HOW I AM COLLECTING 25 CAREGIVER INTERVIEWS IN THE RGV

And how your council can do the same thing

From Joshua Moroles, South Texas Council

September 21, 2026

WHY I AM DOING THIS

At the retreat we said the same things three times: families do not know the signs, the care is not there, research has not included us, and we have data sitting unused. I am collecting 25 recorded interviews with caregivers of people with dementia or Alzheimer's in the Rio Grande Valley to put numbers and voices behind that. If the Arab Council and the African-American Council run the same interviews the same way, we end up with 75 interviews across three communities in Texas that can be compared side by side. That is something none of us can produce alone, and it is exactly what we said we wanted to have in hand when the DPRIT committee starts deciding what gets funded.

Everything below is the setup I am using. Copy it as is, or change it and tell the rest of us what you changed so we can still compare.

THE LAYOUT IN ONE PARAGRAPH

A caregiver gets an email from a dedicated project address. The email has a link to a Google Form that takes about three minutes and collects basic information about them and about the person they care for. The form drops every answer into a Google Sheet automatically. I schedule a 30-minute Zoom interview from the same email address, record it, and ask the same set of questions every time. After each interview I add the answers to the sheet the same day. When all 25 are done, I will share the info with the council and we can log it for Rio Grande Valley.

STEP 1. THE DEDICATED EMAIL

Create a Gmail account used only for this project. Mine is one address for the RGV interviews. Every email to a participant goes out from it and every reply comes back to it, so nothing gets mixed with personal or work mail and the whole record of contact is in one inbox.

Set it up this way:

Create a label called Participants and a filter that applies it to every reply.

Save two email templates (Gmail settings, Advanced, Templates): the invitation and the scheduling confirmation.

Use the account's Google Calendar for the Zoom bookings so the schedule lives in the same place.

STEP 2. THE GOOGLE FORM

Sign in to the project Gmail, open Google Forms, start a blank form.

Title: Caregiver Interview: About You and the Person You Care For

Description: About 3 minutes. Skip anything you would rather not answer. Your answers are stored with a number, not your name.

Settings: turn on Collect email addresses (verified), turn off Limit to 1 response, turn on Show progress bar, leave Make this a quiz off, turn off Allow response editing.

Section 1, Agreement. One required checkbox: I understand this interview will be recorded, my name will not be attached to anything I say without my separate written permission, and I can stop or skip anything at any time.

Section 2, About you, the caregiver.

Age (number)

Gender (Woman, Man, Non-binary, Prefer to self-describe, Prefer not to say)

Race and ethnicity in your own words (short answer)

Where were you born (short answer)

City or county where you live now (short answer)

Language spoken at home (English, Spanish, Arabic, Other)

Language preferred for medical information (same options)

Highest level of school completed (Some school, High school or GED, Some college, College degree, Graduate degree, Prefer not to say)

Working status (Full time, Part time, Not working, Retired)

Health insurance (Yes, No, Don't know)

Faith or religious community, if you want to share (short answer)

Relationship to the person you care for (Parent, Spouse or partner, Grandparent, Sibling, Other)

Do you live with them (Yes, No)

Paid caregiver, unpaid family caregiver, or both

How many other people help with their care (None, 1, 2 to 3, 4 or more)

Section 3, About the person with dementia or Alzheimer's.

Age (number)

Gender (same options)

Race and ethnicity (short answer)

Where were they born (short answer)

Primary language (same options)

Health insurance (Yes, No, Don't know) and type if known (Medicare, Medicaid, Employer, Marketplace, Other, Don't know)

Diagnosis (Alzheimer's, Another type of dementia, No formal diagnosis, Don't know)

When symptoms were first noticed (Less than 1 year, 1 to 2 years, 3 to 5 years, More than 5 years)

When diagnosed, if diagnosed (same ranges, plus No diagnosis)

Other health conditions (checkboxes: Diabetes, High blood pressure, Heart disease, Stroke, Other, None)

Where they get care now (checkboxes: Primary care clinic, Neurologist, Hospital, Community clinic, No regular care, Other)

Distance to the nearest specialist they have seen (Under 30 minutes, 30 to 60 minutes, 1 to 2 hours, More than 2 hours, Never seen a specialist)

Section 4, How to reach you. A line that says this is used only to schedule and match your interview and is stored separately. Then: name, phone or email, best way to contact you (Call, Text, Email, WhatsApp).

