Early Onset Dementia Patients and Caregivers Need Support

Editor's note: This is the 12th  article in a Next Avenue series by Dan Browning about his family's experience coping with his wife's frontotemporal dementia (FTD). Preview the entire series here.

Almost a year after my wife died of a horrible brain wasting disease, I stood before more than 200 caregivers, health care workers and others afflicted by the disorder to tell them about my family’s loss.

The Association for Frontotemporal Degeneration invited me to speak at their annual meeting in San Diego, which typically focuses on research and information, with the idea of putting a human face on the disease. Many others have suffered as much or more than I have. But I bore my family’s suffering in public, through this blog.

I agreed to speak to commemorate my wife’s struggle with frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS), and to honor her life. And I hoped to underscore the need for services in addition to research.

FTD afflicts at least as many people under 65 as early onset Alzheimer’s disease, but it’s hard to find social service agencies willing to work with those suffering from the disease, which contorts personality even as it leaves memory largely intact.

There’s no cure; nothing to alter the course of FTD. It takes its own time. It can move relatively fast, as it did in my wife’s case, killing her just 16 months after she was diagnosed and perhaps five years after we began to notice changes to her personality. Or it can last for more than 17 years, as it has for Philip Hong, a former rocket scientist from Colorado who spoke at the conference about what it’s like to live with FTD.

At lunchtime, I found myself seated at a table with several other people who have been diagnosed with FTD. I wouldn’t have chosen that table had I known in advance — too painful. But I’m glad I sat with them. They were witty and entertaining in their characteristic, unchecked conversations. They reminded me that FTD can be a bigger problem for caregivers than for those living with the disease, at least until the end draws near.

Some handle things better than others, and we can learn from them.

Consider Ken Fousel, 85, a San Diego resident who sponsored my appearance at the conference. He lost his wife of 59 years to Alzheimer’s. In the process of caring for her, he fell for a woman in his support group named Lynne C. Sanders who lost her own husband to dementia. One thing led to another and they eventually moved in together. Ken said he told people that if it wasn’t a problem for him and Lynne, then it shouldn’t be a problem for them, either.

Sadly, Lynne eventually died from primary progressive aphasia, a language variant of FTD, on Oct. 13, 2013. Ken continues to organize and run dementia support groups.

His story touched me deeply. I recently began seeing a woman I met in my own support group. I’ve been reluctant to talk about her, knowing that others would consider the relationship too soon after Liz’s death. My own children feel that way, and I can’t blame them.

I also wonder how I can reconcile the powerful feelings I still have for Liz while I’m stepping into a new relationship.

That thought nagged me as I took to the podium at the AFTD conference. I produced a three-minute video slide show about Liz (who was a singer-songwriter and keyboard player), with her original tune, When Will I Learn, playing in the background. I wanted the audience to see her, and to hear her soulful voice. Liz was a gifted musician and performer; she produced her first and only album of originals just three years before she died.

I summarized some of the hardest aspects of the disease and the toll it took on our family. I called on those with grantwriting skills to work on getting money for day programs tailored to people with FTD, because putting them together with people suffering from Alzheimer’s makes things harder for everyone. I urged health care providers to reconsider how they deliver the diagnosis so the family members will be better prepared to help their loved ones.

And I called for laws that would allow people to create living wills with trip wires that would let health-care workers help people to end their lives if dementia robs them of their humanity. It’s not as outrageous as it might seem. We already do it for some in hospice care.

I stuck closely to my script. I had practiced it over and over, thinking that I eventually I could get through the 25-minute presentation without crying. That proved to be wishful thinking. I cried every time I read the speech in my hotel room, and I choked back tears as I presented it.

I was well-received. Jill Shapira, a nurse practitioner who just retired from the University of California in Los Angeles, said it took a lot to bring her to tears after three decades of working with dementia patients and their families, but I managed to do it. Many others surrounded me to give condolences and praise. They said I was brave to have shared my grief so publicly.

Ken Fousel told me that he still gets emotional when he speaks to groups about his late wife and his former partner.

We each grieve in our own way.

This month marks one year since Liz died. I’ve since gotten a dog, started taking ballroom dance lessons and opened myself to the possibility of a new relationship. I am grateful for surviving another Minnesota winter even as I celebrate the nascent spring.

As Liz wrote in her song, When Will I Learn,

Time keeps slipping away
You can’t make it stay
What should I do with today
So that I won’t regret a life…

Don’t let it pass me by
When will I learn, when will I learn
That it’s me who holds the key
To lock or to be free