September is Suicide Prevention Month. Below, Deb Jobe, a member of AFTD:s personer med FTD Advisory Council, courageously shares the story of her suicide attempt following an FTD diagnosis, and how she returned from wanting to end her life to fully embracing it. 

As I sit here in my backyard feeling the sun’s warmth, watching the hummingbirds zip from feeder to feeder and listening to nature’s music, I realize how blessed I am. I say this even though there was a period in my life where I felt overwhelmed, lost, so lonely, and of no value. Why? I was diagnosed with FTD in conjunction with kortikobasalt syndrom.

I clearly remember sitting with my husband as the neurologist went over my tests and delivered the diagnosis. Our world crashed around us. A thousand thoughts ran through my head and overwhelming despair settled in my heart. This is not a disease that runs in my family.

Within six months of diagnosis, I felt there was nothing to live for. Worried that I would become a burden on my family (emotionally and financially) and lose my independence (no more driving, cooking, or riding my bike), and facing sudden retirement from a 34-year career I loved, I attempted suicide.

Numerous studies have shown that people with dementia, and FTD specifically, have an elevated risk for suicidal thoughts and behaviors:

• A study of the U.S. veteran population that was published in 2018 in the American Journal of Geriatric Psychology found that persons with FTD exhibited suicidal behavioral more frequently than persons diagnosed with other forms of dementia.
• In 2019, the American Journal of Alzheimer’s Disease and Other Dementias published a study finding that 40 percent of persons diagnosed with behavioral variant FTD had suicidal thoughts, compared to just 8 percent of an undiagnosed control group.
• In 2021, a Psychology & Health study found that the suicide rate of persons living with FTD or Huntington disease was 2,996 per 100,000 people, much higher than the suicide rate of the general population (10 out of 100,000).

Thank goodness that, despite my suicide attempt, I am still here. Today, I am living well, enjoying precious time with my family, and discovering new activities every day!

People diagnosed with disease as life-altering as FTD may experience depression, stress, isolation, and hopelessness that could lead to suicidal thoughts, with younger individuals experiencing a higher rate of such thoughts. I am a living example of this. I was diagnosed four years ago at age 53.

How did I recover from attempted suicide? A host of supports and services. It reminds me of the saying, “It takes a village…” My neurologist and primary care physician provided referrals for:

• Ongoing counseling
• Cognitive/behavioral speech therapy
• Physical and occupational therapy

We also used valuable resources from the Association for Frontotemporal Degeneration (I especially recommend the HelpLine: 1-866-507-7222 eller info@theaftd.org). Additionally, support groups provided the opportunity to talk to others who understood. We also used prayer and our faith to help guide us.

I began to realize that life is not hopeless: I am still me, and can contribute. Almost four years later, I now think of my post-diagnosis life as a journey. Journeys span a period of time, and each journey is unique and progresses differently for each person.

My life has become simpler, slower paced, and I enjoy the little things more. When negative thoughts start creeping back, I go back to counseling. There is NO SHAME when these thoughts occur! YOU ARE NOT ALONE!

If you or a loved one notices changes in the person living with dementia (PLWD), please reach out to your doctor(s) for help, and contact AFTD.

We are People Living With Dementia, and WE CAN STILL LIVE!

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline. You can also visit the website of the International Association of Suicide Prevention for more resources.