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Dementia and Delirium: A Complete Guide for Indian Families

Delirium — the one nobody has heard of

Read this section even if it is not why you came.

What it looks like. Confusion that develops over hours or a few days. The person cannot hold attention — you ask a question, and they drift halfway through the answer. They do not know where they are, or what time of day it is. It fluctuates: much worse in the evening and at night, sometimes almost normal in the morning, which is exactly why hospital staff on a day shift keep missing it. There may be frightening visual experiences, agitation, or attempts to pull out drips and leave.

The quiet form is the one that gets missed entirely. Not everybody with delirium is agitated. Many become withdrawn, sleepy, slow, uninterested — and everybody, including doctors, concludes that the patient is tired after the surgery, or depressed, or simply old. Quiet delirium is at least as common as the noisy kind, and it carries a worse outcome, because nobody looks for the cause.

Delirium is a symptom of something physical. The usual causes:

  • Infection, particularly of the urine or the chest — the commonest cause by far in older Indian patients
  • Dehydration
  • Constipation, which sounds trivial and is not
  • Pain, including pain the person cannot report
  • Medicines — newly started, or an accumulated list
  • Alcohol or sedative withdrawal
  • Low sodium and other salt disturbances
  • After surgery or anaesthesia
  • Any serious illness — heart, kidney, liver, low oxygen

So the question is never “why has he gone mad”. It is “what is wrong with his body”. Urine test, blood tests, examination, review of every medicine. Find the cause and the confusion usually clears.

What families and hospitals should do:

  • Have a familiar person present. It reduces both the confusion and the fear.
  • Make sure spectacles and hearing aids are on. A great deal of confusion in hospitals is a man who cannot see or hear anything trying to work out where he is.
  • Keep the room light in the day and dim at night. Say the day, the time and the place, gently and often.
  • Do not restrain.Tying an agitated older person to a bed worsens delirium, causes injuries, and happens far too often.
  • Be very cautious with sedatives.They frequently make delirium worse and prolong it. They have a limited place, for severe distress or danger, at low dose, briefly, decided by a doctor.

Delirium can also happen to someone who already has dementia — and when it does, families often assume the dementia has suddenly worsened and that nothing can be done. That assumption costs recovery. A sudden decline in someone with dementia should be investigated as delirium until proven otherwise.

Dementia — and what is simply ageing

Ageing does slow the mind. Names arrive late. You walk into a room and forget why, and remember two minutes later. You need things written down more than you used to. That is ordinary, and it is not the beginning of anything.

What is not ordinary:

  • Forgetting recent conversations and events completely — not the detail, the whole thing
  • Asking the same question repeatedly within an hour
  • Difficulty with tasks the person has done for forty years — operating the gas, handling money, a familiar recipe
  • Getting lost somewhere familiar
  • Struggling for ordinary words, or substituting wrong ones
  • Poor judgement — giving money away, dressing wrongly for the weather, falling for a phone fraud
  • Change in personality or behaviour — apathy, irritability, suspicion, loss of the usual social restraint
  • Withdrawing from things that were always enjoyed

The single most useful distinction: in ordinary ageing the person forgets and is troubled by forgetting. In dementia, insight into the forgetting is frequently lost — it is the family who is troubled, while the person insists there is no problem. When the relative is more worried than the patient, that itself is information.

The main types

Alzheimer’s disease. The commonest. Begins gradually with recent memory, and progresses slowly over years.

Vascular dementia. Caused by damage to the brain’s blood supply. Often stepwise — a sudden decline, a plateau, another decline — and frequently follows strokes. This one matters enormously in India, where blood pressure and diabetes are common and often poorly controlled. This is the type where treating the risk factors genuinely changes the course.

Lewy body dementia. Alertness that fluctuates markedly from day to day, detailed visual hallucinations — often of people or animals — stiffness and slowness like Parkinson’s disease, and acting out dreams during sleep. This type must be identified, because people with it can react severely and dangerously to certain antipsychotic medicines. That is a genuine safety issue, and it is the reason a proper diagnosis is not merely academic.

Frontotemporal dementia. Usually younger onset — fifties and sixties. Memory may be relatively preserved at first. What changes is personality, behaviour and social judgement, or language. It is regularly misdiagnosed as a psychiatric illness or as a mid-life crisis, and families spend years being told a man has become selfish or difficult when he is ill.

