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What is Lewy Body Dementia?

Lewy Body Dementia (LBD) is the third most common type of dementia. Alzheimer’s Research UK suggests around 100,000 people in the UK have it - that’s around 10-15% of people living with dementia.


LBD causes a combination of symptoms of Alzheimer’s Disease, such as short-term memory loss, and parkinsonian symptoms, for example stiffness and slow movements. Symptoms may start mild but gradually worsen as it is a progressive condition.


Lewy Body Dementia is split into two sub-types: Dementia with Lewy bodies (DLB) and Parkinsons Disease Dementia (PDD). DLB is diagnosed when the cognitive symptoms appear at least a year before any parkinsonian symptoms. Alternatively, if the movement difficulties present a year or more prior to cognitive symptoms, the diagnosis would more likely be PDD.


What are Lewy Bodies?


Lewy bodies are tiny clumps of protein which are deposited in the nerve cells in the brain and affect certain brain regions. They cause interference in signals between cells and disrupt brain function. Lewy bodies present in the cerebral cortex (the grey matter or outer layer of the brain) and cause cognitive difficulties in the area they appear, e.g language, thought or perception. They can also be found in the “substantia nigra” an area in the mid brain which produces dopamine and also controls movement and muscle tone, hence the difficulties associated with Parkinsons disease.


The presence of Lewy bodies commonly affects a person’s thought processes, movement, sleep regulation and causes hallucinations. Everyone is individual, so symptoms will vary with each person. Diagnosis can take time and early symptoms may result in an initial diagnosis of Alzheimer’s Disease, but, as further symptoms develop, the diagnosis may be altered.


Most dementia begins gradually; a person may start to notice a decline in their cognitive ability, such as memory and thought processing. Further symptoms associated with Lewy body dementia will be dependent on the area of the brain affected.


What can you do to make life easier with Lewy bodies dementia?


A Wayfinder at Sage House once supported a man with dementia with Lewy bodies, he was having hallucinations of tall, long glass people with big black eyes living in his conservatory and his frustration in trying to get people to believe him increased his symptoms.


The Wayfinder asked about the long, tall glass people and he was able to explain what they were like, whether he feared them and how they swayed when it was windy in the garden. Although his symptoms continued, they did decrease in frequency and the man was not fearful because when he talked about them to his family and friends, they accepted what he was saying was real and he felt his experiences were validated about describing what was happening to him.


Being understanding and supportive of someone who is living with dementia can help them live well with their condition. In addition, getting good quality sleep and regular activity are some of the best ways to live well with any type of dementia. Activities might include the following:


Physical activity: To support mobility as the condition progresses it is important to continue standing or seated exercise programs to maintain muscle strength, balance and avoid deconditioning.


Mental activity: Cognitive stimulation, especially in early stages of the condition, can slow the decline. Reading newspapers, completing crosswords and puzzles are all beneficial.


Social activity: Maintain previous interests, if necessary, with support or adaptations. Social interaction and engagement can prevent loneliness, reduce anxiety and depression and improve sleep patterns. Also, consider joining support groups which can help improve daily life.


Which professionals can assist with Lewy Body Dementia?


Mobility may decline with Lewy Body Dementia and may especially cause issues with balance. You might need a GP to refer you to different professionals including a physiotherapist, who can teach you a variety of strengthening and balance exercises, an occupational therapist, who can advise on any adaptive equipment needs, and a neurologist, who specialises in movement disorders and might prescribe medication which can help with some mobility symptoms.


If you are experiencing hallucinations, this can feel very upsetting, but using distraction techniques and creating a calm, sensory, friendly environment can help. Regular eye and hearing checks are important. If symptoms are severe or distressing, then antipsychotic medication can be prescribed for short term use but as people with dementia with Lewy bodies are particularly at risk from side effects they should only be used when other treatment has not worked.


Although there is currently no cure for DLB, with support it is still possible to live well. Dementia may have changed your future plans, but a dementia diagnosis does not change who you are. For help and support, get in touch with a member of our Wayfinding team today.


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