Category Archives: Awareness & Activism

2021 Alzheimer’s disease facts and figures

While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.

READ: 2021 Alzheimer’s disease facts and figures

Some important takeaways:

  • More than 6 millions Americans are living with Alzheimer’s
  • Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
  • 1 in 3 American seniors die with Alzheimer’s or other dementia
  • This year, Alzheimer’s and other dementias will cost the nation $355 billion
  • The value of the care unpaid Alzheimer’s caregivers provide is $257 billion

One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.

As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.

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Do you have a winter weather caregiving plan?

As a former resident of Texas, I have closely monitored the widespread power outages caused by winter storms this week. Having experienced the vicious ice storms that can strike North Texas, I am not surprised, but saddened. Texas and the entire southern region of the United States are ill prepared to handle a lengthy, severe winter blast. Governments in these states are reluctant to invest significant money to prepare for a weather event that typically only happens once every several years.

The power is slowly being restored and conditions should begin to improve in Texas. There will be calls to hold officials and utilities accountable, to better winterize the equipment so a catastrophe like this doesn’t happen again. But caregivers need a plan of their own to keep themselves and loved ones safe. If there can be any positives to come of of the crisis in Texas, it is that people will be prompted to think about their own situation and how they would survive if faced with such dire circumstances. Here are some things to consider.

  • Stay or evacuate: There are many factors to consider when deciding whether to evacuate before a significant weather event. While most people would rather remain in their homes, a loved one’s medical condition may determine what is the safest approach. Does your loved one need routine medical care, such as dialysis, that is provided at a facility? Hundreds of dialysis clinics lost power and water during the Texas storm and were unable to provide services. Does your loved one receive oxygen or on a machine that requires electricity? Rolling blackouts in Texas left some caregivers in fear of medical equipment failure. If you plan to ride out the storm, do you have the space to stock up on shelf-stable food, medications and medical supplies?
  • Power and clean water sources: In Texas, the two main issues are the lack of power, which means people can’t heat their homes, and a lack of clean water, due to frozen pipes and water treatment plant issues. As a caregiver, are you prepared to tackle these problems? Do you have a reliable backup power source like a generator? Do you have ample fuel to run such equipment? If you have a fireplace, do you have enough wood and do you know how to operate it? Do you have a supply of drinking water stored or a clean water source? People are getting creative in Texas, boiling snow to use as a water source but experts warn that this still carries health risks.
  • Evacuating after the storm: You’ve probably seen the videos of cars going sideways trying to navigate their neighborhood’s icy streets. Removing snow from walkways and digging out cars is strenuous, and can even trigger heart attacks. Will you be able to evacuate yourself and your loved ones safely if you need to leave after a winter storm strikes? Those living in rural areas may find roads to be impassable, due to heavy snow, ice or fallen trees. Road crews focus on the highways, meaning your neighborhood streets will likely not be treated. Plan your evacuation route ahead of time.
  • Reach out for help: Don’t wait until disaster strikes. If you have concerns about how you and the loved ones you care for will fare in a winter storm, address them now. Talk to other family members, neighbors, church members, etc. and make a safety plan. Talk to your loved one’s doctor if you need assistance in coordinated medical care during inclement weather. While one can hope to never have to implement such a plan, having these resources available during a crisis can make all of the difference.

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Rural areas finds winning formula for vaccine distribution

Photo by Artem Podrez on Pexels.com

I spend quite a bit of time on this blog discussing the challenges of delivering health care, and in particular, elder care, in rural regions of America. But I want to highlight a recent success story: West Virginia’s COVID-19 vaccination system.

West Virginia, one of the country’s poorest states and ravaged by the opioid epidemic, seems an unlikely source when it comes to innovations in health care. As of this week, 11 percent of West Virginia’s population has received at least the first dose of the COVID-19 vaccine. In comparison, wealthier states such as Massachusetts and California have only vaccinated 7 percent of their populations. Of course population size has an impact, but considering the bumpy rollout of the vaccine nationally, it’s a fairly impressive feat.

What is the key to West Virginia’s success? Simplicity. The state has opted to manage their vaccine program closely at the state level, instead of delegating the entire complex process to county or city governments like many other states. Vaccine supply is distributed to five hospitals in different areas of the state, which then distribute it to local agencies and medical centers familiar with administering other vaccination programs such as the flu vaccine. They’ve also leaned on the state’s National Guard forces for their logistical expertise.

The centralized approach avoids some of the complications that can arise even with well-meaning collaborations from outside agencies. For example, West Virginia was the only state to opt out of a federal partnership with pharmacy chains Walgreens and CVS that assisted states in getting nursing home residents and workers vaccinated. West Virginia instead utilized the local pharmacies throughout their state and were able to complete the process before many states had even began, according to The Washington Post.

West Virginia isn’t the only success story. Rural communities in other states also have shared their vaccination success stories, many using old school tools like the phone and word of mouth to reach out to residents directly. There is often a collaborative effort in small towns, where everyone from the public health officials to firefighters and librarians willing to jump in and do their part, Reuters reported.

