beyond the video

Forgetful Not Forgotten I
Early Onset Alzheimer's: A Son's Love for His Father

A son faces the challenge of his father's early onset Alzheimer's.



Video summary
This first of a two-part Canadian video of a son recording his family's experiences with their father John's Early Onset Alzheimer's disease provides a taste of John's gentle personality. Early Onset is generally defined as a form of Alzheimer's disease that becomes obvious at a relatively young age, that is, before 65. A person can show symptoms as early as their 30s or 40s, but it usually shows up in people who are in their 50s. Early Onset is a rare form that occurs in less than 10% of cases, and perhaps as little as 4 or 5%. In some cases, there is a strong genetic link. There is a perception that people with Early Onset deteriorate at a faster rate, but Dr. Glenn Smith of Mayo Clinic notes we still don't have hard evidence that that is true.

This video speaks briefly about the early signs that made it impossible for John to continue working (John's wife Marilyn describes him as failing to go out or make calls and spending the day shuffling papers instead), and his children's worry that they are at high risk for a similar fate. However, most of the video is a loving portrait by filmmaker Chris Wynn of his father John's day to day experiences. We learn that he realized something was wrong before he was diagnosed at about 57, but by the time this video was filmed, he is mostly content within the protected atmosphere his family provides.

Early on, John was easily upset, and his wife learned to avoid conflict. She told him he was right even when she knew he wasn't. She says she feels sorry for what he was going through before the rest of the family understood, and she wants to help him maintain whatever independence he can.

The video begins with his word-finding difficulties – he can't come up with the word "Halloween." At first it clearly upsets him, but as others fill in the words for him, he doesn't seem to mind. Early on, his son asked him lots of questions, many of which John couldn't answer. His son saw a father with no physical signs of deterioration, and asking questions was his way of hoping that he didn't have a terrible disease after all.

A little bit later in the video Chris is trying to get John to walk toward him and then turn to see his dog Hadley lying near the sliding glass door, and we quickly learn that John has perception problems as well as language difficulties. John says that he can't see his son – perhaps because he is holding a video camera that blocks part of his face. He has a difficult time following a direction as simple as "Walk toward me," and ultimately takes mincing steps. As for turning to see the dog, it's clear from the video that the large sliding glass door is emitting a strong glare, so seeing Hadley is not as obvious even to us as it apparently is to his son.

Ultimately John does see Hadley and his son remarks what an important relationship that is for his father because Hadley – unlike everyone else – asks nothing of him and expects nothing.

Applying the video to your situation

Do you know anyone with Early Onset Alzheimer's disease? If so, how is that person alike or different from John?

Even if you don't know anyone with Early Onset, this video shows how the personality of a person with dementia shines through the disease. We see the good nature of John, his eagerness to please, and his love of his dog. What aspects of the personality of someone you know with dementia continue to shine?

John's wife seems to express some guilt for not understanding what her husband was going through early in the disease process. Have you ever felt something similar?

We also see clear deficits in John such as his word-finding frustrations and his difficulty following directions. What specific challenges has the person you know with Alzheimer's disease (or another form of dementia) faced?

Did you learn anything in this video about how to make a person with Alzheimer's disease comfortable in their environment and with the people around them? If so, what?

If you have a parent or other close relative with dementia, do you worry about getting the disease, too?

Many people with dementia cannot safely care for a pet, but many benefit from their companionship. Can you see why? Don't we all need a friend who accepts us just as we are?

Adapted from Forgetful Not Forgotten, A film by Chris Wynn, Produced in association with TVO Canada.

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Beyond the Video

Early on, his son asked him lots of questions, many of which John couldn't answer. His son saw a father with no physical signs of deterioration, and asking questions was his way of hoping that he didn't have a terrible disease after all.