The picture of her mother on the wall reminds her of the goal: To make everyday life for relatives of those with dementia a little better. Ellen Johanne Svendsbø is associate professor at the Department of Health and Care Sciences at the University of Western Norway. This autumn, she and two colleagues at Stord are in the process of, among other things, mapping the stress level of relatives of people with a type of dementia known as lewylem dementia, or DLB. The project is part of a large study led by Helse Fonna, where they are testing the cough medicine ambroxol on people with Lewylem dementia. Around 1,500 people get the disease every year. But it is difficult to interpret the symptoms, and many relatives have no idea what they are facing. Lewy body dementia (DLB) The second most common type of dementia, after Alzheimer’s. Frames which are usually persons between 60 and 90 years of age. Memory loss, hallucinations and confusional states. Alternating between unclear and clear periods, which vary in length. Tremors and stiffness, reminiscent of symptoms of Parkinson’s disease. Spatial and orientation difficulties Failure in the ability to plan, solve problems, initiate and structure activities. Source: Ellen Johanne Svendsbø/HVL Brutal for the family Ellen Johanne Svendsbø’s father changed around the turn of the millennium. – I noticed that dad had tremors in one hand, and hid it under the table when he was eating. Ellen, who then worked as a nurse, thought it could be Parkinson’s. The father was sent for neurological examinations. – But then the hallucination came. He was confused, and wondered if there had been someone inside the house stealing things. These are classic signs of Lewylex dementia, but the father was never diagnosed. In 2009 he died. The disease was brutal, even for those closest to them. – The follow-up of relatives is very deficient. I can say that with my hand on my heart, both from experience and my own studies, says Svendsbø, who has also taken a doctorate in the field. Ellen Johanne Svendsbø together with her mother, who also gradually developed dementia. Photo: Privat Almost half a million relatives More than 100,000 people live with dementia in Norway today, and by 2050 this is expected to double. More than 400,000 people are close relatives of someone with dementia, and that number will also increase sharply. At the same time, fewer health workers are notified per patient. A great many relatives are frustrated and tired, and many become ill themselves, according to general secretary Mina Gerhardsen of the National Association for Public Health. – They never have time off. Many cannot sleep, and are on standby all day. They need more relief and help. There are no figures or research on how many relatives become ill themselves. But the survey by the researchers at Stord can provide valuable information about the stress level of relatives of dementia patients. – This study is very interesting, and will give us a little more concrete figures and results on how the tax actually is for a group of relatives, believes Gerhardsen. Ellen Johanne Svendsbø and Sarah Helene Aarestad are research colleagues at HVL in Stord. On the poster behind, the goal is written: “A little better everyday”. Photo: Eli Bjelland / news Measuring heart rate and stress level – I hope that we can find out that this can help them in everyday life, says researcher Sarah Helene Aarestad, who has a doctorate in psychology. The relatives in the study receive both a questionnaire and smartwatches, which will measure stress levels and sleep. At the same time, they must learn techniques to handle stress better. One of the techniques is touch therapy. – Many tough times Ellen Johanne Svendsbø has her mother as a source of inspiration for her research. After caring for her husband for almost ten years, she gradually developed signs of dementia herself. Ellen Johanne Svendsbø’s mother was known for her red-lacquered nails. A routine that continued even when she arrived at the nursing home. Photo: Privat The daughter witnessed that the mother also gradually disappeared. Last year she disappeared completely. – For me, who is a trained nurse and has worked with dementia, it was probably easier to handle and cope with the consequences of the disease than for others in the family. But there were many tough times. The study on relatives of people with Lewylex dementia has just started, and they still need more patients and relatives.
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Both her parents got dementia – Over 400,000 are close relatives – news Vestland
