by Hilary Doxford.
There is always hope, but sometimes we need help to find it. Hope makes a tremendous difference to my quality of life. I find that hope from research, both as an active participant and just knowing what is actually happening out there.
When I received my diagnosis of early onset Alzheimer’s disease, I like most had questions. My first, how long have I got? My second, what research can I get involved in? The answer I received to my second question, was ‘I don’t know’ and this from a neurologist who I would expect to at least point me to relevant information even if he didn’t have a personal interest in research. That day I left the clinic feeling, desolate, despondent, abandoned and very alone, I saw no light at the end of a tunnel, and didn’t even know where the tunnel was.
Shortly after, I was asked to sum up my feelings in three words. Those three words were fear, despair and hope.
The first two because I was still learning that my pre-conceptions of dementia were all focused on the late stages of the disease. But I included hope, because in the first week after my diagnosis, I did my own research into dementia research and found out an amazing amount. That ignited my hope. At that time Join Dementia Research did not yet exist. If it had it would have been a huge boost to my morale.
Sadly today, I all too often hear similar stories, no information, no signposting, no hope. Why? Ignorance is no excuse. If I were a clinician having to deliver such a horrible diagnosis, I would want to help my patient come to terms with it any way I could. Providing information on research in particular Join Dementia Research will make a difference. Maybe not in the first days, weeks or even months after diagnosis and I am not suggesting it is rammed down people’s throats. Everyone is different and wants different information and at different times. But suggesting they search online for ‘Join Dementia Research’ or hand over a Join Dementia Research leaflet with ‘you may find this of interest, maybe not today, perhaps tomorrow, but others in your position have found it helps’ is all we are asking clinicians to do – #handouthope either at diagnosis or a subsequent appointment.
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