Tag Archives: Alzheimer’s

Tips on how to communicate with those who have dementia

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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

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

New study suggests link between gum disease, Alzheimer’s

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I typically don’t put much credence in the latest health study. In my field, we are flooded with studies every day. For example, the one that was trending today: eating fried chicken on a regular basis is bad for you. Wow, what a shocker. They had to do a study to determine that fried food isn’t good for you?

I know there is a lot of good work being done by hardworking researchers, whose goal is to find the cause of Alzheimer’s so that an effective treatment and/or cure can be developed. One such study this week did pique my interest, because it touched a nerve, pun intended.

The study suggests that there may be a link between gum disease and Alzheimer’s. I have gum disease, and even though I’m vigilant about my dental care, I have a couple of concerning pockets that are going to need scaling and root planing (it’s about as fun as it sounds.) My parents had major dental issues, and I feel like lousy teeth is just something I inherited. As I get older, I have become more concerned about my oral health, because gum disease has been linked to diabetes which is prevalent on both sides of my family.

The latest study, which focuses on Porphyromonas gingivalis, the bacteria that causes periodontal disease, involves both human and mice testing. Scientists found that P. gingivalis can be found in the brains of those diagnosed with Alzheimer’s disease, not just in their mouths. Applying P. gingivalis to the gums of healthy mice for several weeks led to increased amyloid production and damaged tau protein. The proteins are believed to create the tangles in the brain associated with Alzheimer’s that leads to cognition issues.

Other scientists in the field were less convinced that there is a direct cause between gum disease and Alzheimer’s. As is with all of these studies, there is much more research to be done. But tending to your gum health, especially if you have periodontal disease like I do, is wise whether or not the connection to Alzheimer’s proves to be true.

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AlzAuthors releases anthology, hosting National Family Caregivers Month book sale

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November is National Family Caregivers Month. The National PACE Association says this year’s theme is “Caregiving Around the Clock.” If you’ve been a caregiver, you wholeheartedly agree with that theme!

AlzAuthors has two exciting promotions going on to mark the special month. First, the group of Alzheimer’s authors has released an anthology, Alzheimer’s and Dementia Caregiving Stories, featuring the personal stories of 58 AlzAuthors contributors. I am honored to be one of the contributors. The book will be released Nov. 7.alzauthors anthology cover

AlzAuthors is recognizing and honor family caregivers of those with dementia across the country by hosting a book sale and giveaway. The eBook sale will run from Nov. 7-Nov. 13. Books will range in price from free to $2.99, to help those on limited budgets access worthy books that can help them on their own caregiving journeys.

My book, The Reluctant Caregiver, will be on sale for just 99 cents during the promotion. The award-winning collection of personal essays offers a nontraditional view of family caregiving, and includes several essays about the challenges of caring for those with dementia.

This is the last AlzAuthors book sale of the year, so don’t miss out!

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How genetic testing helped me learn about potential, serious health issue

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There is a lot of buzz these days about genetic testing. Companies like 23&Me have come under fire as critics fear the genetic data could be used by health insurance companies to deny coverage, along with other privacy rights issues.

While I understand these arguments, for me personally, the information I have learned via genetic testing has been very valuable. The following isn’t an endorsement; I’m just sharing my experience.

I did the 23&Me genetic testing years ago. It flagged conditions I already knew I was at risk for, such as Alzheimer’s disease, and what I already have, such as Celiac disease. But the most curious result was the high risk I had compared to the general population for hereditary thrombophilia, which is a predisposition to developing harmful blood clots. I didn’t know what to make of the result (which indicated I had roughly a 60% higher risk than the average person) because blood clots have never been an issue in my family and I’ve never experienced one.

Then my mother became ill, and after her surgery, developed multiple blood clots. Those clots complicated her recovery, so instead of being able to return home post-surgery, she had to spend two months in a rehab center. She required an additional surgical procedure to address her blood clot, which led to its own complications, in which she began to bleed out. She eventually recovered, after spending months on blood thinning medication, which requires strict oversight.

Recently, 23&Me updated their genetic health risk results system and unveiled a new interface in which to interpret the results. By viewing this, I saw that I carry two major genetic variants linked to blood clotting issues: Factor V and Prothrombin G20210A.

So what does this mean for my health? It means that I am aware that because of my genetic makeup, I should alert medical staff before having surgery and I should be vigilant about maintaining leg movement when traveling for long distances. Fortunately, I don’t smoke and I’m not obese, two risk factors, though risk increases as one ages. With precautions, many blood clots are preventable. The problem is, people usually don’t know they are at risk until it’s too late. Just read these stories from the National Blood Clot Alliance.

Let’s face it, my risk for blood clots is not something that would have been uncovered during an annual physical. I have no idea if my mother had the same genetic variants that I do, but I know she would have wanted to know before going through the medical setbacks that the blood clots caused her.

Have you done any form of genetic testing? If so, did you find it helpful or not?

 

 

 

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