Severity of disability and care available to older community-dwellers, Italy. The "Assistenza Socio-Sanitaria in Italia" project

In Italy, many older disabled individuals remain at home, cared for by their family. Aim of the “Assistenza Socio-Sanitaria in Italia” project was to characterize the epidemiology of disability of, and the level of care available to, seniors screened in primary care. In a 2- phase survey, 5445 persons aged 65+ yrs., randomly selected from the lists of 98 general practitioners (GP), were screened (phase I) by their GP with a structured questionnaire to detect the presence of: 1) need of help in performing Basic and 2) Instrumental Activities of Daily Living (BADL, IADL); 3) poor vision and 4) hearing; 5) weight loss; 6) use of homecare services; 7) self-perceived inadequacy of income. Two or more affirmative answers gave access to phase II of the study, based on personal interview. Out of 5445 participants in phase I, 597 (11%) screened positive and 416 were interviewed in phase II. Of them, 4, 29, 19, and 49% were disabled in 1-2 IADL, 3+ IADL, 1-2 BADL, and 3+ BADL, respectively. In women, the severity of disability increased with aging (p<0.001).The extent of the support network increased with the severity of disability (p<0.01). 274 participants with BADL disability received most of their help from closer relatives (58.3±2.5%), followed by salaried assistants (20.5±2.1%), other relatives (19.5±1.9%), and personnel of public healthcare services (0.6±0.36%). The proportion of help provided by relatives, salaried assistants, and public services decreased, increased, and remained unchanged with advancing age, respectively. Of 397 caregivers interviewed, 63% and 13% were aged 65-74 and 75+ years, respectively. In spite of the intensity and long duration of the care provided, only 6% of them reported that caring was an unbearably burden and 67% declared they would be available to continue assistance even in case of further worsening. In conclusion, many older Italians with severe disability remain at home, cared for by their highly supportive families. The level of assistance provided by public healthcare services is minimal, inadequate to existing needs.