EuroCoDe WP4: survey of social support in Europe Dianne Gove, Alzheimer Europe Brussels, 30 May 2009

Contents 1.Objectives/definitions 2.Methodology 3.Results 4.Recommendations

1. Objectives of WP4 To carry out a survey of existing social support in the EU members states and also in Iceland, Norway, Switzerland and Turkey To write a comparative report of the kinds of services available in each country To draft recommendations for policy makers on how to improve the provision of social support to people with dementia and carers in Europe

Definition of social support Resources and/or services to help carers and people with dementia cope with the practical and social consequences of the disease on their daily lives (e.g. psychological, social, physical and financial support, as well as various types of care such as palliative care, nursing care and respite care). Nursing care insofar as it relates to dementia e.g. dealing with bedsores, incontinence or taking tablets.

2. Method - working group Set up a working group consisting of the following: –Dianne Gove (LU) –Federico Palermiti (FR) (Fondation Médéric Alzheimer) –Hans-Jürgen Freter (DE) –Letitia Dobranici (ROM) –Louise McCabe (UK) –Maria do Rosário Zinke dos Reis (POR) –Sirkkaliisa Heimonen(FIN) –Sabine Henry (BE) each with responsibility for 4 or 5 countries and for drafting, piloting and refining the questionnaire

Content – general issues Background information about: –Each country’s health and social care systems –Legislation relevant to the provision of social support –Difficulties linked to accessbility (in general) –Financial benefits or allowances granted to people with dementia or carers

Content - specific support Different types of care (e.g. residential, respite, palliative and day care) Personal assistance in the home (e.g. mobility, eating, hygiene, AT etc.) Home care services (e.g. cleaning, transport, laundry etc.) Psychosocial support and training (e.g. therapy, training, courses) Work/tax related support and benefits

Completion/follow-up Completed questionnaires returned Responses transferred to national report Follow-up and clarification of responses Drafting of comparative report and consultation with small group of people with dementia Drafting of recommendations and report

3. Results/deliverables Summary of the level of social support for people with dementia in each country (2007) Comparative report Recommendations on how to improve social support for people with dementia and carers in Europe (2008)

Information obtained 1.Availability of 41 different services/forms of support in each country 2.Degree of state/self funding for each type of service/support 3.Factors limiting access 4.Whether NGOs, volunteers or church groups also provide such services

Availabilty of suitable services Some services are: available but inappropriate not widely available simply lacking

Barriers to support Barriers which prevent people with dementia from accessing existing support. –Legal obligation to care for close relatives –Priority given to people on a very low income –Access limited to severe cases –Access dependent on specific diagnoses –Geographical location –Long waiting lists –Linguistic and cultural differences

Lack of support for carers Training of carers Support groups Counselling Respite (day, night or longer term) Paid leave/flexibility of working hours for carers

4. Recommendations 1/2 Overriding goals and principles –Governments should set up national Alzheimer plans for dementia care and set aside the necessary funds to implement them. Respecting the rights and dignity of people with dementia –Services and support to people with dementia should be provided in such a way as to maintain or enhance their autonomy and dignity, whilst at the same time balancing this with the need to ensure their safety.

2/2 State funding and organisation of social support –The organisation and financing of healthcare and social support should be coordinated in such a way as to ensure a seamless provision of care, support and services to people with dementia and effective coordination between healthcare and social care systems. Ensuring equal access to social support –People with dementia should have access to appropriate and good quality social support if and when needed, irrespective of the type or stage of dementia, the specific diagnosis, geographical location, living situation, age or any other means of discrimination.

Examples of good practice Respecting dignity and autonomy Social inclusion and psychosocial support Supporting independent living Support for minority groups and for people living in rural areas Respite for carers

Conclusion We invite policy makers to consider these recommendations and examples of good practice when developing social support/services for people with dementia and carers

Thank you for your attention