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Dementia Communication Strategies: Talking When Talking Doesn’t Work

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    Brian needed to say something. Something simple. He struggled.

    It made me sad. I’m used to it. So is he. We’re prepared for this. But as experts in dementia care — him living it and me helping many care-partner teams who contend with it daily — even we battle with daily trials.

    My life partner, Brian, is the smartest man I know. All he wanted to describe was something in the shape of a triangle. A young child could point it out, but at that moment he just couldn’t find the word. It was right there. I could see it in his eyes. He grew aggravated by the second. Finally, he threw his hands up to form the right shape.

    “Triangle! Yes, triangle! Of course, sweetheart.”

    A man with years of experience in on-air marketing had found a way to convey his message. Make no mistake, a few moments later the legend himself could dictate a business and marketing plan in its entirety and point to several helpful resources. But he couldn’t then. He was understandably upset. 

    Communication Strategies for People with Dementia

    Dementia has no hard-and-fast rules. Communication strategies for some people with dementia won’t work for others. With certain types of dementia, memory regression and communication difficulties may present quickly. Or it might take years to notice significant declines in verbal communication aspects like vocabulary, articulation, retention, cadence, and even tone and volume. In addition to difficulty finding the right words, individuals with dementia may:

    • Repeat words, phrases and full stories
    • Lose their train of thought
    • Describe rather than name familiar objects
    • Use physical gestures
    • Struggle with logic and order
    • Avoid speaking entirely

    Alzheimer’s Disease and other forms of dementia generally progress in stages like most other diseases. Here are some great communication strategies.

    Early Stage Dementia

    In the early stages, you may not notice significant declines in your loved one’s ability to communicate. You might spot some early signs of diminishing capacities. But don’t worry! They can still enjoy meaningful conversations and relationships for years to come. They’ll just need a little more help and understanding.

    • Give time to respond as they try to find the right words and phrases
    • Speak clearly and directly to the individual
    • Communicate on their terms (in-person, video chat, phone calls, etc.)
    • Don’t interrupt unless you’re asked for help

    So much of communication in the early stage requires dignity and consideration. Your elder is likely very aware they’re having difficulties. While it may seem easy to pass these off as “senior moments,” your loved one is probably scared, self-conscious or even embarrassed when they can’t remember a name or what someone told them moments earlier.

    Your love, support and honesty is becoming more important than ever. (Helpful hint: Humor helps. Laugh with your loved one, when appropriate. It’ll be easier to talk after sharing a good chuckle over forgetting something silly.)

    Middle Stage Dementia

    By this stage, the effects of dementia have grown more pronounced. Remembering names can be difficult. Many with diagnoses of Alzheimer’s or other forms of dementia often misplace the names of grandchildren with the names of their own children or close family from earlier in life. Memories typically regress in reverse chronological order. They’re sometimes “mentally present” in a previous decade. 

    Maintaining a train of thought in conversation to a logical end point is often quite difficult — with far fewer moments of clarity. They need help understanding your meaning and conveying theirs.

    • Speak slowly and clearly, and maintain eye contact
    • Present one topic or one question at a time (easy “yes” or “no” questions that require minimal decision making are best)
    • Find a quiet place to converse one-on-one without distraction
    • Enhance your words with visual cues to aid comprehension
    • Avoid correcting or arguing (their mind may not be present and capable of speaking truthfully or accurately)

    Middle stage dementia may last years. Prepare these easy communication aids to present options or walk your elder through daily tasks on “foggy” days.

    Late Stage Dementia

    Verbal communication may become impossible as dementia progresses to its final stage. But rest assured, there’s still a loving soul behind those eyes and they have plenty to say — if you pay attention. They may communicate with their eyes, facial expressions, gestures and sounds.

    • Face the person so they may first see a friendly smile (it helps to identify yourself to begin each new interaction)
    • Understand the feeling behind sounds and intonations (a grunt might signal anger or discomfort while light humming might indicate happiness or contentment)
    • Use pointing and gestures to indicate meaning and direction (pointing outside could mean they wish to go for a walk)

    A care-partner team may be present 24 hours a day for a loved one with late-stage dementia. It’s important everyone understands the importance of emotions and senses in conveying a message.

    Above all, people with diagnoses of Alzheimer’s and dementia must be treated with dignity. They have lots to say with lots of love to give — and it’s not their fault they struggle to express it. Moments of silence are OK. Your loving presence is often enough.

    #WeAreDementiaStrong. How Can We Help? 

    We’re walking this dementia journey with you and your loved one. We experience many of the same things. We sometimes struggle just like you. Researching and planning effective dementia communication strategies can go a long way.

