Tag Archives: dementia

Guest post: How to Help Your Senior Loved One Stay Healthy from Afar

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I’ve been blessed recently to have two guest authors submit pieces to share on The Memories Project. Today’s post is written by Claire Wentz of Caring from Afar. It is an especially appropriate topic to discuss as we practice social distancing due to the coronavirus.

When you have a senior loved one who lives far away, it can be stressful to ensure they are well taken care of at all times. Travel may not always be feasible, especially if you work outside the home or have family obligations, and it can be expensive. Fortunately, there are some things you can do to ensure that your loved one is safe, healthy, and comfortable no matter how far away you are. Using technology to your advantage is always a good idea; here are some tips on how you can utilize it as well as some ideas on how to help the senior in your life stay safe and happy.

Take Advantage of Smartphones

Smartphones are a useful tool for seniors since they provide a way to contact friends and loved ones as well as a way to stream content and play games and puzzles via apps that will help keep their cognitive skills sharp. You can also download a location-tracking app to their phone so that you can locate your loved one in case of emergencies. If your loved one is unsure of how to use a smart device, look for a class near them (or online) that will help them learn the ins and outs of phones and tablets.

Help Them Invest in Smart Tech

These days, there are several different kinds of smart tech available for the home, and it’s a great way for seniors to be more independent and safe. From home security systems to voice-activated virtual assistants and smart appliances, there are so many ways seniors can utilize technology in their everyday lives and make it a seamless transition. Talk to your loved one about their specific needs, such as whether they could use a virtual assistant that will give them voice control over everything from making phone calls to turning on the oven.

Help Them Find a Hobby

Hobbies are wonderful things; not only do they help us stay happy and boost our mental health, but they can also affect our physical wellness. From playing a sport to woodworking and gardening, there are many different kinds of hobbies out there that are perfect for seniors of any age. So, talk to your loved one about their favorite things to do and help them find a group in their area to join or an online group where they can feel like they’re a part of something and remain social. If the hobby involves physical activity, all the better, as seniors need daily exercise in order to prevent many health issues and falls.

Talk to Their Neighbors

Whether your loved one owns their home or rents an apartment, it’s a good idea to talk to their neighbors and get to know them a little. Creating a rapport with the people closest to your loved one will help to give you peace of mind when you live far away, as they may be able to help out when you’re not there. Exchange information so you can stay in touch with one another, especially if your loved one lives alone or is aging in place.

Helping a loved one stay healthy and safe when you live far away can be challenging, but with the aid of technology and a few lifestyle changes, the senior in your life can ensure that they are safe and comfortable throughout the years.

Learn more caregiver tips at Caring from Afar.

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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 

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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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What dementia caregivers need to know about the coronavirus

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Managing the health of our loved ones with dementia is difficult enough even when we are dealing with the annual flu season. This year has ushered in a new coronavirus, which is causing an outbreak of serious respiratory disease that began in China and has now spread across the globe, including in the U.S. While 24/7 news coverage has caused some to panic and others to go into denial, caregivers should be concerned about the coronavirus, as they would with any virus which is highly contagious and has a higher mortality rate in older populations and those with compromised immune systems.

Here are some tips for caregivers of those with dementia as they encounter a world which has been disrupted by the coronavirus. (Disclaimer: I am not a medical professional. If you have any questions surrounding the coronavirus, please consult a physician.)

  • Symptoms: Those with dementia often can’t clearly express how they are feeling. Their caregivers must be vigilant in tracking any changes in their physical health. According to the CDC, there are 3  main symptoms associated with coronavirus: fever, cough, and shortness of breath. Emergency symptoms include difficulty breathing, chest pain, new confusion separate from dementia, and bluish lips or face.
  • How it spreads: The CDC believes that the coronavirus spreads easily, primarily by person-to-person contact. The CDC recommends not touching your face, covering your mouth when sneezing or coughing, frequent hand washing, and frequent disinfecting of commonly used surfaces and objects. Caregivers will want to pay special attention to their own health, and make contingency plans now for who will take care of your loved one if you contract the coronavirus.
  • For those with dementia who are diagnosed with coronavirus: If they have a mild case that does not require hospitalization, you will want to keep them isolated at home, separate from other family members. Those with dementia are often sensitive to any changes in their routine, so you may need to get creative in explaining these changes to your loved one. Use your best judgment, but it may  be best to avoid potentially frightening words like “quarantine.” Try to involve your loved one in tasks they enjoy, such as puzzles, crafts, or listening to music or watching TV. Keep your loved one comfortable and monitor for any spikes in symptoms; unless it’s an emergency, call ahead if you need to visit the doctor.
  • Keep public outings to a minimum: You may want to keep public outings to a minimum until the coronavirus outbreak is under control in your community. It can be a challenge to manage the movements of those with dementia in public settings and they may not comprehend or forget instructions such as hand washing.
  • What about facemasks? The CDC does not recommend facemasks for those who are healthy. For those with coronavirus and their caregivers, facemasks are recommended. It may be a challenge to keep a facemask on a person with dementia, which is why it’s so important for caregivers to wear masks and to isolate those who are ill so they cannot spread the disease.
  • What can caregivers do to prepare? Plan now for a potential outbreak in your community. Stock up on supplies, including food, hygiene, and basic medical supplies. Make sure prescriptions are filled. If your loved one is used to attending activities such as adult day care, create alternative activities at home. Make a contingency plan in case you become sick. Contact your support network and develop a specific coronavirus plan. Reach out to public health agencies in your area for further aid.

