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Understanding Dementia

Updated: Feb 11, 2023

If we can understand what life is like for someone who is living with dementia, we can help people with memory loss be more independent and live more fulfilling lives.

It doesn’t take much to make a difference. Just a few simple changes in the way we act and communicate can greatly help and improve the lives of people who have dementia.

Somebody I Used to Know

Anyone who knows me personally or has heard me speak lately on a webinar or in an interview, most probably has heard me mention Wendy Mitchell. This is because the past month I was devouring and taking an abundance of notes from the book Somebody I Used to Know by Wendy Mitchell. I can only say that everyone must read this book. If you are a professional in the field of dementia,

If you have a loved one living with dementia,

If you have been diagnosed with dementia, If you are a human being…

you must read this book to understand what life is like for someone living with dementia. Most importantly, we can all learn from this book several simple things we can all do to help and support someone who has memory loss.

In 2014, Wendy was diagnosed with Young-onset Dementia (Alzheimer’s type) at the age of 58. What is remarkable, is that this incredibly bright and inspiring woman has not only chronicled how her life has changed, so we can understand what it is like to live with dementia, but she has found ways to overcome having memory loss. Wendy describes this as outwitting dementia.

In the book we sadly learn how so many professionals are lacking training and empathy to help those who have been diagnosed with dementia. It is the people living with dementia themselves who have organized together to teach and change the way we relate to people who have memory loss.

Why Are They Talking So Fast?

When someone has dementia, processing information is much slower. If we speak slowly and clearly, the person with memory loss will be able to follow what we are saying better and be able to process what we have said.

If we look at the person while we have a conversation, we can get cues from their facial expression to see if they understand and have processed what we have just said. By being aware of these facial cues, we can wait patiently until the person is able to answer or ask them if we need to clarify or repeat.

In her book, Somebody I Used to Know, Wendy describes the difficulty of talking to people, especially on the phone. She refers to people on the phone as faceless voices. Wendy writes: The phone with faceless voices has become the enemy.

When you speak to someone who has dementia on the phone, you are not able to see their facial cues, so you do not know if the person has processed what you have said. It is important to realize and try to speak in person as much as possible.

If you do speak on the phone, be aware of the difficulty of phone conversations. Speak slowly and allow time for the person to process the information. Let the person you are talking to feel comfortable to ask again if they did not understand all that you said or ask them if they would like you to repeat what you have said.

This is one simple step you an take to help not only people who have dementia, but also older people who may have difficulty hearing and are also slower in processing information.

If It’s Covered, It’s No Longer There

This week during our webinar about aggressive behavior, Nancy and I did a roleplay about a daughter and her mother who has cognitive decline. In this scene, the daughter brings her mother dinner covered with a plate to keep it warm until her mother wants to eat.

After 20 minutes the mother gets angry that her daughter didn’t give her to anything to eat. What the daughter didn’t understand is that once she covered the food, her mother no longer knew her dinner was under the plate. Her mother with dementia could not remember that the food is there.

Wendy Mitchel in her book, Somebody I Used to Know, makes the bold decision to move to a new house after her diagnosis of young-onset Alzheimer’s. After the move Wendy did not find her clothes and thought that perhaps she had forgotten to pack them, or they got lost during the move. Her clothes had arrived but were put away in the closet.

Many people with dementia are not able to see the difference between a closet and the wall. Wendy had no idea that there was a closet there and her clothes were inside.

Similarly, Wendy did not find many of her dishes in the kitchen. Once the dishes were closed in cabinets, she could not see them and did not know they were there.

This incredible woman found a simple solution to this problem. She opened each cabinet and closet in her house, took a photo of the contents in each, printed the photos, and stuck a photo on each cabinet and closet so she would know what was inside. Problem solved and Wendy scored a point against dementia.

How many misunderstandings could be prevented if we all understood that a person with dementia can not remember what is hidden behind a closet or cover.

Let Me Hallucinate

Naomi Feil, the creator of the Validation Method, a way of communicating with people who have memory loss, teaches that people really do see people with their mind’s eye. What they are seeing is real to them and we need to accept that this is their reality, rather than tell them there is no one there. We need to enter their reality. Naomi explains that if someone doesn’t know where they are in the present, they may go back to their past. It is a coping method. This may be why people may see people from their past.

Someone may also see someone from their past so that they can deal with unfinished business. Perhaps there is something that the person living with dementia wishes they could have said which is keeping them from being able to die in peace.

Naomi Feil’s understanding of what people with dementia are feeling was groundbreaking. I appreciate her insights even more after reading what Wendy Mitchell, a person living with dementia, writes about her hallucinations.

Wendy describes in her book Somebody I Used to Know how she sometimes sees her mother or father very clearly in front of her. She explains that people with dementia live in the past, so it’s normal to see people in the past. Wendy asks us to not try to pull her and others into the present. Wendy asks us to let her enjoy her fantasy and not tell her that her mind is playing tricks. Wendy continues by saying that of all the terrible things dementia does, this may be the one gift it gives – for her to be able to see her parents so clearly.

Nature Calms

After Wendy Mitchell was diagnosed with dementia, she began looking at photos in greater detail to try to engrave everything in her memory. She also began taking greater notice of everything around her and found it very comforting that nature will continue as it is even though she may not be the same person.

Wendy takes many photos and you can seem them on her blogs.

For many of us the past two years of the pandemic have been a difficult change and now the tragedy of war in Ukraine has affected many of us.

When we went for a recent hike to the desert to see the flowers blooming there, I thought of Wendy and agreed that seeing that nature continues as always, despite the War and Covid, helped calm me.

Please do read Wendy Mitchell’s book Somebody I Used to Know, so you too can understand better and help those who are living with dementia. I listened to it on Audible and really enjoyed hearing Wendy herself narrate. This woman is inspiring and is changing the way all of us view Dementia.


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