What Should I Keep Track of When Caring for Someone With Dementia?
When someone is living with dementia, small changes can become important information.
But when you are the person providing care every day, it can be difficult to remember exactly when something started, how often it happens, what changed, or what helped.
You do not need to document every moment.
Focus on information that helps you communicate, coordinate care, notice patterns, and prepare questions for qualified professionals.
On this page
Observe Without Diagnosing
You may want to keep notes about meaningful changes you observe.
Depending on the situation, these may involve things such as memory, communication, sleep, eating, mobility, mood, or daily routines.
These are examples, not a complete list.
Record what you actually observed rather than trying to determine the cause yourself.
For example:
Instead of writing:
"They are getting much worse."
Write:
"Asked the same question six times during breakfast and seemed unable to remember the answer."
Specific observations can be more useful when communicating with healthcare professionals.
Know the Person's Normal Baseline
Change is easier to recognize when you know what normal looks like for this person.
Consider noting a few things about their usual routine, such as when they typically wake, what meals they prefer, and what a normal day looks like.
A basic sense of the baseline can help you recognize when something has changed.
Look for Patterns
When something unusual happens, consider noting what happened, when it happened, and what was happening beforehand.
The goal is not to diagnose the reason.
It is to create better information for the people involved in the person's care.
Keep a Few Things Current
A few types of information tend to matter most when sharing with healthcare professionals:
- Medications, including recent changes
- Appointments and instructions provided
- Changes you have observed
These are examples, not a complete tracking system.
The goal is to keep the most important information current enough that it is useful when you need it.
Make It Easier for Someone Else to Step In
Ask:
"If someone had to care for my loved one tomorrow, what would they need to know?"
Depending on the situation, that might include things such as the daily routine, medications, food preferences, and important contacts.
This article on what a family caregiver should keep in one place walks through how to think about that question.
Care information should not exist only in one caregiver's memory.
Questions to Bring to Professionals
Keep a running list.
You may want to ask about changes you have observed, medication questions, sleep changes, safety, or what changes should prompt a call or appointment.
When to Bring in a Professional
Changes involving health, medications, cognition, behavior, mobility, eating, sleep, mental health, or safety should be discussed with appropriately qualified healthcare professionals.
Do not use a tracking system to diagnose a medical condition or decide on treatment.
If there is an immediate medical or safety emergency, contact appropriate emergency services.
Remember This
You do not have to remember every change.
Write down what matters.
Record what you actually see.
Keep the questions.
Notice what helps.
That gives you better information to bring to the people helping you care for someone you love.
Important Information
Crisis Navigations provides educational and organizational information to help you identify questions, organize information, and prepare for potential next steps. This resource is not medical, legal, financial, tax, insurance, mental health, or other professional advice and should not be used as a substitute for guidance from an appropriately qualified professional.
Every situation is different. Information that applies in one circumstance may not apply to another. You are responsible for determining what is appropriate for your circumstances and when professional assistance is needed.
If you are experiencing a medical, safety, mental health, or other emergency, contact the appropriate emergency service or qualified professional.
Please review our for complete information about the scope and limitations of Crisis Navigations resources.
From Observing Changes to a Complete Tracking System
This Resource can help you understand what may be worth watching. The Dementia Companion Guide™ provides the structured system for capturing a baseline, logging changes over time, organizing medications and medical information, tracking legal documents, planning for safety, and keeping every observation together in one private place you can share with the care team.
Explore The Dementia Companion Guide™