An anonymous post from a man with Dementia …

Whilst the tendency, with many, even some professionals who should know better, is to concentrate on memory loss in people with dementia we are often faced with the fact that little account is taken of the type of dementia being displayed or diagnosed. There are in excess of a 100 variants of dementia, cortical or non cortical, that we know of today and in many memory deficit doesn’t feature certainly in the early stages if ever at all.

Here is the UK we have established a network of memory clinics throughout the country and I have the privilege of sitting as a member of MSNAP (Memory Services Network Accreditation Panel), we have defined extensively the criteria that memory clinics need to conform to (an 80+ pages of questions) many of which relate to non-memory loss issues. We are at pains to point out to our applicants and approved clinics that memory deficit isn’t the only problem encountered by people with dementia. Clinic are measured against these criteria and categorised and ranked appropriately. Approval is rarely given at the first application and reviews cannot take place until at least 6 months have passed and the applicant can demonstrate an improved performance which is then re-assessed; multiple re-assessment are not uncommon.

From a purely personal point of view, with my own condition of Dementia with Lewy Bodies (DLB), memory has never been a great problem, yes my memory is far from perfect but this is due to the ravages of age not dementia. My major deficits lie in my ability to perform adequately from a motor functional point of view, my co-ordination of my various senses is seriously impaired e.g. I cannot write any longer, play a piano or the organ which at one stage I was very competent at doing. My dexterity when eating or doing simple tasks is severely affected but that said with determination these problems are not insurmountable. This email is written using voice recognition software so a change of style and ways and means are always a possible solution. I try not to walk too much but when doing so a stick or sticks is a great help. People generally are extremely considerate and this helps, sometimes just a little too much. Lol.

All said we must use what influence we have to bring the realities of living with dementia (all types) to the population a large and if this means also educating the professionals, so be it.

In my experience the worst people in getting to grips with the dimensions of the problems of various dementias are surprising the societies and association set up to support us and to promote our very existence and that of our family carers – this in my book is a real tragedy.

To those who have and those who intend work in this area, good luck in passing on the real messages of living with dementia.

Fondest regards to you all

(Name Removed) (UK)

Alzheimer’s Disease Facts and Figures 2011

American Alzheimer’s Foundation reports the following:

5.4 million people have Alzheimer’s disease.

Alzheimer’s disease is the most common cause of dementia.

Alzheimer’s disease is the fifth-leading cause of death for those aged 65 and older.

Received this email from member of DANSI on 06.24.11

Memory loss is the symptom everybody worried about Alzheimer’s disease or other forms of dementia seems to focus on. After all, it’s distressing – and increasingly obvious. Yet there are other common symptoms of Alzheimer’s or dementia that can turn up even earlier, researchers say.

Sometimes, according to memory experts, even doctors miss early dementia signs because they’re focused on memory loss to the exclusion of other symptoms.

 Personality change – A warm, friendly loved one may seem to morph into a bit of a grouch – at first occasionally, and then increasingly.

 Problems with executive functioning – Trouble carrying out basic, familiar tasks can creep up slowly but surely.

 Vision problems – Problems with depth perception or visual-spatial coordination can precede memory problems.

 Language problems – Word retrieval and getting out the right words can become apparent before friends and family notice the more common communication problem of repeating stories or questions.

 Social withdrawal – Early in Alzheimer’s disease and other dementias, the person is often well aware that something is amiss, even if he or she isn’t exactly sure of the source of the problem.