Alison Wheatley is a Research Associate at the Institute of Health and Society at Newcastle University. She has recently worked on the DIFRID study and is currently working on PriDem (Primary care-led post diagnostic Dementia Care). She tweets @AlisonLWheatley and @PriDemProject.
As part of developing a new intervention for people with dementia who have fallen, we wanted to find out what kind of care was currently available and how it could be improved. What we didn’t realise was that we would have to speak to over 80 health and social care professionals across our three study areas before we had a full picture. Nobody was able to tell us about everything available in their area, and each time we did an interview we added new services to our map and invited more professionals to talk to us.
While the latest NICE dementia guidelines recommend that falls services should take account of people with dementia’s additional needs, we couldn’t find any services specifically aimed at helping people with dementia after a fall. In fact, we found that people with dementia were often excluded from general services. Of the services that did accept people with dementia, there was often a lack of communication between services and long gaps between one service ending and another beginning, without a clear care pathway for patients to follow.
The problem of fragmentation of dementia services, however, is not limited to falls. An Alzheimer’s Society report found that 49% of people with dementia receive insufficient support after diagnosis, full stop. We have recently begun a new project which aims to develop a model of post-diagnostic support for people with dementia and their families. In attempting to identify existing good practice, we found that support varied widely between areas of the UK. Moreover, it was difficult to find out exactly what support was provided. Websites were frequently out of date and/or gave limited information. Services from different providers (e.g. NHS or social care) were separated, making it difficult to know the full range of support that was available. Although we found ten services which featured a full care pathway with significant primary care input, none of these appeared to provide all of the key aspects of post-diagnostic support that we identified from the literature.
Our work suggests that a centralised way of keeping track of what services are available for people with dementia following a fall, and more generally, would be beneficial for both professionals and patients.