What do you see when you look at the face of your loved one who suffers from a form of dementia? And what does your partner, parent or friend see when looking at the world from her or his dementia?

Some time ago, my wife and I visited a nursing home for the older citizens in a town near where we lived. Our neighbour invited us to the nursing home to see a photo exhibition. We had an inspiring meeting with the coordinator of the day time spending for the residents. Among other things, she told us that almost all residents suffer from dementia and / or Parkinson's disease.

The 4 phases

Her story, combined with seeing the residents during our walk around, reminded me of a description of the four phases of dementia that I read on the internet a long time ago: 'The 4 phases of the “I experience” in the dementia disease‘. Cora van der Kooij, nurse and health care historian *, made the description of the four phases.

1: The threatened me

2: The lost me

3: The hidden me

4: The sunken me

(literally translated, read a brief description of these four phases below the images ) 

This description of the four phases made such an impression on me that I have not forgotten it.

The 4 faces

In this post I dedicate my four-part series / quadriptych 'Four' to everyone who has to deal with dementia: the affected person, family and friends, practitioners and caregivers in residential communities and nursing homes.

The titles of the photos present my interpretation of the 4 phases in the "I experience". I believe that these phases not only describe the feeling, the experience of the affected person, but also how the people involved see that person in those phases. In other words, the face with which the patient is looking into the world, the face that is looking at beloved ones, the faces that look at the affected person…

1 - Entangled

2 - Wandering

3 - Hidden

4 - Lost

Description of the phases (more or less literally translated)

The threatened me, phase 1 – Entangled 

The threatened me is the first stage of dementia. During this phase the first symptoms of dementia arise. The best-known symptom is novice forgetfulness. The dementing patient will especially notice that the short-term memory leaves him in the lurch. During this first phase, the patient is aware to a certain extent of the forgetfulness and feels threatened by this. So the patient is afraid of becoming demented and will try to hide this from her or his environment.

The lost me, phase 2 – Wandering

The lost me is the second phase of dementia. This phase is also characterized as disorientation. The patient now has no threatened behavior, but is literally feeling lost. For example, the patient no longer has a sense of time. The patient does not know which day of the week it is and what the time is. The patient often does not know where he is. And it often happens that a patient goes somewhere during this phase, but on the way he forgets where. Finally, patients begin to not recognize (dear) people from their environment.

The hidden me, phase 3 – Hidden

The hidden me is the third phase of dementia. This phase is characterized as complete withdrawal. The patient now completely lives in his own world without any sense of time, place and person. Often the patient’s environment thinks that it is better to leave him alone, but this will cause the patient to become very lonely. But because the patient is very withdrawn, he generally does not contact the environment. This does not mean that the patient no longer wants contact. And often the patient is endlessly engaged in certain movements and / or sounds. 

The sunken me, phase 4 – Lost

The sunken me is the fourth and final phase of dementia. This phase is characterized by no contact. During this phase, the dementing patient is in such a distant stage of dementia that he barely reacts.
And often the eyes are closed and eye contact is almost impossible to make. The patient now literally lives like a greenhouse plant. Therefore this is the most difficult phase for all involved, because the patient is actually only physically present. But the senses of the patient remain sensitive, and they can be stimulated by, among other things, music, smell, food and physical contact.

* Cora's website (Dutch)

Note 1: There is much literature on stages in dementia. I have not researched or made any trade-offs among the many descriptions. So it simply is what touches me and correlates with my artwork.

Note 2: An interesting article I recently read