Caregiving during COVID-19

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https://www.alz.org/greatermissouri/helping_you/virtual-programs-and-services

 

Caregiving during COVID-19

 

The social distancing guidelines in place across Missouri and Illinois have resulted in even more challenging caregiving situations. We’re here to help. Contained on this page is information about our ongoing support mechanisms – 24/7 Helpline and virtual and phone-based care consultations and support groups – as well as our enhanced online resources and education programs. Please take a few minutes to read about how we can help and support caregivers and persons with the disease during this difficult time. And plan to check back, as we will be updating the information on a regular basis.

As always, the Alzheimer’s Association is available to you 24/7 for around-the-clock care and support at 1-800-272-3900.

Click the buttons below to learn more about each resource.



Questions from Caregivers

Our staff and volunteers have been fielding a range of questions as families settle into their new “normal.” We’ve compiled a list of these questions and will be adding to it as new ones arise. Please click on the ‘Q&A’ button and it will open a tab with the complete list or click the ‘Q&A Videos’ button to visit our playlist of helpful videos addressing your questions.

 

Education Classes

Join one or more of our free online education classes to learn about the signs, symptoms, causes, risk factors, diagnosis, treatment, care strategies and resources for individuals impacted by dementia.

10 Warning Signs of Alzheimer’s: Learn how to recognize common signs of the disease; how to approach someone with memory concerns; the importance of early detection and benefits of diagnosis; positive tests and assessments for the diagnostic process, and Alzheimer’s Association resources.

COVID-19 and Caregiving: Caring for someone living with dementia during the COVID-19 pandemic adds unique challenges for caregivers. This program provides simple tips caregivers can put in place whether the person living with dementia lives at home, in a residential facility, or care providers are coming into the home.
Dementia Conversations: This program provides tips for breaking the ice with your family so you can address some of the most common issues that are difficult to discuss: going to the doctor for a diagnosis or medical treatment, deciding when to stop driving, and making legal and financial plans for future care.
Effective Communication Strategies: Join us to explore how communication takes place when someone has Alzheimer’s, learn to decode the verbal and behavioral messages delivered by someone with dementia, and identify strategies to help you connect and communicate at each stage of the disease.
Healthy Living for your Brain and Body: Join us to learn about research in the areas of diet and nutrition, exercise, cognitive activity and social engagement, and use hands-on tools to help you incorporate these recommendations into a plan for healthy aging.

Introduction to Alzheimer’s: Hear a brief overview of Alzheimer’s disease, dementia and the Alzheimer’s Association services. Topics include the impact of Alzheimer’s, risk factors, warning signs and how others can join the fight against the disease.
Legal and Financial Planning: This program will cover information for families and individuals dealing with Alzheimer’s disease or a related dementia. Topics covered will include: making legal plans that fit your needs; legal documents you’ll need and what they mean for all of you; how to find legal and financial assistance; practical strategies for making a long-term plan of care; tax deductions and credits; government programs that can help pay for care
Living with Alzheimer’s Middle Stage – For Caregivers: In the middle stage of Alzheimer’s disease, those who were care partners now become hands-on caregivers. Join us for this class as we discuss helpful strategies to provide safe, effective and comfortable care in the middle stage of Alzheimer’s.
Living with Alzheimer’s for Late Stage Caregivers: In the late stage of Alzheimer’s disease, caregiving typically
involves new ways of connecting and interacting with the person with the disease. In this 2-part series, you’ll hear from caregivers and professionals about resources, monitoring care and providing meaningful connection for the person with late-stage Alzheimer’s and their families.
  • Check back for more dates soon!
Understanding Alzheimer’s and Dementia: Join us to learn about the impact of Alzheimer’s; the difference between Alzheimer’s and dementia; stages and risk factors; current research and treatments available for some symptoms; and Alzheimer’s Association resources.
Understanding and Responding to Dementia Related Behavior: Join us to learn to decode behavioral messages, identify common behavior triggers, and learn strategies to help intervene with some of the most common behavioral challenges of Alzheimer’s disease.
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Care Consultations

Our social workers are available to conduct free care consultations by phone during this time. Care consultations provide families with a comprehensive needs assessment, individualized action plan to address current and future needs, and connections to critical chapter services and community resources.
To schedule a care consultation, call 314.801.0414.

