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SPECIAL SERIES: Under 60 and Living With Dementia

When a 48 year-old loving mother and wife began to act strangely, turning hostile, her husband blamed hormonal changes or depression. But for this family, the cause was much more sinister.

May 29, 2014
Liz and Dan Browning
Photo courtesy Dan Browning

Next Avenue is developing a series of blogs based on one family’s experience with frontotemporal dementia (FTD), the most common form of brain wasting that strikes people under age 60.

The author, Dan Browning, spent years as an investigative reporter and now covers health care and medical research for the Star Tribune in Minneapolis. His wife, Liz Cummings Browning, is an accomplished musician and was diagnosed with the disease at age 50. Prior to her diagnosis, her family struggled, not understanding why she seemed suddenly hostile to them.

This highly personal series taps into the universal experience of discovering, then dealing with, a dementia diagnosis in the family.


PREVIEW OF THE SERIES:

A husband thought his wife’s strangeness was due to menopause or mid-life crisis. The actual cause was much, much worse.
Not all dementias are created equal. The particular heartbreak of FTD is that it leaves memory but takes away judgment and reason.
 

For this family, the wife's diagnosis at 51 means a radical loss of independence, though music is a constant and a comfort. 
Legal and emotional help are critical for this family coping with FTD.
 

Things get difficult when Liz's fellow band members explain that she can no longer perform with the group.


When Liz begins to wander, Dan must navigate complicated government bureaucracy to get his wife the assistance she needs.


As winter nears, Dan realizes he needs to make arrangements to keep Liz safe and occupied during the day.


Why two experts are optimistic about research on what's known as FTD.

For Dan and his family, some bad news leads to trying to arrange
hospice care.


Liz's FTD diagnosis changed her relationship with her children, leaving a daughter to feel guilt for not being home.

Prolonging life may mean more suffering for Liz. As Dan prepares for the end, he realizes it's forgiveness he seeks.

Liz's passing relieves her suffering, but also leaves a void.



WATCH: Liz's Story Featured on TPT's ALMANAC



 


DIAGNOSING FTD



SYMPTOM CHECKLIST:
Symptoms of brain related disorders are often misunderstood, and that’s especially true in Frontotemporal dementia (FTD). Early on, family members and friends sense a change but can’t pinpoint the cause. If your relative or friend is acting in a way that doesn’t seem normal to you, maybe it’s due to FTD. If they are exhibiting the symptoms in this checklist, help them find a local expert to test for FTD.



RESOURCES FOR FAMILIES AND CAREGIVERS


Are you or a loved one dealing with a frontotemporal dementia (FTD) diagnosis?
Find out more information by visiting these websites:
 
INFORMATION ABOUT FTD:


VIDEO RESOURCES

Planning for Hope is a documentary featuring the stories of patients in different stages of battling Frontotemporal dementia (FTD), a commonly misdiagnosed disease that is second in prevalence to Alzheimer's.
 

As seniors age, there is always a concern for the onset of dementia, in any form. But the symptoms of FTD can begin earlier in life. KCET explores the subject as part of it's Your Turn to Care series.

Denise Thomas talks about life with her husband of 35 years, Randy, who suffers from Frontotemporal dementia. Video produced by The Kansas City Star.

Dementia is a problem of the elderly, right? Generally that's true. But the Mayo Clinic explains how FTD devastates lives by rapidly turning young, vital people into those who need constant care.