Karen Henley has been outspoken about the need for greater awareness, support, and research into early onset Alzheimer disease. In the years after her husband was diagnosed in 2001, at age 36, Karen has appeared on national television, facilitated her husband's research participation, and started a blog. Questions by Gabrielle Strobel.

ARF: How did you first notice your husband was not all right?

KH: I began noticing different things months, almost a year, before he was diagnosed. Whenever I would confide to friends or family, they'd tell me not to worry. We all assumed that Mike was suffering from depression. He had lost both his parents at a young age. His dad had passed away 11 months after we were married and his mom was diagnosed with AD 3 years before we were married. Neither one of his parents was around anymore when we had children and that hurt him tremendously. He also worked long hours.

ARF: What were the early signs?

KH: Most notably he forgot appointments. If he said he would leave work to take the kids to a doctor's appointment, he'd forget to leave work. When he came home from work, he would just sit and do nothing. He became uninterested in anything. I was very frustrated at his lack of interest. It was a bad time in our relationship.

ARF: Do you recall a specific incident early on that made you wonder?

KH: I remember the "incident" like it was yesterday. It was probably the worst day of my life. We were away with friends. Mike, my son, and I went one place, and my daughter and her friend went to another event. As we were sitting at a baseball game, Mike turned to me and said, "Where is Courtney anyway?" My stomach dropped. I can't even talk about what happened the rest of the vacation. The day after we got home, I called our family doctor for an appointment for Mike. I was concerned that our doctor would not take my concerns seriously, but once he heard about the family history, he understood. He scheduled a number of tests and suggested we see a neurologist, which Mike did. Mike had an EEG and took the MMSE, both of which came back "normal." Mike was still working at the time, so we decided we would just keep an eye on things. This all happened in August 2000. In December of that year, Mike was fired from his job of 13 years. At that time, we knew it was most likely something more serious.

ARF: Did Mike realize even before others noticed?

KH: I believe he did, although we never actually spoke about it. We feared that if we spoke about it, it might be true. He had lost a lot of weight before diagnosis, so much that people we knew approached us because they thought he was sickly.

ARF: Did Mike know he might develop AD because he knew of the familial nature of his brother's and mother's disease?

KH: Mike's mother was diagnosed in 1985. At the time, very little was known about the disease. Specialists flew in from Albany to examine her because they thought she had Creutzfeldt-Jakob disease. She was only 45 years old at the time. Mike's brother was actually diagnosed after Mike, even though the brother was older. He only lasted 3 years before he passed away this past October at the age of 45.

ARF: How long after the first symptoms appeared did Mike get a diagnosis of AD?

KH: I noticed a problem in August of 2000, and Mike was officially diagnosed in April of 2001 after a neuropsychological exam.

ARF: Was getting a diagnosis straightforward?

KH: Strangely enough, Mike was diagnosed a lot easier than others. I attribute that to the fact that the disease ran in his family. I have read so many stories of people who went up to 3 years before they were officially diagnosed. Our doctors ordered all the right tests. The specialist who diagnosed Mike was understanding, and concerned about me and the kids.

ARF: Have you considered genetic testing?

KH: Mike was never tested, but his brother was and turned out to have a presenilin 1 mutation. I was told that if his brother has this mutation, then most likely Mike has it, too. I am not strong enough at this point in my life to have the kids tested. They each know that at some time in their lives, they can get tested, but as my daughter says in her 15-year-old wisdom, "Why bother? There's nothing we can do anyway."

ARF: Genetic counseling guidelines discourage such testing in minors. Hopefully by the time your children are old enough to face the question, the treatment picture won't be so bleak. How about privacy? You have been courageous and open. Do you worry that your children, or any other siblings of Mike's, might be discriminated against because their risk for developing AD themselves is in the public domain?

KH: My children have participated in every interview. I always gave them the choice to talk if they wanted and they decided to do so. We went on the Oprah show 3 years into Mike's disease. The kids were 10 and 12.

ARF: Do you want to share how Mike's disease is affecting your teenage children?

KH: This disease has affected them on many levels. First and foremost, they are growing up having to take care of their father, not vice versa. They never had a problem helping, because they love him so much, but it's not what the average child deals with. They have also missed out on many things. Normal kid stuff takes coordination to get them from place to place. We have had a strong support network of friends and relatives who will take them places I can't go because I have to be there for Mike. Because of that I've missed out on functions that I normally would never have missed.

The kids also live on edge all the time. When they come home from school and don't see my car, they think their dad is in the hospital again. When he was in the hospital in January, he was actually given last rites because his lungs were compressed and his breathing labored. That scared them and now every time Mike breathes differently, they are afraid something will happen. My son tends to stay in his room, and he doesn't talk much about it. When asked, he opens up, but he tends to avoid the situation. If my daughter had her way, she would spend every waking moment with Mike, "just in case." I feel it's been hardest on my son to not have his dad around as he himself is becoming a man.

ARF: They are old enough to understand the implications of grandma having had it and dad having it. Do they worry about their own future already?

KH: Yes, we have had this discussion. My son has cried in the past that he knows he will get it. My daughter says, "There's nothing we can do about it if we do have the mutation." They have both done extensive research papers on AD for a school project, so they know the percentages, etc. They want to know. I guess they feel knowledge is power. When they are old enough, if they ever want to get tested, I will support them. My prayer every day is that a cure is found before we even get to that point.