Confirmation message: Thank you. We will reach out within a few days to set a time for your interview.

Do not ask about immigration status. Country of birth and language tell us what we need without putting anyone at risk on paper.

If your community needs the form in another language, make a copy of the form and translate it. Google Forms does not translate for you. Send each person the link in their language. Keep the question order identical so the sheets line up.

STEP 3. LOGGING ANSWERS TO GOOGLE SHEETS AUTOMATICALLY

In the form, click the Responses tab, then the green Sheets icon. Choose Create a new spreadsheet and name it something like RGV Caregiver Interviews 2026. From that moment every form submission becomes a new row in that sheet with a timestamp and the verified email, and you never type a demographic answer by hand.

Then set up the sheet:

There is an option when you create your Google Form to automatically create a google sheet to collect info. If you need help, contact me.

STEP 4. THE 30-MINUTE ZOOM INTERVIEW

Schedule from the project email. Record to the cloud. Before you hit record, confirm they are okay with the recording and ask if they had questions about the form.

Ask these in this order, in the same words, to every person. The bracket tells you what it gives us: [N] is a number or category we can count across everyone, [T] is a story we code into themes afterward, [M] is material for something the council will build.

Opening

Tell me about the person you care for. What were they like before this started? [T]

Recognizing the signs

1. What was the very first thing you noticed that made you think something was wrong? [T] [M]

2. How long ago was that, in months or years? [N]

3. When you first noticed it, what did you think it was? [T]

4. Did anyone in your family disagree that something was wrong? Who, and what did they say? [N] [T]

5. How long passed between the first sign and the first time a doctor was told? [N]

6. If a friend said "I think something is wrong with my mother," what three things would you tell them to watch for? [M]

Getting to a diagnosis

7. Who was the first health professional you spoke to, and what did they say? [T]

8. Did the person get a formal diagnosis? [N]

9. Did they see a neurologist or memory specialist? How long did you wait, and how far did you travel? [N]

10. Was any of this done in a language you or the patient are not comfortable in? What happened? [N] [T]

11. Tell me about one time the system worked for you, and one time it failed you. [T]

12. Some people say there is no point getting a diagnosis when there is no cure. What do you think? [T] [M]

13. On a scale of 1 to 10, how easy was it to get help when you first needed it? [N]

Living with it now

14. About how many hours a day do you spend on caregiving? [N]

15. What is the hardest part right now? [T]

16. Who helps you? Who did you expect to help who does not? [T]

17. When was the last time you had a full day off? [N]

18. Has caregiving cost you income, a job, or savings? [N] [T]

19. Is there anything about your culture, faith, or family that makes this easier? Anything that makes it harder? [T]

20. On a scale of 1 to 10, how supported do you feel right now? [N]

Trust and research

21. Has anyone ever asked you or the person you care for to take part in a research study? What happened? [N] [T]

22. When you hear the word "research," what comes to mind? [T]

23. What would make you say yes to a study? What would make you say no? [T] [M]

24. Would it matter if the person inviting you was from your own community or had been through it themselves? [N] [T]

25. On a scale of 1 to 10, how much do you trust medical research? [N]

What should change

26. If you had ten minutes with the people who decide where dementia money goes in Texas, what would you say? [T] [M]

27. If the council could do one thing for caregivers in your area next year, what should it be? [T] [M]

28. What question about dementia in our community has nobody answered? [T] [M]

29. Is there a person, group, or resource that helped you that other families should know about? [M]

30. On a scale of 1 to 10, how confident are you that you know what to expect in the next year? [N]

Closing

31. Is there anything I did not ask that I should have? [T]

32. Would you be willing to: be contacted again; join a small group conversation with other caregivers; take a photo that represents your experience and talk about it; share your story publicly with your name; be someone other families can call who has been through it? Answer each one yes, no, or maybe. [N]

Write down exact words on questions 6, 23, 26 and 28. Those become our products.

