With different eyes

To Giusy and Giorgio, who made us see the world through different eyes.

Disordine!

WS22/23 - PROJECT VC-1B

Faculty of Design and Art - Unibz

Introduction

Trotta cavallino

Oggi cosa facciamo?

La stufetta è qui Mi piace stare con te L’abitudine di scappare Non trovo la maglietta viola Che fame Lì, vicino ai peperoni La lista della spesa

L’ordine nel disordine Credits

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Alzheimer’s disease (AD) is the most common form of dementia, a neurodegenerative disease of nerve cells, especially those that regulate learning and memory processes. Most common in older people, it can develop in different forms and have different characteristics. Currently, despite much ongoing research, drug therapies for Alzheimer’s -and other forms of dementia- are still unsatisfactory. With the drugs available, modest improvements in symptoms can be achieved that last for a variable length of time, leading to a slowdown in the evolution of the clinical picture of Alzheimer’s disease. In many cases, non-pharmacological therapies such as cognitive stimulation, reorientation and reminiscence therapy, music therapy, physical exercise, but also other techniques to be customised according to the stage of the disease, are useful. It is wrong to say that ‘there is nothing to be done’; on the contrary, there is a lot to be done. At present, we cannot count on a cure, but by changing our perspective and accepting the disease, valuing

the person with dementia, we can propose to live seeking the greatest possible well-being.

The exhibition deals with the subject of Alzheimer’s disease and some of what can be useful tips for those involved in the patient’s life. It is intended to give practical and moral support to people who experience this situation every day. The aim is to make people aware of the stages through which the disease can pass and, in particular, how to deal with some of the difficulties that can result. This exhibition thus becomes a concrete incentive to support family members and friends with the right information, stories and photographs that make people think about the subject. The research was based on the study of 15 practical cards, offered by the ministry, on how to behave when faced with a situation of caring for an Alzheimer’s patient. From these 15 cards, the 10 main topics were extracted, which both Sofia and Annagiulia -curators of the exhibition- experienced firsthand, with their aunt Giusy and grandfather Giorgio.

Music therapy is an approach that can be used as a non-verbal communication tool using music and sound. Music enables interpersonal communication through mediation. Familiar music may have in it elements of predictability, duque of probable relaxation; conversely, music that has never been heard, being less predictable, may accentuate restlessness. It is important to always pay attention to the volume of the sound: if it is too loud, it may cause the opposite effect to the one desired.

“Op, op, trotta cavallino” was that simple and playful refrain from the 1930s that we used to sing to Grandpa Giorgio to calm him down in the most difficult moments of his illness. Sometimes, Grandpa would look at us disoriented and confused, not knowing who we were or where he was, and it was in these moments that his favourite singer, Natalino Otto, would come to the rescue. Grandpa Giorgio never loved music, but the music of his youth particularly relaxed him. He took his hand to it and was able to bring back the lyrics of those songs that, in the end, became his anchor to the memories of his past life.

Fundamental when supporting a person with Alzheimer’s disease is the organisation of the day. Wandering without purpose causes the person to become agitated. One has to plan activities, making sure that it is possible for the patient to do everything that is pleasant to do. Being part of an activity gives dignity and self-esteem. It becomes necessary to overlook the person’s inabilities, he/she must be convinced that he/she can always help you.

The person may change over time, lose some abilities and retain others, as far as possible let him/her do it. The way of performing an activity counts more than the end result.

Aunt Giusy always had to do something, she couldn’t sit still. She couldn’t be left without an activity to do. My Aunt Giusy liked to read the newspaper. She was always reading it. One day I turned around for a moment - really a few moments - and the damage was done: Aunt Giusy had spilled the coffee. Agitated, in an attempt to repair the damage, the newspaper had turned into a cloth and so she rubbed it all over the table.

Had she by any chance forgotten her beloved newspaper? It didn’t matter, I thanked her anyway for helping me.

When caring for an Alzheimer’s patient, it becomes important to consider the person’s surroundings. Since the person is often no longer able to say openly what bothers, upsets or frightens him, it is up to us to protect him from all those stimuli that can be harmful. It therefore becomes essential to be good observers of the sick person’s environment, to make it as safe as possible in relation to the new demands being made on him or her.

For the person, even the simplest appliances can be dangerous. To reduce the risk, leave everyday objects in view, eliminating from view those that he or she is no longer able to recognise.

Aunt Giusy sometimes forgot how the appliances worked. We were always afraid she would hurt herself so we took the blender, microwave and kettle out of the kitchen and turned off the gas, obviously without telling her. We could be a bit more relaxed. Nevertheless, one day we couldn’t find the toaster. Aunt Giusy showed us where to find it: ‘The toaster is here’.

If we are with someone it is impossible not to communicate. Even if we remain silent we say a lot to each other. With illness, both the way a person expresses himself and his ability to understand others inevitably changes. Communicating, however, is more than just speaking and listening: it involves gestures, tone of voice, facial expressions, gaze, contact with an arm or a hand. Where speech can no longer reach, one can often rely on the importance of a small gesture to express what cannot be said verbally.

Aunt Giusy found it increasingly difficult to express herself, and had more and more difficulty understanding what others were saying. She could not find the right words, repeated the same things and lost the thread of speech. She was back to speaking her native dialect and used a lot of swear words. She gesticulated a lot. It took a lot of patience and understanding, we had to make her feel that we were listening to her and trying to understand her. We would look her in the eyes to let her know we were paying attention. She needed time to express herself but we always encouraged her.

