How to explain dementia to a person with dementia? A compassionate guide

According to the Alzheimer's Association, more than 6 million Americans are living with Alzheimer’s disease, the most common form of dementia. Learning how to explain dementia to a person with dementia requires patience, empathy, and tailored communication, focusing on the individual's remaining abilities and emotions rather than a clinical diagnosis.

Quick Summary

Use sensitive and empathetic communication tailored to the individual's cognitive abilities and emotional state. Focus on the person's feelings and daily experiences rather than the technical diagnosis. Acknowledge and validate their concerns with simple, clear language, providing reassurance and support without minimizing their reality.

Key Points

• Prioritize Comfort Over Fact: When explaining dementia, prioritize the individual's emotional comfort over absolute factual accuracy to avoid causing distress and confusion.

• Validate Their Feelings: Acknowledge and validate the person's emotions like frustration or fear, which builds trust and addresses their distress directly.

• Keep Communication Simple: Use short, clear sentences and avoid complex medical jargon when talking about their condition to make it easier to understand.

• Adapt to Their Reality: Meet the person where they are mentally, especially in later stages, by engaging with their current perceptions rather than correcting them.

• Repeat with Patience: Be prepared to repeat explanations calmly and without frustration, as memory loss means they may forget the conversation shortly after it happens.

• Use Visual Aids: Incorporate visual cues, such as gestures or photos, to supplement your verbal communication and reinforce your message.

Understanding the Person's Reality

Before attempting to explain dementia, it's crucial to understand the individual's perspective. Their perception of reality may be fragmented or different from yours. They may be aware of memory lapses and confusion, leading to frustration, anxiety, or sadness. Conversely, they may be completely unaware of their condition. Your approach must be flexible, adapting to their current emotional and cognitive state.

Prioritizing Emotional Comfort over Factual Accuracy

For many people with dementia, particularly in later stages, strict factual accuracy can be upsetting and pointless. Constantly correcting them or re-explaining the diagnosis can cause distress. For instance, if they believe they are waiting for a person who has passed away, it can be kinder to meet them in their emotional reality rather than insisting on the truth. The goal is not to win an argument but to provide comfort and alleviate anxiety.

The Importance of Validating Feelings

When a person with dementia expresses confusion or distress about their memory, validate their feelings. You can say something like, "I can see that this is frustrating for you." This acknowledges their experience without directly challenging their perception. By validating their emotions, you build trust and reduce feelings of isolation. Providing comfort through non-verbal cues, such as a gentle touch or a reassuring tone, can also be highly effective.

Techniques for Effective Communication

Communication is the most powerful tool a caregiver has. Here are specific techniques to make conversations more successful:

• Keep it Simple: Use short, simple sentences and one piece of information at a time. Avoid complex explanations and medical jargon. For example, instead of saying, "The tests showed you have Alzheimer's disease, which is a type of dementia," you could say, "The tests showed some changes in your brain, which is why your memory is a bit mixed up sometimes.".
• Meet Them Where They Are: If the person reverts to an old memory, engage with that memory rather than trying to pull them back to the present. If they are worried about a childhood friend, you might talk about that friend instead of reminding them that the person is gone.
• Use Visual Cues: Visual aids can supplement verbal communication. Pointing to items while discussing them, showing photos, or using gestures can reinforce your message.
• The Power of Storytelling: Familiar stories or reminiscing about their past can be a soothing way to connect. Engage them by asking about things you know they remember fondly, which can build positive feelings.

Comparison of Communication Strategies

Strategy	Appropriate for Early Dementia	Appropriate for Mid-to-Late Dementia
Direct, Factual Explanation	Often appropriate if the person has retained insight and asks directly for an explanation.	Potentially distressing and usually ineffective; their memory and cognitive abilities may not retain the information.
Emotional Validation	Always appropriate; acknowledges their feelings and fosters trust.	Always appropriate; focuses on their emotional experience and provides comfort.
Meeting Their Reality	May be used to avoid conflict, but factual discussion may still be possible.	Most effective strategy to prevent distress and create a sense of safety and calm.
Simple, Repetitive Language	Good for reinforcing information and reducing confusion.	Essential for all communication; complex ideas will be lost.
Using Visual Cues	Helpful for reinforcing memory and aiding understanding.	Often very effective, as visual memory can outlast verbal memory.

