Timely diagnosis of dementia? Family carers' experiences in 5 European countries.

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.

Caregivers' perceptions of the therapeutic benefits of drug treatments for dementia.

BACKGROUND AND AIMS: To collect opinions, perceptions, and expectations on the therapeutic benefits of drug treatment for dementia and the impact on the care of the patient in a large sample of caregivers. Only few studies deal with this topic in a small number of participants. METHODS: This used an ad-hoc online questionnaire to collect the opinions of caregivers of patients with dementia and assess their expectations and perceptions of the therapeutic benefits of drug treatments. The questionnaire was accessible for nearly 4 months on the Federazione Alzheimer Italia website and had three sections: (1) information on the patient with dementia; (2) information on the caregiver's perception of the therapeutic benefits of drug treatments; (3) information on caregivers. To evaluate the relationship between the caregiver's expectations of the therapeutic benefits of dementia treatments and some characteristics of the patients and the caregivers, we used the Chi-square test. RESULTS: During the access time, 439 questionnaires were filled, and 369 were validated for inclusion in the analysis; of these, 329 also had information on caregivers. The expectations of drug treatment effects were not statistically significantly influenced by any variables considered about the patients or the caregivers. Caregivers' beliefs about the effectiveness of dementia treatment, their expectations and changes in their lives were clear. CONCLUSIONS: This study addresses a gap in knowledge about caregivers' experiences and their views of drug treatments, and highlights the need for a pharmaceutical treatment that helps to resolve the symptoms and outcomes of dementia.