The causes that are treatable — and get missed

This is why “it is just old age” is an expensive assumption. Several conditions produce memory and thinking problems and can be corrected or improved:

  • Vitamin B12 deficiency— common in India, particularly in vegetarian diets, and easily tested
  • Thyroid underactivity
  • In older adults, depression can look strikingly like dementia — poor concentration, apparent memory loss, slowness, withdrawal. It is treatable, and it is missed constantly because everybody has already decided what the diagnosis is.
  • Medicines, especially several sedating ones together
  • Alcohol, which causes its own pattern of cognitive damage, some of which recovers with abstinence
  • Fluid on the brain, or a slow bleed after a fall— sometimes a fall the family has forgotten about
  • Hearing loss, which does not cause dementia but makes cognition look far worse than it is, and is the most easily corrected thing on this list

None of these is rare. All of them are found by assessment and missed by assumption.

Why diagnose it at all

Families ask me this directly, and it is a fair question: if most dementia cannot be cured, what is the point of putting an eighty-year-old through tests?

To find what is treatable. Everything in the section above.

To identify the type — which changes what medicines are safe, particularly with Lewy body dementia.

To treat the vascular risk factors, where that alters the course.

To plan while the person can still take part. Property, finances, a will, who will make decisions, what kind of care they would want. Under the Mental Healthcare Act 2017, a person can also record an advance directive while they still have capacity. These conversations are difficult, and they are far more difficult later.

To protect the person from fraud — telephone scams, signed papers, money handed over. This is a real and underestimated harm in Indian families.

And for the family. Knowing that the accusations, the repetition and the anger are a disease rather than a change of heart transforms how a household copes. I have seen a diagnosis end years of quiet resentment in one consultation.

Treatment

Medicines for dementia itself. A class of medicines has modest benefit in some types, particularly Alzheimer’s disease — they may slow decline somewhat and help alertness and function for a period. They are not a cure and anybody selling them as one is misleading you. Whether they are worthwhile in a given person is a judgement for a doctor who has assessed them.

Treat what is treatable. Correct the vitamin, treat the thyroid, treat the depression, review the medicine list, control blood pressure and diabetes, sort out the hearing.

Non-medicine approaches come first for behaviour, and they work better than families expect. Structure and routine. Familiar surroundings. Activity and company. Good light. Attention to sleep. Meaningful occupation, even small.

And the caution I want to be most emphatic about. Sedating and antipsychotic medicines are widely used in this country to control agitation in dementia. In older people with dementia this class carries an increased risk of stroke and death, and in Lewy body dementia the reaction can be severe.

They are not forbidden — there are situations of genuine danger or severe distress where they are the right decision. But they should be a considered choice at the lowest dose for the shortest time, reviewed regularly, and never a standing arrangement that nobody revisits for three years.

If your relative is on one of these, ask when it was last reviewed. That single question is one of the most useful things a family can do.

Behaviour: what is actually happening

Almost all difficult behaviour in dementia is communication. The person cannot say what is wrong, so the distress comes out as agitation.

Before anything else, check the physical. Pain — a tooth, a joint, a pressure sore. Infection. Constipation. Hunger or thirst. Needing the toilet. Too hot. Too noisy. Too many visitors. These explain a great deal of what gets labelled aggression.

Accusations of stealing are among the most common and the most wounding — usually directed at whoever provides the most care, which in Indian households is very often a daughter-in-law or a wife. It arises because the person has misplaced something, cannot remember doing so, and the mind supplies an explanation. It is a symptom. It is not what they think of you. Knowing that does not remove the hurt, but it changes what it means.

Do not argue and do not test. Correcting somebody who believes it is 1975, or that their late brother is coming, produces distress and achieves nothing — they will not retain the correction, only the feeling of being contradicted. Respond to the emotion instead of the fact. “You are missing him” is truthful and kind and does not require you to lie.

And please stop asking “do you know who I am?” Every family does it. It is experienced as an examination that the person keeps failing. Say who you are, warmly, and move on.

Practical communication. Short sentences. One question at a time. Face them. Give time to answer. Reduce background noise — a television running behind a conversation makes comprehension far harder than people realise.

Sundowning — worse confusion and agitation in the late afternoon and evening — is common. Better light in the evening, a calmer routine, and less afternoon sleep all help.

Safety. Gas and stove. Wandering, and identification on the person. Driving, which must be addressed and is one of the hardest conversations a family will have. Bank accounts, cards and documents.

