What is it Like to Have Alzheimer's Disease?

Health Professional

Acquiring knowledge of Alzheimer's disease is as important for people with the diagnosis as it is for caregivers. A greater understanding of what to expect allows us to plan for the future. Insight can help reduce fear and anxiety and allows others to understand the changes that will take place.

Here's how to gain insight into Alzheimer's disease:

We can listen to People who have Alzheimer's

Leah has vascular dementia and although the cause of her disease is different to Alzheimer's, many of the symptoms such as deteriorating memory are the same. Leah also writes Shareposts on OurAlzheimer's and gives us invaluable insights into what she feels like, her experiences of coping with dementia in everyday life, the highs and the lows. Here are just two of her Sharepost links that I think are great and will be helpful:

Jumbled Thoughts

Handing Over the Reigns of Responsibility

We can read about Alzheimer's. There are some excellent books and articles around.  One book I recommend is by Tom Kitwood who did some great work. The book is called 'Dementia Reconsidered. The person comes first'.

Carol Bradley Bursack has reviewed another great book "Alzheimer's From the Inside Out" by Richard Taylor, Ph.D. He is a psychologist who has first hand experience of the illness. Here is the link to her illuminating article-

We need to attend carefully to the different ways that people with Alzheimer's communicate.  Alzheimer's disease nearly always leads to language difficulties. When people with the disease try to tell us how they are and what they are feeling, the message may be confused or muddled. We have to pay more attention to their situation, their movements, facial expression, etc, in order to interpret the content.

People without dementia have to make an extra effort to understand. We may have to use all our patience, skill, imagination and give a lot more time to understand and empower people with Alzheimer's.

We can learn from the behavior and actions of people with Alzheimer's. We have to pay close attention to the way people with Alzheimer's behave and act as it provides insights into their world.

We can learn from people who have recovered from illnesses with dementia-like features. People who have experienced diseases such as meningitis and severe depression are often able to remember what it felt like and communicate this when they begin to feel better.

We can try to get in touch with our own feelings. By using our own imagination we can try to think what it must be like to be demented. What is it like to feel confused or not remember what we did a short time ago? How easy it can be to misinterpret information, feel the frustration of skill loss or physical weakness. We all have this capacity, but it might need to be used and developed.

Educational facilities use role play to facilitate the experience of Alzheimer's. They encourage students to act through their belief of what it must be like. The result is improved caregiving skills.