    #WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.

    early onset dementia

    Early Onset Dementia: Mom Keeps Forgetting My Name

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      Your mother readies for the day one morning. You’ve just enjoyed a delicious breakfast. The comforting smell of maple syrup and pancakes lingers in the air, welcome as a family friend.

      You’re both excited for a day of, let’s say, perusing yard sales. Your annual spring outing, rooted in tradition and love, is more about spending quality time together than finding little treasures.

      Then something happens that’s not so familiar. Mom calls you in the room. “Sarah,” she says, “have you seen my gold bracelet?”

      You walk to her room, confused. Your name’s Rebecca, and she’s wearing the bracelet. You’re visibly taken aback as you explain what it seems she should already know. Your mother may even laugh it off. “Oh, silly me,” she says, noticing the bracelet and gesturing toward a few strands of graying hair, as if to justify a “senior moment.”

      She’s only in her late 40s. Isn’t it too early for dementia? Forgetfulness happens sometimes to even the healthiest, most cognizant people advancing in years. But Sarah? The bracelet? Something in your mother’s memory slipped, if only for a moment.

      The simple answer is, no, it’s not too early. Early onset dementia symptoms may begin in a person’s 40s — or younger. It affects approximately 200,000 of the 6 million Americans living with Alzheimer’s or dementia today.

      You See Symptoms of Early Onset Dementia. What’s Next?

      With time, instances like these may grow more frequent. Your loved one misplaces your name. His or her day-to-day and minute-to-minute memories begin to draw back with time. Your natural instinct may be to worry, to correct, to fight against the progression of regression in hopes their memories regain their once-strong foothold.

      But a great care plan should allow some personal space, perspective and understanding. Here are some strong first steps:

      Begin With a Comprehensive Medical Evaluation for Younger Dementia

      Self-diagnosis, or a diagnosis by close family and friends, often works contrary to care goals. There are more than 400 different types of dementia. Each has its own definitive characteristics and speed. What’s more, dementia affects each individual differently. Each requires its own special style of care.

      You know your loved one well. Memory lapses, slips in reasoning and judgment, and other behavioral and physical changes — especially early in life — may be uncharacteristic. You should first seek the professional opinion of a primary care physician or neurologist. Comprehensive tests can understandably be scary or overwhelming. They typically include a medical exam, cognitive tests, brain imaging and other diagnostics. From these, a doctor has a clearer picture of symptoms and potential causes.

      You may learn there’s no medical reason for forgetfulness. A busy mind filled shuffling stressors of work, family and everyday life can be forgiven for missing a beat occasionally. After all, many of those in the average 40-to-55 age range for early onset dementia are at a life stage when work and family responsibilities are most demanding. They’re often reaching the pinnacle of careers, while some also balance being care partners for elders themselves while guiding children through high school and college.

      If tests do, however, uncover signs of dementia, you’ll be informed to address those specific symptoms and plan for the future.

      Build a Person-Focused Life Care Plan

      Early onset dementia still merits a life worth living. Changes in memory over time should have little impact on a person doing the things they love. For many years to come, they may enjoy family meals, hobbies, attending the kids’ concerts and sports events, and everything of the sort.

      A life care plan simply spells out how important details will be addressed, as needed. It’s a living, breathing document. Once in writing, it can be updated to include new wishes or care directives. It defines, organizes, prioritizes and mobilizes every aspect of an elder’s care from life through death. These elements may include:

      My life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia, has a wonderful life care plan. It includes everything from enjoying music to donating his brain to science and vital organs for others to live on. It’s about enjoying life’s simple pleasures and helping others after he’s gone.

      A life care plan should be person focused. Brian often discusses losing 30 pounds post-diagnosis — only because he would sometimes forget to eat. That’s a pain point, and it may require only a gentle reminder from a care partner about meal times. But a good plan is not only about preparing for and reacting to crises. It should emphasize the development of ongoing relationships with loved ones.

      Remember, you’re caring for (and alongside) the person, not the illness.

      Build Your Care Partner Team

      We prefer the term “care partner.” The term “caregiver” or “care provider” implies a one-way transaction — a person providing the care. Words matter. Even linguistically, the perception of this one-way street disempowers the individual, empowering only the medical professionals and family/friends “seeing to” their care.

      Their voice matters!

      It’s a partnership between two (or more) people and characterized by mutual cooperation and joint responsibilities. An elder may choose their son, daughter, nephew, neighbor, best friend, doctor, third-cousin-twice-removed, or any other combination for a journey that requires support for everyone involved.

      Just as your elder may require help drawing a bath or cooking meals, their care partners may need resources in coordinating activities. A great team has well-defined roles. Perhaps a husband or wife does mealtime, while one of the children does laundry, and a sibling organizes a fun group activity for everyone to enjoy.

