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  1. 1. IS18 March 2002 Information sheet Dementia with Lewy bodies This information sheet is for experiences of individual carers of people with carers. dementia with Lewy bodies (DLB). Some people with What is dementia with early DLB may also find it Lewy bodies?..................1 useful. If you require further What is dementia with information about other Lewy bodies?..................2 issues regarding dementia Symptoms......................3 call the freephone Dementia Diagnosis and tests........5 Helpline on 0808 808 3000, Course of the illness.......6 or see our website at Caring for someone with DLB................................6 Treatment and drugs......9 DLB may also be known as What is the cause?.......12 Lewy body dementia, diffuse Useful websites............12 Lewy body disease, Acknowledgements......12 dementia of Lewy body type or Lewy body variant of What is dementia with Alzheimer’s disease. Lewy bodies? Dementia is the general term This information sheet for a gradual progressive includes both medical decline in a person’s memory information about the and other mental abilities. diagnosis and treatment of There are many different DLB, and practical illnesses which can cause information for carers, dementia, but only a few including some of the common ones. The best Page 1
  2. 2. Dementia with Lewy bodies known are Alzheimer’s disease and vascular Dementia with Lewy bodies dementia. is thought to be the second or third most common cause What is dementia with of dementia, accounting for Lewy bodies? 15% to 20% of cases of Dementia is the general term dementia which start after for a gradual progressive the age of 65.1 This means decline in a person’s memory that there could be about and other mental abilities. 11,000 people with DLB in There are many different Scotland. illnesses which can cause dementia, but only a few People who have DLB have common ones. The best microscopic changes called known are Alzheimer’s Lewy bodies2 in the nerve disease and vascular cells of the brain. These dementia. were first described by Frederich Lewy in 1912. He It is only in the last 10 to 15 looked at the brains of years that dementia with people with Parkinson’s Lewy bodies (DLB) has been disease, where Lewy bodies recognised, as the result of are mostly in one tiny area research by psychiatrists and of the brain called the pathologists. This does not substantia nigra. In people mean that it did not exist with DLB they are much before. People with the more widely spread condition would have been throughout the brain. said to have a vascular dementia or Alzheimer’s It is not yet clear what the disease. This misdiagnosis Lewy bodies signify, but it is still occurs, partly because likely that they are a sign of not all doctors are yet aware of the condition, but also 1 Campbell S. Stephens S and Ballard C (2001) Dementia because it is not always easy with Lewy Bodies: clinical features and treatment. Drugs Ageing; 18(6): 397-407 to distinguish between these three common types of 2 Lewy bodies are round deposits within damaged nerve dementia. cells, which are probably formed as the cells try to protect themselves and they are distributed in varying degrees throughout all areas of the brain. Page 2
  3. 3. Dementia with Lewy bodies damage to the nerve cells. Patchy mental They contain various impairment proteins, some of which have The person’s memory been identified. When it is impairment and clear whether these disorientation may be substances are damaging to patchy, with some quite the nerve cells or are the normal memory function. He result of the damage, and or she may communicate how these processes clearly, but may have happen, we are likely to difficulties with what are know a lot about how called the ‘executive Parkinson’s disease and DLB functions’: problem solving, develop, and therefore what planning and the like. treatments could prevent or However, the mental decline treat these conditions in some people with DLB effectively. may be just like it is in someone with Alzheimer’s Symptoms disease. Dementia with Lewy bodies shares the common features Hallucinations of all types of dementia. Seeing or hearing things There is a gradual loss of which are not there is not mental abilities, including very common in Alzheimer’s orientation and memory, disease, but 90% of people reasoning and intelligence, with DLB have hallucinatory with a decline in ability to experiences. Usually these carry out daily tasks. will be visual hallucinations However there are certain such as people, animals or specific characteristics of the inanimate objects. decline which are much more Occasionally the likely in DLB, and less hallucinations are auditory – common in Alzheimer’s of music or voices. Most disease or vascular people with DLB find their dementia. hallucinations are puzzling, rather than upsetting or frightening. Unlike hallucinations in many Page 3
