TOWARDS A DEMENTIA ACTION PLAN IN GREECE

Transcription

1 TOWARDS A DEMENTIA ACTION PLAN IN GREECE Dr Paraskevi Sakka Neurologist Psychiatrist Athens Association of Alzheimer s Disease and Related Disorders 20 th Alzheimer Europe Conference Facing dementia together Luxembourg (30 September 2 October 2010)

2 Alzheimer Dementia 2009

3 Patients, families and goverments have to face the existential, medical and socioeconomic challenge of the increasing impact of dementia worldwide.

4 World Alzheimer Report 2010 Alzheimer s Disease International calls on governments worldwide to develop policies and plans for long term care that anticipate and address social and demographic trends and have an explicit focus on supporting family caregivers and ensuring social protection of vulnerable people with dementia.

5 National Dementia Plans in Europe Belgium Cyprus Denmark France Malta Netherlands Norway Portugal Switzerland United Kingdom England Scotland Wales

6 Alzheimer s Associations in Greece Athens 1997 Hellenic Association of Alzheimer s Disease and Related Disorders Thessaloniki 1997 Volos 1998 Xanthi 1998 Hania 1999 Larissa 2000 Athens Association of Alzheimer s Disease and Related Disorders 2002 Irakleio 2002 Rodos 2008

7 Athens Association of Alzheimer s Disease and Related Disorders Is a non profit organization founded in 2002 by carers, doctors and other health professionals Aims to inform the public, educate and support caregivers and offer a better quality of life for patients and families Currently consists of 1450 members Has a staff of 24 health professionals

8 Athens Association of Alzheimer s Disease and Related Disorders Publishes pamphlets, self help books and a quarterly review Holds regular information meetings for the public Organizes seminars for caregivers and health specialists Participates in research protocols, community surveys and European projects Collaborates with State Authorities Since February 2007 runs 2 Day Care Centers and a Home Care service for Dementia patients, projects co financed by the Ministry of Health and the E.U.

9 Athens Association of Alzheimer's Disease & Related Disorders Co financed by Ministry of Health & E.U.

10 Information packs containing CDs, DVDs and booklets are given free to interested parties

11 Booklet for grandchildren of dementia patients Συγγραφέας: Όλγα Λυμπεροπούλου Children s Painting Competition

12 Memory Walks

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14 Dementia Survey in Greece people (lay people, healthcare professionals, policy makers, family members) Still a stigma surrounding the disease lack of knowledge and information No integrated Dementia services and facilities few existing Memory Clinics and Day Care Centers No allowances for patients and carers

15 Dementia in Greece Care patients ΕuroCoDe, ICAD,, 13/7/2009 Vienna 89% of patients cared for at home The majority receive care from family members spouses (50%) children (32%) Lack of government support (services and institutions) Dementia Survey, Greece 2006

16 Dementia in Greece Services 12 Memory Clinics 11 Day Care Centers run by AAs education and support for carers AAs provide : non pharmacological interventions for patients Day Care Centers research, seminars for specialists 2007: full reimbursement of anti dementia drugs Dementia Survey, Greece 2006

17 Dementia Survey in Greece 2006 Barriers to optimal intervention and care Despite being a public health issue, dementia is not a healthcare priority The mistaken belief still exists that little can be done regarding dementia An urgent need for principles and services to address the unmet needs of people with Dementia and their carers

18 Caregivers Survey participants Conclusions Caregivers of AD patients are mainly women, 45+ years old, of middle to upper education Most of them are first degree relatives, living with the patient and not paid for caregiving The key source of information regarding AD are Alzheimer s Associations Caregivers seem to be rather skeptical about AD treatment effectiveness There is an urgent need to recognize the significant practical and emotional burden of AD patients caregivers and support the development or respite services in Greece

19 Caregivers Survey 2008 Conclusions Caring for an AD patient has practical and emotional implications for the caregiver escalating as the disease progresses PRACTICAL IMPLICATIONS EMOTIONAL IMPLICATIONS Caregivers feel responsible for the patient Requires a lot of time Defines caregivers daily schedule Has growing financial demands It is hard for them to see the patient in this condition and they miss the person the patient was before AD Nursing an AD patient has increasing negative psychological implications: sorrow, frustration, anger Intense anxiety for the disease course in the future

20 Greek Dementia Action Plan In 2009, as a result of public pressure a working group was set up under the auspices of the Greek Ministry of Health, consisting of representatives from Alzheimer s Associations in Athens and Thessaloniki In June 2010, the working group published a report and put forward a draft action plan for discussion. The Greek Ministry of Health is planning to organize stakeholders events throughout Greece

21 The Greek Alzheimer s Initiative signatures 21/9/2010 On the occasion of the World Alzheimer s Day Alzheimer patients gave the petition to the Minister of Health and the Mayor of Athens so that a strategic plan could be created and implemented in Greece. National Action Plan for Dementia A coordinated effort on the part of AAs, Health Authorities and Medical Associations is needed to result in a better quality of life for patients and carers. 3 domains: Research Services and Institutions Ethics legislation Epidemiological research Economic Evaluation Public Consultation

22 Website E mail: info@alzheimerathens.gr kentroalz@ath.forthnet.gr Sign The Greek Alzheimer s Initiative

23 Greek Alzheimer s Initiative Athens Association of Alzheimer s Disease and Related Disorders

24 National Action Plan for Dementia Steps to be taken Raise awareness of the full social, health and economic impact of dementia Communicate a more positive image of dementia, emphasizing the value of intervention and availability of support In collaboration with the authorities our efforts will provide help and support to people with Dementia and their carers throughout the course of the disease and so help them to live the best quality of life possible

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