The vaccination effort is leading to a decline in nursing home coronavirus cases, according to health officials.

It’s a good thing these rural communities have found a way to get a jump start on vaccinating their residents, as the lack of medical care resources means those who develop coronavirus may not get the specialized treatment they need in time or have to be moved far out of the area. There is also an increasing worry that issues with vaccination supply may mean rural areas have to wait longer for additional supplies, while urban and suburban areas catch up.

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Finding a Live-In Arrangement That Works — Dealing with Dementia

Plan ahead for your elder loved ones who live alone and wish to age in place. You will want to take your time in vetting care workers and finding one that is the right fit. Kay Bransford offers helpful tips on her blog.

Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. 472 more words

Finding a Live-In Arrangement That Works — Dealing with Dementia

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Navigating the COVID-19 vaccine maze for you and your elder loved ones

The good news is that COVID-19 vaccines have been developed in record time and are being rolled out to the public. The bad news is that the distribution of the vaccines is off to a rocky start.

Front-line health care workers and nursing home residents are supposed to be top priority when it comes to the first phase of vaccine distribution, according to federal officials. The problem is that the coordination and management in distributing the vaccines has been left to local governments, meaning each city/county/state has their own rules on how the public can sign up to get the vaccine. New York City residents report facing a ton of red tape in trying to make an appointment. Some regions have online only appointment systems, which can be a roadblock for those who are not tech savvy. The strict temperature requirements for the vaccines mean that in certain cases, places open up vaccinations to anyone, in order to avoid having to discard spoiled doses. The chaos that has ensued and the lack of efficient communication at the local level has left some elders to contact their local media outlets for assistance in setting up a vaccine appointment.

In short, it’s a mess. I do have some hope that more stable leadership at the federal level will help iron out the vaccination rollout. Getting the pandemic under control will be the top priority, and there should be a greater willingness to partner with local governments to support the success of their vaccination programs. This truly needs to be a group effort. The more effective the vaccination program is, the quicker people can return to the lives they cherish, including spending time with family and supporting the businesses in their community.

So if you are an elder or an elder caregiver, where do you begin? Start with your family physician, who can confirm which vaccine phase group you are in, and offer a general timeline on when you may be eligible to receive the vaccine. Next, reach out to your local health department. Policy & Medicine offers this state-by-state list of local health department resources. Be patient, as websites and hotlines are overwhelmed right now. As the vaccine stockpile grows, there will be more places that will offer the vaccine, including pharmacy chain stores like CVS. Finally, don’t skip the second (booster) shot! It is necessary for the vaccines currently available to the public. I’ve seen several news reports of a steep decline in the rate of people returning to get their second vaccine dose. While a single dose will offer some protection, two doses are necessary for the most effective protection. Johnson & Johnson is working on a single dose vaccine, which hopefully will gain approval soon.

If you or your loved one has received the vaccine, please comment below about your experience.

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Care issues to receive holistic approach in new administration

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There are no adequate words to describe what America has experienced over the past week. But it is important to not lose sight that a new administration will be sworn in later this month, and while they will have their hands full with dealing with the aftermath of an attempted violent overthrow of our government and a raging pandemic, there is optimism that the Biden-Harris administration recognizes the need for a comprehensive plan to address caregiving issues. Joe Biden has been a caregiver, so he understands the issue at a personal level. Kamala Harris supported domestic workers’ issues while serving in the Senate. With a slim Democratic majority in both houses, there is a greater chance that some of these initiatives will become law. Let’s take a brief look at how the Biden-Harris administration wants to address caregiving issues. The complete Biden-Harris caregiving plan is available online.

  • Holistic approach: Care needs across the age spectrum will not be separated but addressed in a holistic fashion. Many families members are a member of the “sandwich generation,” caring for children and for aging relatives at the same time. There has long been a greater focus on childcare in this country in comparison to aging issues and I hope this imbalance will be corrected.
  • Building infrastructure of care: Biden’s plan is designed to address shortcomings in many areas of caregiving by reforming certain programs and launching new initiatives. For aging care, this would include providing more support for aging in place services, in part by reforming Medicaid and reducing the wait list and by establishing a fund to pay for home care and community care. Biden would seek to increase the caregiver workforce by offering better pay and basic benefits such as health care and paid leave. Tax credits and social security credits for caregivers would also be considered. Veterans and people of color would receive special attention to address past inequities.
  • Public health jobs corps: I’m particularly interested in the formation of a public health jobs corps. While it first would assist with the COVID-19 pandemic, eventually the corps would be used to support community health programs. A public health corps that served rural areas could be huge in allowing aging loved ones to safely stay in their homes.
  • How much will it cost? The ambitious plan has a hefty price tag of $775 billion over a decade. While elements of the plan, like caregiver tax credits, may receive bipartisan support, there will be plenty of pushback from fiscal conservatives on other components of the plan. While I support taxpayer dollars being utilized in an efficient, prudent manner, I also think that caring for its citizens should be a top priority of any country.

