Understanding Alzheimer’s: A guide for caregivers

When someone you love is diagnosed with Alzheimer’s disease, it can feel overwhelming. You may have questions about what the diagnosis means, how the disease will progress and how your relationship may change as you step into a caregiving role. 

At Banner Health, we support both patients and caregivers. Understanding what to expect can help you feel more prepared and more confident as you move forward together. 

Helping your loved one understand an Alzheimer’s diagnosis 

One of the hardest early decisions caregivers face is whether to tell their loved one about the diagnosis. 

There is no single right answer. The decision often depends on your loved one’s stage of disease, personality and ability to understand the information. 

Reasons some families choose not to share the diagnosis

• Knowing may cause distress or hopelessness 
• It may increase anxiety or fear 
• The person may not remember the conversation 
• You may feel it will not change daily care 

Reasons some families choose to share the diagnosis 

• Your loved one has a right to know about their health 
• They may already sense something is wrong 
• It allows them to participate in future planning 
• They can help make decisions about long-term care and advance directives 
• It may provide relief to have an explanation 

If your loved one is in the early stage and can understand the information, consider these tips: 

• Ask their provider to explain the diagnosis and treatment options 
• Use clear, simple language 
• Adapt your explanation to their level of understanding 
• Focus on reassurance and support 
• Avoid repeating the diagnosis if it causes distress 

If your loved one is in a later stage, they may not fully understand or retain the information. In those cases, emotional comfort may matter more than detailed explanations. 

Sharing the diagnosis with family and friends 

An Alzheimer’s diagnosis affects more than one person. Friends and family members will also need support and guidance. 

Sharing the diagnosis helps others understand what to expect and how to respond in supportive ways. 

Consider these steps: 

• Share educational resources about Alzheimer’s disease 
• Talk to children in an age-appropriate way 
• Encourage patience and understanding 
• Remind others not to take confusion or frustration personally 
• Be honest about your own emotions 

As Alzheimer’s progresses, relationships will change. Helping others understand the disease can reduce misunderstandings and protect your loved one’s dignity. 

How Alzheimer’s affects communication 

Alzheimer’s disease changes the brain over time. As nerve cells stop communicating and begin to die, memory, language and behavior are affected. 

Alzheimer’s may impact: 

• Memory and thinking 
• Language and communication 
• Personality 
• Behavior 
• Insight and judgment 

Early-stage Alzheimer’s 

You may notice: 

• Difficulty finding the right words 
• Repeating stories or questions 
• Mild memory lapses 

Middle-stage Alzheimer’s 

You may notice: 

• Trouble expressing thoughts 
• Difficulty understanding new information 
• Increased confusion or frustration 

Late-stage Alzheimer’s 

You may notice: 

• Limited verbal communication 
• Withdrawal from conversation 
• Difficulty recognizing needs like hunger or fatigue 

Because these changes happen gradually, communication strategies must evolve over time. 

Building better communication after diagnosis 

Communication is essential for both emotional and physical health. Even as words become harder, connection remains possible. 

As Alzheimer’s progresses, behavior often becomes a form of communication. A loved one may act out feelings they can no longer explain in words. 

While verbal skills decline, the ability to recognize nonverbal cues often remains strong. Tone of voice, facial expression and body language may matter more than the exact words you use. 

Tips for positive communication 

• Make eye contact and use their name 
• Speak calmly and clearly 
• Use short, simple sentences 
• Give one instruction at a time 
• Offer yes-or-no choices when possible 
• Use gentle touch for reassurance 
• Hold their hand while speaking 

Your posture, tone and facial expressions often communicate more than your words. 

For detailed examples of phrases to avoid and supportive alternatives, read our blog: 
What Not to Say to Someone With Alzheimer’s and What to Say Instead. 

Handling difficult moments in public 

Some caregivers find it helpful to carry a small explanation card for public situations. 

A simple message such as:
“My loved one may say or do something unexpected due to Alzheimer’s disease. Thank you for your understanding.” 

This can prevent embarrassment and reduce stress without discussing private details in front of your loved one. 

You are not alone 

The most effective communication strategies will change as Alzheimer’s progresses. Learning how to adapt can strengthen your connection and reduce frustration for both of you. 

Banner Health offers caregiver education, memory care resources and support services to help you navigate every stage of Alzheimer’s disease. 

Make an appointment or explore caregiver classes to get the guidance and support you deserve.