One Hundred Hours For One Hundred Families
Project location: ITALY
Project start date: February 2002 - Project end date: June 2003
Project number: 2001-19
Beneficiary: Associazione Alzheimer Roma
The "One hundred hours for one hundred families" project was designed to provide 10,000 hours of no-cost home care to 100 families living in the Lazio region who assist Alzheimer's patients.
The project's goals were the following:
a) improve the patients' and families' quality of life, so as to enable him or her to stay in the family for as long as possible and in the best possible conditions;
b) set up a standard pattern for intervention to be submitted to public institutions for integration into public home-care schemes.
95 families were involved in the project; 4 of them were given 200 hours of home care instead of 100 due to the gravity of the situation; 1 family taking care of 2 patients was given 300 hours of assistance.
The project's main milestones were the following:
May 2002: selection of the operators carried out by a joint team including Associazione Alzheimer Roma's members and A.Fa.R. (Associazione Fatebenefratelli per la Ricerca Scientifica e Biomedica).
June11, 2002: a press conference was held at the Fatebenefratelli "San Giovanni Calibita" Hospital to officially present the project to the institutions and the media.
May 22, 2002 - July 7, 2002: The first training course (70 hours approximately) was held in three modules: 1) medi-care aspects (25 hours), 2) psychological-rehabilitation aspects (30 hours), 3) social aspects (5 hours), followed by a 5-hour training course at the Neuroscience Department of the Fatebenefratelli Hospital.
May 2002 - August 2002: selection of the families: 128 families were submitted to the purpose-built questionnaires (assessment of care-related needs of patients and caregivers; Beck's Depression Scale aimed at assessing the caregiver's degree of depression; Novacki and Guest's Caregiver Burden Inventory aimed at measuring the caregiver's work burden while assisting the patient; health survey QOLA (Quality of Life Assessment - SF-36, i.e. the Italian version of the test aimed at assessing the caregiver's health, how he or she feels and how he or she manages to carry out his or her daily tasks).
33 families dropped out, 14 of them because the patient had died. A few families living in Civitavecchia, Frosinone and Aprilia were also involved in the project.
The selection criteria were the following:
1) accept as many families as possible, giving priority to those who had already contracted the Association and has established some kind of relationship with it;
2) Assess the family situation: a) give absolute priority to patients living on their own, especially if the disease was at its early stage; b) give relative priority to patients taken care of by just one caregiver, with special attention being paid to the patient's conditions. In other words, we enrolled families taking care of patients with medium-serious conditions rather than terminal patients;
3) To complete point 2, give relative priority to cases where the caregiver appeared to be specially in need for psychological help.
The assistance modules provided for were the following:
- first module: home care given 3 times a week, totalling one month;
- second module: 10 hours of home care during the week + 12 consecutive hours 1 day/month, totalling 2 months.
The criteria adopted to assign the modules to the families were the following:
1. the demand for home care expressed by the caregiver on the basis of such constraints as time and type of assistance;
2. the project's requirements aiming at finding an equilibrium between the administration of the two modules and the distribution of both modules so as to involve patients at early, medium, final stage.
On behalf of the association, a few volunteers carried out the selection of the families and assigned the most suitable home-care module; then the association selected the social Cooperatives, mainly on the basis of their territorial coverage. The list of families was then submitted to the above-mentioned Cooperatives and the number of operators to be involved was jointly decided. In some cases, a few adjustments were made to the home-care modules in order to meet the needs of the families.
As a matter of fact, the second module appeared to be the most favoured by the caregivers.
As far as 17 families were concerned, it was necessary to administer the entry and final questionnaires at the caregiver's domicile.
On September 21, 2002 the home care program started for 50 families approximately. During the whole period, daily and weekly contacts were kept with the Cooperatives and the families, respectively.
Between the end of November and the beginning of December 2002 a second refresher course for the operators was held; due to the subjects treated during the course, family caregivers were also involved (2 days), fo a total 22 hours. The trainees were operators who had already started the home care program but had little experience in Alzheimer's disease.
In December 2002 the administration of questionnaires started in order to assess the degree of satisfaction as far as the home care was concerned. The socio-anthropological questionnaire was also administered, while the home care program started for the remaining families.
In a few cases, the program was delayed due to the patient's health conditions or because of the families' involvement in the Alzheimer's Day centers Program which had started in the meanwhile in Rome.
May - July 2003: Data collection phase
July - August 2003: The data collected were processed and assessed in the light of the medical, assistance and socio-anthropological interventions that had been carried out, while at the same time the drafting of the book that summarizes the project's results, modus operandi and assessments started.
This book was presented on October 3, 2003 during a press conference held at the Fatebenefratelli Hospital. On the whole, besides the Nando Peretti Foundation - whose contribution was vital so as to make this project not just a wishful thinking but a real achievement - the "One hundred hours for one hundred families" project involved the Associazione Alzheimer Roma, A.Fa.R., 11 Cooperatives working in the Lazio region, 2 Alzheimer's Evaluation Units (Civitavecchia and Frosinone); all of them played an essential role to find operators and family caregivers. Last but not least, the project involved the 95 families.
The idea that inspired this project and the home care program carried out was the assessment of the impact that home care can have on patients' conditions, so as to measure how this "exercise" can be transformed into concrete action aiming at helping families in the daily care of the patient, thus providing for an effective, no-cost assistance. As Prof. Paolo Maria Rossini - the scientific project leader - pointed out: "Even though this was a limited pilot experience, the "One hundred hours for one hundred families" project gave fruitful and encouraging results. We should consider it as an important starting point towards the achievement of the home care goal that we are pursuing, so as to give assistance to patients while they still live in their homes and to avoid institutionalisation, which could only add more problems to those already experienced by the patients and their families".
To download the book final report by ALZHEIMER ROMA ONLUS please click here.