Support Groups

Due to the COVID-19 outbreak, our support group structure has changed from in-person support groups to virtual – meaning connecting by video conference via your computer or by phone. The traditional groups are transitioning to virtual as the facilitator is able. These groups can reach you wherever you are!

Three ways to find a support group that meets your needs:
  • Call our 24/17 Helpline at 800.272.3900
  • Click the button below for a complete list of support groups
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  • Visit Community Resource Finder – click on ‘Alzheimer’s Association Programs and Events’ and then ‘Alzheimer’s Support Groups’.
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COVID-19 Tips for Caregivers

COVID-19 presents new challenges for caregivers and their loved ones living with dementia. Learn about safety tips and how to best care for your loved one whether they’re at home or in assisted living. Click here to view our tips for dementia caregivers.

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Additional Online Resources

  • Email us: Do you have a question or concern that wasn’t addressed on this page? Email us at greatermissouri-helpline@alz.org and a trained Alzheimer’s expert will get back with you.
  • ALZ Connected: ALZ Connected is a free online community for everyone affected by Alzheimer’s or another dementia, including people with the disease, caregivers, family members, friends, and individuals who have lost someone to Alzheimer’s.
  • Community Resource Finder: Community Resource Finder is a database that helps you easily locate dementia resources, programs and services in your area. Resources provided include Alzheimer’s Association programs and services, adult day centers, geriatric care managers, home care, housing options, hospice care, legal services and transportation services.
  • Alzheimer’s Navigator: Alzheimer’s Navigator is an innovative online tool to help caregivers and people living with dementia evaluate their needs, create a customized action plan and link to information, support and local resources.
  • United Way 2-1-1: United Way 2-1-1 is your 24/7 connection to agencies and resources near you. Serving United Way of Greater St. Louis’ service area and the entire state of Missouri, United Way 2-1-1 connects people to services that help them live their best possible lives – from basic needs to child care to disaster relief to counseling.
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Home-Based Activities and Resources

During this time of social distancing, those living with memory loss and their care partners may feel increasingly isolated and alone. To address the difficulties associated with staying home and being isolated from others, we have created a list of activities and coping strategies to help you through this time.

Click here to find virtual activities, resources, and tips on how to avoid conflict between caregivers and those with memory loss.

VADS to run out of funds by mid-October

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Adult Day Care center in desperate need of financial help

The Recorder

PORTERVILLE, CA – The COVID-19 pandemic could force the closure of Porterville’s Valley Adult Day Services and time is running out.

There are 690,000 men and women over the age of 65 with Alzheimer’s and dementia in California. Those who provide them service sat due to the pandemic’s shelter in-place orders, there have been physical and mental setbacks in this vulnerable population.

Those who provide service add they can’t wear face coverings, they don’t understand social distancing and if they tried to take their temperature, they wouldn’t be able to do it.

They add COVID has been financially devastating and is threatening the existence of adult day care centers that help those with Alzheimer’s and other dementias and make it possible for caregivers, some of whom are essential workers, to go to work. They are also allowed to do other tasks such as picking up prescriptions or simply taking a break.

“This virus has all but taken everything out from under our feet,” said Kayla Muller, Executive Director of Valley Adult Day Services (VADS) located in Porterville.

Valley Adult Day Services, a 501 (c)(3) nonprofit in existence for 30 years, is the only adult day care center in Tulare County licensed by the State. The center offers participants daily activities including exercise, writing, reading and math. But the state’s strict requirements for operating the center amid the pandemic, has cut the center’s number of participants from 30 to just 10.

VADS Board of Director Chairman Richard Eckhoff said that’s hardly enough to make ends meet. “We will run out of funds by the middle of October,” said Eckhoff. Eckhoff added the center is facing a deficit of $18,000 to $20,000 a month.