If the interview is running long, questions 14, 17, 18, 19 and 31 can be shortened or dropped. Everything else stays so the 25 line up.

STEP 5. WHAT GOES IN THE SHEET AFTER EACH INTERVIEW

Add these columns to the right of the form data and fill them the same day:

Interview date, interviewer, language of interview, translator used (yes/no)

Months since first sign (Q2)

Family denial (yes/no, Q4)

Months from first sign to first doctor contact (Q5)

Formal diagnosis (yes/no/in process, Q8)

Saw specialist (yes/no), months waited, travel minutes, specialist city (Q9)

Language barrier (yes/no, Q10)

Rating: ease of getting help (Q13)

Caregiving hours per day (Q14)

Last full day off (Q17)

Financial cost (yes/no, Q18)

Rating: feeling supported (Q20)

Ever asked to join research (yes/no), said yes (yes/no) (Q21)

Peer inviter would matter (yes/no/somewhat, Q24)

Rating: trust in research (Q25)

Rating: confidence about next year (Q30)

Willing: contact again, group, photo, public with name, peer contact (Q32, five columns)

Top ask for the council (short phrase, Q27)

Top research question (short phrase, Q28)

Resource named (Q29)

Best quote (short phrase and the question number it came from)

STEP 6. THE CHECKLIST BEFORE YOU START

Consent. A one-page form that says who you are, what the interviews are for, that they are recorded, how recordings are stored, that names are not attached to quotes without written permission, and that they can stop or skip anything. Email it with the invitation; get it back signed or acknowledged before the interview. Ask the research partner whether interviews that feed a council study need institutional review before you begin. Better to ask now than to have 25 interviews you cannot use.

Compensation. We agreed at the retreat that fair incentives are part of doing this right. Decide the amount and say it in the invitation.

Storage. Recordings live in the project Google Drive, in a folder shared with one backup person. Files are named by interview number, never by name.

Who you interview. Aim for a mix: different cities including outside the metro areas, diagnosed and undiagnosed, spouses and adult children, paid and unpaid caregivers, and the languages your community actually speaks. Write the target mix down before you start recruiting so you can see who is missing at interview 15.

Where they come from. Support groups, CHWs, churches and mosques, the Alzheimer's Association, clinic waiting rooms with permission, and word of mouth from the first few interviews. Members who have "been through it" are your best recruiters.

STEP 7. WHAT WE DO WITH 25 (OR 75)

The [N] questions give about 20 numbers per person. Across 25 that is enough to say, for example, the average family waited X months between the first sign and telling a doctor, and Y months for a specialist, and Z percent had never been asked to join a study. Across three councils we can compare those numbers by community, city and language.

The [T] questions get coded as a group. The council reads the answers to one question across all 25, names the themes that repeat, and counts how many people fall in each. That is a CPAR method when the community does the coding, and it is the same thing we did in the data interpretation workshops.

The [M] questions become products without any extra study: the signs handout in our own words (Q6), the peer-recruitment script (Q23, Q24), the community statement for DPRIT and UT leadership (Q26), the research question pool for the council vote (Q28), the shared directory (Q29), and the list of caregivers willing to do photovoice, story sharing or peer navigation (Q32).

TIMELINE I AM WORKING TO

Weeks 1 to 2: project email, form, sheet, consent form, compensation decided, target mix written down.

Weeks 3 to 8: recruit and interview, roughly four a week, sheet updated same day.

Week 9: council coding workshop.

Week 10: one-page summary of findings and the first draft of the products above.

If your council starts within a month of me, we can run the coding workshop together and compare across communities before the end of the year.

Send me a message to get help setting this up for yourself and your council.