Allan, this is such a good article. I hope it will make waves.
I am an amateur compared with you, having cared for my husband, who has Lewy Body Dementia, for only a few years: he is now in a residential home. But even I felt that I had some worthwhile information and insights to impart to the medics and people from Social Services, and that these contributions were usually brushed aside. After all, they probably thought, what does an archaeologist know about dementia, compared with a hospital consultant or a qualified nurse, or even a social worker? Quite a lot, when she has been observing the condition in her partner of 40 years, from its earliest subtle and ambiguous hints to the full-blown, unmistakeable symptoms of loss of memory and speech, hallucinations, Parkinsonian tremor and loss of balance, and so forth.
The partner/carer is the person who has known the sufferer all along, who knew them when they were well, and who has seen every phase of the beastly disease as it progresses. We obviously have a much more holistic view of the patient than a health professional who first met them half an hour ago and must base any assessment on a first examination and the perusal of existing medical notes (if any).
Carers already save society eye-watering amounts of money by their selfless devotion. To spurn the informed contribution they can make into research on degenerative conditions adds insult to injury.
Tristesa
