Abstract
IntroductionBetter understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia.MethodsA modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O’Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements.ResultsTwenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process.ConclusionUnderstanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient’s values and experiences should be used to support and guide clinical decision-making.
Highlights
Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change
The prominence of the ‘patient experience’ as the fourth of five domains in the National Health service (NHS) Outcomes Framework (NHS Digital, 2019) highlights that the patient experience has become a central issue for the NHS Commissioning Board, clinical commissioning groups and the providers they commission from
Compared with late onset dementia, the presentations of young onset dementia (YOD) are likely to be of rare cause disorders, and the common dementias frequently present with atypical symptoms rather than with memory loss as the first symptom (Harding et al, 2018; Rosness et al, 2016; Vieira et al, 2013)
Summary
Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. A better understanding of patient experience can drive service improvements and act as a lever for system change, but at an individual level, it is crucial to provide health care which is person-centred and meets emotional and physical needs. People with young onset dementia (YOD) face inequity across the dementia pathway compared to those with late onset dementia This includes taking longer to get an accurate and specific diagnosis, a lack of age appropriate services and a lack of support to meet their unique needs (Rodda & Carter, 2016; Svanberg et al, 2011; Van Vliet et al, 2013). Compared with late onset dementia (dementia diagnosed over the age of 65 years), the presentations of YOD are likely to be of rare cause disorders, and the common dementias (such as Alzheimer’s disease) frequently present with atypical symptoms (such as visual loss as seen in Alzheimer’s disease variant of posterior cortical atrophy) rather than with memory loss as the first symptom (Harding et al, 2018; Rosness et al, 2016; Vieira et al, 2013)
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
