Communicating with those with cognitive decline can be challenging for their caretakers, but even more so for the patient. Awareness of what you are trying to say and what the patient hears or understands can be far apart.
In this article, we describe situations where this disconnect can occur to provide a guide for communication between caretakers and patients with dementia.
1. ‘Don’t you remember?’
Among those experts who know, this question is, perhaps, the worst question you can ask someone with dementia. It can be frustrating and embarrassing for someone with memory issues. Not remembering is a central symptom of their condition. To whatever level the patient has this condition, it is uncomfortable to be reminded about it. It can make them feel inadequate or upset about their cognitive decline. Also, forcing the person to acknowledge that they don’t remember something makes them feel bad.
2. You already told me that.
Obviously, the patient does not remember what they said before. To suggest that they forgot can only make them feel embarrassed or frustrated. Further, what is there to gain by correcting them?
3. ‘Let me do that for you’
One of the most challenging parts of dementia is realizing each day that certain tasks can no longer be done alone. It can be difficult, but sometimes, not giving assistance is more affirming, especially when the task is not risky or costly. It is best to avoid arguing or reasoning with someone with dementia, as it will likely anger and agitate them.
Often, well-meaning individuals might jump in to take over tasks without asking or assessing if necessary, reducing the person’s sense of autonomy. Instead of assuming they can’t do something, it’s more respectful to offer help, let them tell you if they need it, and allow them to still do the things they can for as long as possible.
4. ‘You’re wrong’
It is best to avoid arguing or reasoning with someone with dementia, as it will likely anger and agitate them. For example, correcting them has no real value if they believe it’s Thursday and not Wednesday. Maintaining peace is far better than being right.
5. ‘Would you like to make plans for next week?’
Dementia patients often lose their sense of time, making it difficult for them to understand future appointments or plans. Therefore, asking for their opinion or expecting them to remember specific times can frustrate you and the patient. To prevent this, it’s important to have someone else remember or write down the plans and ensure they don’t conflict with other activities such as medical appointments.
6. ‘You shouldn’t feel that way’
It’s important to validate a dementia patient’s feelings. You might not even understand those feelings but dismissing them in a way that the patient cannot respond only heightens the frustration.
7. ‘You seem fine’
Society often holds preconceived notions regarding the appearance and behavior of individuals with dementia. When someone doesn’t fit this stereotype, it may be seen as a compliment to say, “It does not seem like you have dementia.” However, using this phrase can minimize the daily challenges and experiences of the individual. It’s crucial to understand that symptoms and experiences can vary significantly among people living with dementia, and there is no single “look” or “act” associated with the condition. This diversity should be acknowledged and respected.
8. ‘I just told you that’ or ‘You already told me that’
Instead of asking upsetting questions or pointing out repetitions, it’s better to gently guide the conversation in a new direction or respond as if it’s new information. This can help prevent frustration and maintain a positive interaction. This is particularly true during the intermediate stages of their illness, when patients may experience moments of awareness that their brain is not functioning correctly.
9. ‘How have you been feeling this week?’
This question might seem innocent but could do more harm than good. We often ask each other questions like this, but someone with dementia might not remember how they felt five minutes ago, let alone yesterday or earlier in the week. They may make something up to satisfy you, or they might get frustrated or angry.
10. ‘You’re not making any sense’
Criticizing dementia patients’ communication can harm their self-esteem and discourage them from expressing themselves. Showing patience and making an effort to understand their perspective helps to maintain their dignity and encourages open communication.
11. ‘You used to know this’
Such a statement can only remind a dementia patient of their struggles and losses. Furthermore, what is to be gained by doing so other than a put-down?
12. ‘Do you remember …?’
It’s best to avoid asking if the person recalls specific information, such as a name, date, or event, as it can put the person on the spot and feel like a test. Instead, start by introducing yourself, for example: “Hey, Grandpa, it’s Katrina, your granddaughter!” It might feel strange initially, but it will put your loved one at ease by reminding them of your name and connection to them. The same goes for events or memories. Instead of asking if they remember, start with “I remember when…” and continue with your story. Those with dementia love reminiscing, but you shouldn’t frame it as a test.
13. ‘I already explained that’
Not only does this come off as dismissive and may cause frustration, but if the dementia patient remembered what you explained, they would not have asked. Just condense your earlier answer into simple terms and repeat yourself.
14. ‘It’s not that hard’
This minimizes the struggle of dementia patients and can make them feel inadequate. It also shows a shallow understanding of dementia and a lack of empathy.
15. ‘You’re being difficult on purpose’
It may be obvious, but this is dramatically wrong. This phrase is hurtful and dismissive. It completely ignores the fact that behavioral challenges are a result of dementia itself, not intentional actions by the patient. Using empathy and understanding instead of frustration is crucial in managing these situations. Understanding that challenging behaviors are often a symptom of the disease can help respond with patience and empathy.
16. Using words like ‘bib’ or ‘diaper’
As dementia progresses, caregivers may need to start using products to help with incontinence and to make mealtimes easier. Using more positive language for these products, such as “protective underwear,” “cloth,” or “apron,” is less negative. Even in dementia, the patient can recognize these items as being associated with helplessness.
17. ‘Remember, she died last year. We went to the funeral…’
It can be upsetting to remind someone with dementia about the death of a loved one, as they may not remember this information, and it can trigger repeated grief responses. A helpful approach is to acknowledge the person they are thinking about and ask if they have a favorite memory of that person. For example, saying, “It seems like you are really thinking about Uncle Bill today. Do you have a favorite memory from when you two were kids?” can be comforting to bring the deceased person into the present.
18. ‘That’s not how it happened’
Dementia can lead to confusion and altered perceptions of events. Correcting someone with dementia can heighten their distress and confusion. When caring for someone with the disease, it is important to consider whether being “right” is so important. Instead, it is better to validate and gently guide their experiences rather than insist on being correct.
19. ‘Do you want to [insert an activity]?’
Please keep in mind the following: In some cases, posing activity options as a question can led to confusion for a dementia patient. If you are the primary caregiver responsible for your loved one’s toileting, showering, feeding, or sleeping schedule, instead of asking, “Do you want to…?”, try saying, “Let’s go to the bathroom/shower/kitchen…” Making a clear statement will reduce the amount of processing required from the patient to respond. Also, if you genuinely want an answer, be prepared for the patient to disagree with your statement.
20. ‘What would you like to (eat/wear/do) today?’
Open-ended choices can often confuse or frustrate dementia patients. They may also struggle with remembering information, such as the weather, and may be unable to decide what clothing to wear. A better approach might be to offer a limited choice, for example, “Here’s a red sweater and a blue one. Which one would you rather wear?” However, even this limited choice could be challenging for a dementia patient.
21. ‘Get your coat and shoes, grab your bag and meet me by the door’
Long sentences with multiple parts or commands can be overwhelming and confusing for someone with dementia. Providing one short direction or piece of information at a time is more successful. It is best to pause between each instruction and guide the person through the task, if needed, before starting the next.
22. ‘Just try harder’
This implies that overcoming the patient’s condition is a matter of willpower. No amount of “wanting” will diminish dementia.
23. ‘You must be confused’
It is disheartening and does not benefit either party.