Dementia with Lewy bodies

Dementia with Lewy bodies - Illnesses & conditions | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Brain, nerves and spinal cord Dementia with Lewy bodies Dementia with Lewy bodies About dementia with Lewy bodies Symptoms of dementia with Lewy bodies Diagnosing dementia with Lewy bodies Treating dementia with Lewy bodies About dementia with Lewy bodies Dementia with Lewy bodies, also known as Lewy body dementia, is a common form of dementia estimated to affect more than 100,000 people in the UK. The term dementia describes a loss of mental ability (cognitive impairment) associated with gradual death of brain cells. Its rare in anyone younger than 65. Symptomsusually develop gradually and become more severe over the course ofseveralyears. Signs and symptoms People with dementia with Lewy bodies not only experience problems with memory and judgement, like those with Alzheimers disease , but are also likely tohave difficulties with concentration and visual perception (recognising objects and making judgements about where they are in space). They may experience: slowed movement, stiff limbs, and tremors recurrent visualhallucinations (seeing things that arent there) sleep disturbances, including sleepiness during the day fainting, unsteadiness, and falls People with the conditiontend to swing from a state of alertness to drowsiness or staring into space. These extreme changes may be unpredictable and happen from hour to hour or day to day. Read more about the symptoms of dementia with Lewy bodies What causes dementia with Lewy bodies? Dementia with Lewy bodies is caused by deposits of anabnormal protein called Lewy bodies inside brain cells. These deposits, which are also found in people with Parkinsons disease , build up in areas of the brain responsible for things such as memory and muscle movement. Its not clear why the deposits develop and how exactly they damage the brain, but its thoughtthey disrupt the brains normal functions by interfering with chemical signals transmitted from one brain cell to another. Dementia with Lewy bodies usually occurs in people with no family history of the condition, althoughthere have been reports of rare cases that seem to run in families. Diagnosing dementia with Lewy bodies If you think you may have early symptoms of dementia, its a good idea to see your GP. If youre worried about someone else, encourage them to make an appointment, and perhaps suggest that you go along with them. Your GP can do some simple checks to see if there is chance you could have dementia, and they can refer you to a memory clinic or another specialist clinic if necessary. At one of these clinics,you will be asked about your symptoms and have a physical check-up and memory test. You may also have blood tests and brain scans. The results of these checks and tests will give your doctor a good idea as to whether your symptoms are caused bydementia with Lewy bodies, another type of dementia, orsomething elseentirely. Read moreabout how dementia with Lewy bodies is diagnosed How dementia with Lewy bodies is managed There is no cure for dementia with Lewy bodies or anymedication that will slow it down. However, a few different medicines can be effective in controlling some of the symptoms. In particular,acetylcholinesterase inhibitors (used to treat Alzheimers disease ) have been shown to improve symptoms such as hallucinations and confusion in some people. Supportivetreatments such asphysiotherapy, occupational therapy , and speech and languagetherapy can help improve any problems with movement, everyday tasks, and communication. Psychological therapies and specific dementia activities , such as memory cafs, can also helpwith memory loss, confusion, and feelings of disorientation. Read more about treating dementia with Lewy bodies Outlook How quick dementia with Lewy bodies progresses varies from person to person. Home-based help will be needed, and some people will eventually need residential care in a nursing home. The average survival after the time of diagnosis is similar to that of Alzheimers disease around five to eight years. However, as with Alzheimers disease, this can be highly variable. If you or a loved one has been diagnosed with dementia, remember that you are not alone. The NHS, social services, and voluntary organisations will be able to provide advice and support to help you and your family. Symptoms of dementia with Lewy bodies The symptoms of dementia with Lewy bodies usually develop gradually and become more severe over the course of a few years. Like other forms of dementia, thecondition causes problems with: thinking speed language understanding judgement memory (although significant memory loss may not occur until later on) People withdementia with Lewy bodies may also have other symptoms that can help distinguish it from other types of dementia, such as: extreme swingsbetween alertnessand confusion or drowsiness, which may happen unexpectedly and change from hour to hour or day to day slow movement, stiff limbs, andtremors (as seen in Parkinsons disease ), which cause shuffling when walking seeing or hearing things that arentreal (hallucinations), which canrange frompleasant to distressing fainting, unsteadiness, and falls sleep disturbances, whichcan cause talking in your sleep or acting out dreams loss of facial expression difficultyswallowing (dysphagia) depression These symptoms can make daily activities very difficult and can lead to further health problems, such as injuries from falls, and chest infections caused by accidentally inhalingfood instead of swallowing it. Seeking medical advice If you think you may have early symptoms of dementia, its a good idea to see your GP. If youre worried about someone else, encourage them to make an appointment and perhaps suggest that you go along with them. Symptoms of dementia can have a number of different causes. Your GP will be able to carry out some simple checks to try to find out what the cause may be, and they can refer you to a specialist for further tests if necessary. Read more about diagnosing dementia with Lewy bodies Diagnosing dementia with Lewy bodies Confirming a diagnosis of dementia can be difficult, particularly when the condition is in its early stages. This is because many of the symptoms of dementia can also be caused by other conditions. For dementia withLewy bodies to be diagnosed correctly, you will have a number of tests and assessments, including: an assessment of your symptoms  for example, whether you have typical symptoms of dementia with Lewy bodies a full assessment of your mental abilities a physical