Do you remember . . ?
Instead of the connection you are seeking, this question becomes a frustrating experience when they do not “remember”. There is no evidence to say that prompting the person helps them recall or hold on to memories. It is pleasant and comforting to talk about the past and joint memories. With dementia, it is helpful for the caregiver to lead the conversation and allow the person to join in as they can on their own.
What to do: Instead of posing a question, try ‘remember when…’ and talk about your memory. The person can search their memory calmly without embarrassment and contribute if they like. They can still take pleasure/comfort, even if only for the moment, in the fact that they play a part in your memories.
Don’t Correct
When a person says something known to be untrue, our first impulse is to correct them. This is distressing for the person with dementia. They are as convinced in their belief as you are in yours. The fact that they have no evidence for the statement they made, does not make any difference to them.
As dementia progresses, the person has more and more difficulty reasoning and accepting logic. Their brain can no longer process information as it once did. The circuits are no longer there. It is not possible to convince them their belief is incorrect. Insisting on correction nearly always leads to confusion, arguments and bad feelings.
What to do: If the belief behind their statement is not causing harm or anxiety, let it slide. If the belief causes distress, remind them they are safe with you. Keep your voice, body language and facial expression calm and reassuring. Encourage the person to shift their focus onto something they enjoy. Distract with an offer of a snack, change the conversation to a topic they enjoy, or turn on music or a favorite tv show.
“Too many words”
‘Let’s have scrambled eggs for breakfast now, then after that we can go for nice walk along the brook and get lunch at that little place next the supermarket and I’d like to grab a few groceries before we head home .’ If I had said that, even early in our journey, Wheels would look at me and say “too many words”.
Long, complex sentences can be difficult to grasp even if the person does not have dementia. However, for somebody with Alzheimer’s or PPA/FTD or other dementias, it is difficult to process several ideas at once. Cognitive abilities have slowed down. If there are vision or hearing problems, it is more difficult to communicate. You may have the entire day planned. But talk about only one step at a time. (This also has the advantage of allowing a change of plans without causing disappointment or upset.)
What to do: Use short, simple sentences as much as possible. Try to avoid speaking in loud or busy environments. Wait until you have the person’s full attention before you start. During a conversation, watch the person to make sure they have had enough time to process what you are saying. It’s fine if the person needs you to speak slower than usual, but try to keep your tone of voice pleasant and the same as with anyone else.
Consider how to answer when your loved one asks about someone who has passed.
This question comes up frequently in caregiver forums. A person living with dementia may forget about a family member’s passing, even if it happened before their dementia onset. They may ask for somebody who recently died. Reminding them of a loved one’s death is often very painful no matter how long ago or how recent. The most common reaction of the person with dementia is as if hearing the news for the first time. They truly do not remember. Some may also feel upset that they forgot.
How to respond to these types of difficult questions will vary, but it’s always important to minimize distress and to be sensitive to their possible reaction. If this is a recurring question, with a similar distressed response you might choose to handle it differently than if it suddenly pops up out of the blue. If, after a period of time, they continue to ask and be distressed – once again – at the news of the particular person’s passing, it is okay to say something like: they aren’t here right now, but I expect they are doing fine. Someone online always bristles at this, saying it is a lie. I consider it a truth and a kindness to not keep repeating the emotions of loss.
What to do: For some people, encouraging them to talk about the person they are asking about can be comforting. Ask questions. Find out how the person is feeling. Sometimes asking about a particular family member or friend is because the person has an unmet need, such as comfort, companionship or reassurance. Distraction techniques can also be useful, but if they ask repeatedly over a period of time, answer in the way you deem best, because not acknowledging the concern can cause the person to feel more anxious.
Open-ended questions are tricky: ‘What did you do today?
Avoid such questions about even the recent past, as it could be stressful for a person with dementia if they don’t remember. While it is polite to ask somebody about their day, it’s better to focus on what’s happening now.
What to do: Speak briefly about your day and give them time to ask you questions. They might then offer information about what they have done. Talk to them about the present or use items in the environment, such as photos, to begin a conversation.
Control your emotions
It is extremely upsetting to keep answering the same question over and over and over. However, reminding the person with dementia that you just answered that question will not help them retain information for the next few minutes, let alone until tomorrow. “That” tone of voice is more likely to remind them of their condition. This is very distressing for both of you. Keep in mind, they do not recall asking once – and certainly not a dozen times in the past hour.
What to do: Remember the person cannot help themselves. Their brain is broken. However, their sense of needing to feel heard and understood is still there. Answer repeated questions calmly and patiently, with an even tone of voice. You might try distracting with an appropriate referral to the clock, pointing out an event. Or show them dinner in the oven. Your distraction needs to relate somewhat to the question. Or not – bring up a totally different topic in your calm, non-accusatory voice and see what that does. If you feel the need, remove yourself from the conversation for a while. Just don’t stomp off angrily!
Some questions feel like a demand: “Do you know me?”
It can be distressing when somebody with dementia doesn’t recognize you, especially if you have a close relationship. Remember it is likely to be equally upsetting for them to not recognize people who are around them. Asking the person if they know who you are can make them feel guilty or anxious if they don’t remember or offended if they do.
What to do: The way you greet somebody with dementia might change depending on their abilities that day. Judge for yourself but keep it friendly. A warm hello could suffice. Wheels’ mother had Alzheimer’s but she always knew her family members. It also helped that his sister would prepare her for visits in advance. Often you can tell by how alert the person is when you first see them. If it has been quite awhile , if they seem less alert or they are distracted, it may help to say your name and your relationship to them.
Remember: There is a person behind the dementia.