by Tara Allison Jones

Raise your hand if, like me, you’ve ever been the youngest person in a support group for dementia caregivers. If I were writing to any other audience, there is a chance no hands would be raised. But, as those of us navigating an FTD journey know, my experience of becoming a caregiver to my parents in my twenties is not all that uncommon.

When that role was assigned to me at just 27 years old, I was struck with an indescribable sense of panic. Perhaps if had I completed grad school, found a husband, bought a house, etc., then I would have felt “grown up,” and more fully equipped to become the primary care partner for my parents – my dad, with a diagnosis of Alzheimer’s, and my mom with a diagnosis of FTD. The reality is that no one plots out the trajectory of their 20s and 30s with the expectation of taking care of their parents.

When you become a dementia caregiver, you quickly realize that most of your friends will never be able to fathom what you are going through. They can’t understand why you cancel plans, or avoid making them altogether. They have no frame of reference for your random bouts of crying or lashing out, and most often they simply don’t know how to support you in your time of need. All of this frustration and isolation is further compounded by the need to explain how FTD differs from the memory-based dementias that people tend to be familiar with.

After about two years of incrementally assuming more responsibility for my parents’ care, my best friend’s father was diagnosed with Lewy body dementia. And while I would never wish this situation on anyone, there was comfort in knowing someone my age who understood how this journey upends your life and changes you, from the inside out. Talking to someone who understood, accepted, heard, and validated me felt nothing sort of miraculous.

In addition to leaning on my best friend for understanding and support, I have also found companionship and comfort through specialized resources provided by AFTD. Specifically, AFTD’s Young Adult Facebook Group has become an invaluable part of my support system, providing a necessary (and private) sounding board for people around my age who are walking a parent or spouse through their FTD journey. We are a tight-knit community, offering each other moral support, guidance, resources, and suggestions that are relevant to fellow care partners in their twenties and thirties. Some of us have even begun to compile our experiences and wisdom into a guidebook for other caregivers.

To get through this unwelcome journey intact, I live by the mindset that things happen for a reason, and that I am meant to be on this particular path. I choose to focus on the many ways I have grown through this experience – for example, I have forged a stronger bond with my sister in the last few years, and I have gained a sense of purpose by helping to develop the guidebook. Most of all, I draw comfort from the connections I’ve formed with my peers in AFTD’s Young Adult Facebook Group.

If you too could benefit by being part of that community, we invite you to join us by sending an email to youngadults@theaftd.org with your name, age, the email address you used to join Facebook, and a brief description of your connection to FTD.