FROM RESEARCH TO ACTION: WHAT WE LEARNED AT THE DEMENTIA RESEARCH COLLECTIVE RETREAT
On Friday, September 18, representatives from the South Texas, Arab and African American dementia research councils gathered in San Antonio for a retreat focused on a question that could fundamentally change how we approach dementia research:
What happens when communities stop being the subjects of research and become part of the research team?
One of the major methodologies we explored was Critical Participatory Action Research, or CPAR.
It sounds academic.
But the idea behind it is remarkably practical:
The people living with a problem often possess knowledge about that problem that researchers cannot obtain from a spreadsheet, medical chart or laboratory.
A grandmother caring for her husband with Alzheimer's knows things about dementia that cannot be captured completely through a clinical assessment.
A daughter navigating doctors, medications and insurance for her mother knows where the healthcare system breaks down.
A community health worker who has entered hundreds of homes can recognize patterns that may never appear in a hospital database.
A person experiencing cognitive decline understands what it actually feels like to lose pieces of independence.
CPAR says these people aren't simply research subjects.
They are experts, too.
And their knowledge can help determine what researchers should be asking in the first place.
VIDEO: WHAT IS CPAR AND WHY DOES IT MATTER?
KNOWLEDGE IS EVERYWHERE. LEGITIMACY IS NOT.
One of the ideas discussed during the retreat came from scholar Michelle Fine:
Knowledge is widely distributed even though its legitimacy is not.
That statement stayed with me.
Universities determine who receives degrees.
Institutions determine who receives research funding.
Academic journals determine which studies are published.
But none of those institutions determine who possesses knowledge.
People accumulate knowledge by living.
And this distinction becomes extremely important when we're trying to understand something as complicated as dementia.
Researchers possess scientific expertise.
Physicians possess clinical expertise.
But communities possess lived expertise.
CPAR attempts to bring those forms of knowledge together.
STOP ASKING ONLY WHAT IS WRONG WITH THE PERSON
One of the most powerful concepts from the retreat was the idea of examining the “groundwater.”
When someone develops dementia, we naturally focus on that individual.
What diseases did they have?
What did they eat?
Did they exercise?
Were they diabetic?
Did they have high blood pressure?
What were their genetics?
Those questions matter.
But CPAR encourages us to continue asking:
Why?
And then ask why again.
If someone developed diabetes, what contributed to it?
Diet?
Food access?
Income?
Genetics?
Healthcare?
Stress?
Physical activity?
Neighborhood conditions?
If someone didn't receive an early dementia diagnosis, why?
Was there no specialist nearby?
Did the family recognize the symptoms?
Was dementia discussed in their language?
Could they afford care?
Was transportation available?
Was there stigma surrounding the disease?
Was the healthcare system difficult to navigate?
Maybe it wasn't one thing.
Maybe it was multiple stressors accumulating across an entire lifetime.
That is the groundwater.
And one of the most important lessons from Friday was:
Never assume that where a problem appears is necessarily where the problem was caused.
DEMENTIA RESEARCH MAY NEED TO BEGIN DECADES BEFORE DEMENTIA
This way of thinking has enormous implications for the Rio Grande Valley.
Instead of beginning our research when someone receives an Alzheimer's diagnosis at 70 or 75, perhaps we should be examining the decades that came before it.
Childhood.
Education.
Nutrition.
Employment.
Healthcare access.
Diabetes.
Hypertension.
Environmental exposures.
Stress.
Social isolation.
Physical activity.
Family history.
Neighborhood conditions.
Access to preventative care.
Then cognitive decline.
Then diagnosis.
Then caregiving.
CPAR allows us to build what was described during the retreat as a “River of Life” — examining experiences across time rather than treating disease as an isolated moment.
This does not mean one particular experience caused Alzheimer's.
Dementia is far more complicated than that.
It means we start looking for patterns across people's lives.
TURNING STORIES INTO DATA
This is where Friday's retreat became particularly exciting.
Research doesn't always have to look like a questionnaire or someone sitting across from you with a clipboard.
CPAR can use creative methods to collect knowledge.
A community might create a Graffiti Wall asking:
“What has been the hardest part of caring for someone with dementia?”
Hundreds of caregivers could anonymously contribute answers.
Another project might use a Polaroid Fence, asking caregivers to photograph something representing their dementia journey and explain why it matters.
Communities could use Junk Mapping to physically map healthcare resources and barriers.
Researchers could distribute Data Postcards asking residents one or two carefully designed questions and then return the results to the community.
Families could participate in storytelling projects documenting their experiences navigating dementia.
Individually, these are stories.
Collectively, something important begins to happen.
Stories become patterns.
Patterns become questions.
Questions become data.
And data can become action.
THE COMMUNITY SHOULD GET THE DATA BACK
This may be one of the biggest changes CPAR asks researchers to make.
Communities frequently participate in research and never hear what happened afterward.
People complete surveys.
Families participate in interviews.
Patients provide medical information.
Researchers analyze it.
A paper gets published.
