Being able to enjoy life as a pensioner without worries is denied to Mr. Bordoni with the diagnosis. The diagnosis hits him hard. He takes "happy pills" to dampen his despair, as his wife tells us.

A causa della diagnosi il signor Bordoni non si gode la vita da pensionato. La diagnosi lo colpisce duramente. Come racconta sua moglie, prende una "pastiglietta per la felicità" per placare la sua disperazione.

I: E come ha sperimentato il suo marito la sua diagnosi?

B: Come l’ha preso lui? 

I: Sì, come l’ha preso lui. 

B: Mah lui diciamo riceve una pastiglietta per la felicità come dice la sua sorella e lo tiene su di morale. Perché all’inizio sì era un po’ giù di corda e però con questa pastiglietta la prende un po’ come l’avete visto voi abbastanza con sofisticazione, no come si dice?

Marito: Uno arriva alla pensione, vuole godersi un po’ la vita e ga salta l’Alzheimer… Almeno avere la…

A causa della diagnosi il signor Bordoni non si gode la pensione.

Le diagnostic empêche Monsieur Bordoni de profiter pleinement de sa vie de retraité. Le diagnostic l’a durement touché. Il prend des « pilules du bonheur » pour atténuer son désespoir, comme le raconte son épouse.

Le diagnostic empêche Monsieur Bordoni de profiter pleinement de sa vie de retraité.

Das Leben als Rentner unbeschwert geniessen zu können, wird Herrn Bordoni mit der Diagnose verwehrt. Die Diagnose trifft ihn schwer. Er nimmt «Glückspillen», um seine Verzweiflung zu dämpfen, wie seine Ehefrau erzählt.

Das Leben als Rentner unbeschwert geniessen zu können, wird Herrn Bordoni mit der Diagnose verwehrt.

Being able to enjoy life as a pensioner without worries is denied to Mr. Bordoni with the diagnosis.

The diagnosis has drastic consequences for everyday life of the person with the disease and their relatives. Life has to be reorganized, and the future can no longer be shaped as desired. The consequences of dementia can be experienced or the present or feared as anticipatory events in the future. Because Alzheimer's disease cannot yet be treated, it is difficult to maintain hope.

Consequences of the diagnosis for life

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

Mrs. Bordoni mentions the physical fitness of her husband. His laboratory values are good, she says, and his body functions without any problems. His physical health contrasts with the severity of the disease, the husband adds.

Mrs. Bordoni mentions her husband's physical fitness.

Unlike other chronic diseases, neither physical infirmities nor pain are central to dementia in the beginning. Those whose disease is not yet far advanced describe that many activities are still possible, including being out and about and pursuing occupations. Younger dementia patients in particular describe this, although older people with dementia also emphasize that they can still do many things on their own. Relatives who refer to later stages of the disease in the interviews, on the other hand, highlight physical impairments and restrictions in the mobility of their loved ones, tending to describe a general slowing down, weakness, increasing disorientation, and mental absence. These relatives wonder what their counterpart perceives of the disease.

Mental and physical symptoms in the disease course of dementia

Mrs. Bordoni has to think constantly and make sure that her husband doesn't forget anything. She is also concerned about his safety, which in turn is a problem for him. He thinks that his wife is running after him. While she wants to avert dangers anticipatively, he sees no dangers.

While Mrs. Bordoni wants to avoid dangers proactively, Mr. Bordoni does not see any dangers.

Transitioning the existing, known relationship into a care relationship is a difficult process. Self-determination and care are often in conflict. People who suffer from dementia lose their capacity, yet self-determined action is often still very important for them (see "Learning to live with dementia"). This can lead to conflicts with relatives, who take over tasks and are concerned about safety. For both sides, negotiating self-determination, which is especially necessary in the early stages of dementia but also later, is a daunting undertaking. Certain actions and efforts to plan are made difficult or impossible. In some cases, relatives seek outside help, such as a health professional, to introduce a particular new care need. With progressive loss of competence to act, the evolution of the relationship into one of care-taking is inevitable.

Negotiating self-determination

Mrs. Bordoni says that she constantly has to stay on top of her husband ("devo stargli dietro") because things are forgotten. For example, she reminds her husband to take a shower.

Mrs. Bordoni says that she constantly has to stay on top of her husband because things are forgotten.

