Dementia Action Week: why better diagnosis is more vital than ever

This Dementia Action Week (May 13-19), we are calling for better diagnosis and treatment of ‘the most common disease you have never heard of’. Our chief executive Jacqui Cannon sets out they are more important than ever

One in three of us will go on to develop dementia. By next year, there will be one million people in the UK living with the disease.

This is without a doubt a national health crisis.

Sadly, many will face the additional struggle of receiving an incorrect diagnosis, resulting in wrong and sometimes harmful treatments.

Lewy body dementia is the second most common age-related dementia and third most common overall.

Officially, it accounts for 5% of all dementia cases, however experts put the figure closer to 15%.

Medical professionals frequently misunderstand – or miss entirely – LBD’s symptoms as they are not necessarily the same as Alzheimer’s or it is confused with Parkinson’s

As a consequence, around half of all people with Lewy body dementia will have received a different – wrong – diagnosis initially.

This is a disaster for families who are trying their best to care for their loved ones.

The core symptoms of LBD are:

Cognitive changes and fluctuations: Executive function problems with processing information and managing everyday tasks, such as handling money, planning, organisation. Fluctuations may be from minute-to-minute or day-to-day.

Sleep disturbance 75 to 80% of people with Lewy body dementia act out their dreams sometimes many years before other symptoms appear.

Hallucinations three-quarters of people with LBD will experience visual hallucinations.

​​Parkinson’s features tremor, rigid gait, problems with movement, mask-like facial expression

We need to make sure there is a quality of diagnosis so people can get better treatment and sooner.

The consequences of the wrong type of dementia medication being prescribed are potentially fatal.

Over the years we have seen that people with Lewy body dementia and their families do not always receive the very specific care and support they need after diagnosis.

In response, The Lewy Body Society has funded an LBD specialist dementia nurse but this is not enough.

This Dementia Action Week, we are calling on the Government and the NHS to commit to improving the quality of diagnosis and post-diagnostic support for ALL dementias, including Lewy body dementia.

Find more information about living with the symptoms of Lewy body dementia from our free online resources.