SayWhatClub

Hearing Loss and Dementia

Hearing loss and dementia: Is isolation a factor?

by Chelle Wyatt

The link between hearing loss and dementia has been big news for the last couple of years. Because of this news, people seem to think if someone has hearing loss they’d better get hearing aids to keep from getting dementia. Also seen are giant ads with information that scares people into buying hearing aids. This is wrong; this is people selling a product. The link between hearing loss and dementia is there, but by focusing on hearing aids only they are missing the bigger picture. Hearing aids are only PART of the answer.

Dr. Frank Lin, Otolaryngology, John Hopkins, has been researching the connection between hearing loss and dementia which you can find here. Lin says currently the main rehabilitative care being offered is hearing aids, and he goes on to say it’s not just about hearing aids, but ensuring people with hearing loss can communicate in all settings.

“Hearing loss is very treatable in later life, which makes it an important public health target to reduce risk of cognitive decline and dementia.” – Dr. Frank Lin

Many deaf and hard-of-hearing people feel isolated when communication with friends and loved ones becomes difficult.

I believe it’s the isolation factor that typically comes with hearing loss that causes dementia, and that idea comes from personal experience. My grandma didn’t have hearing loss, she had diabetes. She thought her life was over as she knew it. There was no more joy to be had. (Sounds like the hearing loss diagnosis?) Once a very active and social person, she withdrew from those activities, her friends, and she stayed home running errands for necessity only. Her mental health began to decline, slow at first, and later it picked up speed. It was frightening to witness and from then on I associated isolation with mental decline.

Isolation

Twenty something years later, hearing loss and dementia were linked – and my first thought was social isolation. People with hearing loss tend to isolate themselves, as it’s a noisy world out there, and hearing devices are far from perfect. Audiologists hand out hearing aids, program them, reprogram them if needed, and people still struggle socially.

Even though hearing aids may have a noise reduction program for restaurants, separating the waitress’s voice though the clattering of dishes, background music and talk from other patrons remains difficult. Poor acoustics in these environments make the situation worse, reverberation confusing hearing aids/cochlear implants further. Not just words are lost but whole sentences. This is where people start bluffing because they just want it over with.

Restaurant noise can be challenging for people who wear hearing devices

Reasons We Avoid Social Situations

There’s a lot less of this confusion at home. Home is safer where the environment can be controlled. There are captions on the TV, books as easy friends, and embarrassing repeats can be avoided. It’s too risky in public, maybe that’s why my grandma stayed home. We aren’t given the proper tools and strategies to deal with this when they hand out hearing aids.

Another bummer is high dollar hearing aids can’t keep up in social venues such as theatres or at the movies. Dialog is lost in the booming background noises and/or overriding music. The dialog is delivered at a fast pace, just like some family functions. Conversation bounces around and by the time we figure out who’s talking, someone else is already speaking. This makes people with hearing loss feel left out, like an outcast in a sea of noise. They might resort to bluffing to give the appearance of fitting in, especially around people they know and love. Why? The words “never mind” or “I’ll tell you later” (which rarely happens) are also a dismissal. Maybe they were brave enough to ask for a repeat and then heard, “are your ears in?” We are shut out of the world communication.

Hearing Aids Aren’t a Magical Fix

Yes, we are wearing our hearing aids and they aren’t a magical fix. They are flawed, so repeats and certain accommodations will be needed. I’ve worn hearing aids for over 25 years now. For the first 16 years I thought something was wrong with me. I had expensive hearing aids, and I still had a hard time understanding speech. The feeling of inadequacy and the fear of judgement kept me socially withdrawn. What if I said something off the wall, again? Or maybe I’ll repeat what someone else already said, again. Easy street, in the short run, is to stay away from all dangerous situations.

