This page is part of PrimeCarers' guide to dementia care. It answers one question: what changes about care at home when the diagnosis is Lewy body dementia rather than Alzheimer's.
The short answer
- Antipsychotic medicines carry a specific warning hereNICE guideline NG97 tells clinicians that in this condition antipsychotics can worsen movement and in some cases cause severe sensitivity reactions. Getting the diagnosis onto the record is something a family can do.
- The same person can be two different people in one dayThe NHS describes marked swings between alertness and confusion or sleepiness that change over minutes or hours. It is a feature of the illness, not something a family has imagined.
- Seeing people or animals is common and is not always frighteningThe NHS says the hallucinations range from pleasant to distressing, and arguing about whether the figure is there rarely helps either of you.
- Acted-out dreams put whoever shares the bed at riskShouting and hitting out during sleep is a recognised sleep disorder here, and a GP has something to offer.
Checked against the NHS, NICE guideline NG97, the Alzheimer's Society, Dementia UK and the Lewy Body Society, September 2026. Prices are what carers on PrimeCarers charge, with our fee included.
What sets it apart
Why the usual dementia advice does not quite fit
Lewy body dementia is an umbrella term covering both dementia with Lewy bodies and Parkinson's disease dementia, and the Lewy Body Society puts it at about 15 per cent of all dementia cases. It is caused by deposits of protein in the brain, and it affects memory, thinking, movement, sleep and behaviour rather than memory alone. That is why a guide written around Alzheimer's can leave a family feeling they are reading about somebody else.
Four features, and what each one changes about a day at home
Alertness that changes within a day
- What it looks like
- Clear and conversational at ten in the morning, staring past you and hard to rouse by midday, then much more like themselves after tea.
- What it gets mistaken for
- Families are told it is tiredness, or a bad night, because the clinic appointment happened to fall in a good hour.
- What it changes about the care
- A visit booked for a fixed hour lands in a good stretch some days and a drowsy one on others, so the plan for the hour has to bend.
Seeing people or animals that are not there
- What it looks like
- A child in the corner of the room, a cat on the stairs, somebody standing in the garden. The NHS says these can range from pleasant to distressing.
- What it gets mistaken for
- Read as a sign that the dementia has suddenly moved on, or that your relative is losing touch with everyone.
- What it changes about the care
- Whoever is in the house needs a way of answering that neither agrees the figure is real nor argues that it is not.
Acting out dreams while asleep
- What it looks like
- Shouting, talking, kicking or hitting out during sleep, sometimes hours before waking, with no memory of it in the morning.
- What it gets mistaken for
- Taken as aggression, when it is a sleep disorder that the NHS lists as a feature of this kind of dementia.
- What it changes about the care
- The safety of whoever shares the bed becomes a practical question, and it is one to raise with the GP rather than solve alone.
Slowness, stiffness and unsteadiness
- What it looks like
- Shuffling, stiff limbs, a tremor, fainting spells and falls. The NHS lists all of these alongside the memory and thinking changes.
- What it gets mistaken for
- Put down to age or to arthritis, particularly when the movement problems arrive after the confusion rather than before it.
- What it changes about the care
- Somebody who walked to the kitchen unaided in the morning may not be safe to do it at six, so the same house needs two plans.
Not everybody has all four, and a diagnosis is made by a specialist rather than from a list. Symptoms checked against the NHS, the Alzheimer’s Society, Dementia UK and the Lewy Body Society, September 2026.
If the diagnosis is recent, the different types of dementia sets it alongside the others, and vascular dementia, which moves in steps rather than hour to hour is the other type with a day-to-day pattern of its own. Much of the rest of the dementia silo still applies: wandering and leaving the house, aggression and agitation, when someone refuses care and lasting power of attorney are the same questions here as anywhere else. This page stays on what is particular to Lewy body dementia.
The medicines warning
Antipsychotic medicines, and why the diagnosis has to be on every record
This is the part of the page to read if you read nothing else. NICE guideline NG97, recommendation 1.7.4, tells clinicians to be aware that for people with dementia with Lewy bodies or Parkinson's disease dementia, antipsychotics can worsen the motor features of the condition, and in some cases cause severe antipsychotic sensitivity reactions. The Lewy Body Society puts it in plainer words: these drugs are generally not recommended as they can be dangerous in Lewy body dementia, and should be avoided unless the doctor is fully aware of the diagnosis and the implications.
None of that is a reason for anybody to stop a prescribed medicine or refuse one at the door. Prescribing belongs to the specialist who knows your relative, and the NHS does list antipsychotics such as quetiapine among the medicines that may help when behaviour is putting someone at risk of harm, while saying that they can cause serious side effects and should be avoided whenever possible. Dementia UK adds that where one is used, only certain types should be considered, and only with extreme caution. Both statements are set out in full by NICE guideline NG97 and by the Lewy Body Society.
What a family can do is make sure nobody prescribes without knowing the diagnosis. In an out-of-hours appointment or a busy A&E department, the person in front of you may not have opened a memory clinic letter written two years ago.
