The UP-TECH project, an intervention to support caregivers of Alzheimer’s disease patients in Italy: study protocol for a randomized controlled trial

Abstract

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

Assessment of Health-Related Quality of Life for Caregivers of Alzheimer’s Disease Patients

“…Social services need to aim at developing more targeted interventions to support caregivers since the latter run the risk of higher depression rates and physical vulnerability, especially if they receive neither formal nor informal support [5, 12, 14, 35]. Support can range from functional support (helping with the demanding daily living needs and housework) to emotional support and/or informational support, which includes sharing knowledge from health professionals and individuals that have experienced similar situations [29, 37–39].…”

“…The positive relationship between receiving formal or informal support and a caregiver's psychological well-being [26] and overall QoL may lead to better quality of care and reduction of the possibility of institutionalization of the AD patient [9]. Exposing the caregiver to multicomponent interventions [5, 13, 40] can increase knowledge (i.e., attending an information session or a skills building program) and reduce depression levels [5, 36]. Psychosocial interventions such as behaviour management therapy, psychological ad hoc counselling (both family and individual), participating in a specialized support group, and stress management techniques can improve outcomes for caregivers [5, 12, 29, 37–39] and in so doing also improve the quality of life for patients.…”

“…Exposing the caregiver to multicomponent interventions [5, 13, 40] can increase knowledge (i.e., attending an information session or a skills building program) and reduce depression levels [5, 36]. Psychosocial interventions such as behaviour management therapy, psychological ad hoc counselling (both family and individual), participating in a specialized support group, and stress management techniques can improve outcomes for caregivers [5, 12, 29, 37–39] and in so doing also improve the quality of life for patients. The small number of participants in our study who had received support of some fashion (only 43 of the 155 participants) was, however, a limitation and possibly explains the lack of statistical significance in the association between the participation in such courses, the depressive symptomatology, and quality of life of the caregivers, despite all the previous findings in the literature.…”

“…Approximately 26.6 million people worldwide are living with AD. This number is expected to quadruple to more than 100 million by 2050 [3–5]. In 2010 the worldwide cost of dementia was 604 billion dollars.…”

Using sensor‐based technology for safety and independence – the experiences of people with dementia and their families

“…Evaluations of the effects of such interventions have been conducted. For example, the Italian UP‐TECH project investigated the impact of sensor‐based technology installed in the homes of people with dementia and cared for by family members , with results indicating that user satisfaction with the solution was rather high . Egan & Pot identified several barriers and enablers for innovative assistant health technology when conducting focus group interviews with people with dementia and their family members, asking about their needs.…”