Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

Abstract

Introduction 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 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. Methods A 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. Results Twenty-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. Conclusion Understanding 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.

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

“… 15 , 26 – 28 The current study highlighted yet again that a lack of knowledge regarding what the future holds, at what pace and which planning can be undertaken, is an important complicating factor. However, the field of tension between needing to and not needing to know more about disease progression became apparent in former young-onset dementia research, 29 , 30 and was corroborated by our findings, specifically for people with young-onset dementia themselves. Consistent with previous research, 26 , 27 , 31 our respondents acknowledged the terminal nature of dementia, regardless of their uncertainty about the trajectory.…”

“…• In accordance with a previous suggestion, 29 we support the idea that disclosure of information on prognosis and on advance care planning to people with young-onset dementia and their caregivers should be embedded within the care pathway. • The process of advance care planning should be the focus, rather than its product.…”

What happens when people develop dementia whilst working? An exploratory multiple case study

“…For example, dementia stereotypes appeared to influence physician’s responses in our cases, when their concerns were not initially investigated as cognitive complaints. This aligns with previous research indicating that it can take younger people at least four years to be diagnosed after the onset of symptoms (O’malley et al, 2021 ). When the diagnosis is finally obtained, our cases suggest that the person might need someone to support their agency on their behalf, by acting and speaking for them when interacting with state agencies, such as the SSIA.…”

“Give me the knowledge, and I can do what I want with it, it’s my right and my choice”: Triangulated perspectives on the disclosure of young onset dementia

“…Using a modified Delphi approach with 18 people with young onset dementia and 18 supporters, O’Malley et al (2021b) developed consensus statements to inform best practice in diagnosing young onset dementia. The first of three statements relating to disclosure is that health and social care professionals should explain medical terms simply and clearly.…”