Imagine that you have been to the doctor. After the consultation, you leave with a death sentence on a post-it note. You have contracted a serious illness, for which there is no treatment or cure. Afterwards it becomes quiet. This is a true story, and unfortunately it is not unique. A dementia diagnosis is a life crisis for the whole family. Both the person who receives the diagnosis and those around them need follow-up and support. As the interest organization for people with dementia and their relatives, we see that many unfortunately do not get the help they need. Being sent home from the doctor with only a note in hand with the name of the disease is frightening and lonely. Some describe it as falling into a black hole. Affects many The need for information is great, and when the worst shock has subsided, the questions arise. Then a support device must be in place. Today, over 100,000 people have dementia in Norway, and it is the third most common cause of death, after cancer and cardiovascular disease. Four close relatives are counted for each person with dementia. Therefore, around half a million people live with this close to them, either as patients or relatives. These numbers are expected to double over the next few decades, because we are getting older. Among the closest relatives we find both spouses and children. Most people who get dementia are elderly, but younger people who are in the middle of life can also get dementia. Waited four years for follow-up One of the many people with dementia is Jan Runar Eliassen. Many know him as the young father of five from the Demenskor series on news. He received little help after his diagnosis, and far too many have experienced the same. For Jan Runar and his family, it took four years before a dementia coordinator came to visit. The only offer he got was at a day center with others his parents’ age. They were far sicker than himself. Jan Runar Eliassen with his wife Marion and their five children after a concert with the dementia choir in 2022. Photo: Anna Sørmarken Vestly / news Many people with dementia today receive good help, but often this has come as a result of the tireless efforts of relatives. Relatives must be superhuman. They have to support the sick, take care of everything at home and the younger ones often have children and their own jobs which they also have to get done. That is why we all too often hear about relatives who tire themselves out and become ill themselves. With better support and relief for relatives, we can avoid having two patients instead of one. Children as relatives need specially adapted services. Requirements: Follow-up after diagnosis In the new season of the Dementia Choir, Jan Runar calls for a package course for those with dementia. There are too many variations in the offer today, and there is a need for a predictable and comprehensive offer for everyone who gets dementia, regardless of where you live in the country. Package progress has been introduced for other diseases, such as cancer, drug addiction and mental health, and is a systematization of what should happen when during treatment in hospital. The purpose is to ensure comprehensive and predictable progress. For dementia, which manifests itself so differently, there is no one-size-fits-all standard. But there are good guides for the municipalities that describe which services may be relevant in the various phases of dementia. The purpose is to ensure that the right service is in place at the right time, and that they cover the needs of the individual family. The problem is that there are often not enough resources, personnel or expertise to follow this up. This guide must go from being a theoretical possibility to a practical reality for those affected. Relatives and people with dementia need better and more coherent services, where a fixed contact person in the municipality regularly makes contact with information and offers, without them having to seek this out themselves. While we wait for the cure Calling a dementia diagnosis a death sentence may seem brutal, but unfortunately that is the reality today. That doesn’t mean there isn’t hope. Researchers are constantly making new discoveries and more has happened on the research front in the last two years than in the last two decades. New technology can help give us more knowledge about the disease, and thus about possible solutions. We are getting further and further in making an early diagnosis, which means a lot when we have a cure, so treatment can be started before the disease does much damage. Although there has been more news about progress in research into Alzheimer’s and other dementia diseases in recent years, we are still far from a cure. Jan Runar Eliassen had to wait four years for a coordinated offer when he received the diagnosis. Photo: The National Association More research needs to be done. Jan Runar Eliassen is an important voice for more money for dementia research, because it is only with this that we can crack the dementia code. While we wait for a breakthrough, good nursing and care services are the most important treatment we have to offer people with dementia today. The right measures at the right time can help reduce symptoms and make life easier for the person with dementia and for the people around them. Thus, they may also be able to stay at home longer, as the government wants. But then we as a society have to roll up our sleeves and equip the services. Everyone affected by dementia deserves follow-up that can help them live dignified lives and have many good years, filled with great experiences. Until the cure comes, we need so much more than a post-it note in hand with a death sentence on it.
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Death sentence on a post-it note – Speech
