Life overturned by Young-Onset Dementia

4/24/2024 5:36:00 PM | NeusLink Newsletter

The article is contributed/written by National Neuroscience Institute

After many years of marriage, secondary school sweethearts Andi Bin Ahemad and Norizyati Binte Sidek, both 50, are still the starry-eyed lovers they were in their youth. But there is one big difference now – Andi has dementia.

Andi and Norizyati have always enjoyed going on breakfast dates at their nearby coffee shop. But a couple of years ago, Norizyati realised that something was wrong when Andi paid for their breakfast twice. Later that night, he kept repeating that he wanted to eat.

Andi had also noticed a series of odd events such as making simple mistakes at work, not being able to find the right words in a conversation and getting frustrated easily.

After seeing different doctors and going through multiple tests, Andi was diagnosed with young onset Lewy body dementia at just 48 years old. This type of dementia is caused by abnormal deposits of protein on the brain.

Working with dementia

Andi used to be an aerospace engineer but the dementia made it difficult to cope with the demands of his job, which required him to climb up and down the aircraft to assess various parts of the plane.

Thankfully, Andi’s company was very understanding. “They changed my position so that I now do safer and easier tasks, like packing of aircraft components.”

Andi’s positive mindset has helped him accept this unexpected turn in his career and his family has also had to adapt.

A strong and supportive wife

Previously, Andi made all the important decisions but he has handed this over to Norizyati and their son.

“In the past, I used to depend on him for every single thing. Now, I have to take over that role,” said the home-maker of over 10 years.

As his main caregiver, Norizyati has learnt what to do when Andi has aggressive meltdowns, which have included punching the wall in anger – she responds with patience, giving him time and space to cool down. She also helped him overcome a stammer, encouraging him to keep talking and to ignore any judgement from others. He is now stammer-free and the couple often spend hours chatting together.

Finding a new hobby

Dementia has also affected Andi’s movement, a hallmark of Lewy body dementia. His walking is slower now and he uses a walking stick, resulting in him being unable to do things he used to love like hiking, boating, fishing and travelling overseas. To compensate, Andi has found a new interest: toy cars. “I enjoy technical work and since now I cannot do aircraft work, I’ve started to build my own toy cars as a way to maintain my skills,” he smiled.

Difficult behaviour and personality changes are common challenges faced by people with Young-Onset Dementia (YOD) and their caregivers. Nurse Clinician – Advanced Practice Nurse Esther Chua, Department of Nursing, NNI shares her top tips on preventing and managing ‘meltdowns’.

Losing the ability to think clearly, remember and plan can be particularly frustrating for people diagnosed with dementia in their 40s and 50s, especially if they are at the peak of their career. Difficult behaviour and personality changes are more marked in people with YOD and happen faster than elderly who have dementia. These can include changes such as explosive moods, becoming irritable or depressed and removing clothes in public. Previously soft-spoken people may also start making insulting comments and become highly demanding.

Such difficult behaviour is also known as meltdowns. Anti-psychotic and mood medication may help to reduce the frequency of meltdowns, but they can still occur when triggered. Preventing these situations and knowing what to do can help caregivers cope better.