Chris Ellermaa, member of the European Dementia Carers Working Group and Board member of NGO Life with Dementia in Estonia, writes about activities taking place in her country


May was a very active month in Estonia for the NGO Life with Dementia (NGO LwD). Being a board member of the NGO LwD I had the honour of representing patients and their carers in the panel discussion dedicated to the care reform coming into effect on 1 July. The care reform means that the state will aid people in paying for care. Until now, nursing home fees have been fully paid for by the service user, but as from 1 July 2023, the fee will be divided between the person using the service and the local government.

The panel discussion was part of an educational day about the reform, organised by the Estonian Social Work Association (ESWA). Preparing for the discussion, we created a questionnaire among our NGO members, friends and community to get a better understanding about people's expectations and questions related to the reform. Based on the answers, I also wrote an opinion article for the Estonian Public Broadcasting portal.

Some of the proposals related to the care reform that were put to the panel of the ESWA day and appeared in the article were:

• A clear and easy-to-find guide to the websites of local governments, for people looking for care home services.

• A care home service fee calculator that helps calculate the financial contribution of all parties to be created and shared on the Social Insurance Board webpage.

Some other more general suggestions were:

• Let us see the person behind the disability and disease, in order to reduce labelling. Let us always use the expression "person with dementia".

• Let us see a home behind the institutional care service, because it is the last home for many people and not just a "service" where we place people needing 24-hour care.

I also had an opportunity to talk about dementia and what every individual can do for prevention, on a TV show called Studio. The Dementia Competence Centre (DKK) in Estonia has an initiative to give dementia-friendly "labels" to care homes. These dementia-friendly labels are provided at the request of the care home, followed by a detailed interview and on-site visit. In May, I had the chance to be a member of the evaluation group visiting a care home interested in obtaining the dementia-friendly label. It was a really interesting and eye-opening exercise! I am also happy to report that our NGO was (s)elected to be a member of a donation platform called “I love to help”, where everyone can make one-time or recurrent donations. Our dream is to re-establish memory cafes for people living with dementia. Make your donation today!

Last but not least, today, 24 May, my colleague from the NGO Board and are opening the KUMU documentary event “Dear Memories”. The documentary is about Thomas Hoepker, who is one of the most important living photographers worldwide. And who has been diagnosed with Alzheimer’s disease.