TY - JOUR

T1 - Timely diagnosis of dementia?

T2 - Family carers' experiences in 5 European countries

AU - Woods, Bob

AU - Arosio, Francesca

AU - Diaz, Ana

AU - Gove, Dianne

AU - Holmerová, Iva

AU - Kinnaird, Lindsay

AU - Mátlová, Martina

AU - Okkonen, Eila

AU - Possenti, Mario

AU - Roberts, Jennifer

AU - Salmi, Anna

AU - van den Buuse, Susanne

AU - Werkman, Wendy

AU - Georges, Jean

N1 - © 2018 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

PY - 2019/1

Y1 - 2019/1

N2 - 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.

AB - 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.

KW - Adult

KW - Aged

KW - Awareness

KW - Caregivers/psychology

KW - Delivery of Health Care/standards

KW - Dementia/diagnosis

KW - Early Diagnosis

KW - Europe

KW - Female

KW - Health Services Research

KW - Humans

KW - Male

KW - Middle Aged

KW - Professional Competence/standards

KW - Spouses/psychology

U2 - 10.1002/gps.4997

DO - 10.1002/gps.4997

M3 - Article

C2 - 30246266

VL - 34

SP - 114

EP - 121

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

SN - 0885-6230

IS - 1

ER -