The partnership between researchers and volunteers. The experience of the Up-Tech project

Transcription

1 The partnership between researchers and volunteers. The experience of the Up-Tech project

2 1. Background 6 mil. people suffer from Alzheimer Disease (AD) in Europe (Wimo & Prince 2010) AD estimates in Italy range from 500,000 to 1,000,000. Caregivers are the hidden patients Caregiver burden and distress are the main predictors of patient institutionalization and health care costs (Gaugler et al. 2007).

3 1. Background The REACH Study (US) Complex Interventions Complex Evalutions Transferability issues

4 2. THE UP-TECH STUDY The UP-TECH study database UT is a multi-component, randomized controlled trial, that enrolled 438 dyads composed of AD patients and their family caregivers Study aims 1. to reduce the care burden of family caregivers of AD patients 2. to maintain AD patients at home Dyad inclusion criteria Setting: community-dwelling MMSE: between Family: at least one family caregiver, defined as those kin providing at least 1 h/care per day in the last 6 months Chiatti C, et al. The UP-TECH project, an intervention to support caregivers of Alzheimer's disease patients in Italy: study protocol for a randomized controlled trial. Trials May 28;14:155. 4

5 2. THE UP-TECH STUDY The UP-TECH project is a multi-component randomized controlled trial (RCT) with two experimental groups (UP group and UP-TECH group) and one control group. Intervention duration is 12 months. Recruitment centers are located in five health districts, each one enrolling 90 dyads: 1. PESARO 2. ANCONA CENTRO 3. MACERATA 4. FERMO 5. S. BENEDETTO DEL TRONTO

6 Management (WP7) 2. THE UP-TECH STUDY Group 1 UP protocol (n=150) Patient receiving support from a case manager Preparing the study Sampling Group 2 UP-TECH protocol (n=150) Patients receiving also technological intervention Control Group usual care (n=150) Patients randomly assigned in the control group Sampling (WP3) M1 t0 (M5 M17) Finalising study protocol (WP1) Finalising survey tools (WP2) Field work (WP4) t1 t2 (M17 M18) (M18) Technology assessment (WP5) Dissemination (WP6)

7 3. Intervention Case management interventions by trained social workers: counselling sessions scheduled follow-up phone calls training sessions on stress management and caregiving activities for family caregivers social service administration and establishment of links between healthcare services and general practitioners. Nurse interventions: multidimensional evaluation of patients training intervention for the caregivers that addresses caregiving activities, nutrition, drug administration and ergonomics of the home environment. 7

8 3. Intervention The UP-TECH Technological tool-kit Wireless connection with all other sensors Connection via SIM card with caregivers mobile phone It needs to be continuously charged via electric plug It should be placed in between all sensors in order to improve signal reception

9 4. Collaboration with volunteer associations UT-CSV Joint Call for proposal - 25k Euros for joint initiatives promoted by VO - collaboration with the public sector was a prerequisite for any proposal

10 4. Collaboration with volunteer associations Projects funded Viaggiare Insieme (Travelling together) S.O.S. Alzheimer Non ti Scordar di Me (Don t forget about me) Oltre la cura..la Relazione umana (Beyond care the human touch) Caffè Alzheimer (Alzheimer Cafè)

11 4. Collaboration with volunteer associations VIAGGIAMO INSIEME (Pesaro) Partners: ANTEAS (leader), AUSER, NONNO MINO, COOP. Il LABIRINTO, AV 1, ATS 1 Project activities 1) Set-up an evaluation unit (educator, psychologist, social worker) 2) Training course for new volunteers at the day care center 3) Enrollment of families (approx. 18) 4) Home visits (after assessment) 5) Memory Training 6) 2 social events/month (e.g. concerts, museum visits, library, group walking, visits to farms, oil mills and wineries) 7) Monthly meeting with a psychologist

12 4. Collaboration with volunteer associations S.O.S. ALZHEIMER (Ancona) Partners: Amici del Samaritano (leader), Alzheimer Marche, ANIEP Project Activities 1. Set-up the steering group group meetings for family caregivers (Self-help, Counselling, Stress managment) group meetings for patients (Art and Music therapy, Cognitive training, Physical exercise) 4. Face-to-face meeting with a psychologist if requested 5. Information on care services available 6. Possibility to use the transportation service

