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I’ve learned at least 7 things not to say to someone with dementia from personal experience.
My father had dementia. My mother first noticed that something was “off” when he became paranoid that the neighbor had stolen his tools. If mom was late getting back from a hair appointment, he’d accuse her of cheating on him.
He was in his early 70’s when the signs became apparent. The things he said were so far outside of his normal personality that we knew something was wrong.
Telling him he was “wrong” didn’t help, because he was convinced he was right.
There weren’t a lot of resources available to my mother back then, especially when it came to communicating with someone who had dementia. She got angry sometimes and even resorted to simply agreeing with everything he said.
Ultimately, she discovered that distracting him seemed to be the best solution. It might not be the best solution for everyone, but it worked for her.
There are many different types of dementia, each with unique and similar symptoms. In addition to different types of dementia, there are also different stages. What works well one day may not work another.
In this blog post, I’m going to share a bit about my father’s dementia progression. More importantly, I’m going to offer resources on how to speak to someone with dementia.
He started dropping the “F” bomb
​Bad language doesn’t scare me. But when I heard it uttered from my father’s lips I was floored.
Dad was a man who never swore in front of women or children. He was an old-fashioned guy who was born in the late 1920’s. He had to quit school at the age of 13 to go to work. Things were very different when he was a child.
​I was the youngest of three daughters and dad was akin to a god to me. He did no wrong. So the day he started dropping the “F” bomb in front of me was the day I knew he was very ill.
Everything changed
And then came the dementia diagnosis. To be honest, I never found out what type of dementia he had. All I know is that it had to be an especially painful experience for my mother.
She was an extroverted go-getter. Nothing made her happier than having a crowd over for dinner, or to visit friends and family.
All of that came to a stop by the time my father started showing signs of dementia. Instead of the leisurely Friday evenings she liked to spend in town (shopping, getting her hair styled, picking up something to have for supper later), she was suddenly frantic to get home.
She couldn’t leave dad home for long because he’d get scared. She tried to time her quick outtings with his naps.
Does any of this sound familiar to you? It must be frustrating and terrifying to the person with dementia, and to the caregiver.
How to talk to someone with dementia
Caring for a loved one with dementia, whether they have Alzheimer’s disease, vascular dementia, or another form of dementia, is a challenge.
Good communication is key in dementia care, but finding the right words to say might feel like walking on eggshells. One wrong move (or word) and someone gets hurt.
This blog post is designed to help you frame your conversations with dementia patients in a caring and respectful way. The most important thing is to remain patient, calm, and compassionate.
As you read through this post, please keep in mind that it’s designed for people caring for dementia patients who are in the early to mid-stages of the disease.
Why it’s so hard to communicate with someone who has dementia
Dementia is an umbrella term that encompasses 8 variations of the disease, including the following:
Alzheimer’s disease
This is probably the disease you’ve heard about the most. According to research completed by Prevention.com, Alzheimer’s affects approximately 60% to 80% of all people with dementia.
Vascular dementia
This is considered the second most common type of dementia. It accounts for approximately 15% to 20% of cases in North America and Europe.
Lewy Body dementia
Lewy body dementia can occur when a protein called alpha-synuclein forms clumps called Lewy bodies. It affects approximately 1.4 million Americans over the age of 50. Visual hallucinations and delusions are two signs of the disease.
Frontotemporal dementia (FTD)
This less common form of dementia affects approximately 60,000 Americans each year. There are several subtypes of FTD as well.
Normal Pressure Hydrocephalus
This type of dementia can be successfuly treated surgically with a shunt. The disease occurs when excess cerebrospinal fluid (CSF) accumulates in the brain’s ventricles. The pressure affects nearly brain tissue.
Sadly, of the 700,000 Americans estimated to have NPH, only 1 in 5 get a proper diagnosis.
Huntington’s disease
Huntington’s is a progressive, inherited brain disorder. Symptoms usually develop between the ages of 30 and 50. However, they can appear earlier or later than that.
Creutzfeldt-Jakob disease
This is an extremely rare brain disorder. That said, my mother had a friend who died from Creutzfeldt-Jakob disease. The disease can be inherited. In rare circumstances, it can be acquired by eating meat from infected animals. It can also be acquired through surgery if infected tissue is implanted.
Unfortunately, there’s often no known cause.
