The objective of our study was to describe the burden of a sample of 208 live-in/non-live-in caregivers of patients with Alzheimer's disease (AD). We analyzed the statistical correlation between Caregiver Burden Inventory (CBI) and the live-in/non-live-in caregiver status, and between the ''objective burden,'' the cognitive deterioration, functional ability, and psychic and behavioral disorders. Using analysis of variance (ANOVA), the live-in groups of caregivers were compared to each subscale and to the total CBI. Living with a patient causes a bigger burden associated to the ''developmental and physical burden,'' which is affected more by the functional impairment than by the cognitive-behavioral aspect. Understanding the aspects of this burden in the initial-intermediate phase of the disease and being able to monitor it over time could contribute to improving the interventions already in place, which affect burden, stress, and quality of life of caregivers and their sick family members.

BackgroundThe epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers, on whom the main burden of care falls, putting them at higher risk of stress, anxiety, mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients, through case management, counseling, training, technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home.Methods/designA total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region, Italy, will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager, but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0), 6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden, measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period, defined as the number of days free from institutionalizations, hospitalizations and stays in an observation unit of an emergency room.DiscussionThe UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care, that is, the use of case management, new technologies, nurse home visits and efforts toward the integration of existing services in an ambitious holistic design. The analysis of different interventions is expected to provide sound evidence of the effectiveness and cost of programs supporting AD patients in the community.Trial registrationClinicalTrials.gov: http://NCT01700556

No abstract

No abstract