Dementia Aide

09/26/2025

🧬 Knowledge is power — even when it’s heavy.

For some families (not all), FTD runs in the genes.

Testing doesn’t guarantee answers — or that symptoms will appear — but it can:

-Clarify if FTD is inherited
-Support family planning
-Open access to clinical trials
-Push research closer to treatments and cures

Genetic testing is deeply personal — and best done with a genetic counselor.

But every choice to test, share, or participate in research helps build a future with more answers.

👉 The most studied genes tied to FTD are MAPT, GRN, and C9orf72.

💡 Organizations like The AFTD, CurePSP, CureGRN, CureMAPT FTD, CureVCP Disease, and others are advancing gene-specific research and trials, giving families hope, so follow and connect with them to know more.

👉 Save this post, share your story, and follow along as we continue the FTD Awareness Week series.



Thanks again to for opening up their hearts and stories.

09/25/2025

Share the episode with your friends who are in the diagnosis journey.

Knowledge is power — even when it’s heavy.
Genetic testing for FTD provides clarity, planning & a hope for cures.

Getting an accurate diagnosis of Frontotemporal Dementia (FTD) is one of the hardest parts of the journey.

Families often spend years in confusion, misdiagnosis, and frustration before someone finally connects the dots.
🎥 In this episode, you’ll hear:
✨ Caregivers answering: ‘What finally led to the diagnosis?’
✨ The moment families realized: ‘This isn’t stress or normal aging.’
🔎 The reality:
– Up to 50% are first told it’s a psychiatric condition
– On average, it takes 3.5 years from first symptoms to diagnosis
– FTD is often misdiagnosed as depression, bipolar disorder, or another neurological condition

💙 Earlier recognition can change everything — giving families access to resources, support, and time to plan.

👉 Share in the comments: How long did it take to get your loved one’s diagnosis?




Thanks again to for opening up their hearts and sharing their stories.

09/24/2025

09/24/2025

For many families, the hardest part isn’t just the disease — it’s the silence & isolation. Stigma and misunderstanding can make us hide what we’re going through. But every time we share our stories, we chip away at the shame and create space for compassion. 💜

👉 Behaviors are symptoms of a brain disease — not a reflection of a “bad household.”
👉 Leaning on your community can bring comfort, strength, and connection when you need it most.
👉 Getting a diagnosis matters — it turns confusion into clarity, and opens the door to real support.

Together, we can break the silence, lean on one another, and make sure no family faces this journey alone.





Thanks again to for opening up their hearts and sharing their stories.

09/23/2025

✨ Share this post to help us raise awareness of FTD.
The true cost of Frontotemporal Dementia (FTD) goes far beyond medical bills.

💸 Financial stability
🧠 Mental health
👨👩👧 Generational security
⏳ Years of life

Caregivers told us what FTD has taken from them: homes, peace, futures — and the energy that could have gone elsewhere. Families can spend up to $120,000 a year, not including the hidden costs of lost time, careers, and relationships.

💙 Let’s make these invisible costs visible.

👉 Follow us for more stories during FTD Awareness Week
👉 Share your story in the comments
👉 Tag a friend who needs to hear this

Tomorrow: The Shame of FTD

Special thanks to for being so brave and sharing their stories with us.

09/21/2025

Frontotemporal Dementia (FTD) is often called the cruelest dementia.
Why? Because it doesn’t wait for old age. It strikes in the 40s, 50s, and 60s — when people are still working, raising families, and building their lives.

FTD changes personality, behavior, and language in ways families can’t ignore. Yet it’s still widely misunderstood, often mistaken for stress, depression, or even a midlife crisis.

🎥 This week, caregivers will share their personal journeys — one episode each day.

🔎 Along the way, we’ll break down the facts:
– It’s the most common dementia under 60
– It affects families in their busiest years
– It’s not as rare as many believe

💙 During FTD Awareness Week, you’ll hear real voices, see real experiences, and discover resources families wish they had sooner.

👉 Follow along and turn on reminders — because awareness opens the door to earlier support, better understanding, and hope.

09/20/2025

🌙 Many caregivers notice dementia symptoms seem to get worse at night — a challenge often called “sundowning.”

Evenings can bring:
🧠 A tired brain with less energy to cope
⏰ Body clock disruptions
🌑 Shadows that create fear or confusion
🍽️ Unmet needs like hunger, pain, or boredom

✨ The good news? Small changes — from soft lighting to soothing routines — can help create calmer evenings.

💙 Caregivers, remember: it’s not your fault. With patience and the right tools, nights can become gentler for both you and your loved one.

09/19/2025

My dad had 6 kids and a devoted wife and even then, it wasn’t enough to satisfy his care needs.

A dementia disease can take down a whole village. The 24/7 care, the endless support needed, the safety concerns, the physical requirements…you can’t do it alone. But some of us have to make it work.

For those of you caregivers that are alone, I see you. Sometimes circumstances don’t allow to hire help or you may live far from friends and family…we were one of those families.

You’re trying to balance care, careers, kids, relationships, money, your own health.

We might not be able to physically help you today, but we’re here, rooting for you & thinking of you as you just barely make it through another day.

Looking back - this is what I would’ve wanted someone to tell us on the darkest days:

-Cry when you need to cry
-Try to focus and fill your cup even with a small thing like a tea, a call with a friend, a donut…any victory no matter how small is important.
-There ARE resources out there for you - care grants, social workers, doctors. You might not have the time, but it’s worth making time to scream for help. Someone might hear and lend a hand.
-You are doing a good job. No matter what…you are the one in the battle field advocating for your loved one and you are doing right by them.

❤️❤️

09/18/2025

09/17/2025

✨ The heart of dementia care isn’t just in routines or tasks—it’s in the little sparks of joy that shine through the everyday. 💙

👉 What’s one recent small moment of joy that made you smile in your caregiving journey? Share it below—we’d love to celebrate with you. 🌸

09/16/2025

🧠 What is dementia—really?
It’s an umbrella term for symptoms that affect memory, thinking, and daily life. It isn’t a normal part of aging, and it can be caused by several conditions like Alzheimer’s, vascular dementia, Lewy body, FTD, or mixed types.

Look out for early signs like:
• Memory loss
• Language or problem-solving difficulties
• Changes in behavior or personality

Risk can be influenced by age, family history, health (blood pressure, cholesterol, heart disease, stroke, hearing loss, depression), and lifestyle (inactivity, smoking, excess alcohol, poor diet).

If something feels “off,” talk with a doctor. Early evaluation matters.

📌 Save this, share with someone who needs it, and tap the link in bio to learn more about symptoms, causes, and treatment options. 💙

09/13/2025

🧠 Dementia is more than “just memory loss.”
It can change how someone thinks, communicates, and feels.

💙 The more we understand, the better we can support with patience and compassion.