Attitudes, uncertainties and knowledge among the different parties involved in alzheimer’s patients care: findings from the know Alzheimer project survey study

Background: Alzheimer’s disease (AD) involves different groups of professionals and caregivers. Their attitudes and needs of training in early diagnosis, treatment, behavioral symptoms, resources, social and legal or ethical aspects are unknown.

Methods: Survey study within the project “kNOW Alzheimer”, a SEN, SEGG, SEMERGEN SEFAC and CEAFA initiative, through specific questionnaires. Each Society invited all its members to complete them through www.knowalzheimer.com.

Results: Participants were 114 neurologists, geriatricians 113, 275 primary care physicians, 328 pharmacists and 858 caregivers. Delays in diagnosis arise in patients and caregivers, the system and the professionals, who lack the means or misinterpreted early symptoms. The term “senile dementia” is still in use. Professionals and caregivers perceived good efficacy of treatment. Professionals advocate for diagnosis and treatment in the pre-dementia stage. There is a need for training in behavior management. Practitioners claim they inform but caregivers feel uninformed. Caregivers want to know as soon as possible if they or a family member suffers from AD. Behavioral symptoms and the need to restrict activities are sources of overload. Pharmacists can contribute to detection and management, but require extensive training. There is a need for training on legal aspects, bioethics, resources and access to research.

Conclusions: This project has yielded information on attitudes and doubts of the collectives involved in AD care, their ­training needs and points of improvement.