How to Start the Dementia Conversation with Your Loved One: A Caring Approach for a Difficult Discussion
Having "the conversation" about dementia with a loved one is one of the most challenging and emotionally charged experiences you may face as a care partner - especially for the first time. As I type this, I can still feel the apprehension I had each time I had to bring this topic up. The fear, uncertainty, and heartache that come with recognizing cognitive changes in someone you love are overwhelming. But I also know that approaching this conversation with empathy, patience, and preparation can make a world of difference. I am not a professional therapist so make this your own, be authentic and speak from your heart.
Recognizing the Need for the Conversation
Before diving into how to have the conversation with your loved one - and then maybe other family members - it's important to acknowledge why you're considering it in the first place. You've likely noticed changes in your loved one's behavior, memory, or daily functioning that have raised concerns. Maybe they're forgetting important appointments, struggling with familiar tasks, or showing uncharacteristic mood swings.
These observations can be frightening. If you are like me, you are already experiencing anticipatory grief just thinking about it and so it's natural to want to avoid this conversation. But remember, early detection and intervention can significantly improve quality of life and future care options. The earlier you act, the more treatment options exist. These early steps can mean the difference between delaying progression, and not.
Preparing Yourself Emotionally
Before you approach your loved one, take some time to process your own emotions. It's okay to feel scared, sad, or even angry. Acknowledge these feelings and consider talking to a therapist or joining a support group for caregivers. You have amazing family and friends, but if they haven’t experienced what it is like to have a loved one with cognitive impairment, it is so important to find people who do. Having a support system in place will not only help you navigate your own emotions but also better equip you to support your loved one.
Choosing the Right Time and Place
Timing is crucial when it comes to this conversation. Choose a moment when both you and your loved one are calm and not rushed. A quiet, comfortable setting where you won't be interrupted is ideal. Perhaps it's during a morning coffee at home or a peaceful walk in a familiar park. The key is to create an environment where your loved one feels safe and at ease.
Starting the Conversation
Begin gently. Instead of launching straight into your concerns, start by expressing your love and support. You might say something like, "Mom, you know how much I love you, and I want to talk about something important. Is that okay?" This approach sets a tone of care and collaboration rather than confrontation.
Sharing Your Observations
When you're ready to address your concerns, use specific examples of behaviors you've noticed. Be factual and avoid judgment. For instance, "Dad, I've noticed that you've missed a few of your doctor's appointments lately, and last week you forgot where you parked the car at the grocery store. I'm wondering if you've been feeling okay?"
By framing your observations as questions, you're inviting your loved one to share their perspective rather than feeling accused or defensive.
Listening with Empathy
Once you've opened the door to the conversation, the most important thing you can do is listen. Your loved one may be scared, in denial, or even relieved that someone has noticed their struggles. Whatever their reaction, validate their feelings. You might say, "I can only imagine how frightening this must be. I want you to know that I'm here for you, no matter what."
Addressing Denial
It's common for people to deny or minimize cognitive changes. Our society is still not comfortable talking about neurological diseases so it is normal for people to feel shame or embarrassment if they fear they are having cognitive challenges. If your loved one becomes defensive or dismissive, don't push too hard. Instead, express your ongoing support and suggest a follow-up conversation. You might say, "I understand this is a lot to take in. Let's take some time to think about it, and we can talk more next week if you're comfortable."
Suggesting Next Steps
If your loved one is receptive to the conversation, gently suggest scheduling an appointment with their doctor. Frame it as a proactive health check rather than a dementia-specific evaluation. You could say, "I think it would be a good idea to talk to Dr. Smith about these changes. They might have some helpful suggestions, and it's always good to stay on top of our health as we get older."
Offering Reassurance and Support
Throughout the conversation, and in the days that follow, continually reassure your loved one of your support. Let them know that whatever happens, you'll face it together. This might sound like, "Mom, no matter what the doctor says, I want you to know that I'm here for you. We'll figure this out together, one step at a time."
Following Up
After the initial conversation, give your loved one some time to process. Check in with them regularly, but don't pressure them if they're not ready to talk more. Continue to offer support and be present in their daily life. Sometimes, actions speak louder than words, and your consistent presence can be incredibly comforting. If your loved one continues to be hesitant to speak with their doctor, you can offer to go with them or if they’d prefer a televisit to in person, then you can be in the room for that phone or video call.
Taking Care of Yourself
When you fly on a plane, the safety check that is done before takeoff reminds us all that in the event of an emergency, it is so important to put your own oxygen mask on first before helping others. As you navigate this challenging time, don't forget to take care of yourself. The journey ahead may be long and demanding, and you'll be better equipped to support your loved one if you're also looking after your own well-being. Make time for self-care, maintain your social connections, and don't hesitate to seek professional support if you need it.
Embracing the Journey Ahead
Remember, having this conversation is an act of love. It's not easy, and it may not go perfectly, but by initiating this dialogue, you're taking an important step in ensuring your loved one gets the support and care they need.
As someone who's been through this, I can tell you that while the road ahead may be full of twists and turns, there are also moments of profound connection, love, and joy. Your relationship with your loved one will evolve, but it can also deepen in beautiful and unexpected ways.
Final Thoughts
Approaching the topic of potential dementia with a loved one is undoubtedly one of the most difficult conversations you may ever have. It requires courage, compassion, and patience. But remember, you're not alone in this journey. Many of us have walked this path before you, and there are resources and support systems available to help you every step of the way.
As you move forward, hold onto hope. While a dementia diagnosis can be devastating, it's not the end of the story. With early intervention, proper care, and a strong support system, many people with dementia can maintain a good quality of life for years to come.
By having this conversation, you're taking the first step in ensuring they get the support they need. It's a testament to your love and commitment, and though it may not feel like it at the moment, it's truly a gift.
Remember to be kind to yourself throughout this process. You're doing the best you can in a difficult situation, and that's all anyone can ask. Take it one day at a time, celebrate small victories, and never underestimate the power of your presence and love in your loved one's life.
In solidarity,
