At present, over 110 000 people in Switzerland suffer from Alzheimer’s disease or other forms of dementia. The majority of these are women, who are affected by dementia more frequently due to their longer life expectancy. Over half of these people live at home and are cared for by family members or home care service providers such as Spitex. The rest are taken care of in special sections in retirement or care homes, together with other elderly people who can no longer live without assistance.
As the disease progresses, patients can be a danger to both themselves and others. They may become aggressive, can no longer perform the simplest tasks or cannot find their way back home on their own anymore. In this case, sheltered living facilities such as the garden ward at the Adullam are the last hope for many patients – not to mention their overburdened relatives. This was also the case for 84-year-old Ruth Lindemann, who was admitted to the Adullam around two years ago after disappearing suddenly during a stay in hospital.
“She simply got up and left the hospital, and the police only found her hours later at Basel SBB station,” remembers her daughter Katrin Marelli. This was the event that ultimately convinced the family to have her admitted to a care home in 2011, years after the first signs of her illness became noticeable: She repeatedly forgot names, called her daughter anxiously or didn’t dress herself properly. This was unusual for a homemaker and mother who, for decades, had run the household impeccably.
“One trait of those with advanced dementia is a tendency to wander off regularly, apparent in around a quarter of patients,” explains Elke Hildebrand, Deputy Residential Manager of the garden ward at the Adullam. “When this happens – or when they become mentally unstable – family members are usually no longer able to care for the person. Sheltered, round-the-clock care is required in this case, including everything from monitoring to medication and personal hygiene.”
For relatives, this care-intensive disease can become torturous. The partner or parent not only gradually loses the memories that once connected them – their personality changes as well, resulting in an irritating alienation that destroys much of the erstwhile intimate bond. Many relatives have huge difficulties coping with this development. It is even more difficult to bear when moments of lucidity keep occurring and the patient speaks and acts clearly as before, thus giving the impression that the disease can be stopped.
“The most difficult part of our care work – especially with people suffering from serious dementia – are never the patients themselves,” explains Elke Hildebrand. “Rather, it is the relatives, who fight to come to terms with the situation and usually spend years struggling until they finally accept the disease. It is our job to talk to them and support them as well.”
Katrin Marelli, who visits her mother in the Adullam at least once a week, nods in confirmation. Her 91-year-old father, who came to the garden ward every day until only recently, rarely visits anymore. “It became increasingly difficult for him to come to terms with the disease, and he also lost his love for life because of it,” she explains. “I see things differently. I have learned to accept the disease as part of old age, even though it is not always easy.”
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An insidious process
