Your loved one just heard three difficult words: “You have dementia.” Then your head starts swirling with a million questions.
“Why did this happen to my dad?”
“What could we have done to stop it?”
“What should I say — or not say — to my loved one?”
Suddenly you’re a caregiver. Now what?
It’s going to be challenging for you. But it’s far worse for the person with dementia. While symptoms of dementia can come and go, there is still no cure. If the condition isn’t very advanced, your loved one may be fully aware — and totally distraught. Here are some steps to soften the blow of a dementia diagnosis.
6 Ways to Find the Right Words to Say
There are times in life when words escape us. This is one of them. You want to make sure your relative knows that you understand the news is difficult. Share that you are in this together. Be sure they know that people with dementia can continue to enjoy life.
Discussing the dementia diagnosis will be the first of many conversations as the disease progresses. The ideas that follow may help you express yourself in an honest yet loving way, both in your first conversation and those to come.
1. Get prepared.
As your parent goes through the process of receiving a diagnosis, make sure to educate yourself and reflect on how you can best support him or her. Then make put your parent at ease during that first conversation. Sit at a comfortable distance — not too close, and not too far. Try to appear relaxed and keep an open posture. Hint: unfold your arms. These all signal that you're ready for an open dialogue about how they are doing. Be prepared to listen more than you speak and keep an open mind about what your parent might reveal to you.
Moving forward, choose the right time and place to talk to your loved one about big decisions. It would be best if the space is quiet and free of distractions. Have these conversations when you don’t feel rushed and try to find a time of day when your parent is at his or her best. Think about your desired outcome before you begin speaking and then ride the waves of the conversation.
2. Make sure your loved one knows you have a plan to help.
Reassure your mother or father that there are many things you can do together to help them live their best possible life. This includes education. Together you can find the right medical care, look into local support organizations, and plan ahead for legal and medical needs. Discuss how to create a safe home environment, especially if your loved one lives alone.
Don’t sugar coat the diagnosis, but don’t push the panic button either. Tell your loved one that the two of you will create a plan together.
3. Tone of voice.
Slow down, leave pauses between each sentence, speak simply and never raise your voice. Keep things conversational — this isn’t a lecture or an interrogation.
Make sure to always be respectful and think about how you’d like to be treated. For example, don’t talk about your parent when they are right there with you in the room. Always include your loved one in the conversation. People with dementia may feel isolated, so make sure they know you value them!
4. Say what you need to say…kindly.
Don’t bombard your mom or dad with questions right away. Cover one thought or idea at a time and give them plenty of time to respond. They will likely be overwhelmed by the news and may not be able to process all of the details. Instead of getting upset, focus on speaking with kindness.
As the disease progresses, if your parent isn’t getting what you are trying to say, don’t repeat the same question. Instead, try putting things another way. For instance, show them a photo of someone you are talking about. It can also be helpful to stick with questions that can be answered “yes” or “no.”
5. Listen for the meaning behind their words.
Feeling misunderstood is a very frustrating aspect of dementia. Become an active listener and provide encouragement. Give the person the time they need to express themselves.
Try not to interrupt or jump in to finish their thoughts. Never brush off their feelings. Using the rules of improv when communicating through dementia can help. Things like listening fully, being in the moment, and going with the flow can all make communication go more smoothly no matter what stage of dementia they are in.
6. One more thing to touch on.
Body language and physical contact are extremely important for all of us. When dealing with the grief that accompanies a dementia diagnosis, physical contact may be able to convey more than words ever could. A hug, the touch of a hand, or simply sitting in the same room together can make it clear to your loved one that you'll be there for them no matter what.
Non-verbal communication matters more as symptoms progress. Learn to lean on non-verbal communication. Pay attention to your loved one’s body language. Facial expressions can also provide insights into how they feel. As the Alzheimer’s Society puts it, “Use physical contact to communicate your interest and to provide reassurance. Don’t underestimate the reassurance you can give by holding the person’s hand or putting your arm around them, if it feels appropriate.”
What NOT to Say After a Dementia Diagnosis
Conversational techniques we take for granted can be inappropriate when communicating with someone with dementia. Here are some don’ts — and do’s — for that first day and every day after:
- DON’T say, “I just told you that.” People needn’t be reminded of their memory challenges. DO overlook the repetition and focus on listening to them.
- DON’T use lengthy sentences that present multiple ideas. DO stick to one thought at a time. See if you can break things down into chunks.
- DON’T treat your loved one like a child. DO remember they're still the person you know and love.
- DON’T ask how they spent their day. DO try to stick with what’s going on right now!
- DON’T try to stimulate your loved one’s memory. Don't ask them if they remember the time you went to the zoo because if they don’t remember, it can make them feel ashamed. DO say that YOU remember a time when you had a fun time at the zoo together. This lets your parent reflect on the memory without feeling bad if they don’t recall it.
What to Say When There’s Nothing Left to Say
Your discussion with a loved one following a dementia diagnosis can be one of life’s most difficult conversations. But with a little preparation and a lot of listening, you will get through it. This will help you set the stage for a different, yet still rewarding, relationship with someone you treasure.