Wernicke-Korsakoff Syndrome
This degeneratie brain disease is caused by a deficiency of Vitamin B12. This type of vitamin deficiency is often associated with long-term alcoholism. It can also be caused by severe weight loss or other illnesses.
Symptoms include (but are not limited to) memory loss vision problems, lack of coordination, and disorientation.
The Struggle is REAL
Dementia affects different parts of the brain, leading to memory loss, cognitive decline, and communication difficulties.
The person in your care may struggle to recall specific events, have trouble with recent events or short-term memory, or find it hard to understand complex sentences. The person might seem distant one minute and aggressive the next.
It might feel like the person you love is locked inside their own body with no way to escape.
As you go through this journey with your loved one, make sure to also remain in contact with close friends. Friends can be a lifeline when you need a break.
Read: 5 Easy Ways to Foster New Friendships Over 50
Try To Be Positive
There will be days when the last thing you feel is positive or upbeat. It’s important to remember that your loved one may not clearly remember who you are. They may think you’re someone else, or that you’re there to hurt them.
There’s no guarantee that a warm hello and pleasant tone of voice will always go as planned. However, it’s a much better option than showing your frustration and anxiety.
Yes, your intense and difficult emotions are equally important! That’s why it’s so important to find an outlet, like a support group, here people who’ve been in your shoes can offer support.
Clear Away Distractions Before Trying to Communicate
Normal day-to-day distractions (the television, radio, other nearby conversations, etc.) are things you and I can usually blot out. People can still get our attention if they need to.
With dementia, getting the person’s full attention may require limiting excessive noise, foot traffic, barking dogs, noisy children, etc. Once those other distractions are out of the way, address the person by name and identify yourself.
People with dementia tend to have short-term loss of memory. That means you might have to repeat this process several times during a day.
Conflicting Demands on Your Time
As you go through this difficult process, you may also be facing conflicting demands on your time. Whether you’re retired or still working, there are always going to be other demands.
Unfortunately, the added stress can often be too much. This may be the time to set some boundaries. If you have grandchildren, you may be interested in reading 5 Polite ways To Say No To Watching The Grandkids.
Ask Specific, Answerable Questions
As dementia progresses, communication needs change.
In the early stages of dementia, open communication and discussing specific events may still be possible, but as cognitive abilities decline, adapting to the person’s stage becomes essential.
In the later stages of dementia, simple words and short phrases work best.
Long-term care settings often use memory care techniques, such as focusing on long-term memories, to help dementia patients stay connected to their sense of self.
The following examples can help reduce confusion and frustration, making it easier for the person to respond:
“Did you grow up in the city or the country?”
​This is a simple, either-or question that can help trigger memories without overwhelming the person.
​”What was the name of your first pet?”
​Sometimes a question about a specific aspect of their life can prompt a pleasant memory. People with dementia can often recall events from their distant past, but can’t recall recent events.
​”Do you want to wear the red sweater or the blue sweater today?”
​Offering limited, clear choices can help avoid confusion.
​”Would you like to go for a short walk?”
​This type of question gives the person a sense of independence and the ability to answer yes or no.
7 Things Not to Say to Someone With Dementia
​You can (and should) continue to communicate with your loved one, even as the dementia symptoms worsen. The key is to try and avoid confusion, frustration, or distress.
​For example:
1. Do you remember?
Asking someone with dementia if they remember specific people, places, or events can cause anxiety in that person. It’s better to phrase things neutrally. For example, you might say, “I was thinking about the time we went to the park together.”
2. I just told you that.
This can sound a bit like an accusation to the person with dementia. It can leave that person feeling guilty or embarrassed for forgetting.
Instead of saying that, simply repeat the answser calmly.
3. You’re wrong or That’s not true!
Correcting them harshly can make the person feel upset or even defensive. The last thing you want to do is set the person up for an argument. It’s much better to go along with their version of events or gently redirect the conversation if needed.
4. What did you do today?
It’s difficult for someone with dementia to answer open-ended questions. They may struggle to recall recent activities. Instead, you can say something like, “I noticed you were reading a book earlier, did you enjoy it?”
5. You already told me that.
I’m in my fifties and don’t have dementia (that I know of) and I find myself repeating stories sometimes.
Someone with dementia, however, may tell you the same story several times in one day. It can be frustrating, or even embarrassing for you, but it’s best to just listen and engage, even if you’ve heard the story several times already.