One of the biggest concerns for those caring for a person with Alzheimer’s disease is that they might wander off, get lost and endanger themselves. It is important to prevent and limit running away. Make the home safe but without making the person feel imprisoned. Identify what may be dangers in the environment and put yourself in the person’s shoes: is it easy to get out of the garage or the kitchen? If you hide a place, perhaps by covering the door with a curtain, there must be no visible signs - e.g. padlocksotherwise the person will feel that he/she has been deprived of his/her freedom.

Aunt Giusy and Grandpa Giorgio had a habit of running away. They no longer recognised the place where they lived, so they felt lost, in a new and foreign environment. Perhaps they wanted to repeat old habits, something that was part of their old daily routine. They both suffered from the ‘dusk crisis’: they tended to want to return to their old homes in the evening, homes that no longer existed. To prevent their escape, we had replaced the drawer where the various keys used to be with a large chest full of safe things they liked. They would rummage through it for hours.

A person with Alzheimer’s disease will gradually show greater difficulty in taking care of himself. At first she will appear quite selfsufficient but her carer will become increasingly responsible for her personal care. Many patients adapt easily to the new state of affairs, and are almost ‘rocked’ at the time of cleaning, but for others it can be very difficult to accept, because they see this situation as a loss of independence and privacy.

It may help to take care of oneself close to the sick person. Should the sick person begin to show resistance to washing, combing his or her hair or shaving, it can be of great help to do the same things together, encouraging dignity.

For aunt Giusy, choosing and wearing clothes was often difficult and frustrating: she could not remember how to dress and felt overwhelmed by having to choose. We would give her the combinations already made, so that she would not feel pressurised. If there was a pile of clothes with similar colours - pink, red, purple - Aunt Giusy couldn’t find the purple shirt, she couldn’t distinguish it.

When helping a person to eat, make this time comfortable by serving meals in a quiet environment, away from possible distractions that cause stress. It is equally important to choose simple tableware: single-coloured plates that stand out well from the tablecloth, cutlery that is strictly necessary and nothing that is purely decorative. This will avoid confusing the sick person. It is not easy, but it would be good to allow the sick person to eat at the times and in the manner that the illness may have determined.

During Aunt Giusy’s meals I kept the table setting simple, using only cutlery and necessary items. She was often unable to decide between the foods on her plate, so I only served her 1 or 2 types at a time: first the mashed potatoes, which she liked so much, and then the meat. I used to encourage my aunt to eat on her own, but each time something strange happened. One evening I went to fill two glasses of water; not even time to get back to the table and while Aunt Giusy was chatting happily with me she was trying to eat the soup with her fork. She didn’t seem particularly upset that she couldn’t do it, but I handed her the spoon without a word, and she took it.

During the illness the patient’s recognition capacity occurs in different ways depending on the stage of development. Initially there is physiognomic recognition (facial expression and facial expressions), then there is recognition of familiarity (distinction between familiar and unfamiliar) and then there is analytical recognition with face-name-role association (function). According to the retrogenesis model, during disease progression the facename-function association ability is lost first. That for the familiarity of faces seems to be very resistant to damage with possible new ‘familiarity learning’, and finally that for facial expressions may remain affected.

Grandpa Giorgio and Aunt Giusy sometimes forgot where everyday objects should be stored. For them, it was sometimes normal for glasses to be put in the microwave. We never understood why, but in their minds it was right. One day I asked Aunt Giuy where she put her hairbrush and she could not answer me. I opened the fridge and there, next to the peppers, I found my aunt’s brushes. I didn’t ask questions, I took them and returned them to the bathroom. I realised that for her there would never be anything wrong with doing this.

It is important for those caring for a person with Alzheimer’s disease to be able to make use of the remaining contents of the patient’s mind. One has to learn to consider as ‘talent’ the abilities that are left in the individual. We must not show our bewilderment in front of something we cannot understand. Alzheimer’s is a horrible disease that strips the brain, little by little, of all its capacities, reducing the adult to the inability and inexperience of a newborn child. They must be made to feel important for what they have become.

Grandpa Giorgio often wrote his thoughts on a sheet of paper. He always loved to write: letters, memories, cards and sometimes even poems. As the illness progressed, he continued to express himself through writing, but something had changed: you could rarely understand what he wrote. We often found notes relating to his daily life, especially shopping lists that were practically incomprehensible. We always tried to humour him without making him realise that we were unable to understand what he wanted to communicate. Everything made sense in his head.

Memory is made up of different functions and it is possible to stimulate each of these in a specific and targeted way. As far as orientation in time is concerned, it is useful to keep calendars in view and invite the patient to use them, asking simple questions that help him to place himself in a familiar space and time. Simple, orderly situations may make him calmer and mentally relaxed.

Other ways in which the patient’s mind can be stimulated are: orientation in space, attention, language and automatic activities.

Maintaining order in Grandpa Giorgio’s life had become very important. We always tried to keep his routine simple and as similar as possible to his life before his illness. We wrote all our birthdays and the anniversaries he was most fond of on his calendar. On a small diary we wrote down all our grandchildren’s names and what we were studying. Every 10 minutes he felt the need to read again what was written in the diary, but in those 10 minutes, before he forgot everything, his life was perfectly in order. He felt all the love he needed around him.

Credits

Disordine! WS22/23 - PROJECT VC-1B Faculty of Design and Art - UNIBZ

Professors: Pietro Corraini Gianluca Camillini Stephan Schmidt-Wulffren

Photographs: Sofia Aspromonte Annagiulia Ucci

Exhibition curators: Sofia Aspromonte Annagiulia Ucci

Texts curators: Sofia Aspromonte Annagiulia Ucci

Fonts: AIMA: Associazione Italiana Malati di Alzheimer https://www.aimareggioemilia.it

For further information please consult the website: https://www.aimareggioemilia.it/la-malattia/consigli-per-prendersi-cura/.