At the most recent meeting of the National Alzheimer’s Project Act (NAPA) Advisory Council, AFTD Ambassadors Katie Zenger and Terry Walter shared their experiences to help educate federal officials on the needs and concerns of people affected by FTD.

NAPA was passed in 2011 to address the needs of families affected by dementia and to bring coordination and focus to national efforts on research and care. The NAPA Advisory Council meets quarterly so federal agencies and private partners working on dementia care can provide updates. Time is reserved at each meeting for members of the public, such as Zenger and Walter, to share their lived experience of dementia to better inform the NAPA Advisory Council of what families are facing.

Walter spoke about FTD, highlighting for attendees the younger onset of the disease compared to Alzheimer’s and its nature as a disorder that affects behavior, personality, speech, and movement as opposed to memory.

“Our family journey started in 1981, with a mother being diagnosed with ALS, and finished in 2007 with my husband passing from FTD/ALS – a 26-year journey,” Walter said. “Today, there are eight children and 12 grandchildren from the three brothers that are at risk of developing the genetic form of FTD/ALS. This risk is why I am so passionate about FTD and finding a lifelong cure.”

Thanks to the early participation of Walter’s husband and brothers-in-law in FTD research, the family learned that they possessed a C9orf72 gene mutation, a common cause of genetic FTD.

A crucial point both Zenger and Walter touched on was the need for the federal government to adopt terminology more representative of the range of neurodegenerative disorders. As Zenger pointed out while reading her statement, while the materials produced by the Centers for Disease Control and Prevention’s Healthy Brain Initiative used the umbrella terms “dementia” and “dementias,” the National Institutes of Health and National Institute of Neurological Disorders and Stroke still use the term “Alzheimer’s disease and related dementias.”

As Zenger highlighted, this can cause difficulties for families facing FTD and other dementias because they are less known than Alzheimer’s and fewer resources are available – Zenger herself experienced these difficulties caring for her father, who was diagnosed with bvFTD.

“As a public health professional and an advocate for AFTD, I feel that it is critical for us to use more precise terminology that reflects the current science, both in epidemiological research and in future versions of ICD/insurance coding,” Zenger said. “Currently, we need to do a better job of collecting accurate data for the less common dementias, especially FTD, in ‘Alzheimer’s disease’ registries throughout the country.”

Are you interested in sharing your lived experience of FTD with the NAPA Advisory Council? AFTD is here to help your voice be heard; contact Advocacy Manager Matt Sharp at msharp@theaftd.org for more information.

AFTD Ambassadors like Zenger and Walter are volunteer leaders who represent AFTD in communities across the United States, raising awareness through networking, outreach, and speaking engagements. Click here to meet AFTD’s Ambassadors.