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Caregivers Corner: Dementia affects how patients can communicate pain

Mary Chaput Correspondent

Dear Mary, You recently wrote something about a person with dementia not understanding when they have pain. How can that be?

Dear Reader, For many years, it was believed that individuals living with dementia could no longer feel pain due to the brain damage caused by the dementia. Now we realize that individuals with dementia feel pain but may not recognize it for what it is and may no longer have the words to communicate what hurts, where on the pain scale it falls, and what kind of pain it is (stabbing, throbbing, acute, etc.).


For those of you who have attended the Communicating through Behaviors workshops or other dementia education programs, you may remember hearing about amnesia, aphasia and apraxia, three of the five A’s.

During the later stages of most progressive dementias, the individuals often lose verbal skills (aphasia) causing an inability to retrieve the words needed to tell the caregiver they hurt. Amnesia may cause them to forget about the pain before they find their words.

And then there is agnosia, a complex symptom resulting in the inability to recognize signs from the environment as well as from their own body. They may not recognize an eating utensil or how to use it; they may not recognize the sound of a ticking clock; they may not recognize faces and they may not recognize a full bladder or chest pains. The brain can no longer properly integrate perception, memory and identification.

Caregivers need to be aware of the nonverbal clues indicating that their loved one is in distress. Are they limping? They may have sprained or bruised an ankle or knee. Groan when they eat or use the bathroom? A bad tooth, ill-fitting dentures or constipation can be causing discomfort. Be aware that any sudden change in behavior is normally caused by something physical. Notify their physician and try to keep them comfortable.

Dear Mary, My sisters attended the dementia training where you are made to feel like you have dementia and told me I need to attend so I can better understand my dad’s behavior. Will you be having that workshop again?

Dear Reader, I am pleased that your sisters found the experience worthwhile and have encouraged you to attend!

With the holidays upon us, we’ve taken a short break from scheduling the Communicating through Behaviors with Dementia Live workshop but will be ready to go again in January. We will be facilitating the session from 1:30 to 3:30 p.m. Jan. 16 and from 6:30 to 8:30 p.m. March 28 and May 23. All sessions take place at the Department of Aging and Disabilities’ north county/Hein office at 7320 Ritchie Highway in Glen Burnie.

To register, call 410-222-4375 or email agchap01@aacounty.org.

If you have already participated in this training and still have questions, want to learn more about behavior management strategies, or would just like a refresher, join me from 6:30 to 8:30 p.m. Nov. 29 for Communicating through Behaviors: Part II. This session will also be held at the north county office. You can register online at www.aacounty.org/agingor by calling 410-222-4375

Dear Readers, In a few days, we will begin celebrating National Family Caregivers Month in November, a time to recognize and honor family caregivers across the nation. The Caregiver Action Network is the organization that chooses the theme for National Family Caregivers Month annually and spearheads celebrations nationally. This year’s theme is “Supercharge Your Caregiving.”

Celebrating family caregivers during November enables all of us to:

  • Raise awareness of family caregiver issues

  • Celebrate the efforts of family caregivers

  • Educate family caregivers about self-identification

  • Increase support for family caregivers

Former first lady Rosalynn Carter once said there are four kinds of people in the world: “Those who have been caregivers. Those who are caregivers. Those who will be caregivers. Those who will need caregivers.”

For those of you who were or are caregivers, please accept my heartfelt gratitude — and that of all Department of Aging and Disabilities’ staff — for what you do, not just in November but every day.

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Hospice- A True Story—


You will read a true story below written by a doctor regarding a hospice patient. This brings to home why you should plan and talk to someone who knows. Let us at Heavens Hands help you.


When the Hospice Care System Fails

Your father was gasping for breath. The hospice care providers had not yet trained you in how to respond. So you called 911.

By Daniela J. Lamas, M.D.

Oct. 17, 2018

Let me start with an apology.

When I saw that your 90-year-old father was in our emergency department, after being resuscitated while on home hospice, I assumed that I understood what had happened. As a critical care doctor, I have cared for patients whose families have changed their minds at the last minute, grasping on to impossible hopes rather than face the reality of death.

On the phone with the E.D. physician, I sighed. “Family?” I asked.

“Must have reversed the D.N.R.” — the do-not-resuscitate order that is standard for a patient on hospice care. “They’re on the way,” she said.

