At the age of 52, Bruce Friedman’s wife, Melinda, was diagnosed with younger-onset Alzheimer’s. She died in January. Emboldened by his family’s tragedy, Friedman, who used to be something of an introvert, now speaks up, intent on educating people about a side of the disease many have never known.  

“I want people to know that Alzheimer’s is not just a disease of old age,” said Friedman, 59. “The impact, both financial and emotional, on younger families can be devastating, so I am telling my wife’s story, trying to raise awareness. Melinda was a civil defense lawyer, extremely bright – and my soul mate.”

According to the Alzheimer’s Association, up to 5 percent of the more than 5 million Americans with Alzheimer’s are diagnosed before age 65. Some people in their 40s and 50s get the disease, which has no treatment or cure. 

“If this happens in your family, one of the most important things is to know your spouse’s wishes for end-of-life care before he or she loses cognitive awareness or experiences another critical health issue that may require a family member to make difficult decisions,” Friedman said. 

He spoke to the Light recently about his work advocating for people with the disease and their families. 

What have you done to help increase awareness about younger-onset Alzheimer’s?

In May, I spoke at the Alzheimer’s Association’s gala. Also, I had an editorial published in the Post-Dispatch, I was featured in a piece in the Huffington Post, Channel 5 interviewed me and I spoke with U.S. Sen. Roy Blunt, who chairs the committee that appropriates federal funds for research. 

What is your primary message?

The money the government spends on younger-onset Alzheimer’s research is 

paltry compared to the billions spent on other diseases. If we spent the kind of money on it today that cancer research gets, there might be an effective treatment in 15 or 20 years. The cost of doing nothing now will lead to even greater costs to our country in the future.

When was your wife diagnosed?

Melinda was diagnosed in September 2010. It took two years of doctor’s appointments and tests to get the correct diagnosis, because few psychiatrists and neurologists think that a 52-year-old woman would have Alzheimer’s. Instead, they looked at menopause, a B-12 deficiency, depression. 

What were some of her symptoms?

Initially, there were a lot of repetitive statements and questions, word transpositions, trouble finding the right word and an inability to take part in two conversations at once. Then she started getting lost when driving to familiar places.

Anything else? 

Melinda was a serious cook, a gardener, and she knitted up a storm. Then she stopped initiating anything that was normal for her. I could see her frustration, and there were many tears. Finally, a top neurologist ran dozens of tests, and the results led to the diagnosis. 

What did you do? 

After my tears and feelings of doom subsided, I immersed myself in the literature. Fairly quickly, I bypassed the anger stage and got to acceptance, because I knew what I was dealing with. 

What do you mean?

Alzheimer’s is a strange and frightening disease. It drives family and friends away, makes people uncomfortable, because of the stigma of a brain disease. People who have it lose their dignity. They can’t take care of themselves and they become overly isolated. If you have no one you can rely on for help, it can be a lonely and exhausting and expensive journey.

Your family members helped you care for Melinda at first, and later you found a warm, welcoming place for her to live out her last months. What help has been available for you? 

All my family could do was to live out our lives as best we could for as long as we could, enjoy every moment together. And we did that. About a year before Melinda’s death, I started meeting with Rabbi Susan Talve at Central Reform Congregation to talk about faith and other issues. Later, I joined two support groups and found an online support group as well.  

What’s next for you?

I continue to love and guide my sons. Also, Venice was my wife’s favorite city of all those we visited, and I will take her ashes there. Otherwise, I am waiting to see how life will be illuminated for me, what’s in store. 

Bruce E. Friedman