6. Why can’t you remember?
This kind of question places blame and pressure on the person for something they can’t control. It’s more helpful to reassure them that it’s okay if they can’t remember something and move on.
7. Don’t you recognize me?
This is really stressful for someone who is already trying hard to place people. Instead, calmly reintroduce yourself if necessary.
Summary
Speaking to someone with dementia isn’t always easy, especially as the disease progresses. Patient and empathy are going to be your best friends as you find your way through this difficult time.
Each interaction provides an opportunity to uplift the person in your care and improve their quality of life.
Remember to focus on their emotional needs, keep communication simple, and embrace the present moment. This helps maintain their dignity and well-being while strengthening your bond with them.
Memory impairment often causes confusion and anxiety. If your loved one can’t recall something, offering a gentle reminder instead of pressing for new information can be very helpful.
Finally, avoid questions that require specific details or recent events, as they may lead to a wrong answer or feelings of frustration.
If they can’t recall a particular family member or past bereavement, don’t push for accuracy. Instead, acknowledge their feelings and redirect the conversation to something comforting or familiar.
Resources for Dementia Care Givers
​Need help? It’s okay to reach out for support. Please see the following agencies, associations, and organizations for more useful information on what it means to have and support someone with dementia.
Alzheimer’s Association
- Website: alz.org
- Provides a wide range of resources, including a 24/7 helpline, education, local support groups, and care consultations for families dealing with Alzheimer’s and other forms of dementia.
Family Caregiver Alliance (FCA)
- Website: caregiver.org
- Offers caregiver guides, tips for managing care, legal and financial resources, and links to support groups. FCA also has state-by-state resources for local help.
Alzheimer’s Foundation of America (AFA)
- Website: alzfdn.org
- Offers free, virtual memory screenings, caregiver support, educational webinars, and a national toll-free helpline to assist caregivers with information and emotional support.
National Institute on Aging (NIA)
- Website: nia.nih.gov
- Provides research-backed information on Alzheimer’s disease and dementia, caregiving tips, and information about clinical trials. The NIA also offers downloadable caregiving guides.
Dementia Care Central
- Website: dementiacarecentral.com
- A resource specifically for dementia caregivers, covering care planning, financial aid, safety, and behavior management tips.
Teepa Snow – Positive Approach to Care
- Website: teepasnow.com
- Teepa Snow is a leading educator in dementia care, and her website offers training videos, webinars, and practical tips based on her Positive Approach to Care model.
Eldercare Locator
- Website: eldercare.acl.gov
- A service provided by the U.S. Administration on Aging that helps caregivers find local resources for elder care, including dementia-specific services, respite care, and adult day programs.
Caregiver Action Network (CAN)
- Website: caregiveraction.org
- A nonprofit organization that offers practical advice, peer support, and educational resources for caregivers, including those supporting someone with dementia.
Alzheimers.gov
- Website: alzheimers.gov
- A government site providing comprehensive information about Alzheimer’s disease, caregiving, and treatment options, along with links to local support services.
MemoryCare
- Website: memorycare.org
- A nonprofit organization dedicated to dementia education and support for families and caregivers, offering online workshops, resource guides, and personalized care consultations.
Dementia Friends USA
- Website: dementiafriendsusa.org
- A social movement to increase public awareness and understanding of dementia, offering free training and support materials to help caregivers.
The Mayo Clinic Dementia Caregiver Support
- Website: mayoclinic.org
- Offers a comprehensive guide for caregivers, including advice on handling daily challenges, self-care tips, and managing the emotional aspects of caregiving.
DailyCaring
- Website: dailycaring.com
- Provides practical tips and news articles for family caregivers. It offers solutions for common challenges such as difficult behaviors, caregiving tasks, and self-care.
Caregiver Support Groups (Local and Online)
- Online Resources: Many organizations, such as the Alzheimer’s Association, AARP, and the FCA, offer online support groups to connect with other caregivers. Facebook also has dementia caregiver communities.
Respite Care (National Respite Network)
- Website: archrespite.org
- Provides information on respite care services, which allow caregivers to take short breaks by arranging for temporary care for their loved one.
These resources can help caregivers access support, education, and community connections, empowering them in the demanding role of caring for someone with dementia.