I told her I’d head down. I was fairly sure that nothing was going to change. But before we took this patient to the intensive care unit, tethered to machines he had never wanted, I wanted to begin to talk with you.

There your father was. He was so pale. A ventilator breathed for him. His body, wasted by cancer, flopped like a rag doll. I touched his fingers and they were cool, vessels clamped down by the medicines keeping his blood pressure from plummeting. I imagined caring for him in the I.C.U., trying not to hurt him even more.

You came in crying, your brother and a sister trailing behind. It was summer and you wore a flowered skirt, your brother in a T-shirt that said something happy about Hawaii. I walked up to you, introduced myself. I’m sure you don’t remember my name.

The social worker pointed us to a small meeting room down the hall. It must have doubled as an exam room and there were not enough chairs for all of us, so I sat down on a stretcher.

Your father had come home just the day before from the last in a long series of hospital stays for incurable cancer, you told me, weak but awake, with plans to begin hospice care at home. He had been able to talk to you and he seemed happy to be back in his own bed. He took little sips of juice.

The hospice team had stopped by as planned, to introduce themselves to your family and to begin the mountains of required paperwork. They explained that they’d return the next day to talk more about what would happen as your father grew sicker, to teach you about how to use the meds that would treat his pain and to sign an advance directive so that he would not end up back in the hospital. They didn’t want to overload you with too much on that one day.

But in the morning, before anyone from hospice had come back, your father’s breathing grew short. You did not yet have the tools to react when he started to gasp. You tried to do the right thing. First you called hospice. But as you waited on the line, your father stopped breathing altogether. Your brother panicked, yelled for you to call 911. This is what life had trained you to do in an event of an emergency, and so you called. You were so scared.

Over the phone, they coached your brother through the chest compressions. He did exactly as they said, and then he felt a crunch. At first he did not know what it could be but then he realized his father’s ribs were breaking. He asked if he was doing something wrong and the 911 operator said it was O.K., that he should continue, that sometimes ribs break. It meant that he was doing a good job, that his hands were strong.

He was still doing chest compressions when the emergency medical team arrived. They restarted your father’s heart with shocks of electricity, slid down the breathing tube. If it had been just a few hours later, he might have had a signed form at his home telling them not to do those things.

In the E.R., you took in a sharp breath, surprised, when I mentioned the tube. In the flurry of activity, you must not have seen them doing this.

“He’s not breathing on his own?” you asked.

“No,” I said.

You were quiet for a moment, we all were. But when you spoke your voice was certain. “He would never want that,” you told me. “He wanted to be at home with us. He didn’t want to die, but he never wanted to be kept alive by machines.”

I shifted on the stretcher. Then I explained to you that although I worked in the I.C.U., your father didn’t have to come up there. We could take out his breathing tube down there in the E.D. Your father would have wanted a chaplain, you told me, and so we could call one. It would not be the chaplain he knew, the one that might have been able to come to your home, but it would be the best that we could do. He would pass quickly, I said. We would make sure that he was comfortable.

You all nodded. It had happened so quickly. You never expected to end up here.

“I’m so sorry,” I told you.

Those words felt so small, but I wasn’t sure what else to say. I know that even in the best of circumstances, dying at home demands an incredible amount of family members, more than they expect, and surely more than doctors like me ever realize. I simply have no idea what it must feel like to be at home watching a person you love take his last breaths. Sometimes that reality is untenable. I’m not sure it’s even possible to fully ready yourself for this. Of course people get scared and plans fail.

But we didn’t even give you a chance to make it work. We could have made sure you filled out an advance directive before you left the hospital, but we didn’t. You trusted us to make a safe plan for your father, but you were left to watch him struggle without knowing how to help. You hadn’t yet learned that you could have given him medications to ease his breathing, to keep him calm. You didn’t have time to realize that calling 911 would start a cascade of interventions that your father had never wanted.

And now, your brother will always remember the feeling of his father’s ribs breaking under his hands. You will always remember the fear you felt when you saw your father gasp for air. You will know that he died in our E.R., behind a curtain, in a room that was not his own.

My apology can’t take away those memories. But I can hope that when you look back on your father’s death, you will also see this: You did everything you could. We’re the ones who must do better.

Daniela Lamas is a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston.

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