DEMENTIA is a syndrome characterised by significant cognitive decline that is severe enough to affect independence in everyday activities.
The impairment must represent a significant decline from a previous level of functioning.
There are various forms of dementia – Alzheimer’s disease (the most common form of dementia), vascular dementia, Parkinson’s disease dementia and etc, while mixed forms often co-exist.
About 50 million people worldwide have dementia, with nearly 10 million new cases per year according to the World Health Organisation, and the number is expected to increase due to ageing of the population.
The global prevalence of dementia (of all causes) is 5-7% in adults aged 60 and above, and the risk doubles every five years after age 65. By the age of 85 or older, 25-50% of people will exhibit signs of dementia.
Future projections of the number of people with dementia (PWD) may be influenced by preventive interventions (lowering incidence), improvements in treatment and dementia care (prolonging survival), and disease-modifying interventions (preventing and slowing disease progression).
Being diagnosed with dementia is not a death sentence, although no treatment is currently available to cure the disease.
However, medications are available to slow down the progression, and lots can be offered to support and improve the lives of PWD and their families and carers.
Take the case of patient Andrew, 58, with vascular dementia (post-stroke dementia). He is well educated and used to work as a sales manager.
Pre-morbidly, he was a very polite person, a good talker with excellent job performance and socialises well with his colleagues, according to his wife.
His memory declined since 2016, and he became less talkative, forgetful and misplaced things – forgetting his ATM card PIN number, and frequently missing appointments with clients.
He stopped working a year later due to poor performance and his inability to manage his job routine.
His wife noticed he had difficulty with words and became quiet during family gatherings, as he had trouble expressing himself.
Andrew has three children but can’t remember their age. He can perform basic activities of daily living and personal care, helps with simple household chores, but he has stopped his banking activities and paying household bills since four years ago.
Two years ago he joined a qi gong exercise group and this has been his routine every morning. He is able to follow the moves and steps but sometimes encounters left-right disorientation.
Andrew is still able to drive but only when his wife is with him, as he occasionally needs her to assist in navigation.
The legal and ethical issues in this case is that Andrew is still actively driving around with cognitive impairment.
Research suggests that PWD tend to overestimate their driving abilities. As the disease progresses, their attention, concentration, visuospatial skills, judgment, decision-making and reflexes required for safe driving tend to decline. These put them at higher risk on the road, even for those with mild dementia.
Having early discussion on the plan for PWD to retire from driving and the alternatives (transportation and delivery) helps top address the matter.
Evaluation by an occupational therapy rehabilitation specialist is valuable, and even if PWD pass the driving test, they should be tested regularly every six months.
Carers need to be educated and aware of signs of unsafe driving such as difficulty navigating to familiar places, poor lane control, inappropriate driving speed, confusion over brake and gas pedals, failure to observe traffic signs, making slow or poor decisions, becoming easily angry or confused while driving, etc.
Consider ways to limit and distract PWD from driving as the disease progresses, and if they still insist on driving, implement last-resort preventive strategies such as removing access to the ignition key, or disabling or selling the vehicle.
Caring for PWD poses many challenges for the family and carers. Progressive deterioration of memory makes PWD more difficult to make decisions, remember things, communicate with others and even deal with their own personal care.
Furthermore, their mood swings and change of personality and behaviour (for some PWD) makes the job of caring more difficult and complicated.
Caring for PWD is not just about giving one’s time and energy, but also the potential loss of income when carers have to change work schedules, take leave of absence, and even give up their job to be there for the patient.
It is not an easy task to care for a loved one with dementia, especially when most of the carers are the patient’s children in their 50s, 60s or older who increasingly find themselves disabled and in need of medical assistance and help from others. Carers like them frequently need to provide support to both younger and older family members, while at the same time deal with their own issues.
Appropriate acknowledgement, support, respite and rewards should be given to reduce a carer’s stress and exhaustion.
Sometimes, all the carer needs is a good listener and to find a balance among all the demands for the carer to sustain his or her role.
Indisputably, there is personal satisfaction and positive aspects in caregiving – knowing that the carer is needed, appreciation from family members, having a sense of accomplishment and the opportunity to show love for the disabled loved one, and many more.
Dr Lam Ngee Wei is a consultant physician (internal medicine) and geriatrician at Subang Jaya Medical Centre.
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