Support
Receiving a diagnosis of LBD can be isolating and can have an impact on family members, friends and carers. It is really important that the right support is available, not only for the person with LBD, but also for their loved ones. Our LBD Support Group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
People living with LBD and their friends and family are welcome to join our London support group meetings or to see what regional support groups might be available. Please visit our Meetings page for details of upcoming meetings.
People affected by a diagnosis of LBD, including carers, may find it helpful to seek support from a variety of health and social care professionals. This includes local health services such as GPs and nurses, community mental health teams and social workers, as well as the specialist hospital team.
When someone has problems with movement or coordination, support from a physiotherapist or occupational therapist can also be accessed. Speech and language therapy could also be used if problems with swallowing and speech develop.
For more information on support available for all those affected by LBD, including carers, please visit our FAQs section.
Strategies for managing LBD
There are certain strategies that people have found useful to help them manage the symptoms of LBD.
We understand that everyone affected by LBD experiences it differently and what works for some may not work for others. The tools and strategies suggested below have been shared by LBD Support Group members and other relevant organisations.
Movement problems
Physiotherapy and occupational therapy can be very helpful in managing problems with movement. They can advise on aids and adaptations to the home to help the person move and stay independent. Making sure that glasses and hearing aids are regularly checked also helps.
Exercise may be helpful in improving long term outcomes in LBD. A range of different exercises is recommended and should include some aerobic exercise (such as walking or cycling) and some to help balance (such as Pilates or Tai chi).
If the person has had falls or is worried about falling, the GP may refer them to a falls prevention service. Their risk of falls may be reduced by strength and balance exercises, a sight test, a medication review and making the home safer (for example, removing trip hazards).
Speech
Quiet speech can sometimes be a problem for people living with LBD. This can improve with speech and language therapy, particularly using a technique known as the Lee Silverman Voice Treatment. This helps people to learn to speak louder.
Hallucinations and delusions
If someone is having hallucinations or delusions, in most cases it is unhelpful to try to convince them that what they are seeing is not there, or that what they believe is untrue. What the person is experiencing is real to them at the time. Instead, carers can offer reassurance that they are there to support the person, and perhaps try distracting them.
It is important to get any glasses or hearing aids checked. Any problems with these can make difficulties with perceiving things worse. Misperceptions (different from hallucinations) can also be triggered by things in the environment such as excess noise and reflective or patterned surfaces. Therefore making changes to your environment that reduce these factors can help.
Sleep disturbances
Steps can be taken to help a person with LBD have more restful nights. Increasing physical exercise, having a regular bedtime and getting-up time, and reducing daytime napping can all help.
A common problem is getting up frequently to pass urine. To help reduce this it is a good idea to avoid alcohol, caffeine and excess drinks close to bedtime, and to keep the bedroom quiet and at a comfortable temperature.
Practical steps can be taken to make the area around the bed safe – remove sharp objects and put a mattress alongside the bed in case the person falls or jumps out.
People are also encouraged to talk to their GP or their specialist about sleep problems.
Behavioural challenges
People with LBD can sometimes behave in a challenging manner (with agitation or aggression, for example) which can be difficult to manage. Carers may find it useful to look for specific triggers and make environmental changes such as reducing unnecessary noise or clutter. These behaviours may also be improved by interaction with other people or through activities matched to the person’s interests, such as physical exercise or music.
Mood
Low mood, depression and anxiety can be prominent in people with LBD. People may be more tearful or spend time worrying about things that wouldn’t worry them previously. These symptoms can respond well to treatment. If people notice these symptoms, they should discuss them with their GP or specialist and consider treatment with antidepressants.
Treatment
There is currently no cure for LBD but there are treatments that can help manage symptoms and improve day-to-day life. Managing symptoms as best as possible, with or without medication, is very important in helping people with LBD to live well.
There is some evidence that a group of medications called acetylcholinesterase inhibitors, that are used to treat Alzheimer’s disease, can help with memory problems and hallucinations in LBD. Similarly, medications used for Parkinson’s disease, such as levodopa, can be used in LBD to help with motor symptoms (movement). However, levodopa can make hallucinations worse in some cases and these treatments should be monitored by a specialist.
Treatment for LBD can be problematic because certain medications, particularly antipsychotic medications, can significantly worsen LBD symptoms. The range of symptoms that comes with LBD means that people may need support from several healthcare professionals and specialists.
Please note that you should always speak to your GP or healthcare professional before taking any medical treatment.
