Dementia with Lewy bodies

  • Around 15% of people diagnosed with dementia will have dementia with Lewy bodies; it is the third most common cause of dementia and is more common in people over the age of 65 years.
  • Dementia with Lewy bodies is a progressive condition where the symptoms will gradually get worse over time. The symptoms can be similar to those found in both Alzheimer’s disease and Parkinson’s disease.

What causes dementia with Lewy bodies?

People diagnosed with dementia with Lewy bodies have a build up of clumps and proteins in their nerve cells in their brain known as Lewy bodies. This damages the way the nerve cells work and communicate with each other.

What happens?

People diagnosed with dementia with Lewy bodies will experience symptoms such as: fluctuating alertness, confusion and concentration levels, memory problems, mood changes, difficulty with everyday tasks, spatial awareness problems, a decline in problem solving skills, slowed movement and stiffness, tremors, sleep disturbance and restlessness, unsteadiness and increased falls, visual hallucinations and delusions.

Possible risk factors

  • Age: people diagnosed with dementia with Lewy bodies tend to be over the age of 65. Over the age of 80 there is a one in six chance of developing dementia with Lewy bodies. 
  • Gender: twice as many women over the age of 65 are diagnosed with dementia with Lewy bodies than men. 
  • Genetics: in rare cases, dementia with Lewy bodies can be passed from one generation to another. This type of dementia usually affects people under the age of 65. 
  • Poor physical health or inadequately controlled physical disorders such as diabetes or heart disease.
  • Lifestyle choices e.g. smoking; lack of exercise; excessive use of alcohol.

What can I do if I suspect DLB in myself or others?

  • Make an appointment with a GP so they can ask questions about the concerns and perform a physical examination and tests to rule out other potentially treatable conditions that could give similar symptoms e.g. infections, side effects of medication.
  • If the GP suspects DLB they will make a referral to a memory clinic or other specialist clinic for further tests and a diagnosis.

Management of symptoms

There is no specific treatment for dementia with Lewy bodies, but plenty can be done to help in the prevention and management of symptoms.

For the person with dementia

  • Keeping socially and mentally active is important, e.g. maintaining hobbies and interests, getting involved in group social activities, listening to music, exercise, reminiscing. You could also try doing Life Story work, which is creating a book about your personal history and your likes and dislikes. Find out more about Life Story work.
  • Sight and hearing problems can exacerbate hallucinations and delusions so it’s vital that eye and hearing appointments are maintained.
  • To aid sleep at nighttime reduce daytime napping and avoid caffeine and alcohol from late afternoon. Also keep the bedroom at a comfortable temperature and reduce noise and light.
  • For physical health, eating a balanced diet and exercising helps, but it’s also important to monitor for any pain or infection, and ensure any problems are treated.
  • If memory, attention and hallucinations are particularly problematic GPs are able to prescribe Rivastgmine, donepezil and galantine to manage the symptoms.

For the family carer

  • Be reassuring and supportive if the person with dementia with Lewy bodies is hallucinating and has delusions; what they see is real to them and to contradict them can cause distress.

Possible risk factors

  • DLB is more common in the over 65yr age group.
  • At the present time no other possible risk factors have been identified.

Preventing dementia

Some risk factors are not modifiable, but individuals can reduce their risk factors by: 

  • Having regular health care checks with your GP, if you have a long term condition like diabetes or thyroid problems, is important to keep these conditions well managed. 
  • Take advantage of ‘well-person health checks’ at your GP surgery so that your blood pressure, weight and cholesterol levels are well managed. 
  • If you are prescribed medication make sure you understand what it is for, you are compliant with the dosage and that you have regular reviews with your GP. 
  • If your weight has changed over the years seek support with your diet and monitoring of weight loss to ensure you are eating healthily and the weight loss is maintained. 
  • If you smoke ask your GP about a smoking cessation programme so you have some support and care and are successful in giving up.    
  • Keeping physically fit is very important, so taking regular exercise like walking, swimming and group activity like tennis and fitness classes.
  • Making sure you keep socially active is important, so that you are talking to people in a group situation as well as one to one. 
  • Hobbies like art, woodwork, needlework, knitting, puzzles and listening to music help stimulate different areas of the brain and help with attention and concentration.

Planning ahead if you have received a diagnosis   

  • Talk to your family and the people close to you about the future. Think about what help you would like. 
  • You may also like to think about things you would really like to do, people you would like to meet, holidays you would like to plan. Having some plans in place helps with a positive outlook on the future and opens up conversations with people who care about you and would like to support you.
  • Thinking about your future health needs can be difficult and feel like an unnecessary step but it will help you and the people who know you well to choose treatments and services that you would prefer in the future. You can put a Health and Welfare Power of Attorney in place and an Advance Care Plan. Putting these things in place will give you and your family time to look at treatments and support that is available and make sure you are aware of all the choices that are available to you for the future.
  • Gaining some financial advice as soon as you can will help you get your finances in order and make sure your finances are protected. A Lasting Power of Attorney is an important safeguard for you and anybody who is helping you with your finances. It is best to get support from a solicitor or an organisation like Age UK to help you with this. 
  • Financial support is available to you regardless of you financial status. You can claim for Attendance Allowance (which is non-means tested) if you are over 65 years or Personal Independence Payment if you are under 65 years. If you live with another person you can also claim a 25% council tax reduction from your local authority. 
  • There are a variety of housing options to choose from. If you are renting you can get support from you local authority housing department. There are also choices of housing in the assisted living and sheltered housing options.

Support

If you suspect you have dementia with Lewy bodies, make an appointment with a GP so they can ask you questions about your concerns, and perform a physical examination to rule out any other potentially treatable conditions that could give similar symptoms e.g. infections, side effects of medication.

If your GP suspects dementia with Lewy bodies they will make a referral to a memory clinic or other specialist clinic for further tests and diagnosis.

Contact our Admiral Nursing Direct helpline for support and advice: 0800 888 6678.

Research

Over the last couple of years more money has been pledged by the UK government and other countries world wide to research into the causes and find a cure for dementia. Subject to research processes and certain criteria, there are opportunities to be part of a research studies. To find out more or register your interest, see: Join Dementia Research

Page to be reviewed on 01/04/2017