NEUROSCIENCES SOCIAL WORK GROUP – - SOCIAL UNDERSTANDING OF DEMENTIA DIAGNOSIS

NEUROSCIENCES SOCIAL WORK GROUP Susana Buxó. Hospital Sant Llàtzer - Consorci Sanitari de . Gemma Tomé. Unitat de cognició i conducta. Hospital Universitari Mútua de Terrassa. Montse Setó. Unitat de Trastorns Cognitius. HUSM. Mariola Moreno. Fundació ACE. Alzheimer. Treatment and Research Center. Barcelona

Silvia Preckler. Fundació ACE. Barcelona Alzheimer. Treatment and Research Center. Emma Mestre. Hospital Universitari Institut Pere Mata. . .

Myriam Rovira. Centre Sociosanitari El Carme. Badalona.

Mª Pilar Cañabate. Fundació ACE. Barcelona Alzheimer. Treatment and Research Center.

Collaborators: Dr. Pau Pastor. Hospital Universitari Mútua de Terrassa. Sra. Marta Almería. Hospital Universitari Mútua de Terrassa. CATALUNYA MEMORY CLINICS – NEUROSCIENCES SOCIAL WORK GROUP

SOCIAL UNDERSTANDING OF DEMENTIA DIAGNOSIS STA Mª LLEIDA • 7 MEMORY CLINICS CONSORCI • PRELIMINAR MULTICENTER STUDY – FAMILY SANITARI CAREGIVERS TERRASSA

HOSPITAL UNIVERSITARI MÚTUA TERRASSA OBJECTIVE: Caregivers knowledge and FUNDACIÓ ACE Nª Sra. Del understanding of the diagnosis of dementia. Carme BADALONA INSTITUT PERE MATA TARRAGONA AIM: identify the needs of information about the REUS illness and how to receive it. METHODOLOGY A semi-structured interview to 100 caregivers and/or relatives after the communication of the diagnosis of dementia

Quantitative questions Qualitative questions

Family Age / Sex Family Do you currently act as a •Do you currently know in which phase of the caregiver? illness is your relative? Person with Do you live with the affected •What do you think is the medication? dementia person? •What do you know about the diagnosis of Age / Sex Do you have previous dementia? Diagnosis experience as a caregiver? •How much time has passed since you received stage of the Did you think you have full the diagnosis? illness information about the •Have you looked for information about the disease? disease? What effects do you expect •What do you think it will happen? from the pharmacologic treatment of dementia? Understanding of dementia (N = 100). 63% do not understand the disease

Difficulties at the conceptual and semantic level: 61.1% use as independent categories including antagonistic "dementia" and "Alzheimer". CONCEPTS

TREATMENT 58% have a misperception of the effects. As the age of the informant increases, consideration of the curative effects of the drug increases

PHASE 15.2% ignore the phase of the disease. 32.9% are unaware of their knowledge of disease is wrong.

There is no correlation between the understanding of the disease and the coexistence, or not, with the person or with the fact of having been a OTHERS caregiver before.

Lack of understanding (38), incomprehension (24), lost (22) lost memory (21), uncertainty (11), deterioration (10), dependence About dementia (8), incurable (7), disease (6), stability (5), care (5), family repercussion (4) , lack of recognition (4), lost identity (4), aggressiveness (4) SEMANTIC ANALYSIS

Future Uncertainty (30); worsening (25); family problem(24); care (12); dependence (12); lose (9); forced coexistence (8); residence (6)