Beyond The Umbrella:

Understanding Parkinson's Disease, Lewy Body Disease, and Cognitive Change.

Written From The Heart

by Lynda Heaslip

Recently, I saw a post about a Parkinson’s Disease support group in my area and it reminded me how quickly we tend to group all neurocognitive/neurodegenerative disease into one umbrella term: dementia.

While all Dementia, Parkinson's and Lewy Body do all involve progressive changes in the brain, they affect different brain systems initially...and we often (and unintentionally) blur these important differences. Differences that matter. Differences that shape care. Differences that deeply affect how a person — and their family — experience daily life.

Let’s slow down and look closer.

Dementia: A Broad Clinical Term

“Dementia” is not a single disease. It is a clinical umbrella describing changes in:

• Memory

• Executive function (planning, sequencing, organizing)

• Language

• Judgment

• Ability to manage daily tasks

There are many causes, including Alzheimer's disease, vascular dementia, Parkinson’s disease dementia, and Lewy body dementia.

Each has a different pattern. Each progresses differently. Each affects families in distinct ways- and when we say “dementia” without nuance, we risk missing the person behind the diagnosis.

Parkinson's disease: More Than a Tremor

Parkinson’s disease is primarily a movement disorder rooted in dopamine depletion.

Early signs often include:

• Resting tremor

• Shuffling gait

• Muscle rigidity

• Slowed movement (bradykinesia)

• Reduced facial expression (masking)

Cognition can be affected — but often later.

Families frequently notice something subtle before they can name it: slowed processing, fatigue, less spontaneity, reduced facial animation. It may look like depression. It may look like withdrawal-But it is neurological.

Over time, some individuals develop Parkinson’s disease dementia — where executive function and thinking speed decline. But this is typically a later development, not the starting point...and that distinction matters.

Lewy body disease: Fluctuation and Perception

Lewy body dementia shares features of both Parkinson’s and Alzheimer’s disease — but has its own recognizable pattern.

Common features include:

• Fluctuating cognition (clear in the morning, confused by afternoon)

• Detailed visual hallucinations

• Parkinson-like motor symptoms

• Sleep disturbances

• Medication sensitivity

In LBD, cognitive changes often appear early — sometimes before significant motor symptoms.

Families describe it as unpredictable. A good day followed by a very confusing one. Lucidity mixed with vivid hallucinations. It can feel destabilizing.

Not knowing which version of your loved one you will meet that day is emotionally exhausting.

Where They Overlap

Despite differences, Parkinson’s, Lewy body dementia, and other dementias share common threads:

• Slowed processing

• Executive dysfunction

• Increased overwhelm in unfamiliar environments

• Higher risk of delirium during hospitalization

• Emotional vulnerability

• Gradual shifts in personality or identity

And this is where families begin to feel the weight of it- not just the symptoms, but the grief.

The spouse who feels alone beside their partner. The adult child unsure how to respond to hallucinations. The quiet awareness in the person themselves that something is changing

(keeping in mind, behind every diagnosis is a person trying to adapt to a brain that no longer processes the world the same way).

What Helps — Across the Spectrum

While we cannot cure any form Dementia; including Parkinson’s or Lewy body, we can influence how the brain functions day to day because the brain remains responsive to environment.

What consistently helps:

• Predictable (Familiar) people, environment and routine

• Calm, low-stimulating environments

• Adequate hydration and protein

• Gentle, supported movement

• One-step cueing for executive function support

• Validation rather than correction

• Meaningful engagement rooted in lifelong identity

• Respect for each person's choices/autonomy

THIS is where Hope lives- not in reversing disease — but in preserving capacity and seeing the person...not the disease.

Getting to the Heart of It

When we move beyond the umbrella term of “dementia” and begin to understand the distinct patterns of Parkinson’s and Lewy body dementia, something shifts.

We stop reacting and we start responding.

We stop asking, “What’s wrong?” And begin asking, “What is it this person's brain needs right now?”

Because behind the tremor…Behind the hallucination…Behind the slowed thinking or fluctuating awareness…there remains a whole person.

Restorative Engagement: Supporting the Brain That Is Present Today

I know I am continually circling back to Restorative Engagement… but there truly is a reason.

After more than 35 years spent studying cognitive development, behavioural support, and what I often call dignified decline, one truth continues to rise to the surface:

Stability does not begin with tasks. It begins with trust.

Time and time again, I have observed the magic that happens when we slow down long enough to build a solid relational foundation before attempting any personal care task.

When care begins with presence instead of performance… with connection instead of correction… something shifts.

Restorative Engagement preserves dignity; while supporting regulation and stability for a person before we ever attempt to provide care or complete task related duties- and as a direct result of a stabilized mind, we witness first hand a dramatic decrease in stress related behavior expressions.

**RE is not task-based care, but relationship-based stabilization.

It recognizes that behind agitation is fear. Behind withdrawal is overwhelm. Behind “non-compliance” is often loss of control. When we help calm and regulate people, we restore connection first, and we capacity second. Only then does meaningful participation become possible and only then can personal care truly be considered personal.

And this is why I return to it again and again — because it works. Not as a program.

Not as a trend, but as a foundation for stabilization (and when we stabilize the soul, the rest has room to follow).

It begins with questions:

• Who has this person always been?

• What environments calm or overwhelm them?

• What rhythms support clarity?

• Where are their strengths — even now?

  
  

For someone living with Parkinson’s, this may mean:

• Pacing activity to prevent fatigue

• Supporting mobility without taking over

• Preserving autonomy wherever possible

  
  

For someone living with Lewy body disease, this may mean:

• Stabilizing daily rhythm

• Reducing environmental triggers

• Responding gently during perceptual changes rather than arguing

• Protecting from medication sensitivity risks in hospital settings

  
  

Across all neurocognitive/ neurodegenerative conditions, Restorative Engagement works to:

• Support executive function through calm cueing, not control

• Prevent delirium through environmental awareness

• Reduce overstimulation

• Preserve dignity in personal care and task oriented duties

• Create moments of success

Restorative Engagement does not promise perfection, it offers participation.....It strengthens what remains.

A Different Kind of Hope

At the end of the day, our theoretical knowledge of all three is not about “managing decline.”

It is about preserving identity, protecting dignity, stabilizing families, and creating moments of clarity, connection, and calm in the midst of change.

When we understand the nuances between all Dementias, including Parkinson’s disease, and Lewy body , we provide better support — not just clinically, but relationally.

Because the goal is not simply symptom management.

The goal is connected presence in every phase of care

And that — truly — is getting to the heart of it.