Many times, when someone knows what I do for a living, they have questions.
I'm always happy to help.
They often ask about a challenging situation they are facing regarding a client or a loved one who has early-stage dementia. My answers to their questions are never definitive because no two people or no two circumstances are the same. But general rules of thumb always apply including using person-centered care and dementia stages as our road map to discover solutions, and always meeting the person where they are in their dementia progression. This means we don’t lose focus on the person, their individual wants, needs and preferences, and we understand that it is us who must adapt, because the person with dementia does not have the ability to do so.
As I listen, I also hear a common challenge faced by most: there is difficulty understanding when functional or personality changes are a symptom of the disease and not something the person with dementia is doing on purpose. But this understanding and empathy is vital for everyone to be able to successfully coexist and live well with early-stage dementia.
When an adult or elder is experiencing cognitive decline related to dementia, the changes will impact how they function and behave. This is the nature of the disease.
The way the care partner or loved one responds is a critical moment, making all the difference as to what happens next. Think of our response as being the catalyst for setting up the likelihood of a good or a bad outcome.
Below are some of the most common questions I am asked by those who have a loved one or client who is experiencing symptoms of early-stage dementia. I provide some thoughts and tips for handling these situations to create the best outcome for all.
For the record, I don’t believe quick tips to be enough because they don’t empower someone with the knowledge and skills to think through and handle situations. As the famous expression goes, “Give a man a fish, feed him for a day. Teach a man to fish, feed for a lifetime.” That’s why we created Dementia Capable Care training for staff and Dementia Capable Care at Home: for Families* education. But hopefully you will find the suggestions below to be helpful. If you do, please share this blog with others.
What do I do or say when someone with early-stage dementia repeats him/herself?
Answer the question patiently, as many times as needed. Then, if appropriate, address the reason for the repeated question. This may diminish, or even stop the repeated questions.
“My husband asked me the same question three times in the past 5 minutes. It is so annoying and aggravating. What do I do?”
Even though this is difficult, I would suggest you answer the question each time, trying your best to avoid becoming impatient. It’s important to recognize this isn’t something the person is doing to aggravate you. They are asking multiple times because due to dementia, they can’t remember your answer.
If the nature of the question has something you can do to help reduce the need to ask, try it. For example, if your husband is asking where something is, try leaving it out or labeling drawers to help him find it. If he is asking what he should do or where he should go, try developing a familiar routine or route, and stick with it. When possible, avoid change. Building routines and routes from what the person finds familiar, is best, whenever possible.
What do I do or say when my client or loved one living with early-stage dementia makes up stories, telling me something I know isn’t true?
Don’t argue or try to correct. Best to enter their reality and just go with it, especially if the story doesn’t seem to represent anything of great concern. But, if there is a concern, try to address the reason behind the stories. This could help diminish or even stop the story telling all together.
“My wife just told me she was helping the kids to get ready for school today and yesterday she told me she was visiting with her mom. She is clearly making that up and it frustrates me. I told her I know it isn’t true because our kids are grown, and her mom is dead.”
I would suggest you try to patiently listen to her stories, while resisting the need to correct. She is doing the best she can. Due to her dementia, at times, she may find herself living in the past and engaging her long-term memory. She may not be able to recall that her kids are grown, and her mom has passed away.
If she can’t remember that her mom has passed and you tell her, it may create much sadness as for her, it is like hearing that news for the first time. If not harmful, just enter her reality. Join her in her journey, without needing to correct.
If she is sharing these stories frequently, or if the stories are causing her distress, it may be helpful to figure out if there is a reason she is spending time with those memories. Is she bored? Is she missing a purpose (e.g., taking care of the kids) or is she missing love, comfort, or security (given to her by her mom or her kids)?
Sometimes, we can find a reason for these “stories” as there is an emotional need the story is helping to fulfill. In that case, we try to bring to her what she needs, in present day. Help her to stay engaged in activities at her best ability. Help her to feel loved, safe, and secure. This may diminish the stories.
What do I do or say when someone living with early-stage dementia wants to continue driving, but I know it isn’t safe?
There are a variety of approaches that could work. But first, it’s important to not ignore this problem when you see it. Indeed, someone could get hurt, therefore there are serious consequences.
Generally speaking, we want to balance helping the person to retire from driving with maintaining their independence. In other words, when they stop driving the car it shouldn’t mean they stop going to the places they want or need to go. We must help find another way for them to get there. That is important and it should be made clear at the time we address driving retirement. Also, I suggest families don’t go it alone but instead have a physician, other medical professional or driving assessor help deliver the news that it is time to retire from driving.
Think of it as a three-part solution:
- Have an empathetic and supportive conversation about the importance of driving retirement.
- Have that conversation with, or backed by, a professional.
- Be sure you can present a plan, at the same time, for how your loved one/the person in care will still be able to get out and do the things they want or need to do.
“My dad insists on driving and won’t hear of us taking the keys away, even though I’m scared to drive with him. He makes a lot of dangerous decisions and I think it is just a matter of time before he hurts himself or someone else. I told him it’s time and he said, “Over my dead body!” I took the keys away and he got so angry. What do I do now?”
