There are no current treatments available to cure Lewy Body Dementia. It is a degenerative condition. 

However many of the symptoms of Lewy Body Dementia  can be treated. Your doctor may prescribe medication or refer you to other health care professionals for therapies which may help ease your symptoms.. You may ask your consultant, GP , nurse specialist or pharmacist about concerns you may have about your treatment. 

Your Lewy Body Dementia treatment plan will need to strike a balance that is right for you. For example, sometimes the medication used to treat your motor symptoms may make your cognitive problems worse and vice versa. 

Below we will discuss how we manage the different symptoms . It includes the use of medication and non-pharmaceutical/ practical approach.

Medication called cholinesterase inhibitors (e.g Donepezil, rivastigmine, galantamine) which are also used in Alzheimer’s disease are known as “cognitive stimulants” as they can stabilise the loss of memory and attention span in Lewy Body Dementia for a variable period of time.  . Some people cannot tolerate these medications due to side effects. This class of medication can sometimes help with other symptoms in Lewy Body Dementia such as hallucinations. Some patients who do not respond well to cholinesterase inhibitors may be prescribed a different type of medication called memantine. This is another “cognitive stimulant” medication.

You may be referred to a neuro psychologist for further assessment and support in managing these symptoms. 

In order to preserve both a healthy brain and body there are certain steps people with Lewy Body Dementia and their families can take. Changes in cognition can be affected by other factors such as:

• Exercise. Keeping physically active helps not just your physical and mental health but also helps preserve  cognitive abilities. Pick an activity you can do and enjoy
• Diet. Eating a healthy diet that doesn’t contain too much sugary foods is good for brain health.
• Ensuring your cholesterol and other cardiac (heart) risks are managed is important. We advise seeing your GP about this.
• Social interaction is very important for a good quality of life. It has also been shown to help with cognitive function.
• Keeping busy and  developing interests is vital for good brain health. Some people find games like Sudoku helpful. Find something that interests you.

Behavioural symptoms like agitation, mood fluctuations and paranoia can be very distressing for people with Lewy Body Dementia and those who live with /care for them.. Worsening memory and delusions can cause frustration and upset.

The management of hallucinations and delusions are among the biggest challenges for carers and family members. Carers can help by responding to the fears expressed. Rather than arguing or responding factually to comments that may not be true, carers should offer sympathy and concern, which will help maintain the person’s dignity and limit further tension.

Cholinesterase inhibitors  may reduce hallucinations and other psychiatric symptoms in some people with LBD. But these medications can have unpleasant side effects, such as nausea and are not always effective. As cholinesterase inhibitors do not have an immediate effect on behaviour they should be considered only as part of a long-term strategy. As with all medications given to people with LBD, they should be approached cautiously and monitored closely.

There are certain anti psychotic medication which should be used very cautiously with people with Lewy Body Dementia. Medication such as haloperidol can make your condition worse.

Anti-depressants can also be used to treat the mood problems which arise in Lewy Body Dementia.

Worsening of other physical problems can make people with dementia more agitated and affect their mood and cognition.  Common problems such as constipation, dehydration and infection can worsen these behavioural problems. Delirium refers to a sudden change in mental state for the worse.. It can also be caused by environmental factors like over stimulation, lack of sleep, change in environment and pain. All of these factors can occur when someone has to come to hospital. 

People with Lewy Body Dementia can be mistakenly diagnosed as having delirium as visual hallucinations and changes in attention often occurs in both conditions.

Medication called levodopa which is used in Parkinson’s Disease may be prescribed for motor symptoms in Lewy Body Dementia. Some of the names of these medications are ‘Sinemet’ or ‘Madopar’. Your doctor will ask you to monitor your response to these medication.  It may take some time to find the right medication at the right dose which suits you. Unfortunately these medications can make the cognitive & behavioural symptoms of Lewy Body Dementia worse so a balance must be found. It is recommended that new or drastic changes in symptoms are reviewed by your doctor or specialist. 

Attending physiotherapy appointments is an important part of your treatment for motor problems. A program of activity and appropriate exercises will be recommended to you. Keeping active will help in improving your ability to maintain your strength and flexibility.

Your doctor may prescribe a medication called Melatonin which may help with REM Sleep behaviour symptoms. Another type of medication called Clonazepam may be used if required. 

Certain sleep problems, however, can be addressed without medications. Increasing daytime exercise or activities and avoiding lengthy or frequent naps can promote better sleep. Avoiding alcohol, caffeine and chocolate late in the day can also help with insomnia. Some over-the-counter medications may affect sleep, so it is important that all medications and supplements are reviewed by a doctor.  

As injury can occur from acting out dreams, all patients with this problem and their bed partners should be advised on modifying the sleeping environment to prevent injury. For patients with mild symptoms, this may be all that is needed.

Sharp or easily breakable items (such as lamps) should be removed from the immediate sleeping area. In the event of continued vigorous behaviours, sleeping alone is advised. Many patients resort to using padded bed rails or sleeping in a sleeping bag.

For some people a bed alarm may be needed.

We are including the most common and problematic of these types of symptoms which are orthostatic hypotension, urinary incontinence and constipation

For some people with Lewy Body Dementia a rapid drop in blood pressure when standing is a  very prominent problem. Initially we recommend simple practical measures to help such as: 

• Stand up slowly and give your body time to adapt. This is especially important when you get out of bed in the morning. Start by sitting up and waiting a moment. Then swing your legs over the side of the bed and wait some more. When you do stand up, make sure you have something to hold onto in case you start to feel dizzy.
• Make sure you drink enough fluids, especially in hot weather.
• Wear “compression” stockings. The ones that go to your waist are most helpful, but they can be hard to use.
• Add salt to your diet.

As this problem develops your doctor may have to prescribe medication to prevent the sudden drop in blood pressure when you stand. He/She may start with a tablet called Flurodicortisone or Midon.. Regular checking of blood pressure may be required.

Urinary incontinence is the involuntary (accidental) loss of urine resulting in wetting of clothes or bed clothes.  There are many factors and causes of this problem , many of which are treatable. Consult your doctor or nurse about if you experience this.  Some patients with Lewy Body Dementia experience it at an early stage of the condition. A thorough assessment of the possible causes needs to take place. 

Possible Treatable factors ; 

• Possible overuse of caffeine and drinks with a diuretic effect ( an effect that increases the need to pass urine urgently)
• Ensure adequate hydration. Not drinking will make matters worse.
• Check urine for signs of infection.
• Men should have a prostate check.

Aids and equipment may help adjust to the cause of the problem.

• For example if fine motor skills make unbuttoning clothes , then adjusted zips/Velcro can be used.
• Use of urinals may be required.
• Liaise with PHN if incontinence wear needed.
• Medication and their timing may be required.

Constipation results in a decreased ability to pass a bowel motion. It can cause a lot of problems. One of which will be your medicines for motor systems may not be absorbed as well. Bloating, fatigue, nausea and cramps can also occur. In some cases constipation can cause a delirium making cognitive and behavioural symptoms much worse.

Preventing and treating constipation with medicines may be required. These will be recommended by your doctor. Laxatives such as ‘Movicol’  and  ‘Duphalac’ are commonly used. There are non pharmacological ways to prevent and treat constipation such as :

• Drink plenty of water.
• Include an adequate amount of fibre in your diet. Consult your dietician, doctor or nurse about this.
• Keep active.
• Keep an eye on the nature of your bowel habit. If your stool becomes harder than normal, you may have a problem. Prevent it before it gets worse.