Not all forms of dementia share the same symptoms of memory loss…
Mention the word "dementia" and people's first association will almost certainly be "memory loss". This may be broadly true for Alzheimer's disease , but it is an association that can be very misleading when it comes to understanding the many, and other, varied causes of dementia.
Dementia, in reality, encompasses a great range of symptoms. For many- particularly those who develop symptoms earlier in life (early-onset dementia), or those with one of the rarer forms of dementia, it is often not memory loss that causes the most distress.
Problems with vision, spatial awareness, and recognition can all cause far greater difficulty, particularly in the early stage of disease, and can result in delayed diagnosis if the symptoms go unrecognised.
One man who knows all about this is Den Shepherd.
Before being diagnosed with Posterior Cortical Atrophy (PCA) while still in his 50s, Den had to endure 18 months of problems with no obvious cause, but which adversely affected his ability to work and left him feeling isolated and unsupported in the workplace.
For him, it wasn't memory problems that interfered with his ability to do his job, but spatial awareness issues which began to have an ever greater impact on everyday tasks such as driving, reading, writing, entering data on to a spreadsheet, typing and even using keys to lock up.
As is common with many cases of early-onset dementia it took a long time for PCA to be diagnosed, and when it was, he says he faced a good deal of ignorance because the symptoms he was experiencing are not commonly associated with dementia.
Raising awareness of different symptoms
Now 64, Den is determined to speak out about his experiences and the many varied symptoms of dementia in the hope of raising awareness.
Together with his wife Helen, he is a regular contributor to PCA support groups at both University College, London (where he has taken part in research projects), and a Facebook group for people with PCA and their carers as well as the Empowerment group organised by their local Alzheimer's Society.
In an interview with Luke Brown for the Alzheimer's Society "Living with Dementia Magazine" he speaks candidly about the issues he has faced surrounding PCA.
To read the full interview with Den click here.
When people hear "Alzheimer's" they think of an older person with memory loss. We are doing our bit to educate people about PCA and the other rare dementias because there is a lot more to dementia than meets the eye.'