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Alzheimer's caregiver

A Wife Discusses Her Husband’s Battle with Early-Onset Alzheimer’s

By Being Patient | August 7th, 2019

Judy Johanson says that after her husband, Steve, discovered he gave his boss a financial report at work, only to later realize he had already given him the exact same report, the couple decided to see whether he may have Alzheimer’s. Steve’s mother was already living with the disease and he had told Judy that getting the same diagnosis would be his worst nightmare. Shortly before he turned 59, he learned that he had early-onset Alzheimer’s. While the couple were saddened by the diagnosis, they decided to take action, becoming Alzheimer’s advocates and connecting with others who had received similar diagnoses. 

  • The couple began meeting with state and federal legislators to tell Steve’s story and advocate for other families dealing with an Alzheimer’s diagnosis
  • Steve’s Alzheimer’s progressed and landed him in the ER. He passed away shortly after. Judy describes their experience in the ER as “horrific” and today, advocates for better care for those living with dementia in hospital settings

Being Patient spoke to Judy, who is now a clinical research ambassador for Massachusetts Alzheimer’s Disease Research Center at Massachusetts General Hospital, about coping with her husband’s early-onset diagnosis, the programs she is working on to ensure dementia patients receive better treatment in acute care settings and advice she’d give to other families who learned their loved one has early-onset Alzheimer’s. 

Being Patient: Can you tell us a little bit about your husband’s experience with Alzheimer’s?

Judy Johanson: Sure, just to start off, Steve was a construction project manager for special projects at Northeastern University and managing very detailed projects, up to $20 million dollars. In May of 2011, he came home from work and said he had received a poor performance review. They noticed that he wasn’t following through with things. He used to say to me, “I’m concerned,” and I’d say, “Mention to your PCP that you’re concerned about your memory.” The PCP would joke and say, “Oh, that’s just marriage,” and all these things that weren’t true for us. But work noticed that he was not following through with details and he used to be very detail-oriented. He realized one time he did a complex financial report at the end of a project, went in and laid it on his bosses’ desk and laid it on top of the identical report that he had already done and had no recollection of.

These experiences at work pushed us to try and get answers about what was going on. His mother was currently living with Alzheimer’s and his worst fear was that he would travel that same road. Five and a half months of testing led us to a diagnosis of early-onset Alzheimer’s, right before his 59th birthday. We decided to dig in and become engaged anywhere we could. We sought resources from the Alzheimer’s Association, we used our voices to advocate on both state and federal levels, we became socially engaged with other people who were on the same path and just decided to make the most out of it. We had a really great time for about four years and then things started getting a lot tougher for him. We recalibrated our compass and had as good of a time as we could during those times and then he kind of just went down fast and hard in the end.

Being Patient: You said you had about four good years with Steve and then it started to slide. What exactly happened with Steve?

Judy Johanson: This time two years ago, in August of 2017, physically, he was a little bit slower than he was, but we were still able to do as much as we could. However, hallucinations were coming into play and when hallucinations come into play and your surroundings or the people you know and love don’t look like the people you know and love or the home that you feel safe in, you can respond in a defensive manner. This made him agitated because he was such a loving man. For him not to feel comfortable was really, really hard for him—you could tell.

His neurologist had been very stringent with antipsychotic medication, thank goodness, but then we started with antipsychotic meds and those aren’t always the answer because on the tail end of the dose, you can actually become more agitated and more uncomfortable. So we tried to manage that for a couple of months. My kids were unbelievable. Sometimes, they would just come in and play music for him or hold his hands and sing him to sleep. On October 21st of 2017, he had a day where there was nothing that we could do to calm his symptoms and his neurologist suggested that we take him to the ER because he needed to get into a geri psych unit. I don’t know if it’s the same everywhere, but in Massachusetts, you have to go through an ER to get into a geri psych unit and have your meds adjusted and the ER is currently not any place for someone with dementia.

Being Patient: When you say “the ER is not any place for someone with dementia,” is it because the staff don’t understand what’s going on inside the brain so they don’t know how to deal with the emotional side?

Judy Johanson: Yeah, I mean, it was hard to deal with for the person who knew him best, me, for 38 years so I don’t expect medical professionals to have an understanding of him as soon as we go in, but with Alzheimer’s being the sixth leading cause of death, you would expect better dementia training. When I go in and say, “He has Alzheimer’s and the triage nurse says three times, “Open your mouth so I can take your temperature,” that is not going to work for him, or putting us in a room for six hours with nobody coming in. I had not brought his anti-psych medication with me or food. Then when his hallucinations took hold and he got aggressive, I needed to call for help. Even though they knew he had Alzheimer’s, he was tackled, restrained and screamed at, and it was really horrific. These people were nice people, they were caring people, they were medical professionals, but I think what’s not understood is what late-stage Alzheimer’s looks like and what a hallucinogenic state looks like and how to deal with that.

Being Patient: What is the answer? Do we need to better train people about how to manage late-stage Alzheimer’s?

Judy Johanson: There definitely needs to be more education around dementia, especially with it being the sixth leading cause of death. There’s a hush and a whisper around Alzheimer’s because people are afraid of it. It’s an unknown entity that lives inside this body. When someone has cancer or heart disease, we can see what the ailment is and treatments or how not to treat it, but with Alzheimer’s, it’s very hard to know how to do that. In Massachusetts, we just passed a law last summer that will require every medical person to be trained with dementia training before 2021 and every hospital has to implement an operational plan on how to deal with people with dementia. It’s a wonderful, wonderful thing to have in writing, but how to implement this is proving to be a little bit of a challenge. In Massachusetts, we have set up a permanent advisory council that is meeting quarterly to try to advise people on how to advance this law and put it into practice. It’s not easy, but I haven’t met one medical professional yet who has said, “This is a bad idea.” They all say, “This is a great idea. How can we do it?”

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