Don’t go it alone. Make sure your dad has been assessed by his doctor or a driving professional. I’d suggest you have one of them deliver the news, not you. Your role then is about helping your dad not feel as if he is missing out on anything by retiring from driving. Make sure all the basic things he wants or needs to do that requires driving are met.
Can you or another family member or friend all commit to taking turns driving him to his appointments or leisure activities? Can you even create a social event to sweeten the pot occasionally like grabbing lunch after his errand? If so, create a schedule that everyone feels is realistic and share it with your dad at the same time he is told it is time to retire from driving. Give him as much control over that schedule as realistic. If you can’t cover it as a family/friend unit, investigate companion services or transportation services to supplement. The key is to help your dad feel as if he hasn’t lost anything by no longer driving.
What do I do or say when my client or loved one diagnosed with early-stage dementia insists on doing something they are no longer capable of doing safely?
If possible, avoid telling them they can’t. Instead, help them to do it, providing the right amount and type of support needed. When we understand the abilities and deficits of the dementia stages, we can create the just right level of challenge. The idea is to simplify the activity so that it isn’t too difficult. This is called compensatory care or activity adaptation. By the way, this is what we easily do for children at different developmental ages and degrees of ability. We adapt the world to their ability level so they can feel and be successful. That’s what we need to do for individuals living with dementia.
“My mom insists on flying alone to go see her sister. I told her she can’t, and she got very upset and said she was going anyway! I’m worried about her. What can I do?”
Any time we say someone can’t go or do it, we must realize we are taking away something that holds a lot of value for their well-being. They may be losing experiences they find fun, purposeful or meaningful.
Your mom may be feeling like she is losing control or is helpless. The goal is to help her to do it by providing the needed support, while allowing her to do what she can for herself.
In the scenario of travel, this means your mom may be ok negotiating the more routine components of travel, but she will need help solving unexpected problems such as what to do if her flight is cancelled. She may need help navigating in the airport, safely getting to/from gates, and boarding the plane. As we know with travel, a myriad of unexpected things can happen, and she won’t be able to figure out what to do. This will be very stressful and unsafe.
Best case scenario would be for your mom’s sister to come see her if that were possible. If not, can you or someone else travel with her, providing a travel companion? If she refuses the help, present it a different way such as, “Hey mom. I was thinking of going to see Aunt Millie in Texas. Would you like to go with me?” That simple change in approach may be all that is needed for her to agree.
What do I do or say when a person living with early-stage dementia gets angry or agitated?
Stay calm. If we escalate it is like throwing fuel on a flame. Then, be supportive, direct and try to safely address the want or need to calm the situation.
“I was starting to help my client to take her shower and she started screaming to leave her alone. She held up her fist as if she was going to hit me. What do I do when that happens?”
Try to stop and step back, remaining calm. Say something such as, “I’m sorry Betty, I didn’t mean to upset you.” The key in a moment like this is to never just push through to get the task done. Stop and address her feelings. Be supportive.
What you do next depends upon how successful you were in calming her at that point. It may be possible to start again. In this case you would ask if it were ok if you help her to take her shower. Be sure you have done all you need to do to gain her approval such as honor her preferences and need for privacy. If she seems agreeable at this point, continue. If not, try again later, and/or if possible, have another care provider help her with her shower.
Generally speaking, we get the best result when we first spend a few moments developing a rapport and gaining trust. We make sure the shower is set-up in a way that honors preferences including preferred time of day, preferred water temperature and products, etc. And always work to maintain the persons dignity by recognizing the need to keep them as covered as possible to maintain privacy.
When you are assisting someone with an intimate activity such as toileting, showering or dressing, maintaining privacy is critical. After all, wouldn’t that be important for you? Wouldn’t you resist if you felt threatened or violated? The same is true for a person living with dementia. They must feel safe, or they will resist. Resistance is a very normal response to fear.
Treat the person, not the disease
In dementia care we must have knowledge and skills to know how to respond and what to do to help get the best result possible. We do this while also recognizing we are caring for individuals and as such, there is never one way that will always get a good result. But if we apply principles of person-centered care and understanding of the abilities and challenges associated with early-stage dementia, as well as the subsequent stages, we have the foundation to identify approaches that have the best chances for success.
I hope the responses to these commonly asked questions will help you or someone else. Please share.
When writing this blog, it occurred to me that there is a need for evolution in the transportation industry. Wouldn’t it be amazing if airlines had a service for cognitively challenged older adults, similar to their Unaccompanied Minor Program? And wouldn’t it be helpful if car transport services such as Lyft and Uber had a way for loved ones to make a senior friendly round-trip reservation AND have a dementia trained driver who could accompany the client in/out if needed, safely and securely?
I can see companion care services addressing these needs in some circumstances. But it would be very helpful to also have transportation services recognizing the need to support those in the early stages of dementia who are no longer able to independently drive or fly on a plane. Not only would this help the person with dementia, but it would be a great resource for their loved ones. Just a thought.
*—If you want to learn more about Dementia Capable Care at Home: for Families, email us at DCSsolutions@crisisprevention.com.
Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.
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