Tag Archives: dementia

Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.

Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

via Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

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May 30, 2020 · 5:31 pm

How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

With extra time spent at home in the midst of a pandemic, you may be in touch with your elder relatives more than ever. This is a great time to review the health status of your older relatives. When people are thrown off their routine, symptoms of dementia may become more apparent. This post from The Diary of an Alzheimer’s Caregiver offers excellent tips on when to consider memory care.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! Brain disorders like Alzheimer’s, Dementia, etc. are progressive conditions. In these diseases, the patient’s health tends to deteriorate with time.…

via How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

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Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.

Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…

via Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

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April 17, 2020 · 4:49 pm

Review the 2020 Alzheimer’s Disease Facts and Figures

The Alzheimer’s Association released their annual report around the time the coronavirus pandemic was ramping up, but I did not want to overlook the latest findings. I thought it was especially appropriate to post this today, on what would have been my father’s 88th birthday.

Here are the main takeaways from the 2020 Alzheimer’s Disease Facts and Figures report:

  • Alzheimer’s is the sixth leading cause of death in the U.S. 1 in 3 seniors die with Alzheimer’s or another dementia. The death rate from Alzheimer’s has skyrocketed. Between 2000 and 2018, the number of deaths from Alzheimer’s disease has more than doubled, increasing 146%.
  • More than 5 million Americans live with Alzheimer’s disease. Women make up two-thirds of that number; African-Americans are about twice as likely to be diagnosed with Alzheimer’s or other dementias compared to whites in the same age group; Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias compared to whites in the same age group.
  • Unless significant medical breakthroughs are made, by 2050, the number of Americans age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million.
  • 16 million unpaid dementia caregivers provide care valued at $244 billion annually. One in three caregivers are 65 and over, and two-thirds are women. One-quarter of dementia caregivers belong to the “sandwich generation,” caring for both an aging parent and minor children.
  • The cost of Alzheimer’s care to the nation is staggering. In 2020 alone, Alzheimer’s and other dementias will cost the nation $305 billion. What’s even more sobering is that half of primary care physicians believe the American healthcare system is not prepared for the growing number of those with Alzheimer’s and other dementias.

While these reports highlight the challenges we face in providing care for our loved ones with Alzheimer’s and other dementias, the Alzheimer’s Association proposes an action plan focused on education and recruitment to build up a corps of geriatric providers who understand the unique challenges that those with dementia and their caregivers face. The Alzheimer’s Association also encourages greater funding in the areas of rural healthcare and telemedicine.

2020 alz report

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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 

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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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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