The carer

In almost every Indian household, one person is doing nearly all of this. She is usually a wife or a daughter-in-law; she is often not young, and she is frequently told she is doing too little by people who visit for two hours a month.

Carers of people with dementia have high rates of depression, anxiety and exhaustion, and in this country they almost never get any help at all.

If you are that person: your own health is part of this treatment, not a distraction from it. You are allowed to see a doctor for yourself. You are allowed to say that you cannot do it alone. Asking for help is not a failure of duty.

And to the rest of the family — the sons who ring on Sundays, the relatives with strong opinions about how she should be managing: share the work or moderate the commentary.

Can it be prevented?

Not reliably. But a substantial part of the risk across a population is linked to things that can be modified, and most of them are ordinary:

Blood pressure control in midlife. Diabetes control. Physical activity. Not smoking. Limiting alcohol. Treating hearing loss — genuinely one of the strongest single factors. Staying socially and mentally engaged. Protecting the head from injury. Treating depression. Sleep.

Nothing here is a guarantee, and no supplement or brain-training app has good evidence. But blood pressure treated properly in your fifties is one of the better investments you can make in your seventies, and almost nobody thinks of it that way.

A story from the consulting room

The following is a composite — assembled from patterns I have seen many times. It is not any one patient, and all details have been changed.

He was seventy-six, a retired schoolteacher, and he went in for a routine hernia operation.

The surgery was uneventful. On the second night he did not know where he was. He tried to leave, pulled out his cannula, and told his son that people were being kept in the next room. The nursing staff, who were busy and had seen this before, told the family it happens with old people after anaesthesia.

By the fourth day the family had accepted a conclusion: he had gone mad after the operation. A relative advised them, seriously, to take him to a psychiatrist for lifelong medication. Somebody else suggested he be kept at home permanently and not allowed out.

I was asked to see him because he was agitated at night.

He had a urinary infection. He was constipated. He had not been given his usual blood pressure medicine for three days because nobody had reconciled his home medicines with the hospital chart. He was mildly dehydrated. His spectacles were at home in a drawer and he had not been able to see anybody’s face since he was admitted.

Treatment was antibiotics, fluids, his own medicines restarted, his spectacles fetched, his daughter allowed to stay overnight, the room lit properly in the daytime, and no sedatives at all.

He was substantially better in four days and himself in about two weeks.

There was a second finding. Once the delirium cleared, his memory was not quite back to where the family had assumed it was — and on assessment there was an early dementia that had been developing quietly for a couple of years and had been put down to age. That was not welcome news. But it was found, his B12 was low and was corrected, his blood pressure was properly controlled for the first time in years, and the family made the legal and financial arrangements while he could still take part in them and say what he wanted.

His son said something to me later that stayed with me: “We were arranging for him to be locked up at home. Because of a urine infection.”

Frequently Asked Questions.

Is forgetfulness a normal part of ageing?

Some is. Forgetting a name and recalling it later is ageing. Forgetting the whole conversation, repeating questions, or getting lost somewhere familiar is not, and deserves assessment.

Most types are not. Several contributing causes are treatable, some types can be slowed, and much of the distress is manageable. Assessment is worthwhile regardless.

Almost certainly not. Sudden confusion is delirium until proven otherwise and needs medical assessment today.

 Families very often ask me not to. My view is that the person has a right to know, and that early on most people cope with it better than their families fear — and it allows them to make their own arrangements while they still can. How and how much is a conversation to have together, and it should not be settled by keeping the patient out of the room.

Often not safely, and this needs an honest assessment rather than a family argument. It is one of the hardest conversations there is and it cannot be avoided.

 For most dementia, having an affected parent raises risk modestly. A small number of families carry a strongly inherited form, usually with early onset — if several relatives have been affected young, mention it and it can be looked into.

Staying mentally and socially engaged is worthwhile. Commercial brain-training programmes have not been shown to prevent dementia, whatever the advertising says. A conversation, a walk and a card game with other people are at least as good and considerably cheaper.

Sources

  • Indian Psychiatric Society — Clinical Practice Guidelines for the elderly
  • World Health Organization — ICD-11, dementia guidance, and risk reduction recommendations
  • National Institute for Health and Care Excellence (NICE) — guidance on dementia and on delirium
  • DSM-5-TR — neurocognitive disorders
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