Hearing aids do help and they have their place, but their limitations are not often discussed in full. If you’re lucky you run across someone knowledgeable about hearing loss, or happen to find the right book or article. It was a book for me and reading it, I finally understood why I hear the way I do and that hearing devices have their limits. What a relief to find out it wasn’t me after all, I’m just sorry it took me 16 years to learn that. It was freeing but anger soon followed. Why didn’t any of the audiologists I had over the years tell me that? Why didn’t they offer me more support? Isn’t that their job? After that I was on a mission to learn all I could about hearing loss and hearing aids. Here’s some of what I learned….

The big 3 of hearing aid limitations:

  • They only work well within 4-6 feet, after that their ability goes down.
  • If it’s a high frequency hearing loss, then hearing aids only replaces some hearing.
  • Even though digital hearing aids are better at masking some of the background noise, some noise is still overpowering for hearing aids. Bad acoustics can wreak havoc on hearing aids rendering them nearly useless.

How to conquer those limitations:

Most speech sounds fall within this yellow area on an audiogram.

LEARN ALL YOU CAN ABOUT YOUR SPECIFIC HEARING LOSS.

How do you hear and why? Where do you fall on the speech banana and what sounds of speech do you miss? If your audiologist didn’t explain this to you, make an appointment right now and have him/her explain it to you. They owe you that. That way you know more of what you need to make communication easier on you and those around you. In fact, take your significant other with you so they too understand

FIGURE OUT WHAT YOU NEED TO MAKE COMMUNICATION EASIER.

So many people with hearing loss don’t know what they need so let me give you a starting list.

  1. People need to be within 4-6 feet.
  2. They need to get your attention first so you’re prepared to focus.
  3. At all times they should face you when talking (you lip read some whether you know it or not).

Just those 3 rules will make communication easier on both parties. Create a habit together.

ADVOCATE FOR YOURSELF.

When you tell people what you need, you’re advocating for yourself. Woo-hoo! That’s a giant step forward and it’s absolutely okay to tell people what you need. The next step would be introducing yourself to new people with your needs. Here’s what I say: “I lipread.” (It gets them to face me pushing sound right at me and I can use lipreading in combination with my remaining hearing.) “I hear well enough to know you are talking but unless I’m looking at you I won’t understand much.” I’ve given them direction on how to communicate with me, there’s no guessing. If I don’t answer a question while looking down, I’m not rude, I didn’t hear/see.  

Look for this international sign that indicates access for the deaf and hard-of-hearing.

USE ASSISTIVE LISTENING DEVICES (ALDs).

Hearing aids pair wonderfully with assistive listening devices (ALDs). While out in public look for the symbol, an outline of an ear with a slash/dots. Typically there are FM systems and if you’re lucky you’ll find hearing loops which are even better. There’s also live captioning, called CART (Communication Access Real-time Translation) and caption devices in theaters (CaptiView and Sony Caption Glasses). If the public venue’s devices don’t work well, be sure to let them know because you’re not only advocating for your needs but you’re also advocating for people with hearing loss who come after you.

LOOK FOR CLASSES ON HEARING LOSS.

Most states have a Deaf and Hard of Hearing Center/Commission and offer some form of help. Here in Utah we have Hard of Hearing Assistants in rural areas who go to senior centers (younger people are able to attend some) to teach classes, free. They teach lipreading, Living with Hearing Loss (based on Sam Trychin’s work), tinnitus, hearing aids 101 and slow paced sign language classes.

Most states aren’t exactly like Utah but they should be able to offer some direction or support. Lipreading and the sign language classes helped me. I can use my lipreading ability in noisy situations such as restaurants, even taking my hearing aids out so the noise isn’t distracting me. My husband learned the ASL (American Sign Language) alphabet to help me when I’m stuck on words. I now have more tools at my disposal, helping me to be more successful in a variety of situations. If a state agency isn’t available, check for other resources such as college classes, local hearing loss support groups and online support (SWC is a great start with email lists and Facebook groups) and…

FIND YOUR TRIBE!

