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  • Bob Woods
    Dementia Services Development Centre Wales, Bangor University
  • Francesca Arosio
    Federazione Alzheimer Italia, Milan, Italy.
  • Ana Diaz
    Alzheimer Europe, Luxembourg, Luxembourg.
  • Dianne Gove
    Alzheimer Europe, Luxembourg, Luxembourg.
  • Iva Holmerová
    Czech Alzheimer Society, Prague, Czech Republic.
  • Lindsay Kinnaird
    Alzheimer Scotland, Edinburgh, UK.
  • Martina Mátlová
    Czech Alzheimer Society, Prague, Czech Republic.
  • Eila Okkonen
    Muistiliitto-Alzheimer Society of Finland, Helsinki, Finland.
  • Mario Possenti
    Federazione Alzheimer Italia, Milan, Italy.
  • Jennifer Roberts
  • Anna Salmi
    Muistiliitto-Alzheimer Society of Finland, Helsinki, Finland.
  • Susanne van den Buuse
    Alzheimer Nederland, Amersfoort, The Netherlands.
  • Wendy Werkman
    Alzheimer Nederland, Amersfoort, The Netherlands.
  • Jean Georges
    Alzheimer Europe, Luxembourg, Luxembourg.

OBJECTIVES: Timely diagnosis of dementia is recommended in national strategies. To what extent is it occurring across Europe, what factors are associated with it, and what is the impact on carers emotions of quality of diagnostic disclosure?

METHODS/DESIGN: Survey of family carers recruited through 5 Alzheimer's associations (Czech Republic, Finland, Italy, the Netherlands, and Scotland). One thousand four hundred and nine carers participated, 84% completing online. Fifty-two percent were adult children, and 37% were spouses, with median age 57. Most (83%) were female.

RESULTS: Nearly half (47%) of carers reported that an earlier diagnosis would have been preferable. Delaying factors included reluctance of the person with dementia, lack of awareness of dementia, the response of professionals, and delays within health systems. Recent diagnoses were no more likely to be considered timely, although professional responses appeared to be improving. Delayed diagnoses were more often reported by adult child carers and where the diagnosis was made in the later stages of dementia, or another condition had been previously diagnosed. In all countries except Italy, the diagnosis was shared with the person with dementia in the majority of cases. Timely diagnoses and higher quality diagnostic disclosure are associated with better adjustment and less negative emotional impact on carers in the short and medium term.

CONCLUSIONS: Although the study sample were well educated and likely to be in touch with an Alzheimer organisation, many continued to experience the diagnosis of dementia as coming too late, and further work on public awareness, as well as on professional responses, is needed.

Keywords

  • Adult, Aged, Awareness, Caregivers/psychology, Delivery of Health Care/standards, Dementia/diagnosis, Early Diagnosis, Europe, Female, Health Services Research, Humans, Male, Middle Aged, Professional Competence/standards, Spouses/psychology
Original languageEnglish
Pages (from-to)114-121
Number of pages8
JournalInternational Journal of Geriatric Psychiatry
Volume34
Issue number1
Early online date24 Sep 2018
DOIs
Publication statusPublished - Jan 2019

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