How to Talk to Family Members That Are in Denial About Dementia

Strategies to Help You Find Common Ground for Better Care Outcomes

By Valerie Feurich,
Positive Approach to Care team member

When family members don’t see eye to eye, things can go from tricky to downright uncomfortable.

Do you have a family member who isn’t seeing the changes in a loved one that you’re noticing?

Family members being on the same page and supportive of one another is incredibly helpful while caring for someone living with dementia. Whether you live nearby or out of state, being able to effectively communicate and trusting one another can make all the difference.

But how do you get there when you don’t share the same views?

Below are a few things you can try; steps to implement to start building a more cohesive care partnership:

1. Realize that they may be experiencing the situation differently

While you may be spending a lot of time with your dad on task-related things, such as trying to make sure that he gets to an appointment on time, your sister may be having short, comfortable chats on the phone where your dad is quite capable of having a decent conversation. While you have an agenda to meet (the doctor’s appointment), she and dad get to enjoy a relaxed time with a leisurely phone call.

While family dynamics certainly come into play, the type of interaction can skew one’s views and make it harder to notice little things. While you may be getting one-word answers from your dad, maybe because task-focused language tends to be short and maybe even brisk, your sister cannot experience these situations from afar.

What you can try:

• You may want to set up a video chat during a task that you and dad are doing. That way, your sister or another family member could watch the interaction.
• If a live session isn’t possible, you could record the interaction with your dad to share with her. In the approach of show — don’t tell, this may help your sister see your side of the situation.
• Ask her/your family member for help. By being open and honest about the situation and also opening the door for your family member to visit, you may help them realize that there’s more to the situation than she/he assumed.
• You may want to begin this conversation with a phrase like: I know you’re busy, but I’m struggling. I’m wondering if you could come for a weekend to really make dad happy. You’ve always been such a good sister and daughter, and it would mean so much if you could pop by for a bit to see us.

2. Realize they may lack the background knowledge to interpret the situation differently

The more one knows about dementia, the more likely one is to notice little details or patterns that would be easily missed or shrugged off as old age curiosities.

Looking at the earlier example, your sister might think that dad is just fine since he’s capable of a decent conversation on the phone. But, if she knew that social chit-chat tends to be preserved during a fair amount of the disease progression, she may come to understand that her baseline observation does not exclude dementia, thereby giving your experiences more credit.

What you can try:

• You may try and see if your sister or relative would be open to learning just a little more. Try approaching the conversation something like this: Okay, wow, it seems we’re just seeing things differently. I hate that I feel so alone, because when you talk to dad it seems you and him are getting along just fine. And when I’m trying to do the things that were recommended to do, I feel like I’m taking the heat. Would you be willing to take a look at this video? I do think something might be happening, but I don’t think it’s bothering you and dad’s relationship, but boy am I running into trouble.
• If your sister or family member responds that they don’t have the time, you may suggest a few short video clips about dementia, such as the ones that you can find here on PAC’s YouTube channel or on Teepa’s Clips.

3. Realize they may have an unmet need as well

Just as your family member cannot experience exactly what you’re going through, you likely may not be aware of everything going on in their life either. Could it be that they have an unmet need themselves? Could they be dealing with another tiring situation that makes them unable to even consider the next possible, challenging journey ahead?

What you can try:

• Try doing a check-in with your sister or family member. Get a gauge of where she/he might be emotionally, physically, and mentally. A simple question like I was just thinking about you and wondered how you are doing may open the door to a deeper conversation and connection.
• You may want to add a compliment and mention that you have noticed that dad really enjoys his conversations with her, and ask her advice on how to communicate with him. Human beings have an innate need to be needed, and by asking for her thoughts and advice you make her feel like she’s part of the care team for your parent. In addition, this would give you an insight into where she is with her understanding of how dad is doing.
• As you listen to your family member, keep in mind that all of our brains (even people not living with dementia) change day-to-day, hour-to-hour, minute-to-minute. (Learn more about Teepa Snow’s GEMS States here.) There are many things that can affect one’s brain state, both negatively and positively. Some of the common unmet needs are:

Unmet Physical Needs

• Hunger/thirst
• Elimination needs
• Energy levels
• Pain
• Discomfort

Unmet Emotional Needs

• Anger
• Sadness
• Loneliness
• Fear
• Boredom

Could any of these things be affecting your sister or family member’s state of mind as you’re talking to them? Being able to gauge in which state of mind your sister may be will help you pick a better time to have potentially difficult discussions.

The fact is, being the primary caregiver while other family members are at a distance can be extremely exhausting, and sometimes even disheartening. Perhaps you are at a point where you don’t care how your sister or family member is doing — you just wish she/he would come and help out, or take a more active role in caring for dad. That is a very normal feeling and something many primary caregivers experience. That said, you may want to try putting yourself in their shoes as well. While this can be difficult to do, it can help you discover a common ground to build on.

To provide the most effective and compassionate care for people living with dementia, you need a team of a few supportive people you can lean on. While it can be difficult to be the one to take the first step, it may be well worth your while.

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Positive Approach to Care

Positive Approach to Care (PAC), founded by dementia care educator Teepa Snow, offers caregiver education through effective hands-on care skills and techniques.

Interested in learning more? Visit www.teepasnow.com/blog.