Category Archives: Awareness & Activism

Latest Alzheimer’s report demands action

The Alzheimer’s Association released its 2019 Alzheimer’s Disease Facts and Figures report, and the statistics are sobering. Almost 6 million Americans are living with Alzheimer’s disease, and it is the sixth-leading cause of death in the U.S.

On the caregiving front, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. The value of their work is approximately $234 billion.

While the numbers are grim, the 2019 report makes crystal clear that we need bipartisan support at the federal level in addressing what is a health care crisis. Alzheimer’s disease is so costly, yet lags in research funds. Alzheimer’s caregivers need far greater support, both financially and in respite care.

Read the full report on the Alzheimer’s Association website.

alz assoc 2019 report

(Infographic courtesy of the Alzheimer’s Association)

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CBD for Caregivers book available now

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I’m excited to share my latest book, CBD for Caregivers. This brief but informative e-book will shed light on what is one of the top health trends of 2019: CBD (cannabidiol.) Hemp-derived CBD is being soil in oil-based tinctures, edibles, topicals and infused into tea and coffee. How can this potentially beneficial supplement help caregivers?

I look beyond the hype and take you on the journey of an average middle-aged woman with no marijuana experience who explores CBD with an open mind and a healthy dose of skepticism. What I found is that CBD holds promise as a healthier way to deal with stress and pain. There are no miracle drugs and some of the more fantastical claims are indeed bunk. But I would also challenge those who argue that positive CBD claims are all just a giant placebo effect.

In addition to an overview of what CBD is and how it may help caregivers, the e-book contains a roundup of my CBD product reviews that are a popular feature on my website, CBDforCaregivers.com.

For my loyal blog followers, you can download CBD for Caregivers for free for a limited time. I would kindly ask that you leave a review at your favorite digital retailer if you grab a free copy. The book is available at the following digital book retailers.  There was a hiccup with Amazon but hopefully it will be available via Kindle soon as well.

I look forward to hearing your feedback on the book and CBD in general. If you’ve tried it, I’d love to hear your opinion.

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Tips on how to communicate with those who have dementia

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Couleur/Pixabay

One of the things I struggled with the most when spending time with my dad who had Alzheimer’s was communication. I didn’t know how to act, or what to say. Should I talk slower, use simpler words or should I speak normally? And when Dad spoke what sounded like gibberish to me, how was I to respond?

It’s a common struggle for dementia caregivers. You see the person in front of you, who looks just like the person you’ve known all your life, and then they open their mouth and say something inappropriate or bizarre. You freeze, your gut twists and you find yourself in a new world, one in which you’ve had no training or preparation.

This Communicating with Alzheimer’s guide offers helpful tips on how to connect with your loved ones with dementia. Here are some of the tips that I found particularly helpful:

  • Maintain eye contact: This can offer reassurance and be a sign of sincerity and thoughtfulness. Focusing fully on a person struggling to communicate can help with understanding as well. The person may use body language to compensate for fading verbal skills.
  • Don’t argue or correct: Those with dementia will often say things that aren’t true or ask for loved ones who are long dead. Some dementia caregivers struggle with the concept of white lies, but it truly is the right thing to do. My mother often tried to correct my father when he said something that wasn’t true, and it didn’t do any good. It only frustrated my father and my mother. If a person with dementia think it’s Wednesday and it’s Monday, so be it. If they want to know where their mother who has been dead for 20 years is, you can simply say they are well and on a vacation.
  • Maintain a quiet, calm environment: I remember the time my parents came to see me at the hotel I was staying at, which was connected to a casino. The minute my father entered the noisy, chaotic lobby, I realized how stupid it was to bring him into that kind of environment. I chronicle that moment in my book, The Reluctant Caregiver. Those with dementia can become overstimulated quite easily and this can negatively effect their ability to communicate.
  • Use humor whenever possible: I used to cringe at some of the silly things my father would say, but in retrospect, it would have been better to just laugh and engage him in whatever train of thought he was having at the moment. Humor is a stress reliever and can lift the mood, which are important for both the person with dementia and their caregiver.

What communication tips do you find work best?

