On 25 May 2019, Spominčica organised a conference, entitled “In the Rhythm of the Human Brain”, in Cankarjev dom (convention centre), Ljubljana. For the first time, five different neurological diseases - dementia, Parkinson's disease, Multiple Sclerosis (MS), Huntington's disease and Spinal Muscular Atrophy (SMA) - were presented and discussed together, at one event. More than 300 participants attended the conference, including members of the general public, people living with these diseases and their family members, experts and policy makers.
In her welcome speech, Štefanija L. Zlobec, President of Spominčica (Alzheimer Slovenia) stated, that recognition of early signs is possible in all five of the diseases mentioned, and that timely diagnosis is important, since more effective interventions and treatments to control these diseases and/or their symptoms are possible, leading to a better quality-of-life. In her conclusion, she stated, confidently, that a long-term care act would soon be adopted in Slovenia. She added that whole-system care options need to be revised and adapted, to offer more flexible and user-friendly services, especially in the respite care sector.
The conference was held under the honorary patronage of the Slovenian Prime Minister, Marjan Šarec, who also addressed the delegates, committing himself to the creation and adoption of a long-term care act. Dr Aiga Rurane, representative of the World Health Organisation (WHO) in Slovenia, stressed the importance of awareness-raising, reducing stigma and improving the lives of persons with dementia and other neurological diseases. Other guests at the conference were: Aleš Šabeder, Minister of Health; Dr Tomaž Pilberšek, Secretary of State; and Breda Božnik, State Secretary, Ministry of Labour, Family and Social Affairs.
Each session began with a different keynote speaker - a medical expert - who presented one of the five diseases being discussed. These lectures were followed by a panel discussion involving people living with the diseases/conditions, carers, experts and policy makers. The third and final section of each session was turned over to the audience, giving them a chance to voice relevant questions concerning diagnosis, treatment and living with a disease. Tomaž Gržinič, member of the European Working Group of People with Dementia (EWGPWD) and Mihela Španja, wife of the first Slovenian EWGPWD member Bojan Španja, participated in the dementia panel, together with Dr Milica Gregorič Kramberger (leader of the Slovenian contingent of IMI project MOPEAD), Ms L. Zlobec, and Janja Romih, a representative from the Ministry of Labour, Family and Social Affairs.
The conference succeeded in engaging people living with neurological disease and their carers, who were key in all the panel discussions. Their contributions can have a positive influence on the current gaps in social care and healthcare services, and contribute to a brighter future, in terms of affordable and user-friendly facilities and services that promote social inclusion, dignity and quality-of-life for each individual.