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Wishing you peace in the new year

While many people, including myself, will be saying “good riddance” to 2020, we know that turning the page on a calendar will not make things magically better. Caregivers will still be overwhelmed by the COVID-19 pandemic, though vaccines are beginning to roll out. Sadly, it will not be soon enough for some, and more people will grieve the loss of a loved one due to coronavirus in 2021. Other terrible diseases, such as Alzheimer’s and cancer, will continue to take a toll. Our dedicated health care workers and other essential workers will continue to be overworked, underpaid and sacrificing their physical and mental wellbeing for the rest of us.

But there are glimmers of hope that 2021 won’t be as devastating as 2020. We’ve learned so much in this terrible year, and in 2021, we will get to apply those lessons in our lives. It is my hope that you and your loved ones can find some sense of peace in the new year as we work to make each day a bit brighter. It won’t be easy, but caregivers are tough and compassionate, and that is an amazing combination of qualities to have during difficult times.

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Holiday gift ideas for dementia caregivers

We could all use some good cheer and a thoughtful gesture after such a challenging year. It you are looking to get a gift for a dementia caregiver, here are a few ideas.

Self-care: Family caregivers are notoriously bad about taking care of their own needs, but caregiver burnout puts everyone at risk. Caregivers are often short on alone time, so take that into consideration when choosing gifts. A candle with a soothing scent, calming tea, music to lift the spirits, a book of daily inspirational posts —choose something that will allow a caregiver to enjoy a momentary respite even while they are isolating at home with their loved one. Take a look at my CBD gift guide for other self-care gift ideas.

Homemade gifts: Whether it’s a favorite dish, a knitted item, a phone call or a handwritten card, showing you care in your own special way makes for a thoughtful gift. Family caregivers, especially of those with dementia, often feel isolated as friends drift away, uncertain how to navigate cognitive impairment. Simply reaching out with a small token of affection is worth more than you can imagine.

Helping hand: If you are a handy person, consider offering your services to repair something in or around the caregiver’s home (of course taking precautions due to the pandemic.) Or consider a subscription to a meal delivery service, or a gift certificate for grocery delivery or delivery from their favorite restaurant. Anything that will ease the burden of maintaining the household will be appreciated.

Genealogy: Some people with dementia remember the past better than the present. A gift for a genealogy service or scrapbooking materials for those who are not digitally inclined can be a gift for both the dementia caregiver and the loved ones they care for. Capturing those family memories is priceless. Gathering old photos and assembling them while remembering family stories can be a wonderful bonding activity. I find both the online services and scrapbooking to be enjoyable. This is also a good project to do while housebound due to the pandemic and/or inclement weather.

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The Link between Dementia and Mismanaged Finances — Dealing with Dementia

My father began to struggle with money issues years before other signs of dementia became apparent. He would argue with clerks because he thought they overcharged him and had trouble paying for items in cash, especially if change was involved. He began to carry a large wad of bills around and would dump large piles of coins on the bed in an attempt to “sort” them but there was no organization taking place. Your loved ones may have more subtle signs of financial issues due to cognitive decline, but it is important to monitor.

Read more below from Kay Bransford of Dealing with Dementia.

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis. SIX YEARS. You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care…

The Link between Dementia and Mismanaged Finances — Dealing with Dementia

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Being grateful in a year of turmoil

It will be a different kind of Thanksgiving celebration this year for many families. Smaller gatherings, not getting to hug elder loved ones, some spending the holiday in isolation.

I hope by this time next year, we will largely have put the coronavirus epidemic behind us. Having spent almost the entire year in its grips, we must be resilient for the next few months as vaccines become available. I know many are understandably exhausted, but there does appear to be a light at the end of this tunnel.

There are many things to be grateful for this year.

I am grateful to the healthcare workers, from the ICU nurses to nursing home staff to home health aides, who put their lives on the line each and every day to take care of the rest of us. That is an awe-inspiring sacrifice. (To the thousands who lost their lives to COVID-19 while caring for others, I express my gratitude to their grieving families.)

I am grateful to all of the frontline workers, from grocery store clerks to transit employees to those in food production and utilities. They kept the rest of us who were isolating at home up and running, so we could continue doing our jobs and taking care of our families.

Of course I want to give thanks to the family caregivers. The stress and anguish they have gone through this year is devastating. I’ve read so many heartbreaking accounts of families not being able to visit loved ones in nursing homes because of lockdowns. Watching their loved ones physically and mentally decline via Zoom or standing outside, separated by a glass door or window is something no one should ever experience. Many families couldn’t even be with their loved ones as they died. For those caring for vulnerable family members at home, every sniffle put one on high alert. Trying to keep loved ones at home healthy, comfortable and entertained while reducing their risk of infection is a monumental task. Many caregiver resources have been limited or shut down due to the pandemic, leaving families to fend for themselves.

This Thanksgiving, I hope you are able to find some joy and comfort, even if your celebration has to be altered due to the pandemic. As a token of gratitude, I am participating in a book giveaway. Both The Reluctant Caregiver and CBD for Caregivers are available for free.

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