Dementia Is Not Normal Ageing

A Malaysian problem at home

Malaysia is ageing, and dementia can no longer be treated as an uncommon specialist problem. The National Health and Morbidity Survey 2025 reported an estimated dementia prevalence of 9.8% among Malaysians aged 60 and above, compared with 8.5% in 2018. Separately, 32.2% of primary informal caregivers of older people reported caregiver burden. The latter figure is not specific to dementia, but it reminds us that dependence in later life is rarely experienced by one person alone.

Malaysia now has a Dementia Action Plan 2023–2030 and a Ministry of Health clinical practice guideline on dementia. The direction is clear: awareness, diagnosis, healthcare, social support and caregiver needs belong in the same conversation. Yet most dementia is lived at home, long before it is seen in a clinic or recorded in a national plan.

Forgetfulness or something more?

Healthy older people may take longer to retrieve a name, need more time to learn a new device or occasionally misplace something. They usually remember later, adapt and continue to manage their lives. Dementia involves an acquired decline in one or more areas of thinking that interferes with independent everyday functioning.

Clinicians using the current DSM terminology may call this major neurocognitive disorder. The familiar word dementia remains widely used by patients, families, clinicians and the World Health Organization, and it is the clearer term for a public article. DSM-5-TR also recognises mild neurocognitive disorder: measurable decline in which independence is broadly preserved, sometimes through lists, reminders and extra effort.

The useful question is therefore not simply, “Is this person forgetful?” It is: “Has something changed from before, is it progressing, and is it interfering with everyday life?”

Dementia is not one disease

Dementia is an umbrella term. Alzheimer’s disease is the most common cause, but vascular dementia, Lewy body dementia, frontotemporal dementia and mixed disease can look different. Memory loss may dominate one illness; language, judgement, behaviour, movement or visual perception may change first in another.

This matters because the label alone is not a complete diagnosis. The likely cause influences investigations, treatment, safety advice and what the family may expect. It also explains why a screening score cannot, by itself, diagnose a person.

Not every decline is dementia

Cognitive difficulty can be caused or worsened by depression, poor sleep, medication effects, alcohol, thyroid disease, vitamin deficiency, hearing or visual impairment and other neurological or medical conditions. An acute infection, pain, dehydration, constipation or urinary retention can produce delirium, particularly in a vulnerable older person.

Delirium usually appears over hours or days, fluctuates and affects attention and alertness. Dementia usually develops over months or years. Sudden confusion is therefore not “just the dementia getting worse”. It requires prompt assessment.

This is why the language of “reversible dementia” can mislead. Established neurodegenerative dementia is rarely reversed, but treatable illnesses may mimic it, and correctable problems can make an existing dementia look far worse.

Why an early assessment matters

Families sometimes ask why they should pursue a diagnosis when there is no simple cure. The answer is that uncertainty has consequences. An assessment can identify treatable contributors, establish the likely type and stage, review medicines, address driving and household safety, and connect the family to support.

Assessment can begin with a GP or family physician. It should include a history from the person and someone who knows them well, a review of everyday function and medicines, cognitive assessment, physical and neurological examination, and selected blood tests or imaging where indicated. Referral to a geriatrician, neurologist, old-age psychiatrist or memory clinic is particularly appropriate when the presentation is atypical, rapidly progressive, young in onset, behaviourally complex or diagnostically uncertain.

It also creates time. While the person can still express preferences, the family can discuss finances, healthcare decisions, living arrangements, future caregivers and what matters most if independence declines. A diagnosis should not automatically remove control. Properly handled, it helps preserve control for longer.

Treatment is more than a prescription

Dementia may not usually be curable, but it is not untreatable. Good management aims to preserve function, relieve distress, prevent avoidable crises and support the people providing care.

Start with what can be corrected

Pain, infection, dehydration, depression, poor sleep, sensory loss and inappropriate medicines should be sought and treated. Blood pressure, diabetes and vascular risk still matter. A careful medication review may be more useful than adding another tablet.

Preserve ability instead of taking over

Regular routines, physical activity, social contact, adequate food and sleep, visible calendars, labelled cupboards, pill organisers and safer surroundings can all help. Tasks should be simplified where necessary, but not removed merely because they take longer. Doing everything for a person can create dependence before the disease requires it.

Medicines for symptoms

Donepezil, rivastigmine or galantamine may provide modest symptomatic benefit in Alzheimer’s disease. Donepezil or rivastigmine may also be considered in dementia with Lewy bodies, depending on the individual patient and local guidance. Memantine is principally used in moderate-to-severe Alzheimer’s disease. These medicines are not interchangeable across every dementia subtype. They do not restore lost memory or stop the disease, and benefit and adverse effects should be reviewed rather than allowing prescriptions to continue automatically.

Behaviour is often communication

Agitation, aggression, hallucinations, disturbed sleep and wandering can be harder for a family than memory loss. Before reaching for a sedative, ask whether the person is frightened, in pain, hungry, constipated, overstimulated or unable to explain an unmet need. Environmental change, reassurance and caregiver technique should usually come first. Antipsychotic or sedating medicines may sometimes be necessary when distress or danger is severe, but potential harms and continued need require careful review.

When evening becomes difficult

Some people with dementia become more confused, restless or agitated from late afternoon into the night. This recurring pattern is called sundowning. It describes timing and behaviour, not a separate disease. Before using the label, look for pain, infection, dehydration, constipation, urinary retention, medicine effects, poor sleep, hunger, sensory impairment or environmental triggers. A sudden change over hours or days should be treated as possible delirium and assessed promptly, even when it is worse at night.

