How to get someone diagnosed with dementia: Talking about it first

Starting a conversation about cognitive changes with a loved one can be one of the toughest steps on the journey of dementia caregiving. Here are some tips to help guide this conversation as you’re navigating how to get someone diagnosed with dementia.
December 3, 2024
By
Juliet Holt Klinger, MA

Starting a conversation about cognitive changes with a loved one – when you’ve had time to notice early signs and symptoms of dementia – can be one of the toughest steps on the journey of dementia caregiving. Before any formal diagnosis, there’s often a difficult period spent building the courage to talk to your loved one about the changes you’re noticing in their thinking and behavior. The stigma surrounding dementia makes it tempting to avoid the topic altogether, and denial is common—for both the individual experiencing symptoms and those close to them. But finding that courage and having an open, supportive conversation is a vital first step toward living well with a diagnosis.

The key to approaching these conversations is to set the right tone and frame your thinking in the most positive way possible. If you start from a place of trying to "convince" your loved one that something is wrong, resistance is almost certain.

Instead, aim to come from a place of empathy and concern and set a goal to normalize talking about brain health in the first conversation. Think of this first conversation as beginning to work together rather than creating opposition.

Here are some additional tips to help guide this conversation as you’re navigating how to get someone diagnosed with dementia.

Consider their unique perspective

Before you even begin a conversation, take some time to consider your loved one’s unique perspective. Do they have fears stemming from a family history of dementia? Are they known for their sharp intellect or hold a career rooted in cognitive skills? Are they particularly private about their health? All of these factors can help you approach the conversation from a place of empathy.

Choose the right moment

Timing is everything. Bringing up concerns during a moment of frustration—such as right after a memory lapse—can backfire. Instead, choose a time when you’re both relaxed and connecting positively. Try to choose a time when you’re both having a good day and enjoying each other’s company.

Take a gradual approach

Remember, you don’t need to cover everything in one conversation. It’s unlikely that your loved one will be immediately ready to get tested for dementia after one conversation. Instead, think of it as opening the door for a series of conversations and future discussions. A good way to start is by framing your observations as questions that empower them. For instance, rather than saying, "There’s something wrong with you," try, "Have you noticed any changes in your memory or thinking recently?" You could also say, "You’ve always been proactive about your brain health. Do you think it might be a good idea to have the doctor check in on things?" 

The goal of the initial conversation is to normalize discussions about cognitive health. Approaching the topic calmly helps build a foundation for open dialogue in the future and reduces the likelihood of defensive reactions.

Share your own experiences

Making the conversation relatable can help reduce any discomfort. Sharing a moment when your own memory has slipped—like forgetting why you walked into a room—and mentioning that you’re considering talking to a doctor can invite your loved one to open up. For example, "I’ve been forgetting little things lately, and I’m thinking of talking to my doctor about it. Does that ever happen to you?" might prompt a simple, "Yes, me too," that opens the door further.

Acknowledge changes without judgment

As conversations progress, it’s natural to wonder how to handle moments when your loved one makes a mistake or shows signs of memory decline. While judgment should be avoided, acknowledging these moments gently can continue the conversation. Statements like, "I noticed these two bills didn’t get paid, which is unlike you. Does it feel like something is off?"or "You usually remember all the grandkids’ names easily, but today seemed tougher. Did it feel different to you?" can help keep the dialogue open.

Add hope and positivity

It’s common for people to assume cognitive changes are an unavoidable part of aging or that nothing can be done. But early intervention can make a real difference. Medications for Alzheimer’s and other dementias are most effective when started early. Sharing the fact that there are now medications available that can potentially slow the progression of dementia may motivate them to see the doctor. You could say, "I read that early treatment can really help slow down changes. Would you like to learn more about that together?"

Even sharing a relevant news article or trusted resource can spark interest and make the conversation feel less pressured.

Build trust and keep conversations supportive

Above all, keep your conversations supportive and empathetic. Building trust and showing that you’re coming from a place of care will strengthen your partnership and create an environment where your loved one feels safe discussing these changes.

We hope these strategies help you feel more confident in encouraging your loved one to speak to a physician and prepare for whatever comes next. By fostering open, caring communication, you’re laying the groundwork for better understanding and proactive care.