examination a review of the medication you are taking a range of tests, including blood tests , to rule out other possible causes of your symptoms, such as a vitamin B12 deficiency brain scans, such as a computerised tomography (CT) scan or a magnetic resonance imaging (MRI) scan , whichcan check for signs of a stroke, brain tumour or brain shrinkage asingle photon emissionCT (SPECT) scan, which looks at the dopamine system in the brain, can also sometimeshelp Some of these tests can be carried out by your GP. Some will be carried out by other specialists, such as a neurologist (an expert in treating conditions that affect the brain and nervous system), an elderly care physician, or a psychiatrist with experience of treating dementia. Assessing your mental abilities The Mini Mental State Examination (MMSE) is widely used to help test mental ability. The MMSE can be used to assess a number of different mental abilities, including: short- and long-term memory attention span concentration language and communication skills ability to plan ability to understand instructions The MMSEinvolves a series of tasks, which togethercarry amaximum score of 30 points. Exampletasks include: memorising a short list of objects and then repeating the list back correctly identifying the day of the week, the date, or the year The MMSE is not a test to diagnose dementia, but its useful for assessing the level of mental impairment a person with dementia may have. Treating dementia with Lewy bodies Theres currently no cure for dementia with Lewy bodies, but treatments can help manage the symptoms. First of all, your future health and social care needs will need to be assessed and a care plan drawn up. Thisis a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance, such as: what support you or your carer need for you to remain as independent as possible whether there are any changes that need to be made to your home to make it easier to live in whether you need any financial assistance Read more about care plans Medication Medication cannot stop the progression of dementia with Lewy bodies, butit can sometimes help reduce the symptoms. Acetylcholinesterase inhibitors Acetylcholinesterase inhibitors, such asdonepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon), may help improve hallucinations, confusion, and drowsiness in some people. These medicineswork by increasing levels of the chemical acetylcholine in the brain, which improves the ability ofthe brain cells to send signals to each other. Common side effects ofacetylcholinesterase inhibitors include feeling and being sick, diarrhoea , headaches , fatigue (extreme tiredness), and muscle cramps. Othermedications Other medications that may help control some of the symptoms of dementia with Lewy bodies include: levodopa (a medication used to treat Parkinsons disease ) can help reduce movement problems, although it can also worsen hallucinations and other psychotic symptoms, so it needs to be carefully monitored by your doctor antidepressants may help you cope if you have depression clonazepam can sometimes help improve your sleep if you experience sleep disturbances Antipsychotics, such as haloperidol, should be avoided wherever possible, and should only be usedto treatseverely challenging behaviour that is putting you or others at risk of harm. This is because they can cause a range of serious side effects, including rigidity and immobility. If antipsychotics are needed, they will be prescribed at the lowest possible dose, for the shortest possible time, by a specialist experienced in treating dementia with Lewy bodies. Supportive measures andtreatments In addition to medication, there area number of therapies and practical measures that can help make everyday living easier for someone with dementia. These include: occupational therapy to identify problem areas in everyday life, such as getting dressed, and help work out practical solutions speech and language therapy to help improve any communication or swallowing problems physiotherapy to help with movement difficulties psychological treatments, such as cognitive stimulation , to help improve memory, problem-solving skills and language ability relaxation techniques, such as massage, and music or dance therapy home modifications, such as removing loose carpets and potential trip hazards, ensuring the home is well lit, andadding grab bars and handrails checking for problems with vision and hearing that could be contributing to hallucinations Read more about living well with dementia Legal matters If you have been diagnosed with dementia, you will need to make arrangements for your care that take into account thegradual decline in your mental abilities. Thisshould include ensuring that your wishes are upheld ifyoure not able to make decisions for yourself. You may wish todraw up anadvance decision after first receiving a diagnosis of dementia. This makes your treatment preferences known now, in case you are unable to do this in the future. You may alsowanttoconsidergiving a relativelasting power of attorney . This is the power to make decisions about you if you are unable to. Read more about managing legal affairs for someone with dementia Advice for carers If youcare for someone with dementia, you may find it helpful to read more about: respite care this can allow you to take breaks from caring legal issues for carers  such as what to do when someone can no longer make decisions for themselves benefits for carers  such as allowances and tax credits that may be available looking after someone with dementia Telecare Self-Check online tool Visit the Telecare Self-Check online tool to find the right support for you in your area. This easy to use online tool allows you to find helpful information on telecare services that could help you live independently at home for longer. Source: NHS 24 - Opens in new browser window Last updated: 06 March 2024 How can we improve this page? Help us improve NHS inform Thank You Your feedback has been received Dont include personal information e.g. name, location or any personal health conditions. Email Address e.g. you@example.com Message Maximum of 500 characters Send feedback Add this page to\n            Info For Me Also on NHS inform Living well with dementia Dementia care and support Other health sites Lewy Body Society Dementia UK Alzheimer Scotland - dementia with lewy bodies NHS inform About NHS inform Editorial policy Contact us Webchat Give feedback about NHS inform Info for Me tool Terms and conditions Privacy and cookies policy Freedom of information (FOI) Accessibility Other languages and formats  2023 NHS 24  v1.1.1.17852