In my shoes

This chapter starts with a small challenge. We invite you to close your eyes and imagine the story you are about to hear, as if you were living it in the first person. Try to imagine the environment in which you are in as much detail as possible. Ready to get started?

Close your eyes. Imagine waking up in a room in what appears to be a hotel, with no one you know nearby. You look around and you don't recognize any of the paintings on the walls, the decor - from the bedside table to the wardrobe, you've never seen them before. You look in the mirror and in the place where your reflection should appear, you also find an older version of you, with marked wrinkles and snow-white hair. This cannot be right... You leave your room, find someone in the hallway and try to ask for help. But the words don't come out as you expect, and the person answers you so quickly, it's almost as if they don't even speak your language. What was the word for what I wanted to say? How do I ask for referrals? Why is the person looking at me with this astonished expression on his face?

You get little information from here, but you can tell that there is a bus stop at the end of the street. You go out into the street, look around you, and you don't recognize any references. It's all new to you. You try to ask for help, but people pass you by without stopping. You decide to enter a cafe to ask for directions and also to eat something. Through the showcase, you can see your favorite cake, but what is the name of the cake? If a close relative of yours were here, he would certainly complain that you shouldn't eat so many sweets. And it's true... Where are they? I hope they're home when I get back.

I order what I wanted, taking a little longer, which caused the person behind the counter to roll their eyes. The coins are so different... They come in different values, sizes and even colors! Which ones will I need? You finally pay, but not before you stop feeling and hearing disapproving comments "You should know something by now, for a person your age".
In the middle of all this, you already know where the bus stop is. You walk towards it, but along the way, you feel that things around you are different. You hear dogs barking, more and more intensely, the noises of passing cars, people talking, everything as if it were right next to you or inside your head. You also feel that your eyes are deceiving you, because it seems that the lines are distorted, that the horizon becomes blurred and that the walk itself changes under your feet, with small holes from far to far and shadows that you cannot understand. . You stop and try to hold on to something. You close your eyes very tightly in the hope that everything is "normal" when you open them. You open your eyes. Things are normal, cars pass by, people talk to each other and the dogs don't seem so threatening anymore. Even the walk continues as if nothing has happened. What could have happened?

The bus finally arrives. You get a little confused talking to the driver, but you realize that he's going to your street, that he's going home. You sit down and think "How did all this happen to me?". You can recognize some references on the street, you can start to see the beginning of your street, you already know where you are. You get out at your stop and find your family members worried about you. What a relief!

What if that bus didn't exist? What would it be like to wake up every day in an unknown context, with difficulties in expressing our opinions, in being heard and supported, with difficulties in recognizing what surrounds us and, sometimes, even ourselves?
Dementia can bring with it several changes, one of which is called anosognosia, that is, the inability to recognize the changes that are associated with the disease itself. This makes the person, even being able to demonstrate some changes that are very evident to those around them, not being able to recognize these same changes in themselves, making it difficult to understand what the experience of having dementia is like. However, despite the fact that anosognosia is common in several types of dementia, it does not mean that it always occurs.

There are some examples of people with Dementia who have had/have the ability and possibility to express their views on what it is like to have dementia. One of those people is Christine Bryden, she was diagnosed with dementia at the age of 46 and has shared her view of what it's like to have dementia with us throughout the many books she's written on the subject.

She addresses the first signs of dementia as the beginning of a long journey of change. In her words: "The first signs of dementia are very gradual changes in us, which sometimes we are not even aware of. Our family and friends may think that "we are not ourselves", and we may think that we are just stressed. But it is the beginning of a long, slow journey of change." Christine Bryden - Dancing with Dementia.

The concept of journey is a very important point, since when we hear about dementia, we usually only think about the most advanced stages of the disease, forgetting that there are several steps in this journey, each with different needs. Even in the most advanced stages, in which dependence is practically absolute, the Person continues to be able to express his interests, his needs, his values.

Even knowing that, and as Cristine Bryden shares "... as the disease progresses, it becomes more difficult to describe how we feel, organize our thoughts and be able to choose and say the words so that they can understand us" Christine Bryden - Dancing with Dementia, there is always an open door for dialogue, even if it is not in such a "conventional" format.
But, as stated by Tom Kitwood - author of the Person-Centered Dementia Care, although these testimonies shed light on the experience of having dementia, it remains a small part of the great "puzzle", because in order to be able to share ideas and feelings like this, it is necessary for the person to still have relatively intact cognition and to be "exceptionally" articulate and open in order to be able to write about their experience.

