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Enter The World of the Person With Dementia

I had someone ask me “Why do all people with dementia feel someone is out to get them?” My answer—not all people with dementia feel or react like someone is out to get them. There is no one size fits all when it comes to dementia. Just like all human beings are different, so is each expression of dementia different.

Dementia is not a disease in itself. It is a symptom and that symptom originates in many different diseases. 

Most diseases other than dementia follow consistent patterns and have particular treatment courses a “take two and your headache will probably go away” kind of protocol. With dementia, there can be no protocol because everyone is so different. You can treat the specific disease causing the dementia (maybe) but the dementia itself, probably not.

Because of all the differences and the unpredictably of dementia, caring and interacting with a person is often a challenge. They are in one world, their own reality, and we are in another. It is hard for us to understand or even relate to what is going on inside of them, let alone respond appropriately to them.

Most of us live in either the past or the future. Few of us live in the moment. The present is really the most important part of living—all we do and are stems from each present moment. 

People with dementia live in the moment also: their moment. Generally, their reality does not correspond to our ideas of what living, interacting, and perceiving is about. Their reality doesn’t make sense to us “rational” thinkers. People living in another world, another perception of what is occurring, forces us to be present in their reality. 

My suggestion is to try to make that moment as pleasant as possible. Enter into their world, explore it with them, share it with them. If a doll to them is a child, let it be, talk about the baby. If there is babbling, just listen.

I’m not an expert in dementia care. My field is end of life care. Dementia is another field entirely, as dementia doesn’t play by the typical end of life rules.


Something more… Enter The World of the Person With Dementia

When it comes to the process of dying with dementia is different than dying from another disease or old age. I wrote How Do I Know You? Dementia at the End of Life  This booklet discusses the challenges in providing end of life care when dementia is the main diagnosis. It provides information to the family, friends, and professionals who are caring for and making end of life decisions on behalf of someone with dementia.

Teepa Snow  and Mary Anne Oglesby are both involved and knowledgeable in working with people and dementia. They are both great resources.

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.

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