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As a daughter or son, watching a parent navigate the complexities of memory loss is one of the most challenging journeys you will ever take. If your loved one has recently been diagnosed with Lewy Body Dementia (LBD), you likely feel a mix of confusion and urgency.
Unlike Alzheimer’s, Lewy Body Dementia is often described as a “rollercoaster” because symptoms can fluctuate wildly from one hour to the next. Understanding the seven stages of progression doesn’t just help you prepare for the future—it allows you to provide the specialized support your parent needs to remain safely at home.
Lewy Body Dementia is the second most common type of progressive dementia after Alzheimer’s. It is caused by the build-up of protein deposits (Lewy bodies) in the brain. These deposits disrupt two key chemical messengers:
LBD is famously difficult to diagnose because it mimics other conditions. Many Canadian families find themselves stuck in a “misdiagnosis loop” where symptoms are initially mistaken for standard Parkinson’s or Alzheimer’s. The hallmark of LBD is Visual Hallucinations and REM Sleep Behavior Disorder (acting out dreams), which typically appear earlier than in other dementias.
| Stage | Name | Key Symptoms | Recommended Care Level |
| 1 | Pre-Clinical | No visible symptoms; internal brain changes. | Observation |
| 2 | Very Mild | Forgetfulness; “Is this just aging?” | Light Support |
| 3 | Mild Decline | Frequent losing of items; difficulty with complex tasks. | Companionship Care |
| 4 | Moderate | Clear diagnosis stage; visual hallucinations begin. | DementiaWise® Program |
| 5 | Moderately Severe | Needs help with dressing/bathing; increased falls. | Gaitway Fall Prevention |
| 6 | Severe | Personality changes; significant motor impairment. | 24-Hour Care |
| 7 | Very Severe | Loss of speech; high risk of infection. | End-of-Life Support |
In the earliest stages, your parent may appear completely fine. Stage 2 involves minor forgetfulness that many dismiss as “senior moments.”
This is often when you first realize something is wrong. Your parent may struggle to manage a Canadian winter—forgetting to turn up the heat or struggling with the logistics of grocery shopping.
By Stage 4, the symptoms are undeniable. This is usually when a formal diagnosis is reached. Visual hallucinations—seeing people or animals that aren’t there—often start here.
In Stage 5, your parent can no longer live independently without significant risk. Physical symptoms like “freezing” while walking or tremors become prominent.
These stages require around-the-clock care. Communication becomes difficult, and your parent may no longer recognize close family members.
A common question for families is, “How long do we have?” On average, the lifespan after an LBD diagnosis is between 5 to 8 years, though some live up to 20 years.
Because LBD is a “family disease,” the stress on the primary caregiver is immense. If you are balancing a career and your own children, you don’t have to be the case manager, the nurse, and the child all at once.
We know that inviting a stranger into your parent’s home is a big step. At ComForCare, we don’t just provide “staff”; we provide highly vetted, DementiaWise® certified caregivers who understand the specific nuances of Lewy Body transitions.
The earliest signs are often non-memory related, such as acting out dreams during sleep, a “blank” facial expression, or sudden changes in alertness.
While Alzheimer’s primarily impacts memory first, LBD impacts movement and perception early on. LBD patients often have “good days and bad days,” whereas Alzheimer’s is a more linear decline.
While provincial plans (like OHIP) provide some hours of care, they are often limited. Most families utilize private in-home care to fill the gaps and ensure 1-on-1 consistency.
Find a ComForCare location near you or call our Canadian support line at (800) 886-4044.
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