People with dementia will ask the same questions over and over again, forget where they keep things and accuse you of stealing their possessions, shares Fu, who cared for her late mother who was diagnosed with Alzheimer's Disease more than a decade ago. - DANIE FRANCO/Unsplash
Out of curiosity I once asked some doctors which disease they dreaded most when they reached old age. Their answer surprised me. I was expecting them to say “cancer” or “stroke”. Instead, it was Alzheimer’s Disease, AD for short.
To understand the reason for their answer, let me share my 10-year journey caring for my mother who was diagnosed with AD in July 2011. By the way, September 21 is World Alzheimer’s Day. This makes my sharing timely.
Those who have been on this AD journey know it is a journey marked by challenges, frustrations and pain. But there are also moments of joy, celebrations and breakthroughs that keep carers going.
I was totally ignorant about AD back in 2011. Mom had shown early signs of memory loss, but like most people, I viewed her forgetfulness as part and parcel of natural ageing. Until she fell and fractured her right hip. The incident turned my life upside down.
I went from being completely clueless about AD to learning everything I could about it. With my mum as my travel companion and care partner, we covered the whole continuum of care: From home care to daycare to residential care and finally to nursing home care.
Initially it was just forgetting dates, names and places. Then she started forgetting to close the front door when going out, or turn off the gas after cooking. Her forgetfulness was becoming increasingly more serious. She was also getting more argumentative, irrational and even aggressive. It made me wonder perhaps I was adopting the wrong approach in responding to her actions.
Her second fall four years later in July 2015 worsened her condition. This time she fractured her left femur and had to have surgery to insert a device called “proximal femoral nail anti-rotation” or PFNA.
Understandably, she developed a phobia of falling again. She adamantly refused physiotherapy after she was discharged from hospital.
Her leg muscles eventually grew so weak she never walked again. She became wheelchair-bound.
Over the years as the disease advanced, she gradually became a shadow of her former self. In her final years, she wasn’t able to eat or speak.
She could only make sounds, having forgotten the words to articulate. She didn’t know who I was or even who she was.
Fu celebrating her mum's 92nd birthday. She passed on at age 95 in 2021. - LILY FULearning about Alzheimer’s
In my determination to learn how to look after my mum better, and understand her needs, I enrolled for a full-time Master of Science in Applied Gerontology at Nanyang Technological University (NTU) in Singapore.
It would help me understand the science of ageing and be in an informed position to help others face the challenges of growing old.
One of the electives I took was Mental Health. I learned that dementia was an umbrella term for several mental illnesses such as Lewy Body Dementia, Vascular Dementia, Parkinson’s Disease Dementia and Alzheimer’s Disease, depending on which part of the brain was affected.
I also learned that AD can be hereditary if a parent or a sibling has the APOE gene that causes AD. That put me at risk. My great grandma probably had it, based on what I now know about AD.
So did at least two of my aunts. And now my mum. All women. AD affects women more than men. Another risk factor.
Here’s a third risk. Blows to the head that cause traumatic brain injury may also result in a higher risk of dementia later in life.
I have had three major head injuries – on my forehead when I was six years old, at the back of my head when I was knocked down and fell backwards on the road, and the most recent in July this year at the right side of my head when I tripped and hit my head against the side of the table. Fortunately, although all three required stitches, there was no fracture or internal bleeding.
But the risk of developing dementia later in life is always there. Rather than allow fear and anxiety take over my life, I prefer to not think about it and instead, focus on the positives. I still have my mental faculties intact. I continue to read, write and give talks. I keep myself physically and mentally active, and socially engaged.
Our brain cells are capable of neuroplasticity and neurogenesis if we keep exercising them through lifelong learning and mental stimulation.
Caring for persons with dementia
It requires endless patience, resilience and energy to keep up with the person with dementia’s constant needs and demands.
Emotional or psychological abuse is common among sole caregivers. There is no rest as you are on duty 24/7 at home. There is no one else to relieve you. It is so easy to succumb to stress brought on by fatigue and lack of rest/sleep.
People with dementia will ask the same questions over and over again, forget where they keep things and accuse you of stealing their possessions. You have to keep an eye on them all the time. If they leave the house on their own, they would likely be lost, unable to remember the way home.
Today there is more awareness of AD and how to cope with caregiver burnout.
Alzheimer Disease Foundation Malaysia (ADFM) conducts regular talks and workshops on caregiving, and has set up a strong support group for caregivers. They operate a daycare at their premises in Petaling Jaya and an information centre at Atria Mall.
Dementia daycare and residential care services are now available in most towns. Many aged care centres offer workshops and training on dementia care. The bigger hospitals have designated dementia wards. The Universiti Malaya Medical Centre has a Memory Clinic, and Dr Cecilia Chan is breaking new ground with her fun activities and patient-centred caregiving at the BSC Eldercare Centre in Butterworth.
Alzheimer’s Disease International (ADI) estimates over 10 million new cases of AD each year worldwide.
With Malaysia fast heading towards aged nation status by 2040, we need to be prepared for the rise in dementia cases. The longer life span will mean a longer period of caregiving. We need to equip ourselves with learning as much as we can, not only to look after others with AD, but also to recognise the early signs and know what to do to prevent AD.
Alzheimer’s Association lists these 10 Early Signs of Alzheimer’s.
• Memory loss that disrupts daily life.
• Challenges in planning or solving problems
• Difficulty completing familiar tasks
• Confusion with time or place
• Trouble understanding visual images and spatial relationships
• Problems with words in speaking or writing
• Misplacing things and losing the ability to retrace steps
• Decreased or poor judgment
• Withdrawal from work or social activities
• Changes in mood and personality
There is currently no cure for AD. However, ongoing research points to very encouraging results for a cure in the near future. The best prevention is to adopt an active and healthy lifestyle. Remember not only to exercise our body, but also our brain. Keep learning new things. Challenge ourselves physically and mentally. And for the carers out there, know that you are not alone. There are support groups that you can reach out to.
Lily Fu is a gerontologist who advocates for seniors. She is founder of SeniorsAloud, an online platform for seniors to get connected and enjoy social activities for ageing well.