- 1
Ask the GP practice to put it on the record
This weekAsk for the diagnosis and the sensitivity to antipsychotic medicines to be added to the GP record, and flagged where a prescriber will see it. A practice pharmacist is often the person who can do this. - 2
Keep the diagnosis letter and the medicines list together
One envelopeA copy of the specialist's letter with a current list of everything your relative takes, kept where the family and any carer can find it. Hand that over rather than explaining from memory. - 3
Put a copy where an ambulance crew will look
By the doorParamedics work from what is in the house. Somewhere obvious, such as with the medication or by the front door, means a crew reads it in the first few minutes. - 4
Say it out loud at every new appointment
Every timeA&E, an out-of-hours GP, a dentist, a ward, a care home offering respite. Naming the condition and the warning takes ten seconds and does not depend on anyone finding the paperwork. - 5
Ask the specialist what the plan is before you need it
At the next reviewAsk what should happen if the hallucinations become distressing, or if your relative becomes very agitated, and ask for that in writing. It is worth a great deal at two in the morning.
Hour to hour
Attention that changes within the same day
The NHS describes marked swings between alertness and confusion or sleepiness that happen unexpectedly and change over minutes or hours. The Lewy Body Society lists changes in alertness as the most common of the core symptoms. It is the part families are least prepared for, and the part that leads to them being told, gently and wrongly, that they must be exaggerating.
- 8am
Awake, talking, managing breakfast
Answers the phone, knows the day of the week, walks to the kitchen unaided. Anybody arriving now would wonder what the fuss was about.
- 11am
Drifting, staring past you, hard to rouse
Dementia UK describes people staring blankly into space and sleeping a great deal. A sentence started now may not be finished.
- 1pm
The hospital appointment
The clinic sees whichever version turns up, and the notes may record somebody doing better than they are.
- 4pm
Back again, wanting company
Clear enough to talk about the garden or the grandchildren, and often the best hour to sit with somebody.
- 7pm
Slower and less steady than at breakfast
The walk that was safe this morning may not be safe now, and the confusion of early evening can look like sundowning.
Two weeks of short notes, a line a day with the time and what your relative could and could not do, gives a clinic something a half-hour appointment cannot. It is also the most useful thing to hand a new carer, because it says which hours are worth planning the wash or the meal around.
If the evenings are the difficult part, what is sundowning covers the pattern that builds as the light goes, which can sit on top of the swings described here. For a family who need somebody who understands a day that changes hour to hour, you can search for carers near you and compare their rates and read the dementia experience each one lists. Carers on PrimeCarers charge between £18 and £25 an hour for visits, with our fee included, and the cost of care for dementia sets out what a week costs as needs grow.
Seeing things
Seeing people or animals, and how to answer without arguing
The Alzheimer's Society describes visual hallucinations as a common early symptom of dementia with Lewy bodies, and says the person might describe seeing people or animals. The NHS adds that they can range from pleasant to distressing. A child in the corner of the room or a cat on the stairs may not be frightening your relative at all, and that is the first thing worth working out.
What tends to help
- Ask how they feel about what they can see, before deciding it needs to be dealt with
- Answer the feeling rather than the fact, so worry gets reassurance and calm gets conversation
- Turn lamps on before dusk, and cover a mirror that keeps catching somebody out
- Write down what was seen and when, and take it to the GP with any recent medicine change
What tends to make it harder
- Insisting there is nobody there, which leaves your relative feeling contradicted rather than reassured
- Agreeing that you can see the figure too, which can make it harder to settle later
- Treating a pleasant hallucination as an emergency, when NICE advises leaving well-tolerated ones alone
NICE guideline NG71 tells clinicians not to treat hallucinations and delusions that are well tolerated by the person and their family, and to look for a medical cause and review any medicines that might have triggered them first. Raising hallucinations with a GP does not automatically lead to a prescription. Where they are distressing, the same guideline sets out what specialists consider and in what order. If they come with anger rather than calm, aggression and agitation in dementia covers what to rule out first.
Acting out dreams
Shouting and hitting out in sleep, and the safety of whoever shares the bed
The NHS lists disturbed sleep, often with violent movements and shouting out, among the symptoms of dementia with Lewy bodies. The Alzheimer's Society calls it rapid eye movement sleep behaviour disorder and says people may physically act out their dreams. A husband or wife lying next to it is being hurt by somebody who is asleep and will not remember it in the morning.
Worth working through if nights have become unsafe
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The bedroom
What to tell the GP
The Alzheimer's Society describes this sleep disorder in more detail. Nights are also where a family carer runs out first, and if somebody in the house is awake most nights, night care for dementia explains what a waking or sleeping night covers and what it costs, and a few nights a week is worth booking before things reach a crisis.
