Dementia – a priority problem of long-term care Iva Holmerová Charles University in Prague - Faculty of Humanities Centre of Expertise in Longevity and Long-term Care Centre of Gerontology in Prague Czech Alzheimer Society, Alzheimer Europe Disclosures: • The grant NT11325 of the Ministry of Health and Czech Republic and PRVOUK FHS grant supported this presentation and the participation of our team at the Alzheimer Europe congress • The ELTECA meetings were organised by JM Agency with the support of ZENTIVA SANOFI COMPANY Structure of my presentation • Greetings from Prague • Gerontological and Organisational Supervision • ELTECA and its conclusions • Platform for long-term care – EUGMS, AE… • Long-term care and dementia Greetings from Prague and a small historical reminder Dementia history 1907 – 1 case of dementia Über eine eigenartige Erkrankung der Hirnrinde. Allgemeine Zeitschrift für Psychiatrie 64:146-148 ALOIS ALZHEIMER Amyloid. plaky Neurofib. klubka • OSKAR FISCHER 1876- 1942 (Slaný - KZ Teresienstadt) Worked in the Department of Pathology, Psychiatric Department, Charles University in Prague Oskar Fischer, 1876 - 1942 Oskar Fischer. Die presbyophrene Demenz. 1910. 275 cases, plaques in 56 cases older 50 let. Plaque stages I – VIII. Club – shaped neurites. Michel Goedert. Oskar Fischer and the study of dementia. Brain 2008. ALZHEIMER FISCHER 1 patient 12 AD, 10 controls, 10 psychosis, 45 neurosyphilis Fischer O. Miliare nekrosen mit drusigen Wucherungen der Neurofibrillen, eine regelmässige Veränderung der Hirnrinde bei seniler Demenz. Monatssch Psychiat Neurol 1907;22:361-372 Long time known, yet no solution senile plaques neurofibrilary tangles Prevalence of serious diseases and age (FR PRES 2008, P.Amouyel) 40 30 Dementia 20 Cases / 100 Cases / Stroke 10 Parkinson 0 60 70 80 90 100 Age (years) Alzheimer´s Disease International.If it wereWorld Alzheimer ´as report country 2010: The Global Economic Impact of dementia. World Bank: World development Indicators database. Gross domestic product 2009. In GPD (billion USD) Sweden Belgium Indonesia Dementia Turkey Mexico Canada Long-term care: What are we talking about? • Care for persons … who regularly and for an extended period of time • depend on different kinds of long-term care • services (medical as well as social and others) • • formal (professional) • • or informal (private) arrangements • … in order to cope with physical, mental and social • restrictions and to manage activities of • daily living (ADLs) Community vs institutional care? Q and A • Who with limited self-sufficiency is able to stay in the home environment? • Under which conditions (capacity, family environment, services)? • Who will probably need institutions? • ??? Envisaged answers • Persons with intact mental capacity probably will stay at home as long as possible thanks also to different services and assistive technologies • Persons with limited mental capacity will need assistance and in case of no assistance institutionalisation Prevalence of dementia in residential homes for seniors (IGA study 2005-2007) Klienti s těžkou demencí 3% Normální kognitivní funkce 40% Klienti s demencí 41% Klienti s mírnou poruchou paměti/kognice 16% Vyšetřeno 362 klientů, náhodný výběr ve 12ti domovech pro seniory v Čechách, v rámci šetření vlivu reminiscenční a taneční terapie na zdravotní stav a kvalitu života seniorů v DD Gerontological and organisational supervision (GOS) • 2009 political decision of the Regional Authority of Region Southern Moravia to have „gerontological supervision“ in its 16 residential homes Joint project of: • Czech Society of Gerontology and Geriatrics • Centre of Gerontology • Czech Alzheimer Society • Faculty of Humanities – Centre of Expertise in Longevity and Long-term Care (CELLO) 2010 • Discussion with all 16 residential homes • Introductory meetings and seminars • Dementia pointed out as a major problem • Visits of all 16 residential homes by our team • Tailored programmes of development according to needs of the staff • Benchmarking • Training trainers 2011 • Project evaluated as successfull • Decision of the Regional authority Southern Moravia to continue with an increased budget • Focus on dementia • Criteria of quality of the Czech Alzheimer Society • Preparing for the certification of specialised units for persons with dementia 2012 • Dementia care • Palliative care • Interprofessional collaboration • EU project • 3 cerfitications of „Vážka“ – Czech Alzheimer Society „Criteria of Vážka“ ČALS Q Certification: 50 p- Care for persons with dementia (person centered, skilled, dignity, family involvement, activities, BPSD, skilled nursing…) 20 p - Environment and equipment 25 p - Staff (number, education, support) 5 p - Grandmother´s