The UP-TECH project, an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population

Abstract

Objectives: The paper describes recruitment results and characteristics of the UP-TECH clinical trial sample, including level of care services use, informal caregiver burden and its determinants.

Methods: UP-TECH is designed to test innovative care solutions for community-dwelling patients with moderate stage Alzheimer's disease and their caregivers in Italy. Four hundred and fifty patient–caregiver dyads were randomized into three arms receiving different combinations of services, composed of case management interventions, nurse visits, assistive technology and educational brochures. The research nurses administered a questionnaire comprising an in-depth socio-demographic assessment and several clinical scales, such as Novak's Caregiver Burden Inventory. Analyses of baseline data were conducted using uni- and bi-variate statistics. Linear regressions were computed to identify de-confounded correlates of caregiver burden.

Results: Four hundred and thirty-eight patient–caregiver dyads were recruited and randomized. In our sample, patients are predominantly women (71.5%), with an average age of 81.5 years and a mean Mini-Mental State Examination score of 16.2. Caregivers are mostly women (66.2%) and offspring (55.7%), with a mean caregiver burden score of 27.6. They provide more than 50 hours of care per week, while receiving an almost negligible support from public services. Factors associated with caregiver burden are female gender, kinship and the patient's behavioral disturbances. The most important factor associated with lower burden is the employment of a live-in care worker.

Conclusion: The paper provides a comprehensive description of moderate stage Alzheimer's disease patients and their caregivers, suggesting useful markers of caregiver burden. The well-balanced randomization assures the reliability of the study data-set for prospective evaluation of care strategies.

Keywords:

• Alzheimer disease
• caregiver burden
• RCT
• Italy
• integrated care
• quality of life
• assistive technology

Acknowledgements

The manuscript is an original work and the authors declare that the content of this paper, whether verbatim or rephrased, has not been published and is not under consideration for publication elsewhere.

Ethical approval: Prior to the commencement of the study, a research proposal was submitted to the Regional Ethical Committee (Comitato Etico Regionale), which consented to the study being carried out.

Additional information

Funding

This work was supported by the Marche Region under the Special Fund for Dependency Care managed by the Italian Ministry of Welfare (‘Il progetto UPTECH è realizzato dalla Regione Marche in collaborazione e con il contributo dell’INRCA Ancona attraverso il finanziamento del Fondo Nazionale non Autosufficienza, 2010’). The funder plays no role in the design of the study, in the collection, analysis and interpretation of data, or in the decision to submit the manuscript for publication.