Raising awareness of Lewy body dementia

This recent outbreak of coronavirus has meant that people with Parkinson’s have been classed as amongst the highly vulnerable. They require important recognition during Parkinson’s Awareness Week. However, for those people with advanced dementia as well, a feature for some people with Parkinson’s, there will be an increased vulnerability due to difficulties with comprehension, self –care and ability to recover from serious illness. Families supporting people with these complex needs should have access to specialist support and advice during this time. Alongside this, an awareness of how Parkinson’s can be present alongside dementia should exist across wider society.

As a long-term degenerative condition, Parkinson’s brings a range of complex physical and psychological changes which can be extremely difficult to manage for both the person and their family carers. This unfortunately includes a significantly increased risk of developing dementia; usually referred to as ‘Parkinson’s disease dementia.’ Those living with Parkinson’s disease for more than 10 years are thought to have a 50% chance of developing dementia, with this increasing up to 80% for 20 years or more.

The terms ‘Parkinson’s disease dementia’, ‘Dementia with Lewy bodies’, ‘and ‘Lewy body dementia’ are often confused. Perhaps the easiest way to view this, as many of the experts in the field now advocate, is to see the term ‘Lewy body dementia’ as an umbrella term for both ‘Dementia with Lewy bodies’ and ‘Parkinson’s disease dementia’.

Both of the above disorders are caused by abnormal proteins; known as Lewy bodies which can occur in different parts of the brain; the timing of the onset of symptoms determining which diagnosis is given. For those with Parkinson’s disease dementia, changes in cognition usually occur at least a year after the Parkinson’s symptoms, whereas for Dementia with Lewy bodies, cognitive symptoms occur first or at the same time as Parkinsonism (rigidity, tremor etc.)

Both conditions share similar characteristics including changes in memory and thinking abilities (cognition), visual hallucinations, REM (Rapid eye movement) sleep disorder, fluctuations in awareness and the presence of Parkinsonism.

Both are complex; have symptoms that can be difficult to manage and are particularly sensitive to certain treatments. For example, some Parkinson’s medications, which are important for reducing rigidity and tremor, can increase the incidence of distressing hallucinations. In addition, over 50% of people with Lewy body dementia will have a severe adverse reaction to certain antipsychotic medications which may be used to treat distressing hallucinations. The incidence of anxiety and depression is also high, making managing the condition more challenging.

People with Lewy body dementia and their carers are also reported to have a lower quality of life compared to those with other types of dementia. Yet, despite this, many people find it difficult to access the support and knowledge they need to manage and understand this difficult condition. Strategies to support people with Lewy body dementia, especially during the current coronavirus outbreak, are important. These include providing reassurance and emotional support if someone is distressed, trying to maintain a level of physical activity including seated exercises, providing memory and visual prompts, keeping a routine where possible and offering mental stimulation. Family carers also need support in understanding and adjusting to changes in routine.

We would recommend that families seek advice from healthcare professionals such as their Parkinson’s Nurse or GP if they are concerned about any sudden changes in someone, especially as infections and medication can have a significant effect on people’s health. Many GP surgeries are now offering telephone or digital appointments during this difficult time.

As dementia specialists, our Admiral Nurses can also play a crucial role in coordinating care for families, providing essential support throughout the trajectory of these subtypes and working alongside other services such as Parkinson’s nurses, in ensuring people receive the best possible care as possible in these times.

This is why during Parkinson’s Week, we are highlighting that the recognition of dementia is equally important as the recognition of Parkinson’s disease. Join us in raising awareness by tweeting #worldparkinsondsay.

The following website links provide some useful information, advice and support:

Dementia with Lewy Bodies
Managing anxiety and depression
Changes in perception and hallucinations
Lewybody.org information
Parkinsons UK information about dementia
Advice in relation to coronavirus:

Dementia UK’s coronavirus advice
Lewybody.org coronavirus information