Listening to music is one of Mrs. Reinhart's pleasures. From time to time, she attends concerts where she meets old acquaintances with whom she used to sing and play music in the choir. Although she no longer sings in the choir, she enjoys the contact.

Ascoltare la musica è una delle cose che la signora Reinhart preferisce. Di tanto in tanto partecipa a concerti dove incontra vecchie conoscenze, con le quali cantava e suonava nel coro. Anche se non canta più nel coro, le piace il contatto con loro.

La signora Reinhart ama il contatto con le vecchie conoscenze.

Écouter de la musique fait partie des passe-temps préférés de Madame Reinhart. Elle assiste de temps en temps à des concerts où elle retrouve d’anciennes connaissances avec lesquelles elle chantait et faisait de la musique dans la chorale. Elle ne chante plus aujourd’hui, mais apprécie toutefois le contact avec eux.

Madame Reinhart apprécie le contact avec de vieilles connaissances.

Musik zu hören zählt zu den Vorlieben von Frau Reinhart. Sie besucht ab und zu Konzerte, an denen sie alte Bekannte wiedertrifft, mit denen sie früher im Chor gesungen und musiziert hat. Zwar singt sie heute nicht mehr mit, doch der Kontakt zu ihnen bereitet ihr Freude.

I: Und Sie hören gerne auch Musik? Das machen Sie gerne?

R: Musik habe ich sehr gerne, ja.

I: Ja?

R: Ich habe selber einmal gespielt und äh im X [Chorname] war ich. Und äh die haben jetzt noch nicht vor so langem wieder gespielt. Äh es war wunderschön. Und äh alle haben sich gefreut, wenn sie mich gesehen haben, ja, hallo S [Name], ja, wie geht es dir denn und sie haben gewusst, dass es mir nicht so gut geht. Und äh ja, das ist herzig. Also und dann tun wir eben essen äh trinken, essen und ähm dann weiss ich manchmal nicht, was ich anziehen soll. [lacht] Dass es ein bisschen schön ist. Ich habe ganze eine dünne, ganz extrem dünne Haut.

I: Mhm.

R: Ja. Leider. [lächelt] Aber es tut nicht weh, also ich kann machen, was ich will. [lächelt]

Der Kontakt zu alten Bekannten bereitet Frau Reinhart Freude.

Contact with old acquaintances gives Mrs. Reinhart pleasure.

Relatives give support, solidarity, and the strength to go on. They can give restore feelings of security (see "The feeling of losing security"). Relatives play an important role ensuring inclusion in everyday life and seeing that those close to them "remain in the community" (see "What does dementia care by relatives mean"). Friends can have equal importance to family. Friends provide community and help to keep life going as usual. One person describes how important the relationship with friends is to her because respond to the limitations of dementia in a different way than family members do.

Relatives, friends, being in community and relationships

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 funding from Alzheimer Switzerland.

163-10D_2020_Finanzielle_Ansprueche.pdf

“Demenza” è il termine generico per più di 50 diverse forme di demenza che colpiscono la funzione del cervello (ICD-10, www.dimdi.de). I segni iniziali includono in particolare il dimenticarsi le cose. I nostri narratori più giovani e più anziani parlano delle varie limitazioni causate dalla demenza, e di come la malattia porti a un ampio riorientamento nella vita.

Oltre alle persone affette da demenza, in questo modulo anche i “caregiver”, ovvero le persone che forniscono o hanno fornito aiuto per un lungo periodo di tempo parlano delle loro esperienze. I caregiver sono il supporto più importante. La cura della demenza richiede molto tempo e spesso non riguarda solo una persona ma l'intera famiglia. I caregiver si occupano di attività funzionali ogni giorno, ma anche di compiti sociali. Mantengono i loro partner nella comunità, li difendono nel trattamento medico e infermieristico e nell'ambiente sociale. Inoltre, si preoccupano di un posto adatto a loro per vivere.

La cura della demenza inizia molto presto e si sviluppa verso la "presenza fisica permanente". Dove la persona con demenza dovrebbe vivere, se o quando si trasferirà in una casa di cura, è una preoccupazione sia per la persona con demenza che per i suoi parenti.

Le narrazioni rendono visibili i lati invisibili della demenza. Come viene vissuta la demenza? Come possono essere viste le opportunità di modellare la vita nonostante la mancanza di una cura? Cosa significa curare la demenza? Cosa c'è di difficile? Vengono evidenziate le preoccupazioni concrete dei pazienti e dei caregiver in vari campi della vita sociale.

Puoi guardare gli estratti delle interviste come video, ascoltarli o leggerli come testo.

Questo modulo è reso possibile grazie al finanziamento di Alzheimer Svizzera.

Demenza

La démence est le terme générique pour plus de 50 formes différentes de démence qui affectent les fonctions cérébrales (CIM-10, www.dimdi.de). Les premiers signes sont principalement des pertes de mémoire. Les personnes interrogées, jeunes et moins jeunes, parlent des diverses limitations provoquées par la démence et de la façon dont la maladie entraîne une réorientation complète de la vie.

Outre les personnes atteintes de démence, leurs proches qui apportent ou ont apporté de l'aide pendant une longue période parlent également de leur expérience. Ils constituent le soutien le plus important. Les soins aux personnes atteintes de démence demandent beaucoup de temps et touchent souvent non seulement une personne, mais toute la famille. Les proches prennent en charge le quotidien fonctionnel, ainsi que les tâches sociales. Ils maintiennent leurs proches dans la communauté, les représentent dans le cadre des traitements médicaux et infirmiers et dans l'environnement social, et se préoccupent de leur trouver un lieu de vie approprié.

