Neuroscience patient and caregiver resources

Video Transcript

JIM TAYLOR: I'm Jim Taylor. I lead a patient advocacy organization for dementia patients called Voices of Alzheimer's.

My second wife, Geri, I married and had a wonderful marriage; together 33 years. Geri was a health administrator, a nurse and knowledgeable person and she had familial Alzheimer's.

Her likelihood of developing Alzheimer's was very high. In her 60s, she began to experience cognitive impairments.

After several months of continuing episodes, went to the neurologist and was diagnosed with mild cognitive impairment. It most frequently becomes Alzheimer's, as it did for Geri.

Geri had a 12-year journey with Alzheimer's. She was very, very fortunate to get into an amazing clinical trial.

A care partner’s job is to try to make the remaining time for the patient as just as glorious as possible and I think participating in a trial is part of that job.

I had not entertained in any way that my brilliant wife had any significant cognitive impairment. So, to hear the words “possibly Alzheimer's” was devastating.

I needed more than she to emotionally adjust to what was happening and how our life had been inalterably changed.

When Geri was suffering from what many Alzheimer's patients incur, she would look in the mirror and not recognize the woman she saw.

And she thought she heard kids outside calling her name, needed help from her. So, we'd go out and look and of course, there was nobody there.

But the agitation accelerated to the point where she was very aggressive. In the evening, she became unhappy, unpleasant, argumentative.

I think it's important that people know about agitation, about psychosis. Many patients experience these symptoms.

I wish for myself that I had had the courage to better understand symptoms. I would have been better prepared. I don't think I would have interacted differently with Geri, but I wouldn't have been so frightened.

It's hard to reach people that are living with Alzheimer's today. So, we as a community—advocacy, patients, care partners, families, pharmaceutical companies, researchers—need to do a better job getting people to understand why they benefit, both physically and psychologically, from participating in a clinical trial.

We need to encourage care partners to engage in clinical trials and research that will address the symptoms of agitation and psychosis. We're going to stay right where we are unless people have the courage to say, “I will. Yes, I will do that.”

Geri said this treatment makes me a part of the team that's trying to find a cure. A cure, maybe not for myself, but for the public and for my children and my grandchildren.

Video Transcript

Jennifer Casey: I'm Jen, I'm 56 years old. I've been married to Paul 26 years and I have two daughters, Alex, 21, and Mikayla, 18.

Jennifer Casey: When my mom was diagnosed with Alzheimer's, it was very surreal. We knew both of our lives just changed significantly. 

Jennifer Casey: We were best friends. But at least I could give her that gift of caregiving that, you know, she gave me the gift of life. So, there's some kind of a pay it forward there too. 

Paul Casey: My mother-in-law was wonderful. She was a delight. She was always upbeat. I was happy to be involved and I would do it again without even thinking about it.  

Jennifer Casey: My mom's creativity being an artist was just, I think, kind of her identity. I think that's how she bonded with people. She would find groups of other artists and they would do things together. 

Jennifer Casey: I'm a very lucky person. I had a wonderful mom.

Jennifer Casey: My mom's journey with Alzheimer's, we say it's about 13 to 15 years long because by the time you get the diagnosis, you realize she's had this for a couple years. 

Jennifer Casey: The diagnosis process I found frustrating because her regular doctor had written “she has dementia,” and never told her that and so I found that out later. My mom was never told that information. My dad was never told that information.  

Jennifer Casey: When we knew she needed to move up, it just made the most sense to live with us. She could see what’s going on. She knew you can't live alone with Alzheimer's. 

Jennifer Casey: Being a full-time caregiver, you don't realize how full-time it really is. Because think of what each of us does to get ready in the morning. Well, over time, my mom couldn't do any of that.

Paul Casey: Further down the road, we saw the filters leaving. She just wasn't the same person anymore. You could slowly see the attention to detail was slowly going. 

Jennifer Casey: She would start to wake up in the middle of the night and that's when there would be these strange hallucinations that were very challenging to deal with. 

Jennifer Casey: What I learned was the best way is you go into the hallucination with her. So, she would say, “There's spiders on the wall.” And I'd say, “Oh, where? Show me.” And so, she'd point and I said, “Wait, let me go get it”. “Let me go get the spider.” And I would just pretend to go get the spider. And I said, “Look, it's gone.” And then she's like, “Okay.” 

Jennifer Casey: With Alzheimer's, it's completely disruptive, actually. And it gets the person angry.

Jennifer Casey: We put up cameras everywhere because we needed to know if she was okay. I think it was two years that we had a pullout couch right outside her bedroom. So, that was nice, because anytime I heard anything at night, I could just look immediately and I could get there. 

Jennifer Casey: Where we had her diagnosed, they did have clinical trials and so they offered us a few and one just really seemed to make sense. She was on it for three years. 

Jennifer Casey: The clinical trial was very helpful in more ways than I could have imagined because the people there were so well versed in Alzheimer's from a caregiver perspective as well as a patient. So I could come there with all my questions. 

Jennifer Casey: We were able to find a support group and so then you start talking to other families and people that experienced it before. 

Paul Casey: I thought that was really important because you got to see real examples of, okay, this is what we just went through and a sense of you're not doing this by yourself. 

Jennifer Casey: One thing that really helped was exercise. It just was that one hour where you didn't have to think about Alzheimer's. 

Alex Casey: We also tried to exercise grandma's limbs. I remember taking her out on a walk up and down the driveway. 

Mikayla Casey: We would take her up and down the driveway just to get her legs moving and make sure all her muscles are good and keep them active. 

Paul Casey: I really attribute the fact that, that it was a team effort. 

Jennifer Casey: Anyone going through this, you need someone to help you. You can't do it alone.

Mikayla Casey: Taking care of someone with dementia definitely made our family so much closer than anything. Working together was just one aspect that we learned. And another strong thing we learned from this was communication is everything.