Liv Wold was diagnosed with Alzheimer’s disease in 2020. It has changed both her life and those around her. 12 March 2020, the day Norway shut down due to corona pandemic, Liv Wold was diagnosed with Alzheimer’s disease. In a short time, the disease has changed her life. Photo: Lokman Ghorbani / news – It is a cruel and invisible disease where the sick person loses himself, and you lose the one you love, slowly. The person you love is gone, says Kristin with tears in her eyes. Liv and Kristin met nine years ago, and they moved together in Liv’s home municipality of Ås. Kristin talks about a grieving process when you constantly discover that several skills are disappearing in the person who is ill. – You get used to it, but then something new always comes up. What used to be their joint project, telling people about the disease, has now become Kristin’s project alone. Photo: Lokman Ghorbani / news Kristin wants people to understand and is happy to give some advice to people who experience the same as her. Knowledge Half of the municipalities in this country have signed an agreement with the National Association for Public Health to work for a dementia-friendly society. Ås municipality, just outside Oslo, where Liv and Kristin live, is one of the municipalities that has signed such an agreement. Through the agreement, the municipality has undertaken to offer courses on dementia to those who work in service professions. In 2022, the municipality received an award for its work for people with dementia. – We have many different professional groups on the course, from people in shops, in cafes to dentists and taxi drivers. The goal is for more people to know more about dementia, so that those with the diagnosis can live active and good lives and get the help, understanding and respect they need, says the secretary general of the National Association, Mina Gerhardsen. She highlights problems such as forgetting the pin code in the store or not remembering where you live. Kristin holds Liv’s hand tightly. The fact that people understand helps, believes Kristin. – It is important that people around are able to see the small signs, she says. Dementia-friendly shopping Let the person who is ill do tasks he or she can master, advises Kristin. Life rolls the wagon. It is a task she masters. Photo: Marit Sirum-Eikre / news – When we shop for food, it is Liv who drives the cart. Her job is to lift goods from the cart. The staff here know that Liv has Alzheimer’s and are very patient. At this shopping centre, Alti Vinterbro, many of the employees have attended courses and learned about dementia. The center and the stores where at least two of the employees have attended a course are classified as “dementia-friendly” and have a label on the outside of the store. A dementia-friendly bakery at the Alti Vinterbro shopping center just south of Oslo. Photo: Marit Sirum-Eikre / news At baker Nordby at this centre, two of the employees have attended a course. Head of department Kjersti Nyvang is convinced that it is important. – It can affect us all, she says. She says that she has several times met people at the center who have lost their way. – It is important to be friendly and have patience. At Baker Nordby in the shopping center Alti Vinterbro, the employees have attended a course to learn about dementia. Here, as relatives, both Liv and Kristin are safe, Kristin believes. She also boasts that there are fewer things than usual in the aisle at this centre, which makes it easier for people like Liv. Center manager Grethe Johnsen is happy that she can present the shopping center just outside Oslo as dementia-friendly. Grethe Johnsen, center manager, Alti Vinterbro, is proud that the shopping center at Vinterbro is equipped for people with dementia. Photo: Lokman Ghorbani / news – I think we all know someone who has dementia or other types of challenges that make it important that we take a little more time. She says that the employees have become more aware. – We have many older customers and feel that this is absolutely the right way to go. The bookshop is also dementia-friendly, and the staff have attended courses. They understand when Kristin asks for a book that is suitable for someone with dementia. Many people with dementia lose the ability to read. This also applies to Life. She lost the ability to read early. Today, Kristin reads a lot for Liv. Then they share good experiences. She explains that a book with a few people is easier than a book with a large gallery of people. It is also important to Liv that the action takes place chronologically. Figures and facts about dementia Around 101,000 people live with dementia in Norway today, and it is expected to more than double by the year 2050. Dementia is the general term for several brain diseases that cause cognitive impairment and other functional losses that affect the ability to manage oneself in daily life. The most common cause of dementia is Alzheimer’s disease. Dementia develops slowly over time and cannot be cured. The deterioration can happen more quickly over time and makes the person with dementia need help. Most patients with dementia die within a ten-year period after the diagnosis is made, either from dementia or from other causes. Number of people in Norway with dementia in 2020: Age: Number: 30–64 years: 2108 people 65–69 years: 2008 people 70–74 years: 14,493 people 75–79 years: 16,691 people 80–84 years: 20,380 people 85–89 years: 23,675 people 90+ years: 21,762 people Total 101,118 people Source: Folkehelserapporten – The state of health in Norway, FHI Memories and pictures They had some good years together before the disease struck. There were some active years from 2014 until 