What I feel is the truth of my experience whether I have dementia or not...
“Forget about the disease. Look at the person as if there is no disease first and ask yourself, what is going on for that person? What might they be experiencing and feeling as any person would? Then look at how the disease might complicate that experience for the person. That is when you can truly help. When you are seeing the person before the disease, you are then considering who they are first and their experience of their life as it is for them now in that moment.”
Life might change with a diagnosis of dementia, but it does not end. The person with dementia is still living and they are still experiencing life. The only difference is they now have a disease to manage. The impact of the disease on an individual’s life will be unique depending on their life journey to that point, their physical and emotional health, their values, their spirituality and the way they understand and view the world. A diagnosis of dementia does not have to take away a person’s vitality and wellbeing nor does it take away the validity of their feelings. The experience of the disease might influence their feelings in different ways, but it does not make them obsolete or meaningless. These feelings are not the disease; they are the person experiencing life with the disease. Their feelings are of the same value as they were before their diagnosis of dementia. They will still experience all the different emotions they always have – sadness, anger, frustration, grief, joy and happiness. The expression of their feelings has the potential to communicate with you the things that words cannot say, and when words become increasingly hard to find, these expressions can become the doorway to their world within.
The ways that the feelings of a person with dementia are expressed can often be mistaken for the disease. Instead, they should be considered the same way we would consider any person expressing their feelings. As there is always a reason for the way a person feels, there is always a reason for the way a person with dementia feels. Some of their feelings may directly connect to the experience of the disease or a response to it, but they are not the disease itself. They are an expression of the person’s life as it is for them at any particular moment. The difference may be how their feelings are communicated due to the effects the disease may have on a person’s functional abilities. For example, the person may only be able to express to you how they are feeling in non-verbal ways. This decline in the function itself could create feelings of distress and frustration that they may display in other ways. We manage our life too and sometimes it is challenging, sometimes it is sad and sometimes it is joyful. The person with dementia is living like all of us, they respond to their day, their thoughts and those around them and like our lives, sometimes it is sad, sometimes challenging and sometimes joy.
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