Snapshots of Dementia: And So We Begin

Posted by Marti on May 21, 2020 in Dementia | 86 comments

Before beginning a Hunt, it is wise to ask someone what you are looking for before you begin looking for it. —Winnie the Pooh

“By the time they’re diagnosed, most people with dementia are already mid-stage in their disease just because the diagnosis process is so long,” the facilitator told our class of dementia caregivers. “I would say on average, most people take three and a half years to get diagnosed.”

No one else looked surprised by this information; they’d no doubt heard it before. But it shocked and energized me.

By the time of this class (January 2020), I knew my husband suffered from a dementia called frontotemporal degeneration (FTD). I knew FTD is considered a rare dementia (only 10-20% of people with dementia have FTD), is typically an early-onset disease and is often misdiagnosed. I knew that in our case, I’d suspected a problem for more than five years and had actively pursued a diagnosis for more than three. I knew that during that pursuit, my husband had lost three jobs in a row and given away more than $25,000 to online scammers while two neurologists and a neuropsychologist were still telling me he had no significant cognitive issues.

But really? The average length of time for a dementia diagnosis is three and a half years? Even for someone without a rare type?

Some of the other dementia statistics stagger me too. Across the globe, experts anticipate that dementia rates will double every 20 years, with an estimated 81 million cases by 2040. Accurate diagnosis matters because the treatments for dementia vary with the disease. In the case of FTD, some of the medications used to treat other disorders can even cause harm.

Accurate diagnosis also matters because of pain. I don’t refer primarily to physical pain but to the mental, emotional, financial, and spiritual anguish that touches so many families as dementia rakes its ugly claw across their lives.

And so I write. For my husband, who remains largely unaware of the depth of his cognitive issues. For my children, who face the pain of watching their once-vibrant father fade. For other dementia families whose lives have been tragically and permanently disrupted. For my fellow caregivers, who need to know more than I did when we began this journey down a path we did not choose. And for all those who need to see how this set of diseases leaves its ugly imprint on the lives of individuals created in the image of God.

Although I’ll try to provide helpful links, I’m not a doctor or researcher, so please don’t look to this blog for medical advice or counsel. What I hope to share here are small glimpses, snapshots as it were, of dementia as experienced by our family. As time goes on, I may include others’ stories as well.  Because I’m a caregiver and sole provider for my husband and me, my posts may not come as regularly as I’d like.

But for now, this blog is something. And something, as I have learned, is always more than nothing. I hope to share more soon.

Do you have a family member with dementia? How long did it take to obtain a diagnosis? Feel free to leave a comment or a prayer request. Your story matters.