On TV, we follow the participants in the series “Dementia Choir” and their relatives through rehearsals and concerts. After the grand finale with a concert, the cameras are turned off. But the choir continues to sing every week under the auspices of the National Association for Public Health’s Dementia Association in Oslo. Relatives also gather here, for yoga and coffee chats – and share frustration over dementia care where needs and reality are often far apart. They share it with each other. They share it with us. As one of them recently stated: “This is the first time I’ve felt like I’m breathing in years.” The response to the TV series Demenskoret has been absolutely fantastic. We get new members and donors, the Dementia Line experiences a doubling in the number of callers, and many people get in touch to start dementia choirs around various municipalities. The National Association for Public Health is deeply grateful for all the commitment and hopes that there will be many new choirs. But there must be much more than choir. People with dementia and their relatives need a community that does better. They need politicians who take responsibility for ensuring that those who develop dementia have activities that feel meaningful and bring joy. They need politicians who give relatives predictability and certainty that they will get help, so that they avoid becoming burnt out and sick themselves. Only one in three is offered an activity in their home municipality Since 2020, the municipalities have been required to offer people living at home with dementia an organized and adapted activity offer. But the duty to give does not give the right to receive. Only one in three people living at home with dementia has an activity offer. This offer is often not adapted to the person who will use it, either in content or scope. Activity should contribute to content and meaning in the day for the person with dementia. With an illness that weakens initiative, it is crucial to find interest in order to make this work. For some, the answer is a choir, for others a tour group or carpentry workshop. The most important thing is that it is not just a matter of storage, and that the next of kin have a clear conscience when their loved ones are not at home. It is also important for the next of kin to get these hours without responsibility for a person who constantly needs more help as the disease progresses. These are things that are brought up in the relatives’ conversation while the Dementia Choir rehearses. Relatives become ill without relief One of the beautiful things about the Dementia Choir series is that it shows that life with dementia can also be beautiful. But when the TV lights are off, there is a lot of audience not fpr se. Both from relatives of the Dementia Choir and from the many people we talk to daily on our Dementia Line, we hear about a very lonely and exhausting life. Many have not slept a whole night for years, perhaps only two hours straight, because they have to be a nurse and night watchman, in addition to a spouse, 24 hours a day. While the rest of us get five weeks’ holiday and can take a sick day or two if we are not fit, relatives never have time off. It is not a holiday for those who have to remind their loved ones to dress, eat, drink, take their medicine or what a toothbrush is. There is no respite in everyday life when the partner never contributes to any of the everyday activities such as cooking, cleaning and washing. There will be no night’s sleep for those who have to get up in the middle of the night to find someone out walking in their pajamas outside. And what chance does one have to nurse the flu, when your partner can’t cope alone? Sick days do not exist for someone who is responsible for someone with dementia. The need for relatives of those in the dementia choir or others we talk to is not just a few hours of activity in the morning. They need to be able to have an evening alone or with friends, to go away for a few days to recharge. Recharge for efforts as a nurse and night watchman with a week of sleep each night. Unfortunately, we see that relief is often added to health centers designed for patients on the way between hospital and home, not for regular stays for people with dementia. They need a place designed for their pace and with content that makes it good to be there. Clean storage is not a relief when the next of kin know that the person they love is not doing well and comes home sicker from the relief than before they left. “For life we shall fight” Many of us get a lump in our throats when the Dementia Choir starts with the song “We live”: “For life we shall fight, as long as blood runs through us”. Dementia is a brutal disease and today a disease with no hope of recovery. Those affected are not given the opportunity to fight to recover. The only struggle on offer is the struggle to get help to make the days as good as possible, for as long as possible. And that fight is far too hard. Relatives often have to be a driving force against the aid system so that the sick person gets help. The result is that relatives are far too much alone and become exhausted themselves. We get two patients instead of one. There are over 100,000 people with dementia in Norway today. In the next decades, the number will double. For every person with dementia there are four close relatives. The health and care provision is far too weak. The differences too big. The readiness for growth absent. In the National Association for Public Health, we work to improve dementia care. “No one should face dementia alone” is one of our most important messages. We are looking for a cure for dementia. In the meantime, our society must take care of those affected, much better than today. Those whose lives are affected by dementia should experience care and follow-up around them. They must experience what is sung about in the Demenskoret’s Jan Runar’s favorite song: “You’ll never walk alone.”
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Spouse, nurse and night watchman – Statement
