In a world that see any signs of emotions as weakness, it is rare to see two strong, powerful women share, in front of a packed room, their stories about the disease slowly crippling their father. Indeed both Maria Furtwängler-Burda and Ursula von der Leyen’s (German Federal Minister of Labour and Social Affairs) fathers suffer from dementia caused by Alzheimers’ disease. Their daugthers accepted to talk about their experiences, fears, doubts and truths to a humbled audience at the DLD Women 2012 event.
As an introduction, the Prof. Dr. Andreas Kruse, a gerontology specialist and moderator of the session, listed the terrible facts of the disease; with the aging population, a larger and larger segment of it is at risk. Even more, symptoms tend to appear in patients younger than 65. If the first indications can be mere small cognitive impairments several decades before the diagnosis, the disease causes in the latest stages general disorientation, of people, of places etc. He underlined the cruel reality: there are no cures for Alzheimers’, although some medications can delay the incidence or reduce the symptoms and improve the quality of life. The cost of dementia, he said, reaches today up to 600 billion USD, a large part of it spent Western Europe and North America.
After the cold facts came the intimate testimonies, swinging from laughter to emotions in an instant. As a relative of someone suffering from dementia, Ursula von der Leyen recommended to not be to harsh on one-self: “don’t feel ashamed if you have a bad conscience, if you are fed up etc.” However, “if you invest time with your relative, try to spend a positive time with them.” Visiting people suffering from dementia with an open and positive mind changes the patient’s and the visit’s mood, the panel agreed. Sharing stories and experiences with other persons in the same situation can help to understand what it all means, to find the new normal, to feel less alone.
It is unsettling to see the people we love dwindle and change because of the disease. Sometimes this change can uncover unknown personal traits. “With dementia, I discovered the true nature of my father: a friendly old man,” told Ursula von der Leyen. For Maria Furtwängler-Burda, who admitted having had a difficult relationship with her father before his disease, she found him “a much much more gentle man” who thank her often for her visits. “It’s not only the loss, the sick also win something” said Leyen, “there is an inherent dignity inside them”. She remembered fondly how her father, a former politician, now “keeps mentioning two important things for him: the love for his wife and the importance of Europe in post-War Europe.”
Against dementia, the Dr Kruse suggested the motto should be “use it or lose it”. A sustained, regular, brain activity is key: one at risk should be playing cards, Scrabble, sudoku etc. An active lifestyle and low level of bad cholesterol have been found to reduce risk too. Emotional support and visits can also sustain and stimulate brain activity. However, Alzheimer’s disease concerns the society at large and not just the family of the sick. Leyen advocated for the rest of us to be more respectful: “it’s horrible to have a society say terrible things about dementia, we need objective discussions.” Furtwängler-Burda concurred: “we shouldn’t connect the worth of a person with his/her cognitive abilities.”
As Dr Kruse closed the session by playing some Bach on the piano, the beautiful notes echoed in the air as many promises for change in the way we, as a society, take care of our most vulnerable elders.