Caring for someone with Lewy body dementia at home often means adapting to days that can look very different from one another. Someone may be alert and chatty in the morning, then tired or confused a few hours later. Hallucinations, changes in movement, disturbed sleep and swallowing problems can also become part of everyday life.
The aim is to support the person without taking away their independence. Keeping familiar routines, allowing extra time and involving them in decisions can all help them stay independent and keep doing the things they enjoy, with the people who matter to them.
Whether you are caring for your mum, dad or partner, supporting a friend, or living with the diagnosis yourself, this guide looks at practical care at home, medicine safety, when to seek medical advice and when extra support might be helpful.
What makes Lewy body dementia different
Lewy body dementia is an umbrella term covering two closely related conditions: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
With dementia with Lewy bodies, changes in thinking and other dementia symptoms develop before, or around the same time as, movement problems. With Parkinson’s disease dementia, the person has already been living with Parkinson’s disease before dementia symptoms develop. A specialist can explain which diagnosis applies.
There are several features that can make Lewy body dementia different from other types of dementia. Alertness can change significantly during the day, sometimes within minutes or hours. Visual hallucinations are common and may involve seeing people or animals. Movement can become slower and more difficult, while fainting and falls can also occur. Sleep may be disturbed, including episodes where someone acts out their dreams. Memory problems may be less noticeable in the earlier stages than they are with Alzheimer’s disease.
Our types of dementia guide has a short overview of the different conditions.
For someone providing care, the important thing to remember is that there may not be a predictable pattern from one day to the next. The support that works well one morning may need to be adjusted by lunchtime.
The most important safety point: medicines
People with Lewy body dementia can be particularly sensitive to some medicines, including certain antipsychotics. These medicines may sometimes be considered for severe hallucinations, delusions or behaviour that puts someone at risk, but they can cause serious reactions in people with Lewy body dementia and should only be used with great care.
That makes it particularly important that healthcare professionals know the person’s exact diagnosis.
A few simple precautions can help:
- Tell every GP, hospital team, pharmacist, dentist and paramedic that the person has Lewy body dementia, rather than simply saying they have dementia.
- Ask a prescriber or pharmacist to check before any new medicine is started, including over-the-counter remedies.
- Keep a written list of medicines and doses with the person’s care information.
- Ask the memory clinic or specialist team whether there is an alert card or other information the person can carry.
- Never stop, start or change a prescribed medicine without speaking to the prescriber.
If the person is admitted to hospital or sees a healthcare professional who doesn’t know them, remind the team about the diagnosis.
Day-to-day care for Lewy body dementia
A familiar routine can help bring some structure to the day, but it is worth staying flexible. If the person is usually more alert in the morning, for example, that may be the best time for activities that need more concentration or energy.
Good days and bad days
One of the more difficult things for families to adjust to can be the fluctuations in alertness.
Someone might be clear and chatty at breakfast, become very sleepy or muddled by lunchtime and seem much more like themselves again later in the day. These changes can happen over hours, or sometimes much more quickly.
It doesn’t necessarily mean the dementia has suddenly progressed.
Where possible, plan more demanding activities for the times when the person is usually at their best. If bathing, going out or having visitors tends to work better in the morning, for example, there is no reason to force those activities into the afternoon.
It can also help to keep a simple record of changes in alertness, alongside things such as sleep, food, drinks and bowel movements. Over time, this may reveal useful patterns to discuss with the GP or memory clinic.
A sudden change is different from the usual fluctuations. If someone becomes suddenly confused or much more unwell than usual, seek urgent medical advice rather than assuming it is part of their Lewy body dementia. Sudden confusion can have other causes, including infection, dehydration or constipation.
Responding to hallucinations and delusions
Visual hallucinations are common in Lewy body dementia. Someone might see people, children or animals who are not there. They can also experience delusions, where they become convinced that something is true when it is not.
Not every hallucination is frightening. Some people find them neutral or even comforting. If the person is not distressed and there is no safety concern, there may be no need to try to stop the experience.
If they are frightened, try to focus on how they feel rather than proving that what they are seeing is not real. A calm voice, reassurance and a change of focus can be more helpful than an argument.
It is also worth looking around the room for things that could be confusing. Shadows, mirrors, patterned fabrics and poor lighting can all make visual perception harder. Make sure glasses are clean and hearing aids are working properly too.
Speak to the GP or memory clinic if hallucinations or delusions are new, becoming more frequent or causing distress. Let them know about the person’s Lewy body dementia, particularly if medication is being considered.
