1. Information You Choose to Share with Coco Cares Collective
When you begin a conversation with Coco Cares Collective, we may ask for information such as your name, email address, telephone number, relationship to the person receiving care, where you are in the dementia journey, caregiving circumstances, concerns or changes you have observed, areas in which you need support, and information you voluntarily provide in written responses or during conversations with us.
Some of this information may concern health, cognitive changes, dementia, caregiving, family circumstances, or other sensitive matters.
You are never required to tell us everything.
Please share only the information you believe is reasonably necessary for us to understand your situation and support your request.
Last updated: July 1, 2026
2. Information About Another Person
Many people who contact Coco are seeking guidance concerning a parent, spouse, partner, relative, friend, client, or another person living with or experiencing possible dementia.
We recognize that the information you share may therefore concern someone other than you.
We ask that you share only information reasonably necessary to explain the caregiving situation and avoid providing unnecessary identifying or highly sensitive information about another person.
Whenever possible, you may refer to the person by their relationship to you—such as "my mother" or "my husband"—rather than providing identifying information we do not need.
Last updated: July 1, 2026
3. Please Do Not Submit Certain Information
Our conversation form is not a medical-record portal.
Please do not submit Social Security numbers, banking or credit-card information, insurance identification numbers, passwords, copies of medical records, government identification numbers, or other highly sensitive information that Coco has not specifically requested.
If we need additional information to help navigate your situation, we will discuss that with you.
Last updated: July 1, 2026
4. How We Use Your Information
We may use information you provide to review and respond to your conversation request; understand where you are in the dementia-care journey; prepare for a scheduled conversation; communicate with you about scheduling or services; provide dementia education, navigation, and supportive guidance; identify relevant resources or organizations; suggest questions you may wish to raise with qualified professionals; provide Care Path Planning or Ongoing Support when requested and appropriate; improve the quality and usefulness of our services; maintain appropriate administrative records; and comply with applicable legal obligations.
We will not use the personal details of your caregiving experience as a public testimonial, case study, marketing story, or educational story without obtaining separate permission from you when permission is appropriate.
Last updated: July 1, 2026
5. Learning Without Keeping Your Story Attached to You
The questions families ask can help Coco understand where caregivers are struggling and what resources or education communities need.
Where appropriate, Coco may use de-identified or aggregated information to improve our resources, educational programs, training, or understanding of caregiver needs.
For example, we may learn that many families are seeking help with repeated questioning, bathing, family disagreement, or finding appropriate care.
Our goal is to learn from patterns without unnecessarily preserving the identity or personal story of the family behind them.
Last updated: July 1, 2026
6. We Do Not Sell Your Dementia-Support Information
Coco Cares Collective does not sell the personal information you provide through our dementia support and navigation services.
We do not provide your personal caregiving story to advertisers for their independent advertising purposes.
This commitment is especially important because FTC guidance warns organizations collecting health information to understand their data flows and avoid undisclosed or misleading uses of health information, including advertising-related disclosures.
Last updated: July 1, 2026
7. Who May Have Access
Access to detailed conversation information should be limited to Coco Cares Collective personnel or authorized individuals who need the information to review your request, prepare for your conversation, provide the requested service, administer the service, or maintain the systems supporting it.
We may also use technology providers necessary to operate our website and services.
Our website currently uses Wix, which provides website hosting, forms, databases and related technology. Information submitted through Wix Forms is stored within Wix's form-submission systems. Wix maintains its own privacy and security practices and may process information through infrastructure and service providers in multiple locations.
Other service providers may include scheduling, email, payment, videoconferencing, or other technology services used to deliver the service. As Coco's technology changes, we will update this notice as appropriate.
Last updated: July 1, 2026
8. Scheduling and Calendar Privacy
We intentionally limit sensitive information placed in appointment titles, calendar invitations, reminders, and similar scheduling communications.
Detailed dementia or family information belongs in the appropriate conversation record—not unnecessarily in a calendar invitation.
Last updated: July 1, 2026
9. How Long We Keep Information
Coco believes sensitive caregiving information should not be kept indefinitely simply because it was once provided.
As an initial operating practice, we intend to retain detailed dementia-navigation and conversation information for up to 12 months following your last substantive interaction with Coco, unless a longer period is reasonably necessary for an ongoing service, legal obligation, dispute, safety matter, or another legitimate business purpose.