13 4. Collaboration with volunteer associations NON TI SCORDAR DI ME (Macerata) Partners: A.M.A. (leader), AVULSS, ANTEAS, ALBERO DEI CUORI, IRCR MC, ATS 15 Project Activities 1) Self-help group (meets every 15 days) 2) Pet Therapy 3) Occupational Therapy (group-based and at home) 4) Creation of information material for families 5) Collaboration with the new Alzheimer Information Point

14 4. Collaboration with volunteer associations OLTRE LA CURA LA RELAZIONE UMANA (Fermo) Partners: AFMA (leader), AUSER, AVULSS, UNITALSI, ATS XIX, AV4 Project activities: 1) Public meetings to attract new volunteers 2) Screening of people with AD in need of social support 3) Social activities at the local AD Day Care Center 4) Respite care and home visits to families at risk of social isolation 5) Transportation services

15 4. Collaboration with volunteer associations CAFFE ALZHEIMER (S.Benedetto d.t.) Partners: AVULSS (leader), UNITALSI, COOP. SOCIALE NOMENI Project activities 1) Training program, 6 meetings for volunteers and citizens 2) The first self-help group in the district has been created The founding of the first Alzheimer Association in the district was triggered by the UT project!

16 5. Take home messages - The five projects are in progress. Positive feedback. - Large heterogeneity in the structure of the volunteer sector across districts - Good results in terms of integration between VOs and the public sector, but also within VOs! - Learning experience for researchers - Consensus making and sustainability - Re. Transaction cost? COST-BENEFIT analysis will be carried out at the end of the project

17 Thank you for your attention Carlos Chiatti, Ph.D. (under construction) The UP-TECH group Social workers: Diletta Baldassarri, Luigina Bitti, Aurora Carosi, Maila Sabbatini, Elisabetta Paolasini, Tania Fiore, Cinzia Fronzi, Simona Giacchetta, Valeria Giacomini, Laura Giovagnoli, Giuli Lattanzi, Anna Maria Manca, Ida Marinelli, Valeria Pigini, Marina Pignotti, Maria Chiara Proietti, Antonia Quarticelli, Martina Rovedi, Valentina Valeri. Nurses: Andrea Antonioli, Mariella Barabucci, Mara Bassani, Paola Bollettini, M. Cristina Bruttapasta, Carla Buccolini, Rosa Carangella, Franca Carboni, Daniela Ceccolini, Patrizia D'Incecco, Mariangela Di Felice, Lara Dini, Giordano Gioia, Giuseppe Di Prima, Giancarlo Giusepponi, Luciano Farinelli, Cesarina Lanciotti, Alessia Loffreda, Oriana Luciani, Laura Mariani, Francesco Mastrorilli, Roberto Moroni, Izabela Piatowska, Roberta Rucoli, Giampaola Scoccia, Tiziana Tonelli. Coordinators of Social Districts and Management of Local Services: Daniela Alessandrini, Antonio De Santis, Brunetta Formica, Giuliano Tacchi, Silvia Tortorelli. Management of medical doctors: Rosa Anna Bratti, Giuseppe Bonafede, Severino Lorenzetti, Cristina Paci, Giovanna Picciotti, Donella Pezzola, Vincenzo Rea, Vincenzo Sciale. Marche Region: Gemma Marchegiani, Giovanni Santarelli. Scientific and Technical Committee: Giorgio Caraffa, Filippo Cavallo, Lucia Di Furia, Antonio Lacetera, Claudio M. Maffei, Lamberto Manzoli, Demetrio Postacchini. INRCA Research Team: Roberta Bevilacqua, Anna Rita Bonfigli, Silvia Bustacchini, Marina Capasso, Laura Cassetta, Patrizia Civerchia, Gianluca Furneri, Paolo Marinelli, Gabriella Melchiorre, Maria Elena Moraca, Andrea Principi, Cristina Rocchetti, Daniela Vincitorio.

18 I partners istituzionali di UP-TECH Coordinamento Scientifico IRCCS-INRCA Azienda Sanitaria Unica Regionale Marche Centro Servizi Volontariato ATS San Benedetto d.t. ATS Macerata ATS Pesaro ATS Ancona ATS Fermo Fondazione Zancan Automa s.r.l.