Lewy Body Dementia
The diagnosis of LBD is not always straightforward and it can take several consultations before it is recognised correctly.
This leaflet is provided by the Lewy Body Society the only charity in Europe exclusively concerned with dementia with Lewy bodies. Their mission is to raise awareness amongst the general public and educate those in the medical profession.
In the UK people with all forms of dementia tend to have symptoms for many months, and sometimes years, before seeking professional advice. Sometimes they are too embarrassed to discuss their symptoms with family or friends and are reluctant to visit a doctor. This means many people are often not diagnosed until the later stages of the condition.
You may have come across information describing some of the common symptoms of early stage dementia. Memory problems are not always the main symptoms of the onset of dementia. So it is possible that dementia may be developing whilst your memory is still good. This is true of Lewy body dementia (LBD).
You may start to have problems with day-to-day tasks, such as using the phone, making up a shopping list, managing money, dealing with your medication or planning a journey, which cannot be explained by changes in your physical health alone.
People diagnosed with Parkinson's disease might assume these changes are simply due to symptoms of the disease. If the symptoms seem to have developed more quickly than usual over the course of a few months, it could be a sign of dementia.
Each type of dementia has different symptoms. The early symptoms of LBD (visual hallucinations, fluctuation in alertness and slowing of movements) can often be mistaken for physical illness, especially in an older person. For example, someone with an infection might have visual hallucinations and they might be more drowsy than normal. These symptoms may persist long after the person has recovered from the infection.
The person might also have falls, not necessarily caused by obvious tripping. They might become extremely restless at night, thrashing and throwing off the bedsheets in their sleep.
- Memory impairment: forgetfulness, lack of interest, difficulties concentrating over long periods of time, difficulties with visual and spatial awareness, slower thinking speed and increased risk of mental confusion.
- Motor: Parkinsonism (slow and small movements), stiff limbs, shuffling walk and some tremor.
- Psychiatric: hallucinations, delusions (unrealistic beliefs), mood swings, agitation, aggression, sleepwalking, depression, anxiety and obsessive/compulsive symptoms.
- Sleep disorder: falling asleep during the day, trouble falling asleep at night, difficulty staying asleep throughout the night, vivid/scary dreams, acting out dreams and restless legs syndrome.
- Autonomic dysfunction: fall in blood pressure (causing dizzy spells), poorly regulated sweating and body temperature, dry skin, bladder and bowel problems and irregular heartbeat.
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What else might it be?
A doctor will also consider other possibilities such as Alzheimer's disease or another type of dementia, neurological condition or physical illness which may lead to drowsiness and confusion, or other types of brain disorders.
Going for a diagnosis
The earlier the main symptoms are identified the more likely the correct diagnosis will be made.
Most GPs will only see a person with LBD on rare occasions, so it will help if you keep a record of your symptoms and how often they occur, and question whether your doctor thinks LBD may be the cause.
The diagnosis is best made by people who have the most experience in dealing with the problem. These are usually Old Age Psychiatrists, Geriatricians and Neurologists (dependent on what symptoms are predominant). Ask for a referral to one of these specialists. Your GP will generally know who the most suitable person locally is.
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What happens after referral?
Once your GP has referred you to a specialist, you may be required to attend an appointment at a specialist clinic. When you attend the clinic you can expect someone to ask about your symptoms, your medical history and your background. Various tests are carried out and usually a family member is asked to discuss any changes they have noticed in you. They may be asked to complete an assessment form to help clinic staff understand the problems clearly. Sometimes this is done during one long clinic session and sometimes it is split over two visits. Normally you will have a short physical examination. A nurse may also be in attendance. This is the nurse who is likely to see you once any diagnosis has been made.
Tests for Lewy body dementia
There is no specific blood test for LBD. However, blood and urine samples are usually tested to exclude the possibility of other causes of your symptoms.
At the specialist clinic, further assessments and investigations including brain scans are usually carried out.
There are a number of different types of brain scans. Some scans (CT and MRI scans) look at how the different parts of the brain fit together, rather than how the parts work together.
A diagnosis cannot be made by just looking at these types of scans; other medical information will also be needed.
Currently, there is no specific treatment for LBD. There are, however, a class of drugs approved for improving cognition for people with Alzheimer's disease which can be effective for people with LBD, improving cognition and helping control hallucinations.
