Strategies From People With FTD

People with FTD have limited opportunities to share their experiences with others.  Your perspective is critical to creating a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.

Anyone with strategies to share about managing daily challenges, or insights on life with FTD is welcome to submit a short written or creative piece.  Your work will help others.

For more information about how to contribute to this page, contact

Many thanks to the contributors for sharing their insights


Coping with FTD

Cindy Odell
Cindy Odell’s life has been affected by FTD from all angles. She has been the caregiver for her mother, grandmother and aunt, all of whom showed strong symptoms of FTD. And now, Cindy herself is living with a diagnosis.

Cindy generously shares her uniquely thorough understanding of FTD in her story, “Coping with FTD.” In it, she explains how she copes with many of the issues that can face FTD caregivers and persons diagnosed: the mood swings, the depleted energy, the diminished ability to communicate, the difficulty with eating.

As she puts it, “While I do not pretend to be an expert, I hope that by sharing my experiences from both sides, I can help others cope better when dealing with FTD.”

Read Cindy’s full story here.

Dealing with Apathy

Janet Pitts
Janet Pitts is a founding member of Dementia Alliance International, an advocacy and support organization of, by and for people with dementia.

Submitted: May 2014

I would have to say my number one issue is living life through the constraints of apathy.

I allowed apathy to rule my life for nine years before I took the first small step, which in turn lead to more and more steps outside of the walls of apathy. You never stop living with apathy, it is always there, as if lying in wait to take back over.

My apathy is increased greatly with stress.  At times it would seem so much easier to just live within an apathetic state because it takes no energy. Fighting apathy takes mental strength, encouragement, engagement, versus withdrawal, and the will to live well. So you are indeed fighting against most of the symptoms of bvFTD.

It is imperative that you allow loved ones and friends to engage you or else you are setting yourself up for failure. Reaching out for such support is an accomplishment in and of itself. Keeping a calendar in a  common area not only helps you with gearing up to activities, but clearly shows where you have large breaks of, not necessarily hours, but days, without activities. Set clear boundaries as to how much time you will stay engaged and how much time you need quiet and rest. This is a fight for quality of life and, therefore, is not simple but so worth the time and effort in the end. I am now at 10 years post diagnosis and doing the very best I can. I’m beating the odds on longevity of life, as well as quality of life.

Primary Progressive Aphasia

Communicating with people affected with FTD can be challenging–for both parties involved.  The following contributions reflect tips on communication strategies that people with PPA have found helpful in the early stages.

Joanne Douglas
Joanne Douglas has PPA. She has  a PhD in Molecular Microbiology and worked as a professor at The University of Alabama at Birmingham (UAB) in the field of human gene therapy.  She has written two short pieces containing tips on communicating: one is for people affected with PPA and suggests how they can most effectively use their words and communicate with others, and the other is for other people who are trying to speak to someone with PPA.

Communication Tips for People with PPA (Submitted: August 2012)

Additional Communication Tips for People with PPA (Submitted: February 2013)

Communications Tips for Others when Speaking to Someone with PPA

In February 2014 Joanne reached a significant milestone when her manuscript on her personal experiences with PPA was published in the peer-reviewed scientific journal,  American Journal of Alzheimer’s Disease and other Dementias.

You can read more about Joanne’s story via this link to Forbes and you can contact her by email at