“Understanding the Dementia Experience” (with focus on memory loss)

This post may be of interest to those caring for someone with memory loss.

Recently, on an online Alzheimer’s support group, I saw a recommendation for the booklet “Understanding the Dementia Experience,” by Jennifer Ghent-Fuller, a retired nurse.  The 70-page booklet is available here at no charge:

Understanding the Dementia Experience
Jennifer Ghent-Fuller

The goal of the author seems to be to have caregivers understand that the caregiver must change his/her own behavior and attitude because the person with dementia cannot.

Brain Support Network volunteer Denise Dagan recently reviewed the booklet for all of us.  She concluded that the book is written with memory loss (so, Alzheimer’s Disease) in mind, so if your loved one has memory loss, this booklet may be of interest to you.  Take it away Denise….

The author, Jennifer Ghent-Fuller, a retired Canadian nurse, worked the last 11 of her 25 years as an educator and support counsellor for people with dementia and their families and other carers.

While her writing style took a bit for me to get used to, she certainly has all the information in there, particularly with respect to Alzheimer’s disease, but it can be extrapolated to other dementias, especially in the later stages when memory and cognition are affected.  It is presented in a conversational, warm and instructive manner.

She begins by explaining that people with dementia should not be seen as people with behavior problems because the disease causes them to have an altered view of reality.  “Once we understand the dementia experience, we see their behavior as appropriate within the context of the dementia.”

Here are a few common examples we may react to differently until we understand “the dementia experience”:

As a person’s long term memories are lost from the most recent to the past, they initial have access to most of the past 50 years, then only the first 40, then 30.  This results in them thinking of themselves as progressively younger.  This man manifest itself as “not recognizing their family because they are looking for the individuals they were sharing their life with at age 30.”

Because of this regression, “It is extremely common for people with Alzheimer’s disease to be looking for their parents, and to be distressed if they are told they are long dead.”  She explains what can happen if one persists in telling them the truth.  It is best to avoid causing them emotional pain.  Remember, in their mind they may be feeling like they are only 10 years old!  She suggests telling them, for example, your parents are (insert a place they enjoyed) and they miss you.

“If you compare reality to a jigsaw puzzle, we have all the pieces in place and are able to see the whole picture.  The longer a person has Alzheimer’s disease, the more pieces are missing, and the more difficulty they have in understanding the picture.  However, it is human nature to try.”  This may result in many unfortunate scenarios.  “They may look at their 30-year-old daughter and decide she must be their sister, calling her by their daughter’s aunt’s name.  They may blame others for things that have gone wrong,” or gone missing.  Fuller has a good response to every situation after explaining how the person with dementia has come to the comments or behavior in example after example.

She introduced me to “Spaced Retrieval” training, which allows someone to help a person with Alzheimer’s develop new habits, such as use a walker correctly, but they do not remember being taught.  Information and a link to download the app can be found here:


Remember, this does not “reverse the loss of the ability to think rationally, memorize, think in the abstract, have insight, consider many facts at once to solve a problem, or assess the feelings of one’s own body and reach a conclusion about what to do next in order to resolve difficulties.”

She really leaves no stone unturned, even including at the end, the brochure “How to Interact with a Person with Dementia (with Memory Loss),” which is bullet points of what to keep in mind when interacting with a person with dementia, with Do’s and Don’ts.

Her final thought is “You need to change your behaviour to adapt to the dementia because the person with the disease cannot.”

– Denise