Our media statement for Dementia Awareness Day read:

Dementia means much more than memory-loss, declares national charity

To mark Dementia Awareness Day, Saturday 15 September, The Lewy Body Society is highlighting the needs of the estimated 200,000 people in the UK affected by Lewy Body Dementias, to ensure that information campaigns and support services are designed to meet their needs.

“Dementia affects much more than memory,” asserts Professor Ian McKeith, President of the Lewy Body Society. “It is vital that people showing the symptoms of Lewy Body Dementias, such as hallucinations, fluctuating consciousness and movement problems, are accurately assessed and well supported, so that they can gain help and plan for the future.”

There are two Lewy Body Dementias: Parkinson’s Dementia, which can occur in the later stages of Parkinson’s, and Dementia with Lewy Bodies, which begins with changes in thinking and often leads to problems with movement.

As Hazel Waters, who cares full-time for her husband, John, who has Parkinson’s Dementia, describes, “John can no longer perform the activities of daily living because he cannot judge where objects are, like a chair to sit on or a cup to drink from. He has periods of complete immobility, poor balance, hallucinations and cognitive impairment. He either sits immobile and silent for hours, or is restless and on edge, unable to express the cause of his anxiety. He rarely smiles or laughs and says he is waiting to die. His speech is often nonsensical and very hard to understand. Absolutely nothing is simple or straightforward any more.”

“The harsh reality,” observes Professor McKeith, “is that services are not yet well developed to help people like John and Hazel. That’s why the Lewy Body Society and Parkinson’s UK are working in partnership to increase understanding and support for people facing these huge challenges.”

Cecilia Yardley, Dementia Programme Lead for the Lewy Body Society comments, “The National Dementia Strategy and last year’s national dementia awareness campaign underplayed the significance of Lewy Body Dementias. Far from being rare, Lewy Body Dementias are the second most common type of age-related neurodegenerative dementia, affecting one in six people with dementia. They are still poorly recognised because they have only fairly recently been classified as distinct from Alzheimer’s. So our message is, think of more than memory — remember Lewy Body Dementias.”

ENDS

Other awareness raising for D.A.D.

As part of Dementia Awareness Day 2012, we had an information stand in Bromley High Street on Friday 14 September, supported by colleagues from Parkinson’s UK and Bromley MINDCare dementia service. Several people came over specifically because a relative or friend had had a diagnosis of Dementia with Lewy Bodies or Parkinson’s Dementia; others stopped by because they wanted to find out more about dementia in general. We were able to help people think through issues ranging from finding a care home to broaching the topic of possible dementia with a parent.