Advocates stated prior to the pandemic there was already a concern over the lack of adult day services in Tulare County. Kaweah Delta Health Care District, which operates the largest acute care hospital from Bakersfield to Fresno and offers a wide variety of healthcare services in the Central Valley, along with Quail Park, which offers retirement communities and memory care in Visalia, were actively working with VADS to provide another center in Visalia.

“Adult day care services are of significant value to our community. These centers can be extremely beneficial to participants, and can often help ensure that someone can remain living at home rather than move into a residential center,” said Marc Mertz, Vice President and Chief Strategy Officer of Kaweah Delta “They are also very helpful to family members and caregivers, who need a break from around-the-clock care and supervision.”

Advocates also state the COVID-19 pandemic has caused irreplaceable damage to Alzheimer’s patients and VAD participants. It should be noted VADS doesn’t just serve he elderly. Services are provided for anyone 18 and older.

Due to the pandemic, VADS had to close temporarily for three months. During that time participants such as Rebecca Carley had no place to go while their caregivers were at work and tending to other family tasks.

Michael Carley, Rebecca’s husband tried for weeks to manage her care while on videoconferencing calls for work and overseeing his son’s videoconferencing calls for school. She was also having trouble with balance. “It was less safe for her to be at home,” said Michael.

So, Michael, made one of the hardest decisions of his life – placing his wife in a full-time skilled nursing facility.

On May 13, Michael and his 12-year-old son drove Rebecca to the facility, with a box of her belongings and one-page introduction for the staff, a couple of family photos, and a note saying, “Rebecca loves art and beautiful things, pugs, scuba diving, Shrek, Aquaman, and Star Trek.”

On June 27, she died as a result of COVID-19.

“It’s amazing and heartbreaking,” said Michael, who after May 13 never saw his wife again in person. Rebecca tested positive for COVID on June 22, her 51st birthday.

She had a hard time adjusting, she wasn’t eating well and had lost one-third of her body weight, Michael said.

“There wasn’t COVID in the facility when she was placed, but once it got in, it was hard to prevent it from spreading,” he said.

Michael says he will remember Rebecca, not as the person she was in her final days, but as the wife, mother, musician, artist and avid scuba diver she was before COVID-19 took a hold of her. He does not blame the pandemic for her death, but chooses to focus on the value of VADS.

“They gave me another year and a half with my wife at home. Without their service I would have been faced with a decision to either quit my job or have her placed in a residential center in 2018,” he said.

Caregivers such as Michael pay less than $5 an hour for their loved one to be in day care for up to 10 hours. The fate of VADS depends on financial support, Muller said.

Muller said community support would ensure that an adult day care center remains a choice for caregivers in Tulare County.

“We work really hard to make sure that when someone comes in, we’re going to make them safe,” Muller said. “There is a financial component to this and unfortunately, we’re looking at devastating times when it comes to our client and the caregiver. We’ve been an outlet for them and we don’t know how much longer that can continue.”

Jennifer Corum, a Visalia resident and a newly appointed Valley Adult Day Services Board Member, said she can’t imagine what life would be without VADS. Her father was diagnosed with Alzheimer’s in 2015 at the age of 65.

“My mom was really in a desperate place when my dad was diagnosed and the day program was a light in a dark place,” she said “We were terrified and desperate. We knew we need care for him, but we didn’t know how to do that in an affordable way. This center bridges the gap for so many who are not able to put their loved one in a facility.”

Bob Patel, one of VADS biggest supporters, has organized a fundraiser at GoFundMe. The page has set a goal of raising $50,000. Those who wish to donate can go to http://www.gofundme.com/f/valley-adult-day-services

Valley Adult Day Services is located at 227 E. Oak Ave. For more information on VADS, please visit http://www.ValleyAdultDayServices.org or call 559-783-9815

COVID-19 Guidance for Caregivers of People Living with Dementia

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If you care for someone living with dementia, it’s important that you know what you can do to protect yourself and others during the COVID-19 pandemic and what additional steps you can take to protect your loved one:

  • Know when you need to seek medical attention for your loved one.
  • Call a healthcare provider if your loved one has symptoms of COVID-19.
  • Be aware that older adults with COVID-19 may not always have typical symptoms such as a fever or cough.
  • Use CDC’s Self-Checker guide to help make decisions about your loved one and know when to seek appropriate medical care.

