beyond the video

Alzheimer's Inside Out:
Feelings of Those Who Live with the Disease

Those with Alzheimer's talk about how they cope with the disease in their daily lives.



Video summary
In the brief excerpts shown in this video, seven people with Alzheimer's disease (AD) briefly describe some of the feelings they have as a result of their condition. These include:

  • Feeling embarrassed or demeaned by others or by society
  • Being discounted and ignored
  • Feeling diminished as a human being

Ideas to consider
One of the first things you might be told by anybody who has worked with Alzheimer's is, "When you have met one person with Alzheimer's disease, you've met one person with Alzheimer's disease." Each person with AD remains an individual with a lifetime of unique experiences and varying skills. There are "typical patterns of progression" to the disease, but specific disabilities and remaining strengths vary widely from person to person.

What IS common to everyone with AD is a desire to be treated with dignity and respect, and to be valued regardless of their diminishing abilities. Jan Mina Phillips wrote in an issue of Perspectives, a newsletter for people with AD and partially written by them, "The reality is that when diagnosed with Alzheimer's, we are immediately discounted; our views are discredited because of the disease."

Most of us intend to be sensitive to people with AD, and may not realize we are causing offense or discomfort to that person. For example:

  • Have you ever tried to put a person at ease by making light of her forgetfulness, rather than acknowledging she has a devastating disease?
  • If you were asked questions like, "What's the date?" and "Who's the president?" can you imagine feeling demeaned as Lettie said she did?
  • Have you ever given information to the husband of a person with Alzheimer's disease, ignoring his wife who was standing right there because you thought she couldn't be relied on to remember?
  • Have you ever been impatient with someone who took too long (in your view) to tell a story or convey information?

The men in this video speak passionately about how much driving means to them, and how diminished they feel when their licenses are taken away. If you have had to take away a loved one's driver's license for his safety and that of others, were you attuned to the person's feelings?

Another lesson you might learn in dealing with Alzheimer's is, "You will never win an argument with a person with AD." The reason is that we tend to argue based on logic; they tend to argue based on their feelings. Always acknowledge and affirm feelings. We may not all feel the same, but all our feelings are real and valid.

Adapted from: Alzheimer's Disease: Inside Looking Out; Cleveland Area Chapter of Alzheimer's Assn.,
Cleveland, OH & Early Onset Memory Loss: A Conversation with Lettie Tennis; Duke University Medical Center, Durham, NC

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Beyond the Video

"Each person with AD remains an individual with a lifetime of unique experiences and varying skills. There are "typical patterns of progression" to the disease, but specific disabilities and remaining strengths vary widely from person to person."