The World Alzheimer Report
estimated that there were 35.6 million people living with dementia worldwide in 2010, and according to forecasts this figure will reach 65.7 million by 2030 and 115.4 million by 2050 [1
]. The Italian National Institute of Statistics (Istat) estimated that there were approximately 250,000 people suffering from Alzheimer’s disease (AD) and similar dementias in Italy in 2005 [2
]. However, since AD and various forms of age-related cognitive deterioration have complex diagnoses, their prevalence is likely to be underestimated [3
AD causes progressive cognitive and functional decline [5
], it can have a significant impact on care costs, and is the major cause of nursing home admission [6
]. To accurately estimate the societal impact of AD, one needs to consider that patients' families are also affected, since the burden of care in many countries, including Italy, mainly falls on them. AD is known as a ‘family illness’, because family caregivers of AD patients often represent hidden secondary patients [7
]. They frequently experience high levels of stress, associated with a higher risk of developing mood disorders, depression, insomnia and a lower quality of life [8
]. Anxiety and stress also increase their likelihood of developing physical problems, such as headache, back pain and excess weight, and exposes them to a higher rate of mortality compared to their non-caregiver counterparts [9
Despite controversies [11
], promising intervention studies have shown that specific interventions aimed at supporting caregivers of AD patients can lead to significant improvements in their physical and mental health, by reducing caregiver burden and stress [12
]. For instance, caregivers receiving specific counseling sessions provided care for longer and delayed the institutionalization of their relatives with AD [13
]. Counseling of family members delayed admission of the patient to a long-stay facility for an average of 18 months [13
]. An experimental program of intensive training, followed by 10 days of follow-up contacts, delayed the institutionalization and reduced the level of caregiver stress [13
]. In the USA, telephone-based psychosocial support was effective at lowering caregiver stress [19
], suggesting that such interventions can provide an interesting low-cost solution to support caregivers.
In this context, new technologies applied to the home hold great potential to improve the quality of life of AD patients and their caregivers. Despite the absence of definitive evidence [20
], pilot studies revealed that home adaptations designed to assist older people in fulfilling their daily needs in the home are particularly important for users' quality of life and well-being [21
]. Several studies assessing the effectiveness of assistive technology in AD have been undertaken; however, most of these interventions are in a prototype/testing phase and fail to be scaled-up and systematically implemented in daily practice. A few of these include: talking lights, the Home Assurance System project [22
], the ROSETTA project [23
] and the ENABLE project [24
]. The latter project involved the testing of an integrated system of technologies in the home, including automatic night lights, locators for lost objects, computerized calendars, programmable telephones, gas sensors, touch screen pads for music and a voice prompter when medicines should be taken.
One of the largest intervention studies undertaken in the field is the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, which was launched in the USA in 1995 [25
]. Sponsored by the National Institute on Aging and the National Institute of Nursing Research, the main objective was to develop a psychosocial intervention to improve the living conditions of caregivers of AD patients. The REACH project implemented a multi-component intervention, including: 1) individual support of caregivers; 2) group support and family therapy; 3) training of caregivers; 4) interventions to adapt to the home; and 5) the use of technology support systems (for example a telephone-linked computer system and a computer telephone integration system). Evidence suggests that the program was effective at both improving caregivers' quality of life and in delaying the institutionalization of AD patients [8
], and even today this multi-site intervention represents a major testbed for evidence-based evaluation of practices in the field of dementia care.
An important issue to consider when implementing programs to improve care pathways for AD patients is that the care of these patients is an extremely complex process. Public welfare professionals must take into account multiple care needs (for example health, social and legal), without neglecting the importance of the caregiver and their needs as well. The multidimensionality of this problem not only calls for new services, but also for a greater coordination and integration of existing community health care and social services, within the public, non-profit and private sectors. This was the assumption underlying several projects integrating health care and social services, thus reducing cost, and eliminating waste and inefficiency [27
]; however, none of these specifically addressed AD patients and their caregivers. Among the tools used in these studies to foster integration of care are case management strategies, staff training and the use of new information technology (IT) systems.
The Italian welfare system has traditionally relied on a family-based approach to older people care. Here, the level of formal care provision has always been marginal when compared to other Western welfare systems, such as those of the UK, Germany and Scandinavian countries [31
]. However, stimulated by the increasing dimension of AD and its consequences on families, the Italian Ministry of Social Welfare decided to invest in the innovation of care services in this field. A call for proposals was issued in 2010 addressing public service providers, with the aim of developing innovative interventions, and improving the effectiveness of care for AD patients and their caregivers in the Italian regions.
Responding to this call and building on the knowledge retrieved in the literature, the Italian National Research Centre on Aging (INRCA) in partnership with the Government of the Marche region, developed the proposal of the UP-TECH intervention study, which was successfully evaluated and funded with a grant of approximately 1 million euros. The ambitious idea underlying this project is to create a multi-component intervention program at regional level, which could engage professionals working in both the social and health care services, in a large-scale organizational change to restructure the processes of AD care. For these reasons, a study has been designed following the trial methodology and adapting to the Marche region the most promising evidence-based interventions in this area.
The main project objectives of the UP-TECH study are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home.
Secondary objectives of the project are: 1) to ensure continuity of care and the integration of care pathways; 2) to create an information management system specific for AD; and 3) to evaluate the cost-effectiveness of a case management program for AD patients and their caregivers.