ARF: Have the physicians been able to tell you why Mike got ill so very young?

KH: Only that he had the mutation that causes eFAD. His mom was 45 at diagnosis, his brother 42. It is odd that Mike was only 36.

ARF: Did you try for Mike to participate in drug trials? What happened?

KH: This is a sore subject for me. I tried to get Mike into two trials when he was in the early stages. No one would even consider him because of his age. His doctor, who is well known in the Alzheimer community, even tried to reach out to her contacts on Mike's behalf, but nothing worked. Mike was so willing to take part in a clinical trial, but because he was only 36 at the time, they wanted nothing to do with him. This hurt so bad. Younger patients are stronger and have so much more on the line. I don't mean to diminish the pain of AD in old people, but when your kids are young, it's even worse. I really don't think there should be any age limit on trials. If someone has a disease, what difference does age make?

ARF: Experimental drugs have risks, unknown and potentially serious risks. What is your stance toward that?

KH: Mike was willing to take those risks when he was diagnosed. He already knew what the outcome would be with the disease, so nothing could have been worse than that. I agreed with him, but he never had the opportunity to try.

ARF: Besides drug trials, has Mike, or anyone in the family, participated in other AD research?

KH: Mike, his brother who recently passed, and his two uncles on his mom's side have submitted blood tests and information to Columbia University. While they are not focused on just eFAD, they are interested in families who have more than two people who have been diagnosed. We will also donate Mike's brain after he passes. If there is any other group doing research and Mike's information can help, I would be more than willing to participate.

ARF: Is research participation a burden? Or welcome? Explain.

KH: It's a little of both, but the positives far outweigh the "burden." The only "burden" is finding time to meet with people while I am also working full-time, caring for Mike, raising two children, and keeping home. But I vowed a long time ago that I would do all I could to help raise awareness and help with research. My children's lives depend on it.

ARF: What is the hardest part about this disease?

KH: There are so many. Beside the obvious emotional roller coaster this disease brings and all that we have lost out on because of it, the financial ramifications are huge. Getting this disease at such a young age has brought many unique problems. Mike and I did not have years to save up and create a nest egg. He was ripped from the work force in his prime. So financially, it has been a struggle. Emotionally, each day I look at Mike I think about the day we were married and the hopes we had. It pains me that he has not been able to enjoy his children and be proud of the young adults they have become. I feel hurt, too, about all that my children have missed by not knowing their "real" dad. They were only seven and nine when Mike was diagnosed, so they know more of the sick Mike than the well Mike. Because Mike knew his name for 36 years before diagnosis but knew himself as "dad" for only 9 years, he never responded when the kids called him dad. He always looked around for his own father, who had passed. Instead of putting him through the sadness and confusion, we decided early on that my children would call their dad "Mike." Every once in a while, they will throw in a "dad." Other fathers should not take the sound of that word for granted.

ARF: Do you want to share one particularly difficult moment? (Don't if it's too painful.)

KH: The most painful moment was when we decided to tell the kids. We all sat on the couch and cried for hours. My son kept repeating over and over, "Is dad going to die?" I can't give more details because of the pain it still brings me today. Other difficult times were when I had to admit Mike to the geriatric psychology hospital to have his medications adjusted because he had put his fist through our kitchen wall. Most other bad memories involved Mike's hospitalizations and children's milestones that he has missed.

ARF: Do you feel you are getting enough support?

KH: We have been blessed in this area. The Long Island Alzheimer's Foundation has been fantastic in directing us to the right people and resources. A local day program was so taken with Mike that they actually developed a day program specifically for those younger people suffering from dementia. Unfortunately, Mike was too advanced by the time the program was funded and up and running, but I consider it Mike's legacy.

ARF: Besides the obvious—a cure—what do you want to see change?

KH: The biggest step toward a change in the right direction is for the medical community to acknowledge EOAD, whether it be familial or not. Mike has been hospitalized seven times in the last 2 1/2 years, and it amazes me every time when I meet doctors, nurses, aides, etc., who do not believe me when I tell them Mike has AD. They have actually doubted me enough to perform additional CT scans just to "make sure." The medical profession should have special training to be made aware of EOAD.

Next, there needs to be more help in caring for patients with AD. We need more day programs targeted specifically to the younger person. It was so difficult for me to go to work every day and leave Mike behind. But how could I quit work when we had already lost his income? He sat at home by himself with nothing to do. It was heart-wrenching, and it shouldn't be like that. I know there is a need out there because in Nassau County alone, the day program I mentioned has grown to 20 individuals 65 and younger with dementia. And that's only by word of mouth. On chat rooms, etc., that I frequent, there are so many people in their thirties, forties, and fifties who are struggling with this diagnosis. The well spouse has to work to support the family, so where does the sick person go and what does he or she do? Many current programs that are government funded are not allowed to accept younger patients because they will not get money for that person. Imagine that??

There should also be more financial assistance for families struggling with EOAD. More research is a must. Clinical trials should be open to all affected, regardless of their age.

NEXT: Interview with Jennifer Williamson