However, even in the face of illness, there is a human being who faces unprecedented changes and modifications in his life. With the onset of Dementia, changes in cognitive abilities may occur, namely in terms of memory, reasoning or language, or in the ability to carry out small day-to-day activities. As Cristine Bryden shares in some examples:

"Effort and exhaustion: Characterize our day. You get tired just wandering around the house, making a huge effort to remember what day it is, what is going to happen and what you intend

to do today. Nobody can really understand how hard it is to live like this, so everyone seems to trivialize how we feel, and patronize us."
"Even walking and seeing are hard. Stumbling, wobbling and spilling are features of daily life. I find I cannot walk along unfamiliar ground without looking down at my feet,and going up or down stairs requires careful attention to each step and each action. My vision and the signals that my eyes send to my brain to interpret are slow."

"Intermittent reception and fog... The unreliability of my memory is as if the printer ink is running low and it sometimes works and sometimes doesn't. Some days I can remember this morning, but on other days I can't. Sometimes it feels as if a black curtain has fallen over what has just gone by. You are in a continual present, but through that curtain is a vivid past that existed some years ago."

We, as external observers, can often notice a look that seems vague and imprecise, a word that is half-spoken or a story that has some parts to be told. As we can see from Christine's words, there is also a perception on the part of the person itself, of the difficulties associated with the disease, with a need for recognition and understanding by those around him.

When this understanding is shaped by stigma and preconceived ideas about the disease, many people end up seeing their lives limited and conditioned by factors external to the disease itself. When, because of our perception of the disease, we stop being close to the person with dementia, stop inviting them to events or simply being with them, we are contributing to a greater loss than the disease itself could cause. So, the simple act of being there, visiting the person and sitting next to them, can make all the difference. As Christine shares: "Please keep visiting me, even if I might not remember that you came before, or even who you are. The emotion of your visit, the friendly feelings you give to me, are far more important. It is the emotion I connect to, not the cognitive awareness of the event. I treasure your visit as a 'now' experience in which I have connected spirit to spirit. I need you to affirm my identity and walk alongside me."

So, knowing the demands for the Person with Dementia, the difficulties that can arise with the disease and how these can be perceived by the person itself, how can we affirm the person's identity, as Christine asks? Recognizing that every human being, regardless of its illness, has its values, habits and interests, owns its life story, which is unique and important and that no loss of memory can take away. By respecting the person's interests and tastes in things as simple as the way to dress, the favorite foods and the name by which he/she is used to being called, or in more complex and comprehensive things, such as its inclusion in social moments and events in the community, we will be promoting gestures that, with proper support, will allow us to continue to respect the Person beyond his or her dementia.

There are parts of our identity that are built and rebuilt with the support of family and friends around us, and even when we don't have the opportunity to express ourselves, there will always be someone who can help make our voice heard once again.
It is therefore important to realize that when we look at the Person with dementia as a human being and not as a "patient", we gain a new sense of the rights they have. Very often, People

with dementia see fundamental rights, such as the right to freedom of movement, free will or the simple right to choose where they want to live, to be taken away from them because of their illness. Frequently, for the sake of security and the idea that a certain decision or attitude will be "in its best interest", we sacrifice the autonomy and power of choice of the Person itself, which ends up reducing its power of choice and its humanity.

We therefore invite you, after this reflection exercise, to read a little more about how can we help People with dementia not to be forgotten by the people around them. How can we put ourselves in other's people shoes, how can we use that same empathy to enhance the reminiscent capabilities of the Person with dementia. We also challenge you to reflect on how we can use the Person's life story, his / hers identity, which no dementia can totally erase, to shape the way we care for and act with the Person with dementia, while keeping the focus on defending their best interests and respect their universal human rights.

We hope that the chapter has been useful to you, and also hoping that these tips can help you cope and get the support you need. If you are interested in obtaining more information, you can consult our project website at: http://demcare.hcilab.es/ . Until the next episode!