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Driving and dementia: How to talk about giving it up

Giving up driving can be a devastating loss for the person living with dementia. And having to be the person who needs to consider how to stop your loved one with dementia from driving may be even harder. With some planning and this conversation starter, guiding your loved one through this transition may be easier.
October 15, 2024
By
Juliet Holt Klinger, MA

Driving a car gives us the freedom to go where we want when we want, and we can all remember the sense of independence that came with our first independent drive. So when that freedom and independence is lost, it can be a devastating loss for the person living with dementia. 

Almost no one accepts this change easily–or without a bit of a fight. Having to be the person who needs to consider how to stop your loved one with dementia from driving may be even harder. 

With some planning and this conversation starter, guiding your loved one through this transition may be easier.

Begin from a place of empathy and compassion

Take a moment and think about all that not being able to drive might mean to them: the loss of independence, freedom, and sometimes even the perceived loss of power over their own lives. Then, take another moment and imagine how you would feel if this were to happen to you. This will help you feel empathy for them and prepare you to truly understand their feelings. 

Instead of focusing on your desired result (stopping the person with dementia from driving), first lead with empathy and compassion. Then, begin the conversation. 

Start the conversation early

If possible, talk about the symptoms and progressive challenges of a dementia diagnosis. It’s more empowering for your loved one if they’re included in the decision-making and agree that driving will not be safe as the dementia progresses. In those early-stage conversations, it should not be framed around “if you need to give up driving,” but rather “when you need to give up driving.”  

Include this loss in your planning conversations before it becomes an issue. Approaching the conversation from the right angle will help avoid your loved one react with less defensiveness or denial. As much as possible, help your loved one see that this decision results from disease progression. As their memory, sense of direction, reaction time, and wayfinding all become more affected by the dementia, it is for their safety to stop driving.

Get help: You have allies

Include the physician in the conversation

While this conversation is difficult, the good news is that you have many allies to help. Consider working with the physician who has helped with their diagnosis. That physician should already be asking about driving as a part of their ongoing assessment of your loved one, but if they don’t, make sure you bring it up! It’s never too early to ask them to have a conversation with your loved one about preparing for a time when they can no longer drive. Enlisting the physician’s help can help reinforce that it is not just your own decision but about your loved one’s safety as the disease progresses. 

When the time comes for them to give up driving, it can be very helpful to get a letter from the physician that states the person should no longer be driving. You can show your loved one this letter if they forget or resist to stop driving.

Contact your local department of motor vehicles  

Also, consider contacting the driver’s license bureau. When your loved one’s driver’s license is up for renewal or after your loved one receives a diagnosis, consider if it’s time to put restrictions on their license. In many states, drivers who have been diagnosed with dementia must attend a re-examination and must take a knowledge test. If the driver passes the test, then they may be asked to take a special driving test or a supplemental driver performance evaluation. Check with your local department of motor vehicles for any additional guidance or support.

Address safety concerns through local law enforcement

If there has been an incident like a minor accident, traffic violation, or losing the car in the parking lot, this may be a good time to progress the conversation. Sometimes, local police departments might have resources or be willing to draft a letter indicating there’s a safety risk. If this sort of incident has occurred, this conversation is more urgent.

What to say to help your loved one stop driving

So what exactly do you say? Start with validating how hard it is by saying, “I know this is so hard. It would be very hard for me, too.” 

Next, try acknowledging their fears over losing their freedom and independence. Validate that you understand that things will change for them and that this will be hard for them to accept, but that giving up driving doesn’t have to drastically change how much they are getting out, or how independent they are. “I get that this is hard and that you are afraid of losing your independence, but we are going to make sure you still get out as much as you want.” 

Anticipate in advance of the conversation particular concerns that they may have about no longer driving. For instance, they may be concerned about how they will get their groceries, or visit their friend across town, or get to their doctor’s appointments. Ensure that you have several good options like a family member, friend, or a ride-share service. Reassure them that you have already thought of ways to get them where they need to go and that they will not be “trapped” at home without transportation. 

Focus on the positives in the conversation and try to get them to understand that while this is a big change for them, it doesn’t have to mean the end of their going out and about. 

And as with all the essential conversations, this may not be resolved in one chat. And that’s okay. It’s normal to need to revisit this subject several times. 

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