  4. 4. Dementia with Lewy bodies mental illnesses, the person with mobility and other may have quite a lot of neurological problems. insight, realising at times People with vascular that the visitors are dementia may have some of imaginary. However some the neurological problems people have no insight and associated with having small may develop delusional strokes. beliefs about the hallucinations. Other symptoms which people with DLB may get Neurological symptoms include vague weaknesses of People with DLB quite often arms or legs, clumsiness or have vague neurological falls. These symptoms may problems which can include come and go. symptoms that are like those of Parkinson’s disease, but Variability which may not respond well The person’s degree of to the usual treatment given confusion can vary from to people with Parkinson’s moment to moment or day disease, the drug L-Dopa. to day. He or she may have These symptoms are often in episodes of quite sudden just one part of the body, severe confusion, which then and may include: pass. The person’s insight is • rigidity and stiffness also likely to vary: at times • difficulty starting he or she may realise that movements (known as things are not right, that the ‘bradykinesia’) hallucinations are imaginary, • slowness of movement etc, but at other times he or • tremor. she may have no apparent understanding of his or her This pattern is different from illness. other kinds of dementia. Neurological problems are Sleep disturbance rare in the early stages of People with DLB may be Alzheimer’s disease, wakeful at night, sometimes although people in the very not sleeping at all for night late stages develop problems after night. The person may Page 4
  5. 5. Dementia with Lewy bodies not realise this; but it can of symptoms like those of course be very distressing Parkinson’s disease for carers. Some people with mentioned above. For this DLB seem to experience an reason it is most important unusual condition in which that there is someone else they lose the normal there if any of these drugs paralysis that we normally are given to anyone with have when we sleep. This early dementia. If signs of means that they may be neuroleptic sensitivity physically active, or act out develop, the drug should not dreams in the night. There be given again. has been a suggestion that particular drugs (clonzepam Diagnosis and tests and desipramine) can help One problem with DLB is this. getting a correct early diagnosis, as this dementia Neuroleptic sensitivity can often be mistaken for At least 50% of people with Parkinson’s disease, DLB are over-sensitive to the depression or another side-effects of neuroleptic dementia. Often relatives drugs (a type of drug used and the person with DLB do for illnesses such as not expect a connection schizophrenia and also used between hallucinations and to treat hallucinations and dementia and will therefore delusions or as not mention this to the GP. tranquillizers)3. Even a tiny Many GPs will not recognise dose may cause the person early signs of DLB and will to become sedated, therefore not pick up on the unsteady or develop diagnosis quickly. Ask to be referred to a specialist in 3 Neuroleptics were originally developed to treat order to obtain an accurate diagnosis. schizophrenia and other major mental illnesses. They have been found to be sometimes useful for other conditions where hallucinations or delusions occur and have also been used as general tranquillisers, to calm disturbed behaviour in dementia and other conditions. Examples are To diagnose DLB, a specialist chlorpromazine (Largactil), risperidone (Risperdal), (usually an old age olanzapine (Zyprexa), haloperidol, trifluoperazine psychiatrist) will take a (Stelazine) and pericyazine (Neulactil). Thioridazine (Melleril) used to be given very commonly to people with precise history of the pattern dementia, but has now largely been withdrawn from use. Page 5
  6. 6. Dementia with Lewy bodies of the person’s symptoms. DLB because of the risks This is so that he or she can caused by over-sensitivity to be sure first of all that the neuroleptic drugs and person has dementia, as because other drug there are other reasons why treatments may help. a person may experience symptoms such as visual Course of the illness hallucinations (for example, Unlike Alzheimer’s disease, people who are in delirium, which usually begins very the confusion that is caused gradually, DLB often starts by a physical illness). The quite rapidly or acutely, with specialist will then exclude quite a fast decline in the other possible diagnoses, first few months, although including vascular dementia later there may be some and Alzheimer’s disease. levelling off. DLB tends to progress faster than A CT or CAT scan4, or Alzheimer’s disease and can magnetic resonance imaging last from 5 – 7 years, (MRI)5 may reveal although this will vary from degeneration, or shrinkage, person to person. of the brain. A SPECT scan 6, may be able to show up Caring for someone some of the changes that are with DLB happening, but this is still being investigated. However Information and support the Lewy bodies themselves If you need help with a can only be seen by looking particular problem, specific at brain tissue after death. information or access to a service it is vital that you ask Early accurate diagnosis is for it. Speak to your GP or particularly important with social worker or Alzheimer Scotland – Action on 4 CAT or CT scans are like x-rays but more detailed and Dementia for information allow the specialist to see inside the brain. and advice. Contact a local 5 MRI uses radio waves and a strong magnetic field to give carers group to find out a clear and detailed picture of the brain. about other people who are 6 SPECT scans look at the pattern of blood flow in the caring or have cared for brain. Page 6
