• International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach

      O'Malley, M.; Parkes, J.; Stamou, Vasileios; La Fontaine Papadopoulos, Jenny H.; Oyebode, Jan R.; Carter, J. (2020-11)
      Objective: To develop guidance for clinicians about essential elements that can support clinical decision-making in the diagnostic workup of young onset dementia. Methods/design: Three iterations of a modified e-Delphi consensus survey comprising 23 international expert clinicians specialising in diagnosis of young onset dementia. Outcome measures: A priori consensus was pre-defined as 80% of experts ranking statements in the upper threshold on a seven-point Likert scale that ranged from “not important at all” to “absolutely essential” to diagnosis. Results: 80% consensus was reached on 48 statements that were rated as “absolutely essential” or “very important” to a comprehensive assessment of dementia in a younger adult. In order to inform a subsequent audit of clinical records in which compliance with these statements was assessed, the statements were divided into a Minimum Standard, (consisting of the 15 statements voted by all experts as being “absolutely essential” or “very important”) and a Gold Standard where 48 statements were voted by 80% of the experts as being “absolutely essential” or “very important”. The experts’ response rate across the three rounds was 91.3%. Conclusion: A Minimum Standard and Gold Standard have been created for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia.
    • Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study

      Metcalfe, A.; Jones, B.; Mayer, J.; Gage, H.; Oyebode, Jan R.; Boucault, S.; Aloui, S.; Schwertel, U.; Böhm, M.; Tezenas du Montcel, S.; et al. (2019-10)
      The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.