The Overlooked Dementia: Shedding Light on Lewy Body with Brandi Hackett - Episode 146

Have you ever heard of a dementia where memory loss isn't necessarily the first symptom? 🧠

In this powerful episode of the Caregiver Relief Podcast, host Diane Carbo sits down with Brandi Hackett, a Senior Manager of Support Services at the Lewy Body Dementia Association (LBDA). With over 20 years of experience in geriatric social work, Brandi helps us unravel the complexities of Lewy Body Dementia (LBD)—a condition often called the "overlooked" or "misdiagnosed" dementia.

If you are navigating a diagnosis that involves sleep disturbances, hallucinations, or movement changes, this episode is a must-listen.

🎧 Why You Should Listen

Lewy Body Dementia is complex. It is often described as an "umbrella term" covering two main conditions: Parkinson’s disease dementia (where motor changes come first) and Dementia with Lewy Bodies (where cognitive changes come first).

Because LBD involves so many different body systems—from digestion to sleep to movement—families often find themselves bouncing between cardiologists, sleep specialists, and neurologists for 12 to 18 months before getting a correct diagnosis.

In this episode, Brandi shares vital insights on:

• Early Warning Signs: Why acting out dreams (REM Sleep Behavior Disorder) can be a symptom appearing decades before a diagnosis.
• The "Ologists" Problem: Why it is so hard to get a diagnosis when symptoms are scattered across different medical specialties.
• Medication Sensitivity: Why standard anxiety or agitation medications can actually make LBD symptoms worse.
• Compassion Fatigue: Moving beyond "burnout" to understand the profound fatigue of the caregiver-patient dyad.

"It's a marathon, not a sprint. Individuals... are living many Tuesdays and Thursdays and Fridays... there is a lot of life there. There is a lot of purpose there." — Brandi Hackett

📝 Key Takeaways from this Episode

1. It’s Not Just About Memory 🧩

Unlike Alzheimer's, memory is often maintained longer in LBD. Instead, early signs often include executive functioning issues (trouble multitasking or strategizing), loss of smell, or vision changes.

2. Handling Hallucinations 👻

One of the most challenging aspects of LBD is visual hallucinations. Brandi advises against arguing with the person's reality. Instead, focus on the emotion:

• Don't say: "There is no bear."
• Do say: "I can see you are scared. Let's go to a safe place." The goal is to make them feel loved, safe, heard, and understood.

3. The "Diamond Lewy" Guide 💊

People with LBD have unique sensitivities to medications. The LBDA provides a resource called Diamond Lewy, a medication guide designed to help families and doctors navigate which meds are safe and which to avoid.

4. Support is a "Dyad" Issue 🤝

Fatigue doesn't just affect the caregiver; it affects the person diagnosed, too. Brandi highlights that support groups are available not just for caregivers, but specifically for individuals living with the diagnosis, allowing them to share their own journeys.

Lewy Body Dementia Symptoms, Diagnosis, and Treatment

LBDA supports those affected by Lewy body dementia by raising awareness and promoting scientific advances. Donate to help treat LBD today!

Lewy Body Dementia Association

📢 Listen to the full episode now to get the tools you need to advocate for your loved one!