I was fortunate enough to be called by BBC Radio Ulster’s Evening Extra programme yesterday to present my own experience of dealing with dementia, and to emphasise the interventions which are needed.
Research chi funding is welcome. We are facing twice the amount of dementia, comparatively, within decades, and we have to do all we can to limit how many people and their families have to go through it.
However, we would do well to allocate some of this funding to research more effective awareness-raising. In my father’s case, we had significant difficulty getting a diagnosis, but since then the Health Service itself has been exemplary. Assessments by the Ards Community Hospital have been unmistakeable helpful; when my father was taken into the Ulster Hospital due to loss of appetite there was a lot of waiting but the overall diagnosis was spot on (including depression); and the service at the local Health Centre in Ballyholme in Bangor has been determined and helpful (the new electronic health check for his blood levels – he also has diabetes – is a great innovation). So, generally, the Health Service has performed well – credit where it’s due!
The difficulties have been outside the Health Service. Lengthy exchanges with mobile phone companies, exorbitant legal fees and banking delays have been (or at least were) the norm. Staff are not properly trained; awareness at all levels of the practical difficulties dementia brings is limited, and patience in dealing with it is often absent. In particular, we need wider awareness that people may be in the early stages of dementia, even if not yet formally diagnosed.
Of course, awareness is also needed that no one faces this alone. Support groups are widespread, and many people do have some awareness from their own experience. It’s worth noting too that we’re lucky – my father has dementia but is still doing well for 83!