Movement, stiffness and falls
Movement can become slower and more difficult with Lewy body dementia. Someone may develop stiff limbs, a stooped posture or a shuffling walk. They may also have problems judging distances or seeing the edge of a step, while dizziness or fainting can increase the risk of falls.
A physiotherapist or occupational therapist can help with movement, exercises, equipment and changes around the home. If falls are becoming a problem, ask the GP about a falls assessment.
At home, simple changes can make everyday movement safer:
- Keep walkways clear.
- Remove loose rugs and trailing cables.
- Make sure the route to the bathroom is well lit at night.
- Keep sturdy footwear somewhere easy to reach.
- Encourage the person to pause for a moment after standing up if they feel dizzy.
- Follow prescribed medication timings carefully and make sure anyone else providing care knows the routine.
Our guides to Parkinson’s care at home and mobility and frailty care cover movement support in more detail.
If someone falls and cannot get up, or may have injured their head, neck, back or hip, call 999. After other falls, seek urgent medical advice if they may be injured or unwell, and speak to the GP if falls are becoming more frequent.
Sleep and night-time
Sleep problems are common with Lewy body dementia. Some people experience REM sleep behaviour disorder, where they talk, shout or move around while acting out their dreams. Daytime sleepiness can also be significant.
Making the bedroom safer can help if someone moves around during sleep. Move bedside tables and other hard objects away from the bed, pad sharp corners where appropriate and talk to an occupational therapist about whether changes such as a lower bed would be suitable.
It may also be worth changing sleeping arrangements for a while if a partner is being disturbed or injured. Sleeping in separate beds does not mean either person has done anything wrong. Sometimes it is simply the most practical way for both people to get enough rest.
During the day, regular daylight and a consistent getting-up time can help maintain a clearer distinction between day and night.
Speak to the GP if sleep is regularly disrupted, someone is getting hurt during the night, or daytime sleepiness is affecting their ability to eat, drink or stay safe.
Eating, drinking and swallowing
Swallowing problems can develop with Lewy body dementia. Signs can include coughing or throat clearing during meals, food remaining in the mouth, a wet or gurgly voice after drinking, repeated chest infections or unexplained weight loss.
When the person is more alert, offer food and drinks in an unhurried way. Smaller meals may be easier if their appetite is low, and it can help to keep them sitting upright while eating and for a while afterwards.
Our article on why people with dementia stop eating looks at appetite changes in more detail.
If someone coughs or chokes while eating or drinking, or develops a wet, gurgly voice afterwards, speak to their GP or urgent care service. A speech and language therapist can assess swallowing and advise on the safest approach. Do not change food textures or thicken drinks without professional advice.
Routine and communication
A predictable routine can make the day easier when concentration and alertness are changing, but that does not mean every part of the day needs to be fixed.
Try to involve the person in decisions wherever possible. They may want to wash later in the day, listen to familiar music, go for a walk or spend time with a particular person. Keeping those choices in place can help them retain a sense of control.
Our free dementia daily planner can help you build a routine around the person’s better times.
| Situation | What can help |
| Washing or dressing | Choose a time when they are usually alert and lay everything out in order. |
| Conversation | Reduce background noise, ask one question at a time, and give them plenty of time to answer. |
| A bad patch | Lower the demands of the moment and try again later if something is not working. |
| Visitors | Keep visits shorter and less crowded, particularly when the person is tired. |
| Evenings | Close curtains before dusk, put the lights on and keep the evening calm and familiar. |
Hospital stays and appointments
A hospital visit can be particularly unsettling when someone has Lewy body dementia, especially if the staff caring for them do not know what is normal for that person.
A short written summary can make things easier. Include the diagnosis, current medicines and timings, usual routines, communication preferences and anything that tends to help when they become confused or distressed.
The Alzheimer’s Society’s This is me leaflet is one format that families can use to share important information with health and care professionals.
Before the person leaves hospital, ask what support will be available at home and what to do if something changes in the first few days.
Our hospital discharge live-in care page explains how a live-in carer can support someone returning home after a hospital stay.
Looking after yourself as a carer
Caring for someone whose needs can change from hour to hour can be exhausting. Even when things are going well, you may find yourself constantly adjusting plans or worrying about what the next day will look like.
You don’t have to wait until you are struggling to ask for help.
In England and Wales, you can ask your local council for a free carer’s assessment. This looks at how caring affects your own life and what support could make things more manageable.
The equivalent is an Adult Carer Support Plan in Scotland. In Northern Ireland, you can contact your local Health and Social Care Trust.
