Written by Miret Tuur
In September last year, the Estonian Dementia Competence Centre held a conference in co-operation with the European Network of Intercultural Elderly Care (ENIEC). Symbolically, the conference took place in the town of Narva, located at the Estonian–Russian border, to highlight the idea of bearing in mind the importance of ethnic diversity in dementia care – a new concept for Estonia. There are 180 ethnic groups living in Estonia, a country of 1.3 million. According to the 2011 census, the share of Estonians in the resident population was 69.72%, whereas Russians accounted for 25.2%, Ukrainians for 1,74%, Belarusians for 0,97% and Finns for 0,59%.
As the population of native Russians is quite large in Estonia, the conference was interpreted into Estonian, Russian and English. Among other things, we aimed at raising the awareness of the specialists working with the Russian population about dementia care issues and to acknowledge the importance of cultural differences, when it comes to working with persons with dementia and their families. A significant milestone for dementia care in Estonia was 2016 when the NGO Living with Dementia was established. Dementia-related developments have gained more prominence after 2018, when the Dementia Competence Centre (DCC) was established and started to receive state funding through the Ministry of Social Affairs. The DCC has defined strategic objectives and actions for its work, and brings together four equal partners: the NGO Living with Dementia, Viljandi Hospital, Tallinn Diaconal Hospital and Tartu Health Care College.
Unlike our northern neighbor Finland, where dementia care has been developed for about 30 years, Estonia has been able to do this work systematically for only four years. Therefore, we can learn from others and not start from scratch and move from general to specific. So, the ideas introduced by the ENIEC were a breath of fresh air to us, as well as a reminder that ethnic and cultural diversity cannot be overlooked. Siiri Jaakson’s ETNIMU project is a must for us in the future, in order to learn more about the needs of various nationalities living in Estonia, and their cultures. What Siiri’s presentation also underlined, was the importance of language used when testing and diagnosing early cognitive impairment or dementia – we jeopardize the accuracy of results if using Estonian to test a patient with Russian mother tongue. We do know that the active family practitioners use the Russian version of Mini-Mental State Examination (MMSE). However, the competence level of dementia testing is relatively low in Estonia, and no prevalence statistics are available by nationalities, i.e. we do not know how many Estonians, Russians or other nationalities are amongst persons with dementia. Siiri used the example of an iceberg to illustrate the visible and hidden cultural beliefs and behaviors that need to be considered when trying to change the attitude towards dementia and reduce stigmatization.
The presentation by Jennifer van den Broeke, Standard and dementia care for people with low health literacy, focused on the importance of using easy and understandable language when sharing information. After the conference, we launched our homepage in Russian, and all our leaflets and other print communication is also made available in Russian. Furthermore, we run support groups and training sessions in Russian and offer individual consultation also in Russian, because we have clearly seen that it is much easier for Russian speaking persons to express themselves, understand the information and share worries and feelings in their native language. In addition to language, we keep in mind the easiness – such texts cannot be written using complicated medical terminology a person does not understand, and it should be made even easier to follow if someone has mild cognitive difficulties reading and understanding.
Conny van der Aalsvoort’s presentation about best practices of how to support caregivers was like fascinating – case manager, “odensehouse” dementia-friendly neighborhood is something we need to develop in Estonia, and it is already on our to-do list. We do not have any “memory centres” in our local communities yet, but we see the need for establishing local dementia centres where the competences would be developed and services offered.
The most intriguing and needed topic was perhaps Dementia, intimacy and sexuality by Frans Hoogeveen. Generally, there is no discussion about intimacy in elderly care in Estonia; it is hidden and avoided. In the daily work of the Dementia Competence Centre, we have indeed had specialists, such as care home personnel, seeking our help to solve matters involving clients’ sexual behavior. The knowledge Frans Hoogeveen’s shared at the conference, is now put to good use in our work. We have included the discussions about how essential and natural the intimacy issues are in dementia care in our training. Intimacy is a basic human need and talking about it normalizes it as a part of our lives, and as something that will not disappear with age or diagnosis.
ENIEC broadened our views and understandings of dementia care, whereas the minorities issue is something we need to prioritize. A heartfelt thanks to ENIEC for their help and support in safeguarding the rights of the elderly with a foreign ethnic background in Estonia.
Miret Tuur, Dementia Competence Centre, CEO
NGO Living with Dementia, Member of the Board, www.eludementsusega.ee