Workshop presented by Regione Lazio Italia Social and

Workshop presented by: Regione Lazio, Italia Social and healthcare integration Lazio Regional Authority strategy to support people with Alzheimer’s 22 nd European Social Services Conference – Rome, 7 -9 July 2014

CONTEXT Alzheimer’s in Europe 7. 3 million people with dementia in EU 27 numbers expected to at least double by 2040 € 160 billion: the total estimated cost of dementia disorders in EU 27 in 2008 56% of which were costs of informal (unpaid) care € 22. 000 person per year: the average cost with dementia in EU 27 Source: Anders Wimo, 2008 – in Alzheimer Europe 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 1 di 16

CONTEXT Alzheimer’s in Italy Ø In Italy, more than 1 dementia million people are affected by Ø 600. 000 affected by Alzheimer's disease Ø Total cost of dementia is estimated beyond 29 billions € Ø The cost per demented is about 28. 600 € Source: Alzheimer Italia, 2011 e Alzheimer Europe, 2008 Source: Alzheimer Europe, 2008 ly Ita en 0 ed Informal care costs are 85% of total cost, i. e. 24. 100 € per demented Informal care cost 50 Direct cost Sw Direct costs are 15% of the total, i. e. 4. 500 € per demented 100 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 2 di 16

CONTEXT Alzheimer’s in Lazio Ø Total inhabitants of Lazio: 5. 500. 000 Ø Inhabitants aged 65+: 1. 100. 000 Ø Estimated dementia incidence: 71. 000 (6% of population aged 65+) Ø Estimated Alzheimer’s incidence: 40. 000 (55% of all dementias) Ø Actual patients in care affected by dementia: 36. 000 Costs incurred by families (80%) Direct costs Direct share of health and social service costs Costs for assistance personnel and aid tools § § Costs incurred by public sector (20%) Direct costs § § § Informal care costs § § § Loss of productivity (for both demented and family members) Psychological and physical stress and pain for informal caregivers Medical exams, hospital stays, medicines Formal care: home care, day care centers Nursing homes Financial support to demented and families: disability pensions, vouchers for assistance, etc. 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 3 di 16

CONTEXT World Report on Alzheimer’s 2013 The 2013 World Report on Alzheimer’s outlines the following main Recommendations: § Governments around the world should make dementia a priority by implementing national plans… § Monitor the quality of dementia care in all settings § Autonomy and choice should be promoted at all stages of the dementia journey § Health and social care systems should be better integrated § Need to train caregivers and to provide them with financial reward § Quality of life at home can be as good, and costs are comparable § The quality of care in care homes should be monitored through the quality of life and satisfaction of their residents 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 4 di 16

CONTEXT Regulatory framework in Italy National level Lazio Region L. 104/1992 – National law on assistance, social inclusion and rights of the disabled L. R. 6/2012 – Regional Plan for people affected by Alzheimer-Perusini’s and other dementias A national plan on Alzheimer’s is to be approved It defines the service network, access procedures, some governance tools such as the Dementias Information System and the Dementias Regional Register. Services are designed as follows: • Centres for diagnosis and medical treatment • Semi-residential/Residential services (both health and social care) • Home care • Financial support to families and to volunteering associations • Training courses for caregivers + information for demented and families • Register and Information system 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 5 di 16

REGIONAL POLICY Overview on the Regional Plan National and regional resources in 2012 Fund for disability (non self sufficient persons, LSA, dementias, etc. ) € 119. 600. 000, 00 Specific fund for Alzheimer's € 7. 000, 00 (DGR 504/2012) Objectives § To foster a multidimensional approach to Alzheimer's disease § To realize and integrated network of health and social services for demented and their families § To even out the services offer on the whole of regional territory € 7. 000, 00 22 nd European Social Services Conference – Rome, 7 -9 July 2014 National resources Regional resources Diapositiva 6 di 16

REGIONAL POLICY Outstanding features 1. New social units coinciding with health units 2. Integrated health-and-social actions 3. Bottom up process in service design and delivery 4. Service standardization 5. Online monitoring and financial reporting 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 7 di 16

REGIONAL POLICY New social units Social Health units (ASL) Social Districts and new social scope units 8 new social units coinciding with health units and formed by social districts 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 8 di 16

REGIONAL POLICY Social & healthcare integration Health Social • New social services units: coinciding with health units • Shared methodology between social services and health sector • Shared design of Individual Assistance plan (PAI) • Shared services delivery with health sector 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 9 di 16

REGIONAL POLICY Resources destination Residential / semi-residential Daycare centres and short-term residential 41 Direct and indirect home-care 53 6 Information and training Alzheimer's Café, self-mutual help, caregivers' training 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 10 di 16

RESULTS AND PERFORMANCE Residential & semi Day care centres for Alzheimer's Short term residential service Outcome Service offer in 2012: 19 day care centres with 400 places Increase of service offer in 2014: 8 new day care centres and 140 places Service offer in 2012: 120 short term residential places Increase of service offer in 2014: 30 short term residential places Criticalities High start up and management costs Uncertainty about level of financial resources through different years Territorial diversity in service offer: 17 day care centres in Rome 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 11 di 16

RESULTS AND PERFORMANCE Home-care Direct and indirect home-care Outcome Criticalities Current offer: 8. 500 users Uneven service supply: Increase of: from 12 to 44 hours per month from six months to one year 500 new users who will receive home-care from 100 to 800 € per month Home care is the most requested service in non-metropolitan areas 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 12 di 16

RESULTS AND PERFORMANCE Information & training Information to families Self-mutual help of informal care-givers Alzheimer Cafè Care-givers training Outcome New places for socialization (Alzheimer Café) Development of family networks Training for 130 formal and informal caregivers Criticalities Uneven use of financial resources and kind of service delivered Care-givers often get little Alzheimer’s specific training 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 13 di 16

RESULTS AND PERFORMANCE Conclusions Summing up… on the positive side ü Widening of type and quantity of supplyed services ü ü Guidelines in service supplying Online application for monitoring and financial reporting 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 14 di 16

RESULTS AND PERFORMANCE Conclusions Summing up… the critical sides ü Uneven territorial distribution of service supplying (cultural and social differences, infrastructure, etc. ) ü Lack of specific standards for services (access procedures, fruition, territorial characteristics, functions, costs) 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 15 di 16

Themes for working groups 1. Informal care: choice or necessity? 2. Quality of services: the point of view the supplier Vs the point of view of the user 3. A look at the future: what services for Alzheimer’s? 22 nd European Social Services Conference – Rome, 7 -9 July 2014 Diapositiva 16 di 16