And the community may never see it again.
CPAR asks a different question:
Who does this knowledge belong to?
If 500 caregivers help us understand dementia in South Texas, those caregivers should see what we learned.
Return the findings.
Create infographics.
Produce videos.
Publish bilingual explanations.
Hold community conversations.
Show people the patterns.
Then ask them:
“Is this an accurate representation of what you told us?”
Community members shouldn't simply provide the data.
They should help interpret it.
THEN COMES THE MOST IMPORTANT WORD: ACTION
Critical Participatory Action Research.
Research should not end with a report sitting on a shelf.
Suppose 500 South Texas caregivers tell us that transportation is preventing families from reaching dementia specialists.
Now we have a question.
How many families?
Where do they live?
How far are they traveling?
How long are they waiting?
What does transportation cost?
Are appointments being missed?
Which communities have the largest gaps?
Then we map it.
Document it.
Collect the stories behind it.
And identify who has the ability to change it.
Now instead of approaching an institution and saying:
“Transportation seems to be a problem.”
we can say:
“Here is what our community documented. Here is how many people reported it. Here is where they live. Here is what it costs families. Here is what caregivers told us needs to change.”
That is community-generated evidence.
And it can become extremely powerful.
A PRACTICAL CPAR MODEL WE CAN START RIGHT NOW
One of my biggest takeaways from Friday is that we don't have to wait years to begin.
A council, nonprofit, university partnership or community organization could start with six steps:
1. LISTEN
Ask the community one important question.
What is the biggest challenge facing families affected by dementia?
2. DOCUMENT
Collect experiences through conversations, surveys, photographs, mapping, storytelling or other participatory methods.
3. FIND THE PATTERNS
Don't decide beforehand what the answer should be.
Let repetition reveal the problem.
4. DIG DEEPER
Ask why the pattern exists.
Then ask why again.
Look for the groundwater beneath the visible problem.
5. RETURN THE FINDINGS
Bring the information back to the people who provided it.
Ask:
Did we understand you correctly?
6. ACT
Identify one problem the community wants addressed.
Determine who has the ability to change it.
Bring them the evidence.
Develop an intervention.
Measure what happens.
Then repeat the process.
LISTEN → DOCUMENT → FIND PATTERNS → DIG DEEPER → RETURN → ACT
That is something we can begin doing now.
LISTENCommunity identifies the problem.
↓
DOCUMENTCollect stories, experiences and observations.
↓
FIND PATTERNSIdentify what keeps appearing.
↓
DIG DEEPERFind the “groundwater” beneath the problem.
↓
RETURNTake the findings back to the community.
↓
ACTUse community-generated evidence to pursue change.
↓
MEASURE + REPEAT
WHY THIS MATTERS RIGHT NOW
Texas is entering an extraordinary period for dementia research.
The Dementia Prevention Research Institute of Texas represents a $3 billion commitment to dementia prevention and research.
That creates enormous possibilities.
But money alone cannot tell researchers what families in South Texas need.
Communities have to tell them.
And we should be prepared to do more than tell stories.
We should be capable of documenting those experiences, identifying patterns and producing community-generated evidence that researchers, healthcare systems, nonprofits and decision-makers can use.
That could become one of the most important roles of councils like ours.
We can become the boots on the ground of dementia research.
A 30-DAY CHALLENGE
Friday's retreat shouldn't end with Friday's retreat.
What if each council took what we learned and immediately put it into practice?
WEEK 1 — ASK
Choose one question that matters to your community.
WEEK 2 — LISTEN
Speak with 25, 50 or 100 people affected by the issue.
WEEK 3 — ANALYZE
Identify the three or four patterns appearing repeatedly.
Then investigate what may be underneath them.
WEEK 4 — ACT
Bring the findings back to the community.
Choose one problem together.
Identify one realistic action.
And begin.
We don't need to solve dementia in 30 days.
We need to demonstrate that communities can become active participants in determining what gets researched and what happens with that research.
WHY YOUR GRANDMOTHER MAY BE ONE OF OUR MOST IMPORTANT RESEARCHERS
Perhaps this was the most important thing I brought home from San Antonio.
We tend to associate expertise with credentials.
MD.
PhD.
MPH.
Those credentials represent years of education and expertise that are essential to this work.
But another type of expertise exists.
Lived expertise.
The grandmother who spent ten years caring for her husband with Alzheimer's knows something.
The daughter trying to find neurological care for her mother knows something.
The community health worker visiting families in colonias knows something.
The person beginning to experience memory loss knows something.
Our challenge isn't simply collecting their stories.
It is recognizing that those experiences contain information capable of making research better.
Researchers bring scientific knowledge.
Communities bring lived knowledge.
CPAR asks us to put both at the same table.
And then do something with what we learn.
That is what Friday's retreat was really about for me.
Not simply conducting more dementia research.
Building communities capable of turning their own experiences into knowledge — and turning that knowledge into action.
Listen to the full audio of the retreat here https://youtu.be/CKhaEEnbkUs
Comments