  7. 7. Dementia with Lewy bodies someone with DLB, as they between reality and what is will often be a vital source of happening in their information and support. hallucinations and delusions. Being able to deal with these Very few people know what symptoms is important if the DLB is, and carers often find carer is to cope effectively. that there is little support Ask for advice and support from other people, as they from the person’s specialist do not understand what they or GP, and seek support for are going through. As a yourself, for example result carers can feel very through a local dementia isolated. Being able to talk to carer support group. someone who understands is very important. Alzheimer Insight Scotland’s Dementia Some of the most distressing Helpline, on freephone times for carers can be when 0808 808 3000 is open 24 the person they care for hours a day for information understands what is and emotional support, and happening to them. One can provide a free carer found it particularly information pack and help distressing, when her you find services and husband was in a care home, support near you; or see the on days when he had insight website at into his condition. He would ask to come home with her, Dealing with as he did not want to stay in hallucinations and the home anymore. For this delusions carer this seemed worse Hallucinations and delusions than when he was unaware are often the most difficult of the changes taking place symptoms to deal with. They in their lives. Seek support can cause a great deal of from family, other carers and emotional strain for carers. professionals to help you Some people with DLB will cope with the distress the know they are experiencing fluctuating insight of LBD can hallucinations, while others cause. will not be able to distinguish Page 7
  8. 8. Dementia with Lewy bodies Sleeping Dealing with dribbling Some people with DLB are Dribbling can cause sleepless or physically active embarrassment and may in their sleep. (See Sleep prevent the person wanting disturbance on page 4.) One to go out. Some carers find carer reported problems it hard to deal with this when her husband entered problem and may feel they very deep sleeping phases cannot take the person out. and she could not wake him. This is a symptom which This type of deep sleep can people with Parkinson’s seem like a stroke. If the disease often have. There person has any problems are drugs which can be related to sleep, always prescribed by the person’s contact the GP to ensure GP which help dry up the there are no other problems saliva. However, some carers and for treatment and have reported that these advice. drugs can cause additional constipation problems Vision because they are Some people with LBD dehydrating. experience problems with vision, with some people Other strategies to help suffering from double vision. There are strategies that can This can cause problems help, especially in the early with many activities stages of DLB. These include including eating, as the keeping a set routine, person can no longer see the providing written or ‘alarm food clearly to pick it up. call’ reminders and providing Make sure the food is on a reassurance. People with plain plate and that the table DLB will often have times or tablecloth is a different when they have a lot of colour from the plate, as this insight into their condition helps the person to and will need a great deal of distinguish between the support. Speech and food, plate and table. language therapists can help people who are having difficulty in finding the right Page 8
  9. 9. Dementia with Lewy bodies words or in following for a specific course of conversations. Closely therapy. The present form of monitoring the person’s treatment usually focuses on condition and the treating the symptoms. This progression of the dementia means using drugs to control will help provide vital symptoms such as Parkinson information for his or her type symptoms and doctors. hallucinations and delusions. A group of drugs developed Services for treating Alzheimer’s There are many services that disease may help the person with (‘acetylcholinesterase DLB and his or her carer to inhibitors’ or ‘cognitive cope more easily. The person enhancers’) may also help with LBD is entitled to a people with DLB. community care assessment from the social Acetylcholinesterase work department to work out inhibitor or cognitive what services might help. enhancer drugs The carer is also entitled to a Acetylcholinesterase (AChE) carer’s assessment. inhibitor drugs are also known as cognitive Contact your local social enhancers. They include work department to ask for donepezil (Aricept), assessments. The Dementia rivastigmine (Exelon) and Helpline (0808 808 3000) galantamine (Reminyl). can explain about These drugs are considered assessments and services by many psychiatrists as the and can put you in touch first line of therapy in DLB. with your local Alzheimer Scotland – Action on Donepezil and rivastigmine Dementia project for studies have shown that support. AChE inhibitors may be a safe and effective alternative Treatment and drugs to neuroleptic/anti-psychotic There is no cure yet for DLB. treatment. One study Research continues to search showed that people with DLB given donepezil (Aricept) Page 9
