How can Live-in Home Care help with Dementia with Lewy Bodies?


If your loved one has dementia with Lewy bodies, or as it’s sometimes known, Lewy body dementia, the more you understand about the condition, the better you’ll be able to support them.

Quick summary

  • Lewy body dementia is the second most common form of dementia, after Alzheimer’s.
  • Both Parkinson’s disease and dementia with Lewy bodies are caused by the same proteins – just in different parts of the brain.
  • This type of dementia, like others, can be cared for at home with the support of a live-in carer.


There are many older people living with dementia, although a large proportion of them never receive a definitive diagnosis. Dementia with Lewy bodies makes up about 20% of all dementia diagnoses in the UK – roughly 120,000 people. – Ashley Bayston, The Lewy Body Society.

The diagnosis of dementia with Lewy bodies is difficult, and the disease is sometimes mistaken for other conditions such as Alzheimer’s disease or Parkinson’s disease because of some shared common symptoms.

What is Lewy body dementia?

After Alzheimer’s, Lewy body dementia is the most common form of dementia. ‘Lewy body dementia’ actually includes both dementia with Lewy bodies and Parkinson’s disease dementia. This is because Lewy bodies are also found in those with Parkinson’s.

The name comes from Dr Frederich Lewy, a neurologist – who discovered the bodies in 1912, in people with Parkinson’s. This is why symptoms of dementia with Lewy bodies and symptoms of Parkinson’s disease can be similar.

In Lewy body dementia, cell death is caused by abnormal deposits of the alpha-synuclein protein – now named ‘Lewy bodies’.

What causes dementia with Lewy bodies?

The Lewy bodies that collect in the brain stem interfere with dopamine production. Dopamine is a neurotransmitter involved in transmissions around the brain and body.

This interference causes symptoms common in Parkinson’s disease such as shaking, tremors, mobility problems and speech impairment. The protein deposits can also spread into the cerebral cortex, disrupting and depleting acetylcholine which affects perception, thinking, and behaviour.

What are the symptoms of dementia with Lewy bodies?

When it comes to symptoms of dementia with Lewy bodies (DLB), they differ from those of Alzheimer’s in that they include both cognitive and motor symptoms whereas Alzheimer’s is mainly about memory.

In the early stages of DLB, cognitive symptoms tend to be related to spatial awareness, analytical thinking and discerning television from reality – rather than memory loss.

In addition to affecting cognitive function, Lewy bodies cause motor symptoms similar to those of Parkinson’s – this is because Parkinson’s disease is also caused by the same bodies, but in a different part of the brain.

Symptoms of dementia with Lewy bodies and Parkinson’s disease can be differentiated by the sequence of events – in DLB the cognitive symptoms appear first, followed by the motor symptoms, but with Parkinson’s it’s the opposite.

Different individuals will have differing symptoms, but the following indicators may often be symptomatic of this type of dementia:

  • Difficulty judging distance and depth
  • Lower attention span
  • Less alert than usual
  • Mood changes and depression
  • Slight memory loss
  • Hallucinations
  • Limb stiffness
  • Trembling
  • Disturbed sleep

These symptoms are likely to get worse as the disease progresses, particularly problems with memory. The person may be agitated and their behaviour may become more challenging.

How is Lewy body dementia different from other forms of dementia?

One of the most defining factors of Lewy body dementia is that people can have dramatic fluctuations of consciousness. One moment they could be completely distant or unconscious and then suddenly wake up and be perfectly fine. This can happen within minutes and is very unpredictable.

Additionally, hallucinations are a hallmark of DLB. You don’t get hallucinations with Alzheimer’s, so this is quite a defining symptom. Not all hallucinations are scary, but often can be – this is why hallucinations are usually the symptom which inform a diagnosis.

While there can be no definite diagnosis of DLB when a person is living, new technology and imaging techniques allow skilled diagnosticians to spot the signs. Other than this, diagnosis is generally based on symptoms

Lasting power of attorney (LPA)

LPA is a legal statement that allows a family member or other named person the ability to make decisions about their loved one’s finances and care needs on their behalf. For progressive conditions such as dementia with Lewy bodies it is advised that LPA be put in place.

How to care for dementia with Lewy bodies

Post-diagnosis it’s important to seek the necessary support – there are various ways to do this. There will be some practical decisions to be made, but there are also ways to find support and be supportive of loved ones following a diagnosis.

When considering care options, it’s important at these early stages to ensure your loved one’s wishes are noted – if they wish to receive care at home, this needs to be documented and vocalised by family during the process of arranging care

The benefits of live-in care

People who are living with any form of dementia can become confused and disorientated if they’re moved from their familiar environment. They’re usually much more settled and happier if they’re supported to remain in their own home, but as their symptoms progress, they’ll need care at home and someone around 24-hours a day.

A live-in carer can enable someone with even quite severe dementia with Lewy bodies to live as independently as they can at home. Providers of elderly care, such as Elder, will be able to offer a live-in carer with training and experience in dementia care, equipping them well for dealing with the challenges that can sometimes arise.

In addition to knowing that your loved one’s physical needs are being met, you’ll have the peace of mind of knowing that there’s someone with them who not only understands their condition but can also provide companionship and reassurance for them if they become anxious or agitated.

How can a live-in carer help?

If your loved one’s symptoms are fairly mild, an in-home carer’s role may be mainly to provide companion care and to ensure they’re safe and the environment is kept free of hazards. They’ll help with or take over the cooking, cleaning, laundry, and shopping for your loved one, as well as any other domestic tasks that are needed in the day-to-day running of the home.

Because dementia with Lewy bodies is a progressive disease, the carer’s role will change according to the older person’s needs and can include assistance with feeding, washing and bathing and dressing.

The level of support will be tailored to the person’s needs, and the carer will try to support your loved one to retain as much independence as they can.

Your loved one’s live-in carer will have experience in intervening tactfully and with sensitivity so that your relative finds it easier to accept assistance. If mobility is an issue, a live-in carer will be on hand to help with sitting, standing and moving.

If transfers from bed to chair or into the bath are needed, these can be safely assisted. A live-in carer will also be able to take your loved one out in their wheelchair if they use one, meaning that they’re not confined to their house.

With professional live-in care, you’ll have the peace of mind of knowing your loved one is being looked after by someone familiar who they’re comfortable with and who will be alert to changes in their condition and act accordingly.

If a doctor is needed, or there are any problems with medication, help will be available and there’s someone in the house with them 24-hours a day to keep them safe.