A GP or family physician can begin the assessment. A geriatrician is particularly helpful when frailty, several illnesses, multiple medicines, falls or uncertainty between dementia and delirium complicate the picture; a neurologist or old-age psychiatrist may be needed when diagnosis or behaviour remains difficult. A short diary of timing, sleep, meals, medicines, surroundings and behaviour can help reveal a recurring pattern.

A new Alzheimer treatment

Anti-amyloid antibodies have changed the scientific landscape, but not as dramatically as some headlines imply. Lecanemab modestly slowed decline in the pivotal 18-month trial; the average difference from placebo was 0.45 points on the 18-point Clinical Dementia Rating–Sum of Boxes scale. It is intended for carefully selected people with mild cognitive impairment or mild dementia due to Alzheimer’s disease after amyloid has been confirmed. It does not reverse established disability and is not a treatment for every dementia.

Malaysia’s NPRA product registry lists intravenous Leqembi as registered in 2026, with registration numbers MAL26016021ACZ and MAL26016022ACZ. Subang Jaya Medical Centre has separately reported early specialist use. Access remains limited and requires specialist selection, confirmation of Alzheimer pathology and appropriate MRI monitoring.

Treatment involves infusions and MRI monitoring. Amyloid-related imaging abnormalities can include brain swelling and bleeding; risk is influenced by factors including APOE genotype and anticoagulant use. The decision therefore involves more than asking whether the drug is available. The likely benefit, risk, monitoring burden, cost and the patient’s own goals must all be discussed.

Reducing risk without promising immunity

The 2024 Lancet Commission identified 14 potentially modifiable risk factors across the life course: limited education, hearing loss, high LDL cholesterol, depression, traumatic brain injury, physical inactivity, diabetes, smoking, hypertension, obesity, excessive alcohol use, social isolation, air pollution and untreated vision loss. Its population estimate that addressing them could prevent or delay about 45% of dementia cases is important, but it is not a guarantee for an individual.

The practical advice is familiar: control vascular risks, remain physically and socially active, stop smoking, avoid harmful alcohol use, protect the head from injury, treat depression, address significant hearing and visual loss, and continue learning. These actions support health even when they do not prevent dementia.

A person can do everything “right” and still develop the disease. Prevention language must never turn diagnosis into an accusation of personal failure.

The caregiver also needs care

Dementia alters an entire household. A spouse becomes a supervisor. Adult children disagree about what is happening or who should help. A domestic helper may be expected to manage complex behaviour without training. Night-time wandering and repeated questions erode sleep, patience and health.

Caregiver exhaustion is not a failure of love. It is a clinical and safety issue. Families need education, shared responsibility, respite, support groups and permission to say when the arrangement is no longer sustainable. Malaysia’s Alzheimer’s Disease Foundation Malaysia (ADFM) provides information, caregiver training, support networks and day-care services; these are part of treatment, not optional extras.

Practical guidance for caregivers: DemCARE Malaysia, developed by Universiti Malaya and managed by ADFM, offers locally relevant dementia information and caregiving resources. The World Health Organization’s iSupport for Dementia is a structured self-help and training manual covering dementia, caregiver wellbeing, everyday care and behaviour changes. The Alzheimer’s Association caregiver guide provides additional practical advice organised around early-, middle- and late-stage care. Its service information is US-based, but the general caregiving principles are widely applicable.

Home, nurse or residential care?

Families often frame this as a moral test: a good family keeps the person at home; placement in an “old-age home” means abandonment. That is neither fair nor safe. Home is best only while care there remains humane, sustainable and secure. Residential care is appropriate only when it is competent, accountable and suited to dementia.

Hospice and palliative-care contact: For families in the Klang Valley, Hospis Malaysia provides free community palliative care in patients’ homes for eligible patients. Telephone +603-9133 3936; 2, Jalan 4/96, off Jalan Sekuci, Taman Sri Bahtera, Cheras, 56100 Kuala Lumpur; operating hours 8 am–5 pm, Monday–Friday. Coverage and eligibility should be confirmed directly. Families elsewhere should ask the treating doctor or hospital for the nearest palliative-care or hospice service.

A caregiver assists with bathing, dressing, meals, mobility, supervision and companionship. A registered nurse may be needed when there are substantial clinical needs. The terms are not interchangeable, and a domestic helper should not automatically be treated as a trained dementia caregiver or nurse.

Residential care should be considered when wandering, falls, fires, medication errors, aggression, night-time disruption or complex nursing needs can no longer be managed safely; when the caregiver is becoming ill; or when no reliable support remains. It is better to discuss this before a crisis makes the decision.

Plan while the person can participate

Someone with early dementia may still be able to make many decisions. Capacity is specific to the decision and the time; it is not erased by the diagnostic label. The person should remain involved for as long as possible in choices about healthcare, money, driving, living arrangements and who may speak on their behalf.

Later, swallowing problems, immobility, recurrent infections and difficulty communicating pain may shift the goals of care. Palliative care is not abandonment. It means recognising when comfort, familiarity and relief of suffering matter more than repeated burdensome intervention.

Do not let the person disappear

Growing older may make a name slower to arrive or a misplaced object harder to find. Dementia is different. It progressively takes away abilities that once allowed a person to manage life independently.

Recognising the difference creates an opportunity to investigate, treat what can be treated, plan, reduce risk and support the family. It also gives us time to listen to the person before others begin speaking entirely on their behalf.

Dementia may become more common with age. It is not normal ageing. A diagnosis may explain the behaviour, but it must never erase the person.

Acknowledgment

The author thanks Dr Philip Poi Jun Hua, a specialist in geriatric medicine at Sunway Medical Centre, for his review of this piece.