La prise en charge d’une personne démente commence très tôt et évolue vers des soins permanents. Le lieu de résidence de la personne atteinte de démence, la décision et le moment de la faire entrer dans une maison de soins préoccupent à la fois les malades et leurs proches.

Les récits rendent visible le côté invisible de la démence. Comment la démence est-elle vécue ? Comment peut-on envisager les possibilités d’organiser la vie en l’absence de traitement curatif ? Quel est le sens de soigner une personne démente ? Qu'est-ce qui est difficile ? Les préoccupations des malades et de leurs proches sont mises en évidence dans divers domaines de la société.

Vous pouvez regarder les extraits des interviews en vidéo, les écouter ou les lire sous forme de textes.

Ce module a été rendu possible grâce au soutien d'Alzheimer Suisse.

Démence

Demenz ist der Oberbegriff für mehr als 50 verschiedene Demenzformen, welche die Funktion des Gehirns beeinträchtigen (ICD-10, www.dimdi.de). Zu den anfänglichen Zeichen zählt vor allem die Vergesslichkeit. Unsere jüngeren und älteren Erzählerinnen und Erzähler berichten über die verschiedenen Einschränkungen durch Demenz und wie die Krankheit zu einer umfassenden Umorientierung im Leben führt.

Neben Personen mit einer Demenz erzählen in diesem Modul auch die Angehörigen, die ihnen über lange Zeit Hilfe leisten oder geleistet haben und die wichtigste Stütze sind. Demenzpflege ist zeitintensiv und betrifft oft nicht nur eine Person, sondern die ganze Familie. Angehörige übernehmen täglich funktionelle Tätigkeiten, aber auch soziale Aufgaben. Sie halten ihre Nächsten in der Gemeinschaft, setzen sich in der medizinisch-pflegerischen Behandlung und im sozialen Umfeld für sie ein und sind um einen geeigneten Lebensort für sie besorgt.

Demenzpflege beginnt sehr früh und entwickelt sich in Richtung Dauerbetreuung. Wo die demente Person wohnen soll, ob und wann sie in ein Pflegeheim übertritt, beschäftigt sowohl die Erkrankten als auch die Angehörigen.

Die Erzählungen machen die unsichtbare Seite der Demenz sichtbar. Wie wird Demenz erlebt? Wie kann es trotz fehlenden Heilungschancen gelingen, Gestaltungsmöglichkeiten zu sehen? Was heisst Demenzpflege? Was ist das Schwierige daran? Es werden konkrete Anliegen der Erkrankten und Angehörigen in verschiedenen gesellschaftlichen Bereichen aufgezeigt.

Die Ausschnitte aus den Erzählungen können Sie sich als Videos anschauen, anhören oder als Text lesen.

Dieses Modul wird durch Förderung von Alzheimer Schweiz ermöglicht.

Demenz

Dementia

Andrea

For Mrs. Reinhart, it is important that she can live at home or "live normally", as she says. She rejects the nursing home.

For Mrs. Reinhart, it is important that she can live at home, or "live normally," as she says. She rejects the nursing home.

It is rare for people with dementia to organize institutional care for themselves. Of all the interviewees, only one relative reported that her mother with dementia had registered herself in a nursing home. In one other case, a couple made a joint decision to move into a retirement home together after one of the members in the couple received a diagnosis of dementia.
People with dementia often associate nursing homes with negative changes, such as increased social isolation and  greater loss of freedom, so they tend to be against the idea of a nursing home. They tend to find it difficult to come to terms with the idea of transitioning to a nursing home, and so the move is often delayed. For relatives who need an alternative to providing care at home, this resistance is difficult. Some relatives themselves also express reservations about what a nursing home introduces.
A major problem is that relatives lack the information they feel they need to assess the quality of a nursing home. Long waiting times for placement in the nursing home or excessive distances between nursing home and the relatives' home introduce additional challenges. Moreover, nursing home care raises the question of cost.

Considering the option of a nursing home

Mr. Reinhart supports his mother daily and is concerned about a positive mood. Spreading a cheerful mood and being friendly with each other contributes a lot to Mrs. Reinhart's well-being.

Mr. Reinhart is concerned about a positive mood, which contributes a lot to Mrs Reinhart's well-being.

Going for walks in nature is very important for Mrs. Reinhart. When accompanied, she goes for walks in the forest. She is happy when she encounters animals.

Going for a walk in nature is very important for Mrs. Reinhart.

Being active having outdoor recreation contributes a lot to well-being. This can be a walk, a bicycle ride, a hike or a visit to friends. Exercise means actively supporting one's health, and engaging in what remains possible as long has the health status allows for it. Relatives attach great importance to this aspect. For example, they advocate for the freedom of movement of their loved ones in care institutions (see "Four levels of communication of relatives"). However, several people with illnesses also mentioned tension with their relatives when their sense of what is possible is perceived differently (see "Adaptation processes").

Being in motion

Mrs. Reinhart expresses with tender gratitude that she can rely on her sons. Through the support of Mr. Reinhart, she can remain living at home.

Frau Reinhart

Contact with old acquaintances gives Mrs. Reinhart pleasure.

Video Interview

Related experiences

Other experiences by Frau Reinhart

Frau Reinhart