Medication for other symptoms, such as Parkinsonism and REM sleep disorder, may also be prescribed. Please discuss the benefits and risks with your doctor.
Other non-medical treatments, such as diet, physiotherapy, speech therapy and occupational therapy, can also help with managing some of the symptoms.
People with LBD are usually sensitive to many types of medication generally, and their condition may be affected by other illness elsewhere in the body. Medication and other illnesses may cause or increase drowsiness, fluctuations in consciousness, powerful hallucinations or more delusions in someone with LBD. For that reason the clinic may advise that if you see signs of illness, contact your GP immediately and do not wait to see if the illness will go away.
Currently, the most reliable method of investigating LBD is a dopamine transporter brain scan. This scan is performed using a technique called SPECT, which shows the loss of a chemical neurotransmitter (dopamine) in the brain. This method is effective, as loss of dopamine usually occurs in LBD, but rarely in Alzheimer's disease or other types of dementia.
If you are speaking to an Out of Hours Service always mention that you have been diagnosed with LBD.
What your diagnosis means
Your doctor may describe the diagnosis in a number of different ways:
- "It is an illness which is different from Alzheimer's disease." Your doctor should then explain that unlike people with Alzheimer's, people with LBD typically fluctuate in states of consciousness from day to day or even from hour to hour; that they are likely to have problems with balance, movement and gait, and may experience visual hallucinations. Unfortunately it is likely that these symptoms will get worse over time.
- "It is an illness related to Parkinson's disease." Your doctor should then explain that some of the symptoms are similar to those of Parkinson's. These are referred to as Parkinsonisms and include problems with balance, walking and slowness of movement. Although Lewy bodies are present in both LBD and Parkinson's disease, they are found in different areas of the brain.
After the diagnosis
After the diagnosis you may be referred to an Older People's Mental Health Team. In many cases the nurse who will be seeing you will have been present when you were diagnosed. If you have been started on medication, staff may wish to repeat some tests after about 6 months. These drugs are seen as long-term treatment rather than something to improve matters in the first few months.
There are a number of sources of support, including Admiral nurses, local voluntary agencies, local authority services, dementia navigators and eldercare facilitators.
The Lewy Body Society (see end of leaflet) is a registered UK charity which has a website full of information. Also, there is a helpline for support provided by Dementia UK's Admiral Nurse DIRECT (see end of leaflet).
Discussing the diagnosis with others
This is a very personal decision and staff will not force you to discuss your diagnosis with family members if you are not ready. If needs be, staff from the Older People's Mental Health Team can support you when you are ready to discuss your diagnosis with your family and friends.
Content used with permission from the Lewy Body Society's Lewy Body Dementia Referral for a Diagnosis (April 2014). Copyright for this leaflet is with the Lewy Body Society.
Further reading and references
Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease; NICE Technology appraisal guidance, March 2011 - updated June 2018
Guidelines for the diagnosis and management of Alzheimer's disease; European Federation of Neurological Societies (2010)
Dementia; NICE Quality Standard, June 2010
Dementia: Supporting people with dementia and their carers in health and social care; NICE Clinical Guideline (November 2006, last updated September 2016)
Dementia: independence and wellbeing; NICE Quality Standard, April 2013
Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset; NICE Guidelines (October 2015)
Dementia; NICE CKS, August 2016 (UK access only)
Dementia Fact Sheet; World Health Organization (WHO), September 2021
Robinson L, Tang E, Taylor JP; Dementia: timely diagnosis and early intervention. BMJ. 2015 Jun 16350:h3029. doi: 10.1136/bmj.h3029.
Health matters: midlife approaches to reduce dementia risk; Public Health England Guidance, March 2016 - updated 28 June 2021
Laver K, Dyer S, Whitehead C, et al; Interventions to delay functional decline in people with dementia: a systematic review of systematic reviews. BMJ Open. 2016 Apr 276(4):e010767. doi: 10.1136/bmjopen-2015-010767.
Howard R, McShane R, Lindesay J, et al; Donepezil and memantine for moderate-to-severe Alzheimer's disease. N Engl J Med. 2012 Mar 8366(10):893-903. doi: 10.1056/NEJMoa1106668.
Brechin D et al; Alternatives to antipsychotic medication: Psychological approaches in managing psychological and behavioural distress in people with dementia, The British Psychological Society, March 2013
Living with dementia - Planning ahead; Alzheimer's Society