Category Archives: Awareness & Activism

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

Relay: Simplifying voice communication for kids, elders

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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

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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#WeKnowYouCare recognizes male caregivers

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In a week in which a razor ad triggered an online discussion about “toxic masculinity,” a new campaign is highlighting an often overlooked group of caregivers: men.

Caring Across Generations launched the “We Know You Care” campaign, to raise awareness of the loving devotion of male caregivers, along with the unique struggles they face. I’ve met many wonderful male caregivers through my years of caring for my parents. From professional caregivers to devoted husbands and fathers, men have proven that they are tough enough and compassionate enough to handle the role of caregiver, in spite of lingering stereotypes that assume only females can provide care.

As Caring Across Generations’ co-director Ai-jen Poo points out, approximately 40 percent of caregivers are male.

Meet Ivan, who shares his caregiving experience. I appreciate his honesty, and his ability to be vulnerable when admitting the ares of caregiving that are a struggle for him. I certainly could relate. My struggles inspired my book, The Reluctant Caregiver.

The movement was prompted by the film, On the Basis of Sex, which looks at a case involving a male caregiver named Charles Moritz that a young Ruth Bader Ginsburg argued and won, long before she was appointed as a Supreme Court Justice.

While women have long assumed the caregiving role, and been expected to, we are moving into a period in which more people, both men and women, will need to serve as caregivers. Our population is rapidly aging and there are not enough caregivers in the workforce to meet the demand. It’s time to break down traditional stereotypes and equip everyone, regardless of gender, with the tools and support they need to be the best caregivers they can be.

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