It is too early to know how much of an outbreak of coronavirus we will experience in the U.S. I do think it’s going to get worse before it gets better. And if history is any indicator, there may be additional outbreaks that arise in future seasons, so caregivers should remain vigilant even if there is a lull in the summer. Take proper precautions for your loved one with dementia and yourself, and we should be able to weather this storm.

Next week, I’ll discuss the challenges that nursing homes are facing in trying to prevent coronavirus outbreaks in their communities.

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Dementia and Dinner — When Dementia Knocks

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What we eat, and how we eat says a lot about who we are. If a loved one forgets to eat, add meals because they forgot they already ate, or start altering foods in strange ways, that may be a sign that it’s time to visit the doctor. In her recent blog post, Dr. Elaine Eshbaugh discusses common ways that dementia can alter a person’s dietary routine.

With my father, it meant he had an increased appetite, but sometimes forgot how to use utensils. Near the end of his life, he forgot how to swallow, which is a more complex action than people are aware of.

We eat to live. But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions. Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My […]

via Dementia and Dinner — When Dementia Knocks

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February 1, 2020 · 10:06 am

National Caregiver Appreciation Month eBook Sale & Giveaway

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I can’t believe it’s this time of the year already, but November is National Caregiver Appreciation Month.

Supporting caregivers is one of the issues I’m most passionate about. Having been a family caregiver for my parents, I know how tough it can be. So I’m always happy to participate in the  annual National Caregiver Appreciation Month eBook Sale & Giveaway hosted by AlzAuthors. All books will be discounted from Nov. 21-25, with many books priced at 99 cents and some books will be available for free. You can get my award-winning book, The Reluctant Caregiver, for just 99 cents.

AlzAuthors is a group of more than 200 authors and bloggers who write on the topics of Alzheimer’s and other dementias. Many of the authors are family caregivers. I’ve seen this group grow and participate in many wonderful events over the years, and I’m honored to be a member.

In addition to books, AlzAuthors has a fundraiser going on through Nov. 25. Buy a cozy fleece jacket with the lovely AlzAuthors logo for just $44.99. These would make great holiday gifts for the caregiver in your life! All proceeds will support the continued outreach of AlzAuthors.

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Continuing care at home: Pricey but intriguing elder care option

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I’m always on the lookout for nontraditional elder care options. As we face a growing elder population, we are going to need some out of the box thinking and smart innovation to meet the high demand for elder care and elder-friendly housing.

A recent New York Times article highlighted one such option: continuing care at-home, an offshoot of the more well-known continuing care retirement communities. The NYT refers to the at-home option as a CCRC without walls. The goal is to keep people living comfortably and safely in their homes for as long as possible and for as long as the person desires, but with the option to move into assisted living if needed.

Instead of moving into an independent living apartment on a CCRC campus, people remain at home. Members are assigned a “care navigator” who monitors their health daily living needs. This hybrid aging at home with the option for supportive home care services and residential care could be attractive to baby boomers.

However, there are some downsides. The main one is cost. While the at-home version of the CCRC is cheaper than the traditional format, it’s still requires a hefty entrance fee (typically tens of thousands of dollars) plus monthly fees. In many cases, elders sell their home and move into more affordable housing in order to cover the costs. This is not a financial option for everyone.

There are also medical requirements to enter such programs, with a dementia or Parkinson’s diagnosis, among others being disqualifiers.

So it’s not for everyone, but it could be a good compromise for those who can afford it and want to remain in their homes as long as possible.

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Looting the elderly via CRAIN’S COMMENTS

In my line of work I read about so many cases involving criminals preying upon the elder population. Those with dementia are particularly vulnerable. As family caregivers, be vigilant upon checking bills, bank statements, etc. There’s a fine line between allowing your elder loved one to maintain their independence and protecting them from criminals, but it’s important to be aware.


IN 2017, financial institutions filed 63,500 inquiries regarding suspected fraudulent activities involving senior clients. That’s up 400% over 2013, and may still represent 2% or less of actual crimes. Traditionally, the elderly have been victims of their own family and care-givers. Now there are concerns that they are being victimized by financial professionals they trust, […]

via Looting the elderly — CRAIN’S COMMENTS

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November 9, 2019 · 10:15 am