A variety of functional and social tasks can be deduced from the caregivers' stories:

1. care: dementia leads to helplessness. The condition of the person with dementia deteriorates increasingly. At a certain point, he or she can no longer live alone and is dependent on permanent care. Where the person with dementia lives and how care should be organized is a central aspect of dementia care (see "Home or nursing home?").
2. everyday tasks: Dementia care is especially time-consuming because many tasks must be performed that the person previously did for themselves, such as personal hygiene, cooking, keeping appointments, household work, administration, financial matters, etc. Already in the initial phase, the relatives have to take over functional tasks of everyday life, even so the patient might still be fairly competent. Relatives constantly adapt their support by reassessing the status of the patient, determining what is still possible, and trying to figure out why the patient may be restless or stressed.
3. decisions: Many decisions that a person previously made for themselves are transferred to their relatives, from how they organize their daily life to decisions about medical treatment (see "Health care"). The relatives thus take on an active role. Sometimes the relatives have to make decisions without knowing whether their decision reflects the preferences of the ill person or is in their best interest.
4. relationship: Another central aspect of dementia care concerns adapting the relationship between the loved ones, which has to be renegotiated on the basis of the changed cognitive possibilities of the ill person (see "Adjustment processes"). This task is specific to dementia and does not arise in a comparable way in the context of other chronic disease situations. The upheavals in the familiar relationship often lead to confrontations and place a heavy emotional burden on both sides. 
5. communication: The relatives are the mouthpiece for their loved ones. Relatives take over much communication, represent the ill person in various social contexts, and advocate for them where they can no longer do so themselves. The relatives also change the way they communicate with their loved ones. They adapt their behavior (see "Four levels of communication by caregivers").
6. keeping in the community: Relatives are often concerned about social contact for the person with dementia (see "Adaptation processes"). Loss of competence, the feeling of insecurity, fears, and mental stress lead to social withdrawal for the ill person. Loneliness is an important concern for relatives too: not only do they lose their loved ones and that familiar relationship, they often have to put their lives on hold to provide dementia care and limit contact with others at a time when they are especially emotionally burdened.

Functional and social tasks

Mrs. Bordoni talks about how she became increasingly convinced that there was something wrong with her husband.

Mrs. Bordoni became increasingly convinced that there was something wrong with her husband.

Those affected with dementia perceive that something is wrong. However, they often find it difficult to clearly classify their own state of mind. Are the memory lapses due to ageing or a stressful time in life? Is there really something "wrong" or is it just a temporary problem? Should something be done about it?
Perception may differ from one person to another. Family members, friends, and colleagues play an important role in identifying the first signs of dementia. They are often the ones who point out changes or abnormalities and participate in the decision to consult a doctor. Accordingly, there is significant variation in the time preceding the decision to consult a doctor.

Classifying changes - the role of the others

Mrs. Bordoni was restless when she had to leave her husband alone during the day while she worked. Since she has been working very little, the situation has eased for her.

Mrs. Bordoni was restless when she had to leave her husband alone during the day while she worked.

The symptoms of dementia change over the course of the disease, which is why dementia care requires constant readjustment. There are two distinctive stages of dementia care that depend on the degree of independence of the sufferer. In one phase, the ill person is still active and can participate in everyday life. This phase, in which he or she lives at home and can spend time alone, can last for a long time, often several years. However, the relatives provide extensive support even in this phase because the ill person can no longer manage certain basic tasks that they used to be able to manage. In the other phase, the dementia patients can no longer be alone; they are dependent on nearly permanent care, even at night.

Increasing care hours

Keeping in mind her husband's current quality of life, Mrs. Bordoni feels she should be satisfied with how it is now.

Anticipating the future is often a source of worry for those who are ill. Limiting plans and spending less time picturing the future helps patients to deal with the expectation that their state of health will deteriorate and that their scope of action will be further restricted. Instead of thinking about what is to come, what counts is the here and now, taking the day as it is, and appreciating what is still possible. However, some also think that it is important to take time to consider what is coming.

Frau Bordoni

Being able to enjoy life as a pensioner without worries is denied to Mr. Bordoni with the diagnosis.

Related experiences

Other experiences by Frau Bordoni

Frau Bordoni