beyond the video

The Roller Coaster Ride of Emotions for the Caregiver—One Expert's Thoughts

An expert offers guidance and understanding for the caregiver dealing with Alzheimer's.



Video summary
Daniel Kuhn, MSW, is the author of Alzheimer's Early Stages: First Steps for Family, Friends and Caregivers and a well-known speaker in the field of Alzheimer's disease. In this brief video, he talks about the need for family caregivers to come to terms with how much Alzheimer's disease changes relationships and advises caregivers to be patient with themselves as they adapt to those changes.

Because the effects of Alzheimer's disease can vary with a person's level of fatigue and alertness, especially in the early stages, many caregivers have a tendency to become frustrated with the person rather than the disease. Dan suggests such anger is counter-productive and advises caregivers to be patient, understanding and flexible, as much as that is possible. Caregivers - although they may wish they could avoid it - need to take on a leadership role in creating an environment in which their loved one can be successful.

Applying the video to your own situation
Think about how your relationship with your loved one has changed since he or she received a diagnosis of Alzheimer's disease (or other form of dementia).

  • Most of us know intellectually that it is a disease that is causing the changes in our loved one – that he is not willfully acting differently - but it can be hard to accept those changes. Think about what changes are and are not easy for you to accept. What's frustrating and what do you tend to be more patient with?
  • Dan talks about how the symptoms of Alzheimer's disease can change day to day. This is particularly true when a person has Dementia with Lewy Bodies (DLB) which is a variation physicians have become much more aware of in recent years. However, it's also common for a person to function quite well in the morning and be completely wiped out by evening - which, frankly, is true to some degree for all of us. Have you noticed variations in your loved one's abilities and your own level of patience?
  • Think about the adaptations you have made to your loved one's changing abilities. For example, do you allow more time for getting ready to go out or fix more casseroles so your loved one doesn't have to cut his meat? Many of us make changes without even realizing we've done so or giving ourselves credit for those successes.
  • At the very end, Dan says that caregivers cannot expect to handle all of the challenges of the changed relationship alone. To whom do you turn when you need support? (If you don't have anyone, call your local Alzheimer's chapter today! Online, go to www.alz.org or call the national office at 800-272-3900.)

Adapted from: He's Doing This to Spite Me: Emotional Conflicts in Dementia Care; Northwest Media Inc., Eugene, OR

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Beyond the Video

Caregivers - although they may wish they could avoid it - need to take on a leadership role in creating an environment in which their loved one can be successful.