Wernicke-Korsakov syndrome in alcohol dependent persons with vitamin B1 or Thiamine deficiency are well recognised. Alcohol causes liver disease; can cause damage to the pancreas leading to diabetes and also causes heart and cholesterol related complications. All these will eventually contribute to a higher risk of getting AD.

Q. Studies have also shown that women are more susceptible to AD than men? If so Why?

A. Women are around three times more susceptible to AD. No one is really sure as to why this is, although some hypothesise it is due to the changes that occur post menopause.

Q. There is a growing concern today among Health officials that younger people are now entering hospital with signs of dementia and AD. Is this something new? Why ?

A. In some people dementia can come on in their 50s or even 40s. There are particularly genetic or familial types of AD which account for AD at this early age. However, we need to investigate these persons extensively as there are certain types of dementia other than AD, sometimes treatable which can manifest in younger age such as Huntington’s disease, Wilson’s disease or normal pressure hydrocephalus.

Q. AD is often described as a silent disease with few and sometimes no early symptoms. Is this true? What are the earliest signs to watch out for?

A. Early identification of dementia is useful but in reality it is often missed as many people do not recognise the subtle symptoms that come on initially. The persons themselves may not realise or acknowledge them. As mentioned, the disease process starts many years before the symptoms manifest. The initial presentation can be very varied. Forgetfulness is not the only symptom. Often, you see subtle changes in judgement and personality. There can be social withdrawal, increased irritability or anger, inappropriate behaviours such as social disinhibition including sexual overtures, repetitive speech and mismanagement of money. Depression and psychosis where the person starts suspecting the neighbours or relations including the spouse and children of plotting against them can also be signs of AD.

Q. Do the symptoms of Alzheimer’s disease vary by the time of day?

A. ‘Sun downing’ is a term used for this. Persons with dementia particularly become confused towards evening and can show agitation and restlessness.

Q. Can this be reversed? If so, how ?

A. For now we do not have a way of reversing the condition although the new drugs that have come out seem to give some hope. What we can do at present is to prevent or delay its onset by healthy lifestyle choices.

Q. As I mentioned earlier, many myths and wrong ideas continue to swirl around Alzheimers and Dementia. What are the most common myths that surround AD and Dementia in our own country ?

A. The main reason is that there is very little understanding of this condition. Most people assume that old people become ‘cuckoo’ or crazy pissu as they age. Or they think it is due to some supernatural evil influence and take the person to various bogus healers, kattadiyas and charlatans and often waste a lot of money while aggravating the person’s mental condition as well. Some believe that the answer is to put such a person into a long term mental health facility or nursing home. They should be examined first by a qualified specialist and treated appropriately. These delays have led to stigma and prejudice as well as social isolation of such persons..

Q. Briefly summarise what the Lanka Alzheimer’s Foundation is doing and has done so far in curbing these false rumours which result in stigma and delays in early screening by educating the masses from grass root level on the actual facts.

A. The Lanka Alzheimer’s Foundation(LAF) advocates for persons with dementia and their caregivers. It provides information and advice for those with dementia and their carers in all three languages. It operates a model activity centre where evidence-based non pharmacological interventions are integrated to provide holistic day care to persons with dementia. The foundation also conducts an online career support group. Its community outreach programs conducted through community groups of elders and others inform and educate targeted populations on early identification and support of persons with dementia. Field clinics are conducted to screen for memory problems and those identified are referred for further care in their local hospitals. The ultimate aim of the foundation is to create dementia-friendly communities that support and accommodate persons with dementia and their carers.

Q. What about the Carers who work 24 hours and need a chance to relax ? Is there a place where they could relax for a few hours playing some games or chatting to one another?

A. The burden on the carer, often a family member, usually a spouse or daughter can be very challenging. The caregiver needs a lot of guidance and support. The carers themselves may get very distressed and depressed. Carer fatigue may set in. It is absolutely essential that the carer gets a break regularly and also is given the right information, guidance and support. Many carers feel guilty to avail themselves of a break and go out with friends or go on a holiday. They should be reassured that they need these breaks for their mental health so that they can remain healthy to serve the person with dementia.

Its community outreach programs conducted through community groups of elders and others inform and educate targeted populations on early identification and support of persons with dementia. Field clinics are conducted to screen for memory problems and those identified are referred for further care in their local hospitals. The ultimate aim of the foundation is to create dementia friendly communities that support and accommodate persons with dementia and their carers.

Q. Do you have a message for both the rumour mongers and those vulnerable to them ?

A. AD has no cure at present. We have to accept the condition and work towards enabling the person with dementia to live a full life as long as they can and support the caregiver in their endeavours. There is no ‘magical solution’ and as a community we need to become more compassionate, caring and patient and not consider a patient with dementia as being incapable before their time and disempower them from living well with their condition.

Q. Is there a contact number your association has if someone wants to reach you?

A. The Foundation can be reached on the information hotline 2667080 for information and support on dementia.