Creating a Positive and Reassuring Environment

How you communicate is as important as what you say. A calm and positive tone of voice can be more reassuring than the specific words you use. Remember that a person with dementia can still read emotions and body language. A compassionate, loving, and patient demeanor will create a sense of safety, even if they can't fully grasp the details of their condition.

Responding to Repetitive Questions

One of the most common challenges is repetitive questioning. The key is to respond with patience and reassurance each time, without expressing frustration. For instance, if they repeatedly ask about a deceased spouse, respond gently each time, perhaps with a simple, comforting statement, rather than reminding them of the death again and again.

The Role of Activities and Routines

Maintaining familiar routines and engaging in simple, enjoyable activities can reduce confusion and provide a sense of stability. Discussing the activities you are doing together, like baking a favorite recipe or gardening, can be a non-threatening way to connect and manage daily life.

The Continuous Nature of the Conversation

Explaining dementia is not a one-time event. The conversation will likely need to be revisited and re-framed repeatedly as the disease progresses and as the person's understanding changes. What they grasped yesterday, they may not remember today. Patience is paramount, and adapting your approach as the illness evolves is critical.

Conclusion

Navigating how to explain dementia to a person with dementia is a deeply sensitive process. It requires moving beyond the need for factual recall and embracing an approach centered on emotional validation, comfort, and simple, compassionate communication. By prioritizing their emotional well-being and adapting your methods to their changing cognitive state, you can foster a reassuring environment. This approach, which focuses on their present feelings and comfort, can make a difficult journey more manageable and dignified for both the individual with dementia and their caregiver. For additional resources and support, caregivers can explore organizations like the Alzheimer's Association.

Note: The effectiveness of these techniques varies depending on the stage and type of dementia. Always consult with a healthcare professional or a dementia specialist for personalized advice.

List of Recommended Communication Practices

• Use simple, direct language: Avoid medical jargon and complex sentence structures.
• Maintain a calm and gentle tone: Your non-verbal cues are often more impactful than your words.
• Validate feelings: Acknowledge frustration, sadness, or confusion, and offer reassurance.
• Use visual cues and props: Point to objects or use photos to aid memory.
• Repeat information patiently: Expect and prepare for repetitive questions without showing frustration.
• Distract rather than argue: If they are distressed about a non-factual belief, redirect their attention to something pleasant.
• Use reminiscence: Talk about positive memories from the past to foster connection.
• Give one instruction at a time: This prevents overwhelming and confusing the person.

Optional Outbound Link

For more detailed information on communicating with someone with dementia, visit the Alzheimer's Association website.

Frequently Asked Questions

What is the best way to start the conversation about dementia?

Start by finding a calm, quiet, and comfortable setting. You might begin by gently asking the person if they have noticed any changes and if they are concerned about anything, rather than immediately stating the diagnosis.

Should I be completely honest about the diagnosis?

The level of honesty depends on the individual's stage of dementia and their capacity to understand. In early stages, direct honesty may be helpful. In later stages, prioritizing emotional comfort over stark facts is often more compassionate and less distressing.

What if they don't remember the conversation?

It is normal for people with dementia to forget previous conversations. You may need to repeat the explanation with the same patience and simple language. The focus should be on their current feelings and providing reassurance in the moment.

How can I explain memory loss without causing anxiety?

Frame memory changes as part of a normal aging continuum, emphasizing that much of their brain is still functioning well, especially in early stages. Focus on providing support for the specific difficulties they are experiencing.

How do I deal with repetitive questions about their condition?

Respond patiently and with reassurance each time. You can use a simple, consistent answer and avoid showing frustration. Often, the person is seeking comfort, so focus on providing that rather than a new factual explanation.

What if they get angry or upset when I mention dementia?

If they become angry or upset, it is best to stop the conversation and change the subject to something more pleasant. Revisit the topic later if necessary, and focus on validating their feelings in a calm and non-confrontational manner.

Are there certain words I should avoid using?

Avoid using overly clinical or technical terms like 'cognitive decline' or 'neurological disease.' Instead, use simple, relatable language like 'the brain is having some trouble remembering things' or 'your thoughts are a bit mixed up.'