The person you care for can also have a care needs assessment. Regular breaks can make a real difference too. Our guide on how to get respite care explains some of the options, including respite and short-term live-in care.
Where to get help in the UK
You do not have to work everything out on your own. There are specialist organisations and local services that can help with both the dementia itself and the practical side of caring.
- Your GP or memory clinic: for changes in symptoms, referrals and questions about medicines.
- Dementia UK: call the Dementia Helpline on 0800 888 6678 to speak to a specialist dementia nurse.
- Lewy Body Society: the UK charity supporting people living with Lewy body dementia and their carers.
- Alzheimer’s Society: call the Dementia Support Line on 0333 150 3456 for advice and local support.
- Parkinson’s UK: call the helpline on 0808 800 0303 where Parkinson’s is part of the picture.
- Your local social care service: for care needs assessments and support for unpaid carers. The process and terminology vary across the UK.
When to review support at home
As Lewy body dementia changes, the right level of support may change too. It can help to look at how the person is managing day-to-day and where a little extra help could make life easier.
Think about whether they are still moving around safely, managing meals, sleeping well and feeling comfortable at home. It is also worth considering how much support you are able to provide alongside your own work, family and other commitments.
Most importantly, involve the person in the conversation about what support they would like and what they want to keep doing at home. For some families, support from relatives alongside visiting care is enough. For others, changing needs throughout the day mean scheduled visits leave gaps.
Live-in care can provide a more consistent presence, with support adapted around the person’s routines and care plan.
How live-in care can help with Lewy body dementia
Independent People Live-in Care provides fully managed dementia live-in care, starting with an assessment of the person’s needs, preferences and what matters to them.
Finding the right carer is about more than experience. Personality and compatibility matter too, particularly when someone will be living and spending a lot of time in the same home. The wider team remains involved in planning, monitoring and reviewing the care as needs change.
Depending on the agreed care plan, a live-in carer may help with meals, personal care, mobility and medication prompts or administration. They can also get to know the person’s usual routines and record changes that may be useful to share with the care team.
Overnight needs are assessed separately. A live-in carer needs sleep and regular breaks, so live-in care does not mean having someone awake and providing care continuously throughout the night. If someone needs frequent assistance overnight, they may need additional staffing or a different care arrangement.
Where needs are more complex, suitable packages can include nurse-led oversight and clinically informed care planning. This does not mean that a registered nurse lives in the person’s home.
Independent People Homecare’s regulated service is currently rated Good by the Care Quality Commission in England, overall and across all five key areas.
Talk to us about dementia care at home
You do not need to have everything worked out before asking about care.
If you are finding that things at home are becoming harder to manage, call Independent People Live-in Care on 0800 471 4741 or use our enquiry form to talk through what you need.
If you would rather read first, our free care guides explain more about how live-in care works.
Frequently asked questions
Why does Lewy body dementia change from day to day?
Changes in alertness and attention are a common feature of Lewy body dementia. Someone may be much more alert at one point in the day and confused or sleepy a few hours later. A difficult spell does not necessarily mean the dementia has suddenly progressed.
A sudden change that is very different from the person’s usual pattern should be treated differently. The NHS recommends calling 999 to seek urgent medical attention.
What should I do when they see things that are not there?
Try to stay calm and focus on how the person is feeling rather than arguing about whether what they see is real. If they are frightened, reassure them and gently redirect their attention if that helps.
If the hallucination is not upsetting them and there is no safety concern, you may not need to intervene. Speak to the GP or memory clinic if hallucinations are new, becoming more frequent or causing distress.
Are some medicines unsafe for people with Lewy body dementia?
Some people with Lewy body dementia can have serious reactions to antipsychotic medicines. These medicines should only be considered carefully, usually when symptoms are severe, or there is a significant risk of harm, and under appropriate medical supervision.
Make sure every GP, hospital team, pharmacist and paramedic knows the person’s exact diagnosis. Do not stop or change prescribed medicines without speaking to the prescriber.
Can someone with Lewy body dementia stay living at home?
Many people can, with support that adjusts as needs change, from family help and visiting care to a live-in carer who gets to know the person’s routines. Needs can change quickly, so plan regular reviews. Our article on how long a person with dementia can live at home explores the factors involved.
Does a live-in carer stay awake all night?
No. A live-in carer lives in the home and needs sleep and regular breaks, so they can respond to occasional night-time needs but do not provide continuously awake care. If someone needs frequent help overnight, this is assessed separately and may require additional staffing or a different arrangement.