Benefits of Early Detection

I had an interesting chat with one of our clients the other day. She reminded me of the importance of early detection for cognitive impairment and dementia. My client, I’ll call her Joan, was telling me a story about her sister-in-law, Nancy. For years, Joan helped Nancy with her bills and other financial and household matters as they lived close to each other. As Nancy’s cognitive ability declined, she began to get confused and upset with Joan coming over to help her pay the bills. She didn’t understand why Joan kept doing this. Nancy’s son did not want his mom to know that the doctor had diagnosed her with dementia. He thought it would upset her. Nancy’s son lived across the country and didn’t see his mom’s agitation with Joan coming over every weekend to pay bills and in her mind, generally be in the way. Nancy would ask Joan if she was going crazy and confide in her that she couldn’t remember things. Joan felt that it was not her place to tell Nancy about her diagnosis because her son didn’t want her to know. As you can imagine, things did not get better with Joan, they got worse. Joan’s agitation increased and it became unsafe for her to live alone. The son ended up moving his mom to a small memory care community across the country to be closer to him. She was happy to be close to her son but was extremely agitated in the care home. She became increasingly difficult toward the staff as well. As Joan retold this story, she was very sad as she felt that it did not need to be this way. She believes that not telling Nancy about her diagnosis from the start caused her more stress, as well as stress for those around her.

In contrast to this, Joan told me the story about her oldest brother, Bill. With love in her voice, she said that Bill was the smartest man she had ever met. He was a natural giver and took care of everyone. He was really bigger than life. Bill ran his own company with about 30 employees. Joan remembers that one day Bill told his wife, Susan, that something was off with him. They went to see a neurologist, had a battery of tests and some time later the doctor diagnosed him with cognitive impairment. What did Bill do? He took control. The first thing he did was make sure his company was in order and he had his succession plan in place. He wanted to make sure all of his employees would be okay. Next, he made sure his wife knew about all their personal finances. At the same time, he made some lifestyle choices. He made sure he had some activity everyday and made healthy food choices. He started with the medications the doctor suggested. Several years after the diagnosis, he and Joan would be chatting and he would forget a word. Rather than get upset or frustrated, he was comfortable with others helping him find the right word. He would just laugh it off and say it was the dementia acting up.?

Because of early detection, Bill was able to take action. His attitude and outcomes were significantly better than Nancy’s. By acknowledging his diagnosis, he was able to control his situation, put plans in place, start on medications and make appropriate lifestyle choices. Bill was able to slow the progress of his disease by taking these actions. It does make you wonder how different Nancy’s life would have been if she had known about her diagnosis and could have planned for it.

There is a plethora of information to help you, your loved ones and friends navigate the dementia journey. I’ve assembled a few resources HERE. If you know of more resources or have ideas, please comment and I will update my post.

Chalk it up to perfect timing as I just received an email from TrailMatch seeking participants for an early-onset Alzheimer’s research program.

Perhaps you know of a potential participant? Here is a portion of the email:?

We are reaching out to you today in hopes that you or someone you know would participate in an important study to find the genes that increase the chances of developing early-onset Alzheimer’s disease (i.e., memory problems before the age of 65 years). While this form of Alzheimer’s disease makes up only a subset of the overall number of people with dementia, it is significantly understudied although? investigating this form of Alzheimer’s disease is critical to identify novel and more effective therapies . This study is part of the National Institute of Aging Family Based Study, a nationwide project that is working to identify genes that are involved in Alzheimer’s disease.

Who can participate?

Researchers from the University of Miami and Columbia University are looking for individuals who developed memory problems before the age of 65.

What’s involved in participation?

For individuals who are eligible and agree to participate, our research team will conduct interviews to learn about medical history and the extent of memory problems and will obtain blood or saliva to extract genetic material. The researchers will then look for genes that are associated with the early onset form of Alzheimer’s disease.

Why get involved?

Participating in genetic research is important for future generations—especially when it involves diseases that create a tremendous burden for individuals and families. This is especially true for Alzheimer’s disease. Participation in this study will increase our knowledge of the causes of Alzheimer’s disease and identify genes that can directly provide targets for more effective drugs to treat and prevent Alzheimer’s disease.?

How can I help?

If you or someone you know have experienced memory problems before the age of 70 and would like more information about this study, please contact the study site below:

Columbia University, NY: Penelope Baez, 212-305-1527, email: [email protected]?

The TrialMatch Team ?1-800-272-3900 [email protected]