The beginnings of dementia at a relatively young age or early onset dementia is medically termed as Young Onset Dementia (YOD). Usually occurring between the ages of 35-65, it causes cognitive disability and behavioural change.
According to Associate Professor Nagaendran of the National Neuroscience Institute, cognitive disability affects various parts of our thinking capacity and may manifest itself as difficulties with memory and execution abilities.
One of Professor Nagaendran’s patients, Thomas, was 52 when he was diagnosed with Young Onset Dementia. The secondary school teacher with tertiary education and the author of 2 chemistry textbooks started experiencing symptoms of forgetfulness in early 2018. He initially brushed the symptoms aside but concern grew when his wife started commenting on his carelessness such as not paying the household bills promptly. As difficulties with his memory persisted, he consulted his family doctor but was told that his symptoms were not likely related to dementia given that he was young.
Subsequently, incidents that happened at his workplace got him worried. On several occasions Thomas attended classes not assigned to him and during the mid-year examinations, he entered incorrect marks for his students. This time around, the neurologist who attended to him performed a battery of cognitive tests that signalled significant problems with his ability to store new information, as well as with tasks that required planning and sequencing. A brain scan further revealed shrinkage of his memory centre. A diagnosis of Young Onset Dementia, specifically that of Alzheimer’s disease was made.
Persons with YOD may also experience language difficulties such as forgetting the correct vocabulary, using the wrong words or pausing midway while trying to express themselves. The way one writes may also change, for example, making grammatical errors in writing and spelling, and having erratic writing.
Apart from cognitive impairment, a person with YOD may display behavioural change that differs from his/her usual personality. For instance, a person who is usually socially reserved becomes vocal all of a sudden and exhibits socially intimate behaviour out of the norm, such as kissing or hugging strangers. The loss of inhibitions may also cause one to forget social etiquette and behave inappropriately. Some may even become overly religious and almost fanatical by constantly quoting religious texts.
Before we all start thinking that we have dementia, Professor Nagaendran assures us that one needs to exhibit such behaviour almost daily for six months or more before we suspect that we have YOD.
What causes YOD?
A major cause is plaques and tangles in the brain, that develop in some individuals. Reduction of the blood flow to the brain is another important cause. This is often caused by an unhealthy lifestyle, with no exercise and poor eating habits which include a high-sugar, high-fat, high-salt diet. Poorly managed pre-existing medical conditions such as diabetes, high blood pressure, and cholesterol, may also lead to the negative changes to the blood vessels which compromises blood flow to the brain.
The problem is compounded if there is a genetic link. According to Professor Nagaendran, generally less than 5% of all dementia patients have a genetic basis whereas 25-30% of YOD cases tend to be genetically related, suggesting that others in the family aged 35-65 may be suffering similar symptoms.
Although YOD is an irreversible condition, if detected early, the progression rate can be slowed down with medical and non-medical means.
When a neurologist is consulted at the onset of the symptoms, tests can be carried out to determine the cause of YOD and progression of the disease, before prescribing medication. These tests include cognitive evaluations, blood tests and brain scans. To have a conclusive diagnosis of YOD, a PET Scan or a Spinal Tap (Lumbar puncture) may be needed for some patients. A genetic testing which includes a blood test may also be useful, especially when there is a family history of dementia. Pre and post-test counselling are also required, to help assess if the patient is able to emotionally handle the diagnosis.
Non-medical interventions would include cognitive stimulation such as doing things that are new and challenging to the brain. This could include new hobbies and activities tailored to the patient’s preference and in no way should it be stressful. Besides the use of medications to stabilise memory, Professor Nagaendran shares that Thomas keeps himself mentally stimulated by learning a new language, Malay in a nearby community centre. He also started a regular routine that includes exercise and time with friends.
How are the lives of persons with YOD affected?
Two years since the initial symptoms of forgetfulness, Thomas continues to teach but has since changed to a part-time status to allow more time for lesson preparation. Realising that over time he may not be able to teach, the sole bread-winner and a father to two teenagers is concerned over the welfare and comfort of his family. Financial difficulties, as well as conflicts with his children have resulted in low mood and anxiety.
According to Professor Nagaendran, there are many social consequences especially for those in the younger age group of 35 onwards. The consequences are three fold:
- The loss of employment due to dementia and the potential financial difficulties. Most persons with YOD long for gainful employment as many of them are forced to give up their jobs due to their condition. They often end up in simple jobs where routine is key. Although working gives them a sense of purpose, it is not easy to accept this lifestyle change.
- Persons with YOD who have young children face family conflicts that stem from their young children’s inability to understand their parent with YOD. Their children may also experience depression and other mental health issues.
- Persons with YOD may unknowingly commit misdemeanours, shoplifting in particular. Due to the lack of awareness of YOD, the public is less forgiving of younger persons with YOD as compared to elderly with dementia. When facing prosecution, Doctors are often called on to explain their condition before they are let off.
How to support someone with YOD?
Caregivers play a crucial role in ensuring the safety of persons with YOD. As advised by Professor Nagaendran, it is important not to restrict or lock them up out of fear that they may wander off and forget their way home. Instead allow them to step out but keep a watchful eye on them.
Caregivers and family members of persons with YOD are offered counselling at NNI on how to support persons with YOD. Families are also referred to Social Services for advice on the available resources.
There are support groups dedicated for persons with YOD and their caregivers. Professor Nagaendran shares that by being part of a support group, Thomas and his wife were able to cope better and learn from the experiences and challenges faced by others in similar situation.
Being diagnosed with dementia at a young age is a hard pill to swallow. But to Thomas, he shared that as long as his wife is with him, he will be alright.
If you need help or more information, please log onto www.nni.com.sg.
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The writer was formerly an Editor of Today’s Parents. Her works have appeared in The Straits Times, Singapore Tatler, Female, Her World and Food and Travel.