Look for others with hearing loss. Find the role models who make themselves available to help others.  Because they were once where you are, they can help you climb out of the isolation hole. The SayWhatclub (SWC) saved me twice in my life after big hearing drops; once in the late 90’s and again in 2009. Seek local support groups, and go to the hearing loss conventions each organization offers. SWC has an annual convention I can’t get enough of it, because I feel like I’ve come home.  The conventions have given me something to look forward to, to learn from (every single time) and enables me to meet new friends and greet old ones. It’s socialization in my environment with people who know how to talk to me. All workshops are captioned and have hearing loops. It’s a world catered to me.

What can audiologists do to help?

The World Dementia Council has not declared hearing loss a risk factor, but social isolation is a risk.

Hearing aids alone will not combat dementia. Audiologists need to expand their services, or at least point all clients in a direction where they can grow with hearing loss. I might believe ads about combating dementia with hearing aids AND rehabilitative services. What if all audiologists made themselves aware of state agencies for deafness and hearing loss, and passed out that information to every client? If audiologists offered mentoring services, someone with personal experience in hearing loss to help with questions, would that decrease doubts and improve self-confidence? Would once a month talks on different aspects of hearing loss and communication at the audiologist’s office make a difference? Only then would I believe they were focusing on the link between hearing loss and dementia.

Hearing loss is not the end; it’s just a matter of learning another way of doing things.

Chelle Wyatt, Former President of SayWhatClub
Chelle Wyatt, former president of SayWhatClub

 

Chelle Wyatt is a long time SayWhatClub member and former president of SWC’s board of directors.  Currently, she teaches lip reading courses online.  Visit her website, Hearing Loss Live, to learn more about lip reading.

Which Cochlear Implant is Best?

If you have recently discovered that you need a cochlear implant, you may be wondering which one is best.  How to pick a cochlear implant is one of the top questions we get at the SayWhatCub, and we understand how stressful choosing one can be.  Knowing that we will be stuck with whatever brand we choose for the next twenty or thirty years, we all hope to pick the best one. Surgeons and audiologists are rarely helpful when it comes to choosing a processor.  There are no independent studies indicating which cochlear implant is best. Unless you have a background in electrical engineering, understanding how they work can be confusing. Most surgeons have never tried out the cochlear implants they place in their patient’s heads.  Few people with cochlear implants have experienced more than one brand.  Comparing brands seems all but impossible.

In this post we’ve interviewed three of our SayWhatClub members.  We’ve asked each of them the same questions about their cochlear implants. Ilene wears two Advanced Bionics Marvel processors.  Ann Marie wears a Med-El Sonnet with a hearing aid, and Pat wears two Cochlear Americas Kansos.  We hope this post will enlighten you and help you make the best choice that is right for you.  People with cochlear implants tend to talk in technical jargon related to their devices.  For clarity, I have written notes in italics.

When did you get your first cochlear implant?

Ilene (Advanced Bionics) I Got my first CI in January  2020 after a decade of resisting the notion.

Ann Marie (Med-El) October 2014.

Pat (Cochlear Americas) I got my first one in 2016 and my second one in 2021.

Do you have one or two?  Why?

Ilene (Advanced Bionics) I found the first one to be such an improvement that I started thinking about doing the other ear about 4 months in and had the surgery in December 2020.

Ann Marie (Med-El) I have one. I hear well with one and don’t feel the need to go bilateral. I have a little bit of low pitch hearing in my other ear and use a hearing aid just so I have some sound on that side.

Pat (Cochlear Americas) I have two. I stopped wearing a hearing aid in my unimplanted ear, because it seemed like it actually worsened the clarity of my hearing. My doctor told me that was a sign to get the second one. I wanted to hear in stereo again.

Why did you pick the brand that you went with?

Ilene (Advanced Bionics)  I spent too much time agonizing on which brand to choose and ultimately went with Advanced Bionics.  I felt their internal device is well suited for advances in the future.

