Addressing the quality of life in dementia

Anthony is upset. He has been looking all over his appartement for his watch. In vain. “I knew it: it’s the housekeeper, she stole the watch!” Anthony is convinced that she is the culprit and fulminates against her.

When his daughter finds the watch in a place where he hadn’t looked, Anthony’s bad mood and accusations vanish instantly. In the film “The Father”, actor Anthony Hopkins’ portrayal of a pensioner with dementia is so masterful that many relatives of persons living with dementia have recognised their partner, their father or a friend in the scene with the watch.

34,000 diagnoses annually

Dementia is on the rise worldwide. And in our ageing society, the percentage of people whose brain function and abilities are impaired by this and similar conditions is increasing. According to federal government estimates, there are over 150,000 people living with dementia in Switzerland, and almost 34,000 people are diagnosed with the condition every year. The number of dementia cases is expected to rise to 315,000 by 2050.

How do people affected react to the fact that their mental strength is gradually and irretrievably dwindling? While some come to terms with the condition and try to make their lives as uplifting as possible while they still can, others deny any quality to an existence with progressive dementia.

Creating a “safe haven”

The three BFH researchers, Eva Birkenstock, Eva Soom Ammann and Regula Blaser, want to assess the individual quality of life of people with dementia. Moreover, they want to lay the foundations for the creation of a “safe haven”, as Eva Birkenstock puts it. This should allow patients and relatives to decide for themselves, calmly and without outside interference, how their lives with the condition can be organised in their best interests.

Despite a greater public awareness of dementia in our society, there is still a lot of stigma surrounding the condition, stresses Eva Birkenstock. “Dementia is associated with greater feelings of shame than heart disease and high blood pressure. It doesn't only affect the body, but the whole person and their identity.” According to Eva Birkenstock, the diagnosis triggers fear of losing one’s mental and cognitive abilities, and thus elementary characteristics of a one’s self-image.

Shape or adapt

How do people with dementia deal with the fear and the condition? According to the researcher, two basic traits can be distinguished: some people want to determine as far in advance as possible how they want to shape their lives, while others are constantly adapting to new life circumstances as they arise.

While people in the first group cannot imagine losing control over their own existence and are likely to consider assisted suicide right away, those in the second group are able to recognise a new form of quality of life in their changed circumstances.

Eva Birkenstock mentions the example of Walter Jens, a German professor who developed new interests as his dementia progressed. Formerly a person interested in the mind, in literature and in philosophy, he developed a deep connection with animals on a farm, experiencing unexpected joy in spending time with them and stroking them.

Developing a quality of life vs. ending life

With their project, the three researchers want to assess how those affected by dementia perceive their quality of life, but also how pronounced their desire for assisted suicide is. In addition to discussions with those affected by the condition, their relatives and specialists, they also plan to use participant observation with patients who are no longer able to express themselves in words. They hope to draw conclusions about the patients’ emotional state from their behaviour.

Through the interplay of various disciplines such as philosophy, psychology and social anthropology, which they represent, the researchers expect to gain comprehensive insights into how those affected by dementia assess and perceive their quality of life. They also expect to gain a deeper understanding of the reasons why someone can no longer find sufficient value in a life with dementia to desire carrying on with it.

Focus on personal freedom

The findings should form the basis for easily accessible, neutral advice services that can help those affected and their relatives to get as complete a picture as possible of: what living with dementia means in the short, medium and long term; what options they have to shape this life; and what they can do if they decide against it.

“Our aim is to focus on the personal freedom of the people affected,” summarises Eva Birkenstock, “so they can find out how dementia can still offer an acceptable quality of life, without having to choose between living with the condition by all means or ending life prematurely, should this existence not suit them."