test Price: 7000 CZK (300 euro), 3 persons 1 day, empower good practice 19 care facilities (contact points) succeded, 1 failed, 2 skipped before certification Střážnice – Home for Seniors 3/2010 – start of the project (GOS), education of 3 leading staff members on dementia, psychosocial interventions 12/2010 – changing environment of the specialised unit 1-3/2011 – staff for the specialised unit, preparing change, dommunication with staff, residents, families 4/2011 – opening of the specialised unití DUHA, support ot the GOS team (p. Hýblová, Mgr. Hradcová, MUDr. Vaňková) 2011 – self-evaluation process according to the criteria „Vážka“ - Collection of data - Regular meeting of all staff - Regular evaluation meetings with management - Focus on : - Daily activities - Collaboration and communication with families - Pain assessment and management - Regular communication with physician, reduction of antipsychotic drugs First experiences - Better communication with persons with dementia, they (and staff) are more satisfied, patients are more interested in different activities - Reduction of „problem“ behaviour - Staff and patients spend more time together - Staff feel better in their role - Activities focus more on „normal“ daily interests and needs, wishes of patients - Staff do better understand needs of patients - Better contact and communication with families - Positive feedback from families - … Negative experience: • Not enough time for „activities“ • Insufficient numbers of staff • Pressure of management to perform „activities“ not enough time for usual tasks Manager´s evaluation and perception of change - Change in thinking of staff - Better understanding of needs of patients - Better involvement of patients in „normal“ daily activities - Better satisfacion based on positive feedback from patients, families, visitors, authorities - More efficient teamwork - More person centered care - Re-thinking of quality of care and priorities - Better communication with families and their involvement in care - Better self confidence, ability to present theri work - „staff are proud of their work“ ELTECA – Exchange of Experience in Long-term Care • Informal network of professionals interested in LTC • Advisory board: September 2011 • Conference: March 2012 • Next advisory board: December 2012 1st advisory board 2011 • AB 2011 (30 experts): Albania, Austria, Czech Republic, Germany, Hungary, Israel, Lithuania, Norway, Poland, Slovakia, UK, USA, „Dignity of Frail Old“ network • Conference 2012 (100 participants): above mentioned + Bulgaria, Netherlands, Serbia, Slovenia, Turkey, Romania, Russia (and others via online broadcasting) • (inclusion of important stakeholders and networks, special focus on CEE countries) Participants - professions • MDs: geriatrics, neurology, psychiatry, GP, CMD, rehabilitation, long-term care medicine, public health • Nurses, OT, PT • Others: public health, ethics, psychology, social worker, philosopher, kinanthropologist, sociologist, lawyer, management scientist, adragogics, econonomist… „Methods“: • Workshops and conference recorded and broadcasted • Informal meetings and enough space for discussions • Feedback from participants and ongoing e-mail communication Summary • The Expert Board was attended by specialists from 13 countries • State of LTC in Europe was discussed and problems identified and prioritized • Tasks prioritized by PC voting (horizon 2012) • Priority areas: – education of caregivers (formal and informal) – interprofessional co-operaton – d awareness building • Next meeting: March 2012, Prague, with Zentiva support Participants Country name e.mail organization ALB Dr. Iris Mone [email protected] Albanian Association of Gerontology ISR Dr Gary Sinoff [email protected] Department of Gerontology, University of Haifa USA Prof Naushira Pandya [email protected] AMDA USA Dr Cecilia Rokusek [email protected] AMDA+ Nova Southeastern University, Fl. USA Anthony Silvagni SLO Dr. Brigita Skela Savic [email protected] College of Nursing Jesenice LT Rasa Ruseckiene [email protected] HU Agnes Egervari [email protected] D Sabine Nemesch [email protected] German Red Cross PL Marzena Dubiel [email protected] SL Mgr Alžběta Krajíčková [email protected] Caritas Slovakia UK Finbarr Martin [email protected] A Johann Baumgartner CZ Iva Holmerová [email protected] Alzheimer Society, Czech Republic CZ Jitka Gabašová [email protected] CZ Monika Válková [email protected] CZ Hana Vaňková [email protected] Ministry of Social Affairs, Czech Republic CZ Tomáš Roubal [email protected] Ministry of Health, Czech Republic CZ Michala Tučková [email protected] Zentiva Jiří Novotný [email protected] 42 Situation in participating countries yes: PL, A, D, Israel, USA, CZ