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Guest Article: Challenges and Ideas for Recognizing and Treating Pain, Anxiety and Agitation in Persons with Dementia

It’s an honor to be able to post this article by Brad Macy, who is a veteran hospice nurse and inventor of the Macy Catheter. If you are finding symptom management is a challenge for the loved one with dementia you care for, this article provides valuable information.

As a hospice nurse for 25 years, one of my greatest challenges was getting needed medication into patients to maintain comfort when they lost the ability to swallow. While most patients lose the ability to swallow in the last days of life, persons with dementia often experience challenges taking oral medications earlier in the disease process. In later stages of dementia, the ability to swallow becomes impaired, making oral medication administration challenging and a safety concern. In addition, due to disorientation, persons with dementia can become uncooperative or even paranoid, refusing medication altogether. 

Many medications can be stopped when patients reach a point that they have difficulty taking medications orally. But medications that control anxiety, agitation, pain or other symptoms can be extremely important to continue for quality of life for both the patient and the caregiver who suffers along with the patient. Patients and caregivers deserve to know the importance of recognizing and controlling pain, agitation and anxiety and that there is a solution to give the needed medications even when patients have difficulty taking them orally. 

Pain, Anxiety, and Agitation in Patients with Dementia 

Caregivers reporting potential symptoms of pain are sometimes told by their doctor or nurse that dementia is not painful or that persons with dementia do not experience pain. This is not true. Several studies have indicated that pain is present in at least 50% of persons with dementia. (1-4) Because of cognitive dysfunction, patients may not be able to communicate pain effectively. Caregivers need to recognize non-verbal signs of pain. For instance, if a patient winces or moans when moved it is a sign of pain and should be addressed. Crying or agitation may also be a sign of pain. If patients had a history of chronic issues with pain such as arthritis or migraines prior to dementia, it can be assumed that these issues with pain will still be present with dementia.

During the later stages of dementia, persons may have a heightened sense of pain, known as (hyperalgesia) or even have a pain response to non-painful stimuli (allodynia) where even the slightest touch can be painful. Other patients may have orthopedic injuries and need medications for pain control.  Caregivers are sometimes worried that medicating for pain will cause the patient to become too sleepy or more disoriented. On the contrary, proper medication can help the patient sleep better which leads to better functioning during the daytime. Many times, Tylenol or ibuprofen may be all that is needed, but a low dose of a stronger pain medication should not be ruled out.  If a patient is started on a stronger pain medication, they may be sleepier at first. Give it a few days, as the body adjusts to these effects within 48 to 72 hours.

Anxiety and agitation can be a common problem in dementia and many times patients are on medications over a long period to help with these symptoms.  If these medications are stopped because patients can no longer swallow, a rebound in symptoms is likely. As the disease progresses, a greater number of patients have difficulty taking medication while at the same time anxiety and agitation tend to worsen. Clinicians may shy away from medicating patients at this stage due to concern about using anti-anxiety medications, or concern that the patient may aspirate the medication or become more agitated, refusing the medication. Fortunately, options exist to ease suffering due to pain, anxiety, and agitation.

Challenges with Giving Medications

Caregivers desperate to get medication into the patient may crush medication and add it to food. This can lead to spoiling the food taste, which can negatively affect the joy of eating and interest in food. Mixing medicine with food can sometimes intensify paranoid thinking, and some patients may even believe they are being poisoned.  

When patients have difficulty swallowing, another common practice is to put drops of medication (or a quickly dissolving tablet) under the tongue.  While this works in certain instances with a few highly concentrated medications, it is rarely effective for severe symptoms and can increase the aspiration risk if medication volume is more than a few drops. Aspiration (defined as food, medication, and secretions inadvertently entering the lungs) can be a significant problem for patients with dementia and with difficulty swallowing.  Aspiration can lead to anything from an uncomfortable coughing and gagging episode, to increased agitation, unwillingness to eat or take medications, or even more serious consequences of pneumonia or bacteria in the blood stream, also known as sepsis. 

Macy-Catheter-Device

Hospi Corporation

I want patients and caregivers to know that there is a comfortable, easy and effective solution to giving medication when swallowing is difficult. The challenge of medicating patients who cannot swallow led me to develop the Macy Catheter.  It is now being used in hospices across the country and allows administration of medication discreetly into the rectum without the need for using needles or suppositories. 

Brad’s Story 

BradMacy_Headshot

In his 25 years practicing as a hospice nurse, Brad saw many patients and their caregivers suffer with physical symptoms of pain, agitation and other challenges when they lost the ability to swallow. This challenge of helping patients and caregivers continue providing important medications led him to create a way to easily, comfortably and safely give medication to patients who could no longer swallow. 

One night, Brad had a very agitated patient who was at home and refusing to swallow his medications. The patient’s son was at wits’ end. He had promised his father he could stay at home for his last days and not go to the hospital. While the patient had oral medication for the control of his agitation at the bedside, he was too agitated to take it.  In an effort to get the patient comfortable quickly, Brad placed the medication in a liquified form into the patient’s rectum with a small, flexible, medical tube. Within fifteen minutes Brad and the patient’s son both watched the agitation melt quickly away and the patient became calm and went to sleep. Brad rigged a way to leave the tube and attached the end of the tube to the patient’s leg where the son could squirt in the medicine without ever having to invade his father’s privacy or even move or bother him to repeat the medication doses. The son was thus empowered to keep his father completely comfortable until he died peacefully a week later. He was extremely grateful for being able to offer his father a good death. 

This was Brad’s “ah ha” moment. He started to use the same method for the myriad of different problems he encountered such as pain, infection, nausea, seizures, fever and respiratory distress and even hydration. It worked so well that the hospice he worked at asked him to train the other nurses and adopted the idea into practice. Soon nurses at other agencies began to hear about the idea and asked him to teach them the method. This was his second “ah ha” moment as he realized the great need for the solution he had stumbled upon, and that a simple, safe, easy to use, optimized device to facilitate this method was needed.  Brad co-founded Hospi Corporation and developed the Macy Catheter® which is now an FDA cleared medical device being used in hospice programs across the country. The Macy Catheter® is a small, flexible tube placed about one inch into the rectum. A small soft balloon the size of a quarter is inflated to keep it in place. When a patient has a bowel movement, the catheter is comfortably expelled and can be replaced. It is easy for caregivers to use and completely comfortable for the patient. It provides a way to continue medications at home, without the need for trips to the hospital or emergency room or the need for intravenous medications.  Learn more at www.macycatheter.com.

1. Zwakhalen SM, Koopmans RT, Geels PJ, Berger MP, Hamers JP. The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain. 2009;13:89–93. 
2. Van ‘t Hof CE, Zwakhalen SM, Hamers JP. Interventions after diagnosing pain in nursing home residents with dementia: the pilot implementation of an observational pain scale (PACSLAC-D) Tijdschr Gerontol Geriatr. 2011;42:67–78. 
3 Patel KV, Guralnik JM, Dansie EJ, Turk DC. Prevalence and impact of pain among older adults in the United States: findings from the 2011 National Health and Aging Trends Study. Pain. 2013;154:2649–57. doi: 10.1016/j.pain.2013.07.029. 
4. Corbett A, Husebo B, Malcangio M, Staniland A, Cohen-Mansfield J, Aarsland D, et al. Assessment and treatment of pain in people with dementia. Nat Rev Neurol. 2012;8:264–74. 

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