If your loved one has advanced dementia and needs to be hospitalized for COVID-19, make sure hospital staff know that your in-person assistance might be required to communicate important health information and emergency support. Here are several important issues to consider:

Be prepared to be in a healthcare setting with your loved one. Be prepared to use personal protective measures as recommended by the hospital staff if you are in the room with your loved one.

Be aware that you and healthcare providers may face difficulties caring for your loved one because he or she:

May not cooperate with care and may not follow personal protective measures such as wearing a cloth face covering or practicing social distancing

May refuse diagnostic procedures

In this case, do as much as you can, or as much as you are allowed to, to help the person living with advanced dementia to follow CDC guidance.

  • If you get sick, follow CDC guidance and have a backup caregiver for your loved one.
  • Incorporate CDC guidance into your daily routine and the daily routine of your loved one:
  • Wear cloth face coverings and make sure that others wear them.
  • Do NOT place a cloth face covering on anyone who has trouble breathing, is unconscious, is incapacitated, or is unable to remove the mask without assistance.
  • Wash hands often.
  • Cover coughs and sneezes with a tissue.
  • Avoid touching eyes, nose, and mouth with unwashed hands.
  • Clean and disinfect frequently touched surfaces.

Caregivers: Be Aware of the Symptoms for COVID-19

The first step in caring for people living with dementia in any setting is to understand that changes in behavior or worsening symptoms of dementia should be evaluated because they can be an indication of COVID-19 infection or worsening stress and anxiety. Not everyone with COVID-19 has symptoms, but when people with dementia do have COVID-19 symptoms,4 they can include the following:

  • Increased agitation
  • Increased confusion
  • Sudden sadness
  • Coughing
  • Difficulty breathing
  • Fever
  • Chills
  • Repeated shaking with chills
  • Muscle pain
  • Headache
  • Sore throat
  • New loss of taste or smell

Caregivers Can Be First Responders Under Stress: Know How to Take Care of Yourself

As a caregiver, you provide care to people who need some degree of ongoing assistance with everyday tasks on a regular basis. During this pandemic, you may also be a first responder, providing the first line of response and defense to your loved one living with dementia. First responders often experience stress due to heavy workloads, fatigue, and other situations that come with an emergency. There are important steps you should take during and after an emergency event to help manage and cope with stress.10 To take care of others, you must be feeling well and thinking clearly. Here are some tips on how to take care of yourself:

  • Eat a healthy diet, avoid using drugs and alcohol, and get plenty of sleep and regular exercise to help reduce stress and anxiety. Activities as simple as taking a walk, stretching, and deep breathing can help relieve stress.
  • Establish and maintain a routine. Try to eat meals at regular times, and put yourself on a sleep schedule to ensure you get enough rest. Include a positive or fun activity in your schedule that you can look forward to each day or week. If possible, schedule exercise into your daily routine.
  • Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting.  If you want to stay up-to-date on the pandemic, visit CDC’s website for the latest recommendations on what you can do to protect yourself and those you care for.
  • Make time to unwind. Try to do activities you enjoy.
  • Connect with others. Reach out to family and friends. Talking to someone you trust about your concerns and feelings can help.
  • Call your healthcare provider if stress gets in the way of your daily activities for several days in a row.
  • Find a local support group. Support groups provide a safe place for you to find comfort in knowing you are not alone.
  • Have a backup caregiver. In case you become sick with COVID-19, a backup caregiver will ensure that your loved one continues to receive care. You can focus on caring for yourself.7

More Information

Source: CDC

Navigating the COVID-19 Reopening Process: Tips for Alzheimer’s Families

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Navigating the COVID-19 Reopening Process: Tips for Alzheimer’s Families

June 25, 2020

8:07 AM

As states around the country open up after months of prolonged isolation due to COVID-19, the Alzheimer’s Foundation of America (AFA) is providing tips to families affected by Alzheimer’s disease about how to protect their loved ones during the reopening process.