      Or maybe someone does it all!

      There are no strict rules for what a care partner team does or should do. Everyone cooperates for a life worth living!

      We Are #DementiaStrong

      The path ahead will be hard. But nothing good in life is easy. Just know We Are #DementiaStrong. Let’s work together to make a plan for memory loss while cherishing the memories that remain.

      Knowing where you and your loved one stand is the first step to creating a plan for the road ahead. For these decisions and more, Caregiver Support and Resources, LLC helps you to build a plan for today and tomorrow.

      Caregiver Support and Resources

      AND SO OUR JOURNEY BEGINS

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        Bob and Darlene’s daughter Jill works full time as a Marketing Director for a large manufacturing company. Her work had her on the road most days, in meetings with new and existing clients. Her hours are long and unpredictable. The pandemic has completely changed how she does her job and honestly, she is worried about how she can continue meeting her requirements for bringing in new business.  There doesn’t seem to be a moment in her day that her parents aren’t on her mind. Bob and Darlene are both in the 80’s. They have been married for 55 years. Jill knows that staying at home together is important to her parents; but sometimes she wishes that they would agree to go live in an Assisted Living Facility. Jill also worries that she has little knowledge of her parent’s finances, legal planning, medical history or insurance. Would they even have the money to receive care if they agreed to it? She knows that she needs to learn more about all of this. Her parents have always been very private people. It makes her feel uncomfortable to even ask her Dad any questions though.  How can she even start this conversation? Her Mom and Dad both have Doctor appointments coming up and Dad insists that they can handle it themselves. Jill really wants to go to the appointments with them.

        But Jill needs to focus on work. As she scrolls through her emails, she sees that her company is offering a Lunch-n-Learn Zoom meeting Thursday. The topic is Caring for Your Parents! This is a miracle!!!! Jill can feel some of the stress release just knowing that she might find some help. Then all the sudden the worry returns. If she attends this meeting, will it alert her boss that she is dealing with this in her life and will it cause them to question if her low new client numbers are as a result of her time and energy going to her parents? Maybe she shouldn’t risk it? Maybe she will look online and see if she can find something similar not connected with her work?   Her cell phone rings, she sees it’s her parent’s number. Dread fills her mind. “Hi Dad…what’s wrong”?

        Jill meets her Dad at the Emergency Room. Her Mom is getting x-rays. She fell and Dad had to call 911 because he couldn’t get Mom off the floor in the bathroom. The EMTs got her into the ambulance and brought her here. Dad doesn’t know why they had to bring her to the ER, he didn’t want them to; but they insisted. Jill asks her Dad what Mom was doing when she fell. He answers that he isn’t sure because he was in the kitchen preparing them lunch when he heard her fall. Jill starts to ask about their health insurance when they wheel Mom back in. Jill can see that her Mom is scared and anxious, her Dad stands up and goes over to the bed to hold his wife’s hand. Jill can see bruises forming on her Mom’s face and arms. They sit for hours waiting…. everyone’s anxiousness builds. Mom keeps trying to get up and leave. Dad tells her repeatedly that she can’t. Mom keeps asking why. By the time the Doctor comes in, Jill only wants this to be over.  

        The Doctor says that there aren’t any broken bones. When Darlene was admitted, they had asked about her medications. Now, the Doctor questions Bob as to the dosages Darlene is taking and when she is taking them. Bob admits that Darlene has so many Doctors who prescribe medications for her and that when they change the prescription or dosage he often gets confused. The Doctor tells Bob that he needs to make an appointment with Darlene’s Primary Care Physician to get a clean medication list for her. The Doctor then looks at Jill and asks “Will you be able to attend that appointment with them”? Jill says yes, but she can see her Dad shaking his head.  In the car on the way home Jill tells hre Dad that she really wants to learn how to help them. He says she is too busy and he doesn’t need help. But she knows they do…..

        Dying with Dignity Maureen Rulison Brian LeBlanc

        DYING WITH DIGNITY

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          Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

          In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

          Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

          With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

          One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

          This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
          – I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
          – I want them use my organs to keep someone else alive.
          – I want them to use anything they can to benefit others.

          I can’t think of a better way to help others, rather than just put me in a hole in the ground.

          In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
          Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

          Like I stated above, this is not for me but I respect those who choose this alternative.

          So, what do I want to happen during the dying process?

          • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
          • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
          • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

            This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
          • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
            I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

          Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

          Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

          With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

          You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

          Some things I forgot to mention was, I want to have a Celebration of Life.

          I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

          The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

          Doing this is one of the greatest gifs YOU can give to your Loved Ones.
          DON’T WAIT UNTIL IT’S TOO LATE!!!

          Until Next Time . . .
          PEACE!!!

          B