This page is part of PrimeCarers' guide to dementia care. It answers one question: what does it look like when dementia is getting worse, and how do you tell that from a sudden change that is not the dementia at all.
The short answer
- Dementia usually gets worse slowlyMemory, planning, mood and movement change gradually over months, not overnight. The checklist below covers what families notice first.
- A change over a day or two is usually something elseDoctors call it delirium. It is often caused by an infection, dehydration, pain or a new medicine, and it is usually treatable.
- Know when to call, and how fastA gradual change is worth a GP appointment. A sudden one is worth a same-day call. Some signs mean 999.
- Extra support can steady thingsA daily carer visit or a medication review often gets things back on an even keel without a bigger decision.
None of this replaces a GP's opinion. If you are not sure which kind of change you are seeing, treat it as urgent and ask.
The signs to watch for
The signs dementia is progressing
Dementia rarely announces itself with one dramatic change. It shows up first in memory and thinking, then in mood, and later in the body too, and a family is often the last to notice because they see their relative every day. Tick anything that has been true over the last few months.
Has any of this changed recently?
0 of 9 ticked
Memory and thinking
Mood and behaviour
Everyday tasks and the body
Most of this is what families mean when they say dementia is getting worse, and it usually plays out over weeks or months rather than days. To see where this fits on a wider scale, the seven stages of dementia sets out what tends to change at each point, and what a carer's role becomes as it grows.
Gradual or sudden
Why a change over a day or two is different
Dementia itself moves slowly. When someone becomes far more confused within a day or two, doctors call it delirium, and it almost always has a cause that can be found and treated. Telling the two apart matters, because a sudden change is not automatically a step down in the illness.
Over weeks or months
Dementia getting worse
- Forgets things that happened recently, or repeats the same question
- Struggles to plan a task with several steps, such as cooking a meal or managing money
- Loses interest in things they used to enjoy, or seems low, anxious or irritable
- Needs more prompting to wash, dress or eat than they did a few months ago
- Is less steady on their feet, or slower and more hesitant when moving about
Over a day or two
A change worth same-day medical help
- Much more confused or drowsy than usual, over hours rather than weeks
- Agitated, distressed or seeing things that are not there
- Not making sense when they normally do, or hard to rouse
- Symptoms that swing through the day: better in the morning, worse by evening
What a doctor checks first
- An infection, especially a urine infection, which can cause confusion before any other symptom
- Dehydration, or not eating enough
- Constipation, or pain the person cannot describe
- A new medicine, or a change of dose
- Low oxygen levels, from a chest infection or a flare of another condition
- Recovering from a hospital stay or an operation, which can take weeks to clear
A urine infection is one of the most common causes, and in an older person it can bring on confusion before any of the usual waterworks symptoms show up. Dehydration, constipation, pain and a new medicine are almost as common, and every one of them is treatable once someone has looked for it. Delirium can also follow a hospital stay or an operation, sometimes appearing a day or two after the person is back home.
When to get help
What to do about it
What you do next depends on how fast the change arrived. The first two steps are free, and the fourth one matters as much as the first three: a sudden change does not always mean a permanent step down.
- 1
A change over weeks: book a GP appointment
This monthTake the checklist above with you. A GP or memory clinic can review medication, run blood tests to rule out other causes, and update the care plan. - 2
A change over a day or two: call the GP or 111 the same day
Same dayDelirium is treated by finding and treating the cause, most often an infection, dehydration or a medicine. Mention when it started and any new tablets. - 3
Stroke signs, or hard to rouse: call 999
NowA drooping face, a weak arm or slurred speech can mean a stroke and need an ambulance rather than a drive to A&E. The same goes for anyone who cannot be woken properly. - 4
After treatment, give it time
Following weeksDelirium can take days or weeks to fully clear, especially after a hospital stay, so a sudden change does not always mean a permanent step down. Ask for a follow-up once things settle.
What helps now
What helps, whichever kind of change this is
A slow decline and a sudden one call for different first steps, but once a cause has been found or ruled out, the everyday things that help are much the same.
Keep the routine steady
Ask for a medication review
Add support before it becomes a crisis
Write down what changed, and when
If the evenings are the hardest part of the day, what is sundowning? explains the pattern and what tends to settle it, and 37 activities for people with dementia has ideas that work well at most stages. If several of the signs above are becoming the normal picture rather than a bad week, at what point should someone with dementia go into care? sets out the levels of support and what each one costs, and the cost of care for dementia goes into the money on its own. A carer visiting daily starts from £18 to £25 an hour on PrimeCarers, with our fee included; agencies charge £28 to £35 for the same visit.
Questions
Questions families ask about a change in dementia
No. Dementia itself changes slowly, over weeks or months. A change over a day or two is usually delirium, brought on by something else such as an infection, dehydration, constipation, pain or a new medicine, and it is often treatable. The seven stages of dementia covers the slower pattern in more detail.
Memory and thinking usually change first: more forgetting of recent events, more trouble planning a task with several steps, and more confusion about time or place. Mood and personality often follow, and later there can be changes to movement and balance. The checklist on this page sets out what to look for.
Yes, and often without any of the usual signs of a urine infection. In an older person, an infection can show up as confusion before anything else, which is why it is one of the first things a GP checks after a sudden change.
Call 999 or go to A&E if they also have a drooping face, a weak arm or slurred speech, which can mean a stroke, or if they cannot be woken properly. For a sudden change without those signs, ring the GP or call 111 the same day rather than waiting for an appointment.
Not necessarily, and often not at all. Many sudden changes are caused by something separate from the dementia and clear up once it is treated. The seven stages of dementia explains how to tell a genuine change of stage from a passing illness.
A steady routine, a medication review, and extra support through the day all help, whatever caused the wobble. If your relative now needs more help than before, at what point should someone with dementia go into care? sets out the options and what each one costs.