Anne (born 1962) grows up as the youngest child in a large family. She learns by imitation, attends a mainstream primary school, and takes part in all activities. At the age of 14, she has to leave school, as there are no further educational opportunities available in the Netherlands at that time. Her mother moves with her to France, where Anne learns to speak, read, and write French. Later, she works in a sheltered workshop.
After her mother’s death, Anne’s sister Meike assumes responsibility for her care. At the age of 39, Anne expresses a strong wish to live independently in Montélimar and falls in love with Jean Paul, who has Fragile X syndrome. With Meike’s support, they live together and continue working at the sheltered workshop. When full-time work becomes too demanding, Anne transitions to part-time employment.
Following Meike’s death, Anne’s brother Leendert takes over her care. Shortly thereafter, symptoms of Alzheimer’s disease emerge. The couple moves to a residential care home for people with intellectual disabilities that was established by the families. Familiar with the setting from previous holidays, they feel at home there. Anne and Jean Paul live together in the residence, each having their own room while sharing communal spaces.
This teaching material takes a closer look at Anne’s life story. The onset of Alzheimer’s disease marks the beginning of a process of change that has a profound impact on Anne and those close to her. An understanding of her personal history is essential for maintaining connection with her as the disease progresses.
The central theme of this teaching material is feeling lost. Dementia affects a person’s ability to know where they are and where they want or need to go. This is often one of the earliest signs of dementia and is commonly referred to as disorientation. . People with dementia also become confused in other areas, such as time and recognition. Disorientation in time and person is addressed in other case cases.
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There are different ways to respond when a person with dementia feels lost. One approach is to explain how things work or what is considered “the correct way.” This approach is known as reality orientation.Another approach is to acknowledge and empathize with the person’s experience and gently guide them to a safe place. This is known as validation.
What works and what does not can vary from person to person and from moment to moment; the situation is often unpredictable. As a professional or informal caregiver, you are the one who must find the most appropriate response.In doing so, you will frequently encounter questions that have ethical implications.
Would you like to learn more about reality orientation and validation? 'The caregiver’s companion to intellectual disabilities and dementia: 100 real-life questions and answers' will be released soon. For now, it is available in Dutch.
