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

7.3 million people with dementia in EU27 Alzheimer’s in Europe CONTEXT 7.3 million people with dementia in EU27 numbers expected to at least double by 2040 € 160 billion: the total estimated cost of dementia disorders in EU27 in 2008 56% of which were costs of informal (unpaid) care € 22.000 per person per year: the average cost with dementia in EU27 Source: Anders Wimo, 2008 – in Alzheimer Europe 22nd European Social Services Conference – Rome, 7-9 July 2014

Alzheimer’s in Italy CONTEXT In Italy, more than 1 million people are affected by dementia 600.000 affected by Alzheimer's disease Total cost of dementia is estimated beyond 29 billions € The cost per demented is about 28.600 € Source: Alzheimer Italia, 2011 e Alzheimer Europe, 2008 Direct costs are 15% of the total, i.e. 4.500 € per demented Informal care costs are 85% of total cost, i.e. 24.100 € per demented Source: Alzheimer Europe, 2008 22nd European Social Services Conference – Rome, 7-9 July 2014

Alzheimer’s in Lazio CONTEXT Total inhabitants of Lazio: 5.500.000 Inhabitants aged 65+: 1.100.000 Estimated dementia incidence: 71.000 (6% of population aged 65+) Estimated Alzheimer’s incidence: 40.000 (55% of all dementias) Actual patients in care affected by dementia: 36.000 Costs incurred by families (80%) Costs incurred by public sector (20%) Direct costs Direct share of health and social service costs Costs for assistance personnel and aid tools Informal care costs Loss of productivity (for both demented and family members) Psychological and physical stress and pain for informal caregivers Direct costs 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. 22nd European Social Services Conference – Rome, 7-9 July 2014

World Report on Alzheimer’s 2013 CONTEXT 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 22nd European Social Services Conference – Rome, 7-9 July 2014

National level Lazio Region Regulatory framework in Italy CONTEXT 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 22nd European Social Services Conference – Rome, 7-9 July 2014

Objectives Overview on the Regional Plan REGIONAL POLICY 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 € 7.000.000,00 (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 22nd European Social Services Conference – Rome, 7-9 July 2014

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

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

Health Social Social & healthcare integration REGIONAL POLICY 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 22nd European Social Services Conference – Rome, 7-9 July 2014

41 53 6 Resources destination REGIONAL POLICY 22nd European Social Services Conference – Rome, 7-9 July 2014

Outcome Criticalities Residential & semi RESULTS AND PERFORMANCE Day care centres for Alzheimer's Short term residential service Outcome Criticalities 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 High start up and management costs Uncertainty about level of financial resources through different years Service offer in 2012: 120 short term residential places Increase of service offer in 2014: 30 short term residential places Territorial diversity in service offer: 17 day care centres in Rome

Outcome Criticalities Home-care RESULTS AND PERFORMANCE Direct and indirect home-care Outcome Criticalities Current offer: 8.500 users Increase of: 500 new users who will receive home-care Uneven service supply: from six months to one year from 12 to 44 hours per month from 100 to 800 € per month Home care is the most requested service in non-metropolitan areas

Outcome Criticalities Information & training RESULTS AND PERFORMANCE Information to families Self-mutual help of informal care-givers Alzheimer Cafè Care-givers training Outcome Criticalities Uneven use of financial resources and kind of service delivered New places for socialization (Alzheimer Café) Development of family networks Training for 130 formal and informal caregivers Care-givers often get little Alzheimer’s specific training

Summing up… on the positive side Conclusions RESULTS AND PERFORMANCE Summing up… on the positive side Widening of type and quantity of supplyed services Guidelines in service supplying Online application for monitoring and financial reporting

Summing up… the critical sides Conclusions RESULTS AND PERFORMANCE Summing up… the critical sides Uneven territorial distribution of service supplying (cultural and social differences, infrastructure, etc.) Lack of specific standards for services (access procedures, fruition, territorial characteristics, functions, costs)

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