2020, when Liv was diagnosed with Alzheimer’s. Today, they spend a lot of time thinking about the good years. Kristin and Liv in 2014. Photo: Privat The family has made a separate memory album for Liv. One piece of advice that is repeated for relatives and people affected by dementia is that it is important to take care of good times. Then the use of photographs is important. Liv Wold on a mountain trip in 2016. Photo: Private – A big problem for people with dementia is that many eventually do not remember who they actually are, and lose continuity in their own lives, says Mona Bekkhus-Wetterberg, dementia coordinator in Ås municipality. She has worked with people with dementia for around 30 years – and has written an article about the use of memory albums. – It is much easier to recognize what you hear or see than to recall a memory. She says that it can help the person maintain their self-image. – If you lose track of yourself and lose the thread of your own life, it can create unrest and anxiety, she says. The National Center for Aging and Health describes what a memory album can look like. Among other things, there should only be one image per page, to make it as clear as possible. Doing things together – It is important to find things to do that the sick person likes and can master, says Kristin. Liv loves to sing, so they often do. For Liv, it has meant a lot to be part of the “Dementia Choir” on news. She remembers details about the song and the exercises she is doing better than anything else. Then she smiles and becomes engaged. The dementia choir sings in front of a packed hall at Chat Noir in October 2022. Liv participated in the program and is number three from the bottom left. Photo: Julia Marie Naglestad / Nordisk Banijay/news Although most details of yesterday have been erased from consciousness, she knows well who led yesterday’s choir practice. Then she leans forward and eagerly tells Kristin. – It just so happens that we have a dance too, smiles Kristin. It’s something Liv likes. Around half a million Norwegians are affected by dementia, either as sufferers or as relatives. To make life easier, there is agreement that physical activity is important and can make the days with dementia better. According to the National Center for Aging and Health, continuing as before is one of the most important things anyone who has been diagnosed with dementia can do. Anyone who likes to go on walks should go on more walks. Playing an instrument or singing, going to a café or watching a football match – anything that keeps the head and body moving is positive, they write on their website. The advice from the National Association for Public Health is that you should continue with activities that give you pleasure and be happy to try new ones. It is also important to be with others, although people with dementia often find it difficult. A safe home Only three and a half years after Liv’s diagnosis, Kristin is terrified that her partner will have to go to a nursing home. Today, she is home for two weeks and on respite care for two weeks – and it is no longer a matter of course that Liv recognizes her every day. It depends on the form of the day. – I’m fine, says Liv in response to a question. But it is difficult to know if she knows what she is answering. Kristin asked how she experiences going to shops. She answers herself. – Previously, you were concerned that people should make themselves known, say who they are. She was out a lot and walked alone, Kristin explains. – Then it was important that people knew about the disease, and that people could help. The goal – also for everyone affected by dementia – is that you should be as self-reliant and secure as possible, without changing too much. Mona Bekkhus-Wetterberg is dementia coordinator in Ås municipality. Here she is in a meeting to discuss how another player in the municipality can become dementia-friendly. Photo: Lokman Ghorbani / news – It is important that those affected by a dementia disease can live at home for as long as possible, and be able to fend for themselves and master doing ordinary things, for example going to a shop or to church , says Bekkhus-Wetterberg. But the safe home can suddenly become unsafe if nothing is done. It is about safety in the home, about preventing accidents and perhaps fire. The Norwegian Association for Public Health writes on its website about the assistive devices that should be connected to help people stay at home for as long as possible. They suggest an occupational therapist, a home nurse and an electrician – and aids such as a stove monitor and timer. Bekkhus-Wetterberg also recommends the municipalities’ memory team and/or dementia coordinator. – How important is it that society is prepared for people with dementia? The dementia coordinator in Ås believes it is important that those who are ill do not end up outside, but can still be part of society. – It is about dignity for the person with dementia, and then it is about safety in a local community and safety for relatives, she says. At the very end, she has a piece of advice. – Say who you are, don’t ask: “Do you remember me?”. The question can be very difficult for someone with dementia, who cannot remember. THE DEMENTIA LINE Do you need someone to talk to after reading this case? Many people are affected by dementia. The incidence figures in Norway and estimates of how dementia will develop in the future are presented at national level, county level and for all Norwegian municipalities in demenskartet.no. Hello. Thanks for reading all the way down. Is there anything you think I should write about? Please send me an email. Also read:
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