Dementia

Dementia is the generic term for more than 50 different forms of dementia that affect the brain function (ICD-10, www.dimdi.de). The initial signs include particularly forgetfulness. Our younger and older narrators talk about the various limitations caused by dementia and how the disease leads to an extensive reorientation in life.

In addition to people with dementia, in this module caregivers who provide or have provided help over a long period of time talk about their experiences as well. Caregivers are the most important support. Dementia care is time-intensive and often affects not only one person but the family as whole. The caregivers take on functional activities every day, but also social tasks. They keep their partners in the community, advocate for them in medical and nursing treatment and in the social environment. As well, they are concerned about a suitable place for them to live.

Dementia care starts very early and develops towards “permanently physically being there”. Where the person with dementia should live, if or when she or he will transfer to a nursing home, is a concern for both the person with dementia and their relatives.

The narratives make the invisible sides of dementia visible. How is dementia experienced? How can there be seen opportunities to shape life despite the lack of cure? What does dementia care mean? What is difficult about it? Concrete concerns of the patients and caregivers in various fields of society are highlighted.

You can watch the excerpts from the interviews as videos, listen to them or read them as text.

This module is made possible by financial support from Alzheimer’s Switzerland.

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Advance care planning Diagnosis Impairments, restrictions and impacts Introduction
Learning to live with dementia Recommendations of the patients Therapeutic approaches What helps? - Patients' perspective What is dementia?
  • Credits

    This module is made possible by financial support from Alzheimer’s Switzerland.

    The following individuals supported the study (in alphabetical order):

    Dr. Stefanie Becker, Alzheimer Schweiz
    Karine Begey, Alzheimer Schweiz
    Dr. Ansgar Felbecker, Klinik für Neurologie, Kantonsspital St. Gallen
    Marianna Gawrysiak, psychologue-psychothérapeute, l’hôpital psychiatrique de Marsens
    Dr. med. Anton Gietl, Institut für Regenerative Medizin, Universität Zürich
    Dr. med. Ute Hock MAE
    Regula Kündig, Alzheimer St. Gallen / beider Appenzell
    Ombretta Moccetti, Alzheimer Ticino, Lugano
    Prof. Dr. phil. Andreas U. Monsch, Memory Clinic, Universitäre Altersmedizin FELIX PLATTER, Basel
    Rita Pezzati, Psicologa e psicoterpeuta FSP-SITCC, Balerna
    Catherine Poidevin-Girard, Structure de soin de jour Les Acacias, Martigny
    Dr. med. Erika Preisig, Lifecircle, Biel-Benken
    Katia Tunesi, cognitive-relational counsellor, Cadro
    Dr. Janine Weibel, Alzheimer Schweiz
    Bettina Zeugin, Alzheimer beider Basel

    Researchers

    Manya Hendriks

    Manya Hendriks is a postdoctoral researcher in bioethics, who studied medical anthropology and bioethics in the Netherlands and Belgium. During her studies she has worked with the Right-to-Die Association in the Netherlands and investigated the international debate on end-of-life and palliative care in the Netherlands, Oregon (United States) and Switzerland. Since 2014 she has been living in Switzerland where she conducted her PhD on the attitudes and values of parents, health care professionals, and Swiss society on end-of-life care for extremely premature infants. She joined the DIPEx team at the end of 2017 and coordinates the module about experiences with dementia.

    Andrea Radvanszky

    Andrea Radvanszky is sociologist and a qualitative researcher. She is responsible for the DIPEx Swiss Module Dementia. In her PhD « the social diagnosis of dementia » which she is currently finalizing at the University of Leipzig she focuses on patient-caregiver relationship and the impact of rule breaking behavior on identity and illness constructions. Her research addresses the empirically funded dementia care ethics which reference point is not the self-conscious and free individual but the social relationship.

    Advisory panel

  • Help & Support

    For more information on dementia, please visit Alzheimer’s Switzerland.

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