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Patients in Dementialand by Welcome to Dementialand

I totally agree with this! It serves as a good reminder to all of us, and especially those of us who work in the media world, to use person-centered language and not associate someone solely with their disease. Alzheimer’s and other forms of dementia take enough from a person without us contributing to the problem.

Let’s talk about patients. You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t. I want to talk about dementia “patients.” First, an analogy… My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. […]

Read the full post via Patients in Dementialand — Welcome to Dementialand

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February 28, 2019 · 5:06 pm

Relay: Simplifying voice communication for kids, elders

relay phone

Image courtesy of Relay & Voorhees Segal Communications

I remember the challenge I had in convincing my mother that she needed a cellphone. This was when my father still lived at home, but his dementia was progressing steadily. I wanted them to have safe, quick communication to be able to call for transportation, or for help, if my father should fall or need medical assistance.

My mother surprised me with how much she ended up enjoying her Jitterbug phone. (The company is now called Great Call.) The simple to use phone featured a flip design and large numbers. Getting her that device was one of the best decisions I ever made.

Recently I received information about a super-simple phone called Relay. It was originally designed with kids in mind, but the makers discovered another enthusiastic audience: older adults and their caregivers.

Relay doesn’t look like a phone at all. It’s a colorful square device with a button in the middle. It works more like a walkie-talkie, requiring the user to just press the button to speak. There’s no screen, but the device does have GPS capabilities, which could be an asset for those with dementia who tend to wander. It also features multi-network connectivity, long battery life and durable construction.

It turns out that the company’s goal in creating something simple enough for a five-year-old to use also can prove useful to those with dementia, or older adults managing serious health conditions.

Here are more details about Relay:

  • It is affordable at $49 and available on Amazon and Target
  • Relay works over 4G LTE and Wi-Fi, so it has unlimited range and works everywhere a regular cellphone or smartphone does
  • It’s simple for everyone to use, even for those with limited dexterity
  • Relay is durable and water resistant

I haven’t tried Relay myself, but would be interested in hearing from parents or caregivers who have tried the device. 

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Dementia is a thief, but should caregivers be stripped of all joy?

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The complex emotional toll of Alzheimer’s has been in the news the past week. The Washington Post wrote an article about B. Smith, the model, restaurateur and lifestyle guru who has early-onset Alzheimer’s and how her husband has formed a relationship with another woman. B. Smith’s loyal fans were not happy about this development.

Dan Gasby tried to defend himself amidst withering criticism, saying in interviews that B. Smith told him to “go on” after her diagnosis in 2014. He says he’s a better caregiver to his wife now that he’s happier.

Gasby has at least one high-profile supporter: Patti Davis, daughter of Ronald Reagan. In her essay, titled, Alzheimer’s is a cruel thief. Don’t blame caregivers for still finding joy, she reflects upon the emotional devastation an Alzheimer’s diagnosis can bring and what that can do to a couple. She encourages the public to be more sympathetic to those in Gasby’s position.

The issue is at its heart an emotional gut-punch so the fact that it inspires heated opinions is not surprising. What I’ve learned over the years as a  family caregiver for someone with dementia is that I wouldn’t want someone to judge my choices and so I try to refrain from judging others, as long as no harm is being done. While I may not make the same choice as Gasby has made, I cannot rule it out completely either. Those who are outraged on social media would better use their energy volunteering at a memory care center or arranging respite care for a caregiver in their life.

As Patti Davis says, Alzheimer’s is a cruel thief. How much should we allow the disease to steal from caregivers?

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4 Disturbing Dementia Behaviors and How You Can Go From Frustration to Connection — The Imperfect Caregiver

This blog post by Bobbi Carducci is a good reminder on how dementia caregivers must learn a new way to connect and communicate with their loved one, as verbal skills begin to decline. She offers good tips on how you can manage some of the most difficult dementia behaviors.

Often the behavior of someone with dementia is so changeable and unpredictable it’s almost impossible to figure out what is going on, leaving the caregiver confused and frustrated. Why is your spouse confused with you and so alert when someone comes to visit? Why does your mother, who is usually calm and agreeable, suddenly become […]

via 4 Disturbing Dementia Behaviors and How You Can Go From Frustration to Connection — The Imperfect Caregiver

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January 31, 2019 · 9:19 pm