Dr. Helga Schloffer in her workshop “Understanding Dementia”
“The generation of the grandchildren needs age-appropriate information about the clinical picture of dementia and about the correct way to deal with their afflicted grandparents.” This conclusion is from one of the few studies that engage in how family care affects the children and youth (Metzen 2011).
Dementia is a disease that does not only affect the individual, but the entire family. Family members take on new roles and tasks as a result of the new situation, which require all resources and do not exclude the children and youth in the family.
Eighty percent of people with dementia are cared for at home, half of these by children and children-in-law. All family members, even when they don’t live in the same household, have to learn how to deal with the changes in thought and behavior, as well as the everyday abilities of the afflicted.
When there is more information distributed about the process of the changes that dementia brings, and a greater response from the family members, a higher quality of life for everyone can be ensured and morestress-related illnesses can be avoided; family members who care for their sick relatives carry a high risk of becoming sick themselves; the mortality rate for them is higher.
For the dependents, it is about the realistic estimate of their own resources; they must also find time to care for themselves and to balance the daily pressures; this goes for all family members and not only for those who provide the primary care.
Even if young people in the family aren’t currently dealing with dementia in their personal lives, they could certainly have to deal with it in the future. For example, it could become important for them to be able to recognize whether the changes in their own parents are a sign of old age or something more serious. In addition, it could be helpful in case of emergency to know, for example, how to appropriately react to aggressive or similarly distressing behavior.
The possibility of prevention is also worth mentioning, as some lifestyle factors have also been found to have an effect on the development of Alzheimer’s disease.
Goals of the Workshop
To understand the changes over the course of dementia
To gather knowledge about these changes as they relate to perception, processing information, ability to think, behavior and coping with everyday life
To understand a broader range of patient behaviors and caretaker responses to Alzheimer’s patients
To raise awareness about appropriate ways to interact with disabled people
To foster respect and appreciation for the elderly, regardless of mental or physical condition
To apply this knowledge about the disease to everyday lifein case someone in the family suffers from the disease
To have the ability to support other family members
To create awareness of “Quality of Life despite Dementia”
To spread knowledge of the possibilities for prevention
Elements:
1. Input: Four school periods (50 minutes each)
2. Learning about the life of people in a nursing home: Advent celebration in the nursing home, Haus der Senioren in Kuchl
3. Discussion and reflection of the experiences
2. Learning about the life of people in a nursing home: Advent celebration in the nursing home, Haus der Senioren in Kuchl
3. Discussion and reflection of the experiences
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Methodological Framework: be active – learn yourself instead of being taught – learn by doing (emotionally and physically).
Methodological Framework: be active – learn yourself instead of being taught – learn by doing (emotionally and physically).
Combination of: individual work, teamwork, self-reflection, personal experience, PowerPoint presentations.
Framework: story line method.
INTRODUCTION
At the beginning of our workshop, we had to find out how many people already knew about the topic of dementia. The students wrote down the first five thoughts about dementia that came into their minds. The answers were exchanged (anonymously) and then summarized on a blackboard.
“Age” and “Loss of memory” were at the top of the list of associations, followed by “incurable,” “care” and “Alzheimer.“
A 15-minute film, in which family members and experts had the chance to speak, conveyed the impressions of individual struggles with the disease and the changes within a family as a result.
In a presentation, we learned about the latest figures (frequency, outlook, etc.) and the changes to the brain of an Alzheimer’s patient.
MAIN SECTION
In teams, we “invented” a family that was supposed to be led by the students through the three stages of dementia.
Each generation was represented: an elderly lady, her son and her granddaughter.
The people were represented on a poster. Their life histories were written and were so filled with emotion that they could cause people to care about them personally. A reality was simulated and a story served as a common thread. The teams had to communicate with each other in order to make the three biographies naturally fit together.
The social surroundings were designated. In addition to family members, there were also people such as the postman, the saleswoman, etc. The distance of the different people to the elderly lady was illustrated spatially and represented how close of a relationship they had to her before she started showing signs of Alzheimer’s.
The changes at the beginning of the disease were packed into a narrative and summarized on flash cards stuck to a poster; a timeline showed the development of the symptoms.
To get an idea of what it is like to be tested for dementia, the students took the Mini-Mental State Examination in pairs.
In the end, the teams submitted their ideas for how a person in the first stage of Alzheimer’s disease can best communicate, what they should avoid, etc. These ideas were attached to a poster.
The changes in the social structure of an Alzheimer’s patient were also represented.
The elderly lady and her family were led through the second stage of the disease, using the same approach as in the first stage.
The third stage, which is characterized by an increase in loss of speech, began with an exercise on mindfulness, in which communication between partners could only be acted out through body language.
From a variety of images, a few were chosen that showed situations, as well as interventions, that could increase the quality of life even for people with severe dementia (animals, music, food, etc.)
FINAL PHASE
In the final phase, the findings of the workshop were summarized and the visit to the nursing home was specifically discussed.
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Goals:
To convey that people whose behavior changes as a result of dementia are still “people” with needs, such as: receiving affection and attention, to feel a sense of belonging, to be treated as an equal.
To be liberated from the myths of dementia
To experience the normalcy of people with dementia
To experience the everyday life of a nursing home not as a final destination, but as a place of joy
To find a reason for a school visit to a nursing home, a meeting of the Carolers of Ursprung was initiated.
Then the students were allowed to meet a resident of their choice and have a conversation; the residents of the nursing home were healthy elderly people and people in the first and second stages of dementia, as well as stroke victims.
The residents were thankful for the offer to speak with them and partly laid out their life stories before the patient listeners.
Conclusion: During the conversation, it is important to be an active and unbiased listener, show appreciation and respect and have fun.
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The discussion afterwards served as a time to reflect on the experiences and added value of knowledge gained from being with the old people.
The discussion afterwards served as a time to reflect on the experiences and added value of knowledge gained from being with the old people.
Biblography: Metzen, P. (2011) Die Enkelgeneration in der familialen Pflege bei Demenz, Z. Gerontol Geriat 6, 397-404.