“Months of prolonged isolation understandably are making all of us eager to get out and about, but it’s important to remember that even though things are starting to reopen, COVID-19 has not disappeared,” said Allison B. Reiss, MD, a member of AFA’s Medical, Scientific and Memory Screening Advisory Board, Head of the Inflammation Laboratory at NYU Winthrop Hospital’s Biomedical Research Institute and Associate Professor of Medicine at NYU Long Island School of Medicine. “Individuals living with Alzheimer’s disease or other dementia-related illnesses have memory impairments that affect their ability to remember things like hand washing, social distancing or wearing a mask. Because of this, family caregivers will need to continue taking steps to keep their loved one as safe and healthy as possible.”

AFA recommends the following measures:

Reinforce preventive steps:  Continuing protocols recommended by the Centers for Disease Control and Prevention (CDC) to help protect against the virus, such as washing hands with soap and water for at least 20 seconds, especially after going to the bathroom, before eating and after blowing the nose, is vital.  Because Alzheimer’s impacts memory, someone living with it may need to be repeatedly reminded and helped with these procedures.  Steps caregivers can take to encourage hand washing include:

  • Explain what to do slowly, step by step.
  • Use a fragranced soap, such as lavender, to improve the person’s sensory experience.
  • Speak in a soothing tone.

Spend time outdoors (safely). Walking, exercising or even just being out in the yard are all good for the body (as long as you practice appropriate social distancing and wear masks when around others). Sunlight is also a great source of vitamin D, which can help strengthen the body’s immune system.

Watch what you eat. Maintain a balanced, nutritious diet with fewer processed, high-salt or high-sugar foods. Good hydration is also important, as is adequate vitamin D and C, both of which may help boost immunity.

Limit exposure. Avoid taking the person to grocery stores, restaurants or other large public gatherings. Because COVID-19 is spread when individuals are in close proximity with one another, your risk of contracting coronavirus increases as you are around more people. Limit the number of outside visitors who come into your home to lessen the chances of exposure.  Many doctors are utilizing telemedicine and video visits to see patients. This is another good option to avoid having to travel to in-person care sites.  These visits can be done with a family member or proxy present.

Source: Alzheimer’s Foundation of America

Families who have questions about caring for a loved one with Alzheimer’s disease can speak with a licensed social worker, seven days a week, through AFA’s Helpline, calling 866-232-8484. or sending a text message to 646-586-5283

https://caregiver.com/articles/covid-19-reopening/

Signs of Alzheimer’s Seen 18 Years Before Symptoms

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The results of a study from Rush University Medical Center in Chicago show that signs of cognitive impairment can be detected as early as 18 years before the disease is diagnosed.Signs of Alzheimer's Seen 18 Years Before Symptoms

Learn more about this study and what it means for early detection of dementia.

Signs of Alzheimer’s Seen Years Before Diagnosis

A research team led by associate professor of internal medicine at Rush University, Kumar Rajan, has found that early signs of cognitive impairment leading to Alzheimer’s may present themselves 18 years before symptoms occur.

Rajan and his colleagues observed over 2,000 seniors who did not have dementia over the span of 18 years. Every three years, the participants took a mental skills test and then analyzed the results over time. They found that those seniors who eventually developed Alzheimer’s has lower test scores throughout the 18 year period. In addition, their scores actually declined with each test.

Researchers concluded that for each unit their score dropped, the risk of developing Alzheimer’s increased by 85%.

Testing to Predict Alzheimer’s Risk

Researchers caution that their study only demonstrates a link between testing scores and a group-level risk and that as of now, the tests can not be used to predict an individual’s risk of developing Alzheimer’s. More research will be needed to determine how testing can be used to determine an individual’s risk.

For now, researchers believe their findings suggest that a cognitive test should be part of a regular assessment for people beginning in middle age. Catching Alzheimer’s early will give doctors more time to intervene and slow the progression of the disease.

Next, Rajan plans to study the effects of brain-stimulating activities on Alzheimer’s once it is diagnosed.

Do you think regular cognitive testing should be a part of standard medical care? Why or why not? Share your thoughts with us in the comments below.

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