After that period, detailed information may be securely deleted or de-identified.
Certain limited administrative records—such as transaction, scheduling, consent, or business records—may need to be retained separately for longer periods where reasonably necessary or legally required.
We will periodically review this retention practice as our services and legal obligations evolve.
Last updated: July 1, 2026
10. Security
We take reasonable administrative and technical measures intended to protect the information entrusted to us and limit access to people who have a legitimate reason to use it.
Wix states that records in its database systems are encrypted on disk and that it provides additional application-level protection for certain personally identifiable information, while also emphasizing that appropriate access permissions remain necessary.
No website, email system, cloud service, or electronic transmission can be guaranteed to be completely secure. We therefore do not promise absolute security.
We instead commit to handling the information we collect in a manner appropriate to its sensitivity and to periodically reviewing our practices as Coco's services develop. FTC guidance similarly emphasizes security appropriate to the nature of health-related data an organization possesses.
Last updated: July 1, 2026
11. HIPAA and the Nature of Coco's Services
Coco Cares Collective provides dementia education, navigation, and supportive guidance.
Coco does not represent these services as medical diagnosis, psychotherapy, legal advice, emergency services, or a replacement for licensed healthcare professionals.
Submitting information through Coco's website does not by itself establish a physician-patient, therapist-client, attorney-client, or other licensed professional relationship.
HIPAA does not automatically apply to every organization that receives health-related information. The federal HIPAA Rules generally apply to covered healthcare entities and their business associates. Other federal and state privacy and consumer-protection requirements may still apply to organizations handling health-related information outside HIPAA.
Accordingly, Coco does not describe information submitted through these services as "HIPAA-protected" unless a particular service or relationship legally warrants that designation.
Last updated: July 1, 2026
12. Emergencies and Immediate Safety Concerns
Do not use the Begin a Conversation form for an emergency or an immediate threat to someone's safety.
Coco's forms and conversation services are not continuously monitored emergency services.
If someone is in immediate danger or requires urgent medical assistance, contact the appropriate emergency or healthcare service in your location.
Last updated: July 1, 2026
13. Your Choices About Your Information
You may contact Coco Cares Collective to ask questions about the personal information we maintain about you, request correction of inaccurate information, or request deletion of information where appropriate and subject to applicable legal or operational requirements.
Depending upon where you live, applicable law may provide additional privacy rights.
We will evaluate requests in accordance with applicable law and our legitimate need to maintain certain administrative or legal records.
Last updated: July 1, 2026
14. Cookies, Analytics and Website Technologies
The Coco website may use cookies, analytics, and other technologies associated with Wix and services configured on the website.
Because browsing behavior on health-related pages can itself reveal or permit inferences about health interests, we will treat decisions about tracking and advertising technologies on dementia-support pages with particular care. FTC guidance specifically notes that health information can extend beyond diagnoses and treatments to information that enables health-related inferences.
Our general website Privacy Policy and cookie settings provide additional information about website-wide technologies.
Last updated: July 1, 2026
15. Children's Privacy
Our Dementia Support and Navigation services, including Begin a Conversation, are intended for adults age 18 and older. We do not knowingly use these services to collect personal information directly from children.
We recognize that children and teenagers may also be affected by dementia in their families and may sometimes participate in caregiving.
If Coco develops resources or services specifically for younger caregivers in the future, we will establish appropriate consent, safeguarding, and privacy practices before collecting their personal information.
Last updated: July 1, 2026
16. When Information May Need to Be Disclosed
We may disclose information when reasonably necessary to comply with applicable law, respond to valid legal process, protect the rights or security of Coco Cares Collective or others, address fraud or misuse of our services, or respond appropriately to circumstances involving serious and immediate safety concerns, subject to applicable law.
We will not represent that every conversation is absolutely confidential when circumstances may legally require or permit disclosure.
Last updated: July 1, 2026
17. Changes to This Notice
As Coco Cares Collective's dementia-support services, technology, partnerships, and legal obligations develop, this Privacy Notice may change.
When we make material changes, we will update the Last Updated date and provide additional notice when appropriate.
Last updated: July 1, 2026
18. Contact Us
Questions about this Privacy Notice or requests concerning your information may be directed to:
Coco Cares Collective
Chicago, Illinois
Email: [privacy/contact email]
Website: cocoandthenovas.com
Last updated: July 1, 2026