Movement and Parkinson's
Slowness, falls, and the overlap with Parkinson's
The NHS lists slow movement, stiff limbs, tremors and shuffling when walking alongside fainting spells, unsteadiness and falls. The Alzheimer's Society notes that this, combined with difficulty seeing objects properly, makes falls more likely. The same protein deposits sit behind Parkinson's disease, and which name a person is given depends largely on which symptoms arrived first.
| Dementia with Lewy bodies | Parkinson's disease dementia | |
|---|---|---|
| What came first | The thinking and alertness changes start before the movement problems, or around the same time. | The movement problems come first, often by years, and the dementia follows later. |
| What is underneath it | Deposits of protein called Lewy bodies in the brain. | The same deposits, in the same places. |
| What NICE recommends | Donepezil or rivastigmine for mild to moderate dementia with Lewy bodies (NG97). | A cholinesterase inhibitor for mild or moderate Parkinson's disease dementia (NG71). |
| The antipsychotic warning | Named in NICE NG97, recommendation 1.7.4. | Named in the same recommendation, in the same sentence. |
| The day at home | Alertness swings, and movement is often worse when alertness is worse. | Movement rises and falls around medication doses as well. |
What came first
- Dementia with Lewy bodies
- The thinking and alertness changes start before the movement problems, or around the same time.
- Parkinson's disease dementia
- The movement problems come first, often by years, and the dementia follows later.
What is underneath it
- Dementia with Lewy bodies
- Deposits of protein called Lewy bodies in the brain.
- Parkinson's disease dementia
- The same deposits, in the same places.
What NICE recommends
- Dementia with Lewy bodies
- Donepezil or rivastigmine for mild to moderate dementia with Lewy bodies (NG97).
- Parkinson's disease dementia
- A cholinesterase inhibitor for mild or moderate Parkinson's disease dementia (NG71).
The antipsychotic warning
- Dementia with Lewy bodies
- Named in NICE NG97, recommendation 1.7.4.
- Parkinson's disease dementia
- Named in the same recommendation, in the same sentence.
The day at home
- Dementia with Lewy bodies
- Alertness swings, and movement is often worse when alertness is worse.
- Parkinson's disease dementia
- Movement rises and falls around medication doses as well.
Based on the NHS and Alzheimer's Society descriptions of the two conditions and on NICE guideline NG97, September 2026. A diagnosis is made by a specialist, and some people are given one name and later the other.
If your relative's day turns on medication times as well as on alertness, the Parkinson's side of the site covers that pattern. Parkinson's care is the pillar, off periods and what helps describes the stretches when medication wears off and a person slows right down, and freezing and falls covers the moments when somebody's feet stop at a doorway. After a fall, the checklist is the page to read if there has already been one, and medication administration sets out what a carer can and cannot do with tablets.
Questions
Questions families ask about Lewy body dementia
NICE guideline NG97 tells clinicians to be aware that in dementia with Lewy bodies and Parkinson's disease dementia, antipsychotics can worsen the motor features of the condition and in some cases cause severe antipsychotic sensitivity reactions. The Lewy Body Society says these drugs are generally not recommended because they can be dangerous in this condition, and should be avoided unless the doctor is fully aware of the diagnosis and what it means. Nobody should stop or refuse a prescribed medicine on the strength of that. What a family can do is make sure every doctor, paramedic and ward knows the diagnosis first.
They are two names within the same umbrella. The Lewy Body Society describes Lewy body dementia as covering both dementia with Lewy bodies and Parkinson's dementia. The Alzheimer's Society explains the difference in timing: in dementia with Lewy bodies the symptoms of dementia begin before or around the same time as the movement problems, while in Parkinson's disease the dementia often develops many years after the movement problems started. Parkinson's care covers the movement side.
Swings in alertness are one of the core features of this condition. The NHS describes marked swings between alertness and confusion or sleepiness that happen unexpectedly and change over minutes or hours, and Dementia UK describes people staring blankly into space and sleeping a great deal. It is worth writing down over a fortnight, so a clinic sees the pattern rather than whichever hour the appointment falls in.
Arguing about whether the figure is real rarely settles anybody. It is usually more useful to ask how they feel about it, then answer the feeling: reassurance if they are worried, ordinary conversation if they are not. NICE advises clinicians not to treat hallucinations and delusions that are well tolerated, so a calm hallucination does not have to be a problem to be solved. Tell the GP either way, particularly if a medicine has changed recently.
It is more likely to be a sleep disorder. The Alzheimer's Society calls it rapid eye movement sleep behaviour disorder and says people may physically act out their dreams, and the NHS lists disturbed sleep with violent movements and shouting out among the symptoms. Your husband will usually have no memory of it. Tell the GP what happens, how often, and whether either of you has been hurt, and in the meantime clear the floor and the bedside area.
You can ask. PrimeCarers checks a carer's identity, their right to work and an enhanced DBS kept on the Update Service, and interviews every carer online. We do not check qualifications, training or references, and there is no way to search for dementia training of any kind, so what a carer says about their experience is their own account on their profile for you to check. Carers are self-employed and you book them directly. Ask each one what they have seen of fluctuating alertness, hallucinations and disturbed nights, and what dementia training exists and how to check it sets out what to ask for.
The same as for any other kind of dementia. Carers on PrimeCarers charge between £18 and £25 an hour for visits with our fee included, against £28 to £35 at an agency, and live-in care starts at £1,050 a week. Because needs here move up and down rather than only up, many families start with the hours that cover the hardest part of the day. The cost of care for dementia sets out what each arrangement costs.