Lewy Body Dementia: time to prepare for late stage and to be equipped for it

Please be aware that some of our posts may be upsetting and even shocking to those seeking information on Lewy Body Dementia.

Families and carers alike seek information on the condition, but some loved ones are also searching for the more unpleasant facts, no matter how stressful these can be to read sometimes, they just need to know what to expect.

Please keep in mind that not everybody with Lewy Body Dementia experiences the same symptoms, and in most cases the symptoms that they do experience, or do not experience, differ also.

Never accept anything of what you read on the internet or in this blog as absolute fact, and (always) seek medical advice from a qualified practitioner.   

Dementia with Lewy bodies gets its name from microscopic deposits that are found in the brains of people with the condition.

These deposits cause damage to, and the eventual death of, nerve cells in the brain.

Dementia with Lewy bodies develops slowly and tends to progress gradually, like Alzheimer’s disease.

Parkinson’s disease is also caused by Lewy bodies and some symptoms of this disease are shared with dementia with Lewy bodies.

Early symptoms of this type of dementia may also overlap with those of Alzheimer’s disease, but there are several important differences.

Unlike Alzheimer’s disease, in the early stages of dementia with Lewy bodies the person’s attention and alertness often vary widely from day to day, or even during the course of a single day.

This can often be puzzling for those around them.

Most people with dementia with Lewy bodies also have recurrent visual hallucinations.

These are much more common than in early Alzheimer’s disease and are very detailed, often of animals or people.

Misperceptions and auditory hallucinations (hearing sounds that are not real) are also very common.

These symptoms may explain why people with this dementia often falsely believe that they are being persecuted.

Half or more of those affected by dementia with Lewy bodies have movement problems when the dementia is diagnosed, and this proportion increases as dementia progresses.

These symptoms are like those of Parkinson’s disease, such as slowness of movement, stiffness and sometimes tremor.

The person may also have difficulty judging distances and be prone to problems with balance, falls and fainting.

As dementia with Lewy bodies progresses, some of the symptoms become more like those of middle or late stage Alzheimer’s disease, including greater problems with day-to-day memory and behaviours that challenge, such as agitation, restlessness or shouting out.

Worsening of Parkinson-type symptoms means that walking gets slower and less steady.

The risk of falls remains high. The combination of symptoms in a person with dementia with Lewy bodies can be particularly stressful for family and carers.

After the symptoms of dementia with Lewy bodies begin, people live on average for six to twelve years.

However, each person will experience dementia with Lewy bodies differently.

It’s a sad fact, but Lewy body dementia is a progressive disease.

This means that those who have the condition will eventually reach its end stages.

For those who care for someone with Lewy body dementia, this is an upsetting prospect.

But there are things you can do to deal with this.

Here you’ll find information on what symptoms are typical of late stage Lewy body dementia, and advice on how to deal with these symptoms…

All of the different types of dementia begin to look fairly similar once they reach their final stages.

However, there are some symptoms that distinguish late-stage Lewy body dementia from other dementia types.

These are explained below…

Mental symptoms

Although in the early stages of Lewy body dementia, memory difficulties are not a common symptom, by the late stages memory does become affected too.

However, unlike other forms of dementia, people with Lewy body dementia experience fluctuations in their cognition and memory.

They may have periods of lucidity, even right at the end.

Hallucinations and delusions are common in the early and middle stages of the condition, but these become much more frequent by the late stages.

Attention difficulties are also very typical of late-stage Lewy body dementia.

Anxiety, depression and aggressive behaviour can become apparent in someone with late-stage Lewy body dementia, as well as emotional lability.

Emotional lability means having emotions that change very quickly.

One moment they may seem fine, the next they may be in tears, then as quickly as the tears came they may be gone again.

A person with advanced Lewy body dementia will have extreme rigidity.

This means that their muscles will be very tense and stiff.

This will make it very difficult for them to move.

They will require help for most activities because of this, including bathing and dressing.

Sensitivity to touch is also a common symptom.

They may find even very gentle touch extremely uncomfortable.

Lewy body dementia affects a person’s ability to move their facial muscles, making speech very difficult.

Towards the later stages, they will have little to no verbal communication.

The speech that they may have will be extremely quiet and highly unintelligible.

By this point, the person will also have a very impaired swallow, making eating and drinking extremely difficult.

How to deal with the later stages

Of course, when a loved one reaches the final stages of Lewy body dementia, this is a very upsetting time.

However, there are some things you can do to make this period a little easier to cope with…

Educate yourself and others around you

Although Lewy body dementia is the third most common form of dementia behind Alzheimer’s disease and vascular dementia, it is still widely unknown (although it’s actually thought to be the second most common form, due to the frequency of misdiagnosis).

Many people don’t know what the symptoms are, and even more aren’t aware that it even exists.

Because of this, it’s important that you educate yourself and others who come into contact with your loved one, about the symptoms of Lewy body dementia, so that everyone knows what to expect.

For example, if you weren’t aware that people with Lewy body dementia can have periods of lucidity when their cognition improves, you may have false hope that they might get better, only to have this hope dashed when their cognition worsens again.

Knowing that your loved one may have periods of lucidity when they are able to recognise you can allow you to use this time to talk to your loved one and say goodbye.

This may help to give you some closure.

Consult appropriate professionals

A common cause of death in someone with Lewy body dementia is aspiration pneumonia.

This means a severe chest infection which is caused by food or drink entering the lungs, as a result of a weak swallow.

Make sure you consult a speech and language therapist who will be able to advise on the safest consistency of food for your loved one to eat.

This will help to reduce the risk of aspiration pneumonia.

A dietician will also be able advise on the types of food your loved one should be eating, in order to keep their weight up and avoid malnutrition.

This will help to fight off infections which are the most typical cause of death in a person with Lewy body dementia.

A speech and language therapist may also be able to provide strategies and tools to help make communication easier.

This will help to avoid confusion and frustration between you and your loved one.

Please Read Mortality – Approaching Death

Find support

No one should have to struggle alone.

Caring for someone with a progressive condition like Lewy body dementia is both mentally and physically draining.

Make sure you’re getting all the support you’re entitled to, both financial and emotional.

Depending on your loved one’s circumstances, you may be entitled to financial support from your local authority to pay for carers.

At some point, you may be considering a care home for your loved one.

Read these blog posts on when is it time to consider a care home for your loved one with dementia and what to do when you can no longer care for a loved one with dementia, for more information.