Familiares de enfermos de Alzheimer: estrategias de afrontamiento de la enfermedad y su correlación con variables sociodemográficas y tipología de familiaun estudio en el área sanitaria de Santiago de Compostela

Abstract

Introduction and purpose: Alzheimer’s disease is the world’s leading cause of dementia. Its prevalence keeps rising in developed countries in parallel with increasing life expectancy, causing not only major intellectual disability in patients but also extraordinary social and economic costs. Patient´s cognitive and behavioral impairment has a direct impact on their caregivers, who are mainly direct family members. Our purpose is to establish the main coping strategies developed by Alzheimer’s disease patients caregivers. These strategies are defined as behavioral efforts in response to a loss of balance with their environment, once personal resources have been exceeded in the face of extraordinary stress. We also seek to establish a possible influence over these coping strategies of sociodemographic factors, caregiver burden or patients disruptive behavioral symptoms. Patients and methodology: A total of 49 (n=49) Alzheimer’s disease patients (NIAAA 2011 criteria) and their main caregivers were included. Patients were selected by a neurologist specialised in cognitive impairment, in the Clinical University Hospital of Santiago de Compostela (Spain), which covers a mainly rural area with small towns. A double quantitative and qualitative study was carried out, analysing sociodemographic variables of both patients and caregivers, caregiver burden (Zarit test), coping strategies (Chorot and Sandín coping with stress questionnaire) and disease severity (Global Deterioration Scale, presence of behavioral dysfunction). The quantitative study was complemented by a qualitative analysis of caregiver speeches in order to enrich hypotheses discussion and to develop new ones. Results: Coping strategies used by caregivers of Alzheimer’s disease patients are mainly adaptive and focused on the problem: olution-centered problem solving, positive reassessment and search for social support. Conversely, the choice of non-adaptive strategies is correlated with a higher overburden index on the Zarit test. Caregivers are still predominantly female. Living together with the patient is negatively correlated with being employed. The qualitative study strengthens the persistence of a traditional family care, which is also associated with a largely negative concept of both nursing homes and public welfare services. An absence of care co-responsibility, a persistent stigmatization of Alzheimer´s disease and a lower income are identified as risk factors for a greater caregiver burden and isolation. Overall, caregivers do not feel socially recognized. Conclusions: Measures aimed at conciliating personal life, care and working life, promoting shared care and de-stigmatizing both Alzheimer’s disease and public welfare services may be effective tools to reduce caregiver burden and favor adaptive coping strategies. These measures may also improve family balance and have a positive impact on a better patient care.