  10. 10. Dementia with Lewy bodies showed an improvement in understanding, behaviour The effect of these drugs and psychiatric symptoms, varies from person to although it is important to person. Some will not notice recognise that they are not any effect, while others may suitable for everybody and find their condition improves will not help everyone who slightly or they stay the tries them.7 However, there same when they would have is a problem with prescribing expected to deteriorate. these drugs for DLB, as they People with DLB may see an are only licensed in the UK improvement in behavioural for the treatment of mild to symptoms such as apathy, moderate Alzheimer’s hallucinations and delusions. disease. Speak to the Trials indicate that these specialist treating the person drugs may delay the with DLB to see if one of progression of the symptoms these drugs might be for up to nine months on suitable and if he or she is average. Drugs should not able to prescribe it. 8 be stopped after nine months as some people may These drugs prevent the benefit for longer than this.9 breakdown of acetylcholine, a chemical which carries Atypical anti-psychotic messages between brain drugs cells. This means that there If treatment with AChE is more acetylcholine inhibitor drugs fails, you can available to transmit discuss with the doctor the messages between nerve use of atypical cells. This may temporarily neuroleptic/anti-psychotic improve or stabilise the drugs. Despite what was said symptoms of the disease. above about neuroleptic drug 7 Samuel W et al (2000) Better cognitive and sensitivity (see Neuroleptic psychopathologic response to donepezil in patients sensitivity on page 5) some respectively diagnosed as dementia with Lewy bodies: A preliminary study. International Journal of Geriatric people with DLB are able to Psychiatry 15, 794-802 8 Gurling K, Kelly, J, Ramsay C, Rodriguez C. (2001) 9 Australian Alzheimer Association. Feb. 2001 Website Dementia with Lewy Bodies and Dementia in Parkinson’s information on drugs. Disease: Special considerations. In Medication and Dementia. Dementia Services Development Centre Page 10
  11. 11. Dementia with Lewy bodies tolerate treatment so that clonazapam and desipramine their hallucinations are to the doctor. reduced. The utmost caution is needed. The drugs need to There has been no research be started in the very lowest into any ‘alternative’ doses and the patient should therapies for DLB. be monitored regularly in the first days of treatment or Problems with drug after any change in dose. treatments Early reports on some of the Anti-parkinson drugs such as more recently developed L-dopa (levodopa) and ‘atypical’ anti-psychotic Sinemet (a combination of drugs have suggested that levodopa and carbidopa) olanzapine (Zyprexa), which may help reduce the quetiapine (Seroquel) or tremor and loss of muscle risperidone (Risperdal), may movement may make the be safe to use. person’s hallucinations and delusions worse. Other treatments If the person cannot tolerate Similarly, neuroleptic/anti- neuroleptic drugs, and the psychotic drugs prescribed AChE inhibitor drugs are for hallucinations may in fact ineffective, but hallucinations make the muscle movement or other symptoms are symptoms worse. distressing, the doctor will Sometimes there is poor usually try other tranquilliser recovery of the muscle drugs, but there is no movement even after particular evidence that stopping the medication. In these give specific help to the worst cases, a patient the symptoms of DLB. treated with these drugs could become catatonic, lose If the person has severe cognitive function and/or sleep disturbance the doctor develop more muscle will wish to try a hypnotic rigidity, which could threaten drug, but these are their life. Some commonly sometimes ineffective. You used drugs which should be may need to suggest trying used with great caution, if at Page 11
  12. 12. Dementia with Lewy bodies all, for people with DLB are chlorpromazine, haloperidol, Lewynet: or thioridazine. ology/lewy/lewyhome.html - What is the cause? mainly medical information The cause of DLB is on DLB, plus links to other uncertain. There are certain organisations’ websites. similarities with Alzheimer’s disease and Parkinson’s Acknowledgements disease. Genetic studies are Grateful thanks to carers trying to discover which Kathleen Balchin and Ann genes may contribute to the Little and to Jenny development of DLB, but Henderson and Alan Jacques, these are still at an early who all generously gave stage. Just as the amyloid their time and experience to protein may play a central help with the development of role in Alzheimer’s disease this information sheet. there may be a protein or proteins which are central to This information sheet was produced as the nerve cell damage in part of the Dementia Carers Project, funded by the Scottish Executive under the DLB. One candidate is Carers’ Strategy for Scotland. alpha-synuclein, which is found within the Lewy bodies themselves. Useful websites Alzheimer Scotland – Action on Dementia: - over 500 pages about a wide range of issues relating to dementia, including caring, support, treatment, research, campaigns, training, volunteering and local services. Page 12
  13. 13. Dementia with Lewy bodies Alzheimer Scotland 22 Drumsheugh Gardens Edinburgh EH3 7RN Telephone: 0131 243 1453 Alzheimer Scotland - Action Fax: 0131 243 1450 on Dementia is a company Email: limited by guarantee and is recognised as a charity by the Inland Revenue. Registered in Scotland No. 149069. Scottish Charity No. SC022315. Find us on the internet at Page 1 13