Ann Marie (Med-El) MED-EL. The reasons I chose it in 2014 were at that time they were the only company that had an off-the-ear processor and the only company who made implants that were MRI compatible and didn’t require magnet removal. I also thought their longer electrodes seemed like a good idea. (Note:  All brands currently offer MRI compatibility on their newer electrode arrays.)

Pat (Cochlear Americas) I chose Cochlear America for several reasons. My accessories that went with my Resound hearing aids that I already owned like TV streamer and Mini Mic would work with them. Also at the time they were the only company that had direct streaming to your phone. I hated carrying a remote. I talked to several people with different brands and it at least seemed that the Cochlear users were the most satisfied. I was also impressed with their customer service.

How long did it take to get used to?

Ilene (Advanced Bionics) I did a lot of training the first month and speech normalized quickly by the end of it.

Ann Marie (Med-El) Not long.  I understood speech when I was activated but it took about 3 months for the robotic cartoonish voices to sound more normal.

Pat (Cochlear Americas) I was understanding language within a day and things began to sound more normal after a few weeks. I did the work and wore the processor all day. At 2 months I had 82% word recognition. It was pretty quick for me.

How well can you hear with it compared to how you heard with hearing aids?

Ilene (Advanced Bionics) There is no comparison between my hearing aid hearing and my CI hearing.  I struggled for years with power aids. Now I hear  pretty naturally.  I don’t have to think much about it.

Ann Marie (Med-El) By the time I decided to get tested for a CI, understanding speech with hearing aids had become very difficult. With my CI I hear and understand well in most situations.

Pat (Cochlear Americas) Night and day difference!  My last testing had me at 98% word recognition. I could basically not understand anything with my hearing aids unless I was lip reading at the same time.

Are you able to able to converse in noise, such as at noisy family gatherings or at restaurants?

Ilene (Advanced Bionics) It is much easier to hear in noise now, but not perfect.  I use my old coping skills of speechreading  when needed.

Ann Marie (Med-El) Yes.

Pat (Cochlear Americas) I do pretty well and it is getting better. I like using forward focus in these situations. (Forward Focus is a program on Cochlear processors that cuts background noise and focuses on sound in front.)

Can you watch TV without captions?

Ilene (Advanced Bionics) I can watch without captions but like to use them anyway.

Ann Marie (Med-El) In the first years of having my CI I relied on the captions.  As my brain continued to adapt over the years, I still keep the captions turned on but I understand a lot of what is being said so I’m not totally dependent on them.

Pat (Cochlear Americas) Yes, though I keep them on most of the time out of habit. I adore my TV streamer.

Can you hear on the phone?

Ilene (Advanced Bionics) I stream calls directly to my processors from my cell phone.  I also use a special phone program for landlines at work.  I can hear very well.

Ann Marie (Med-El) It took a few years for this to happen but I would say most of the time I understand phone conversations.  I do like having a CaptionCall landline and InnoCaption on my cell just in case I need them.

Pat (Cochlear Americas) Yes!  It took me a long time after implantation to get over my phone phobia with hearing aids but now I don’t even think twice about calling someone.

How does hearing with a CI compare to normal hearing, if you previously had normal hearing?

Ilene (Advanced Bionics) I have had declining hearing loss since I was eight years old.  I lost all high frequency sounds first. I now enjoy birds singing.  Speech and music sound very natural to me now.

Ann Marie (Med-El) I have a progressive hearing loss that began in my late 30’s.  My CI doesn’t give me back what I had before but it’s close enough.  I always say it’s my new “normal”.

Pat (Cochlear Americas) It seems pretty comparable to me. I don’t notice a difference. Music might still be a little off, but I love understanding lyrics now.

Is your cochlear implant company supportive when you have questions or a problem with your device?

Ilene (Advanced Bionics) My Advanced Bionics representative was very helpful during the selection process.  She came to my home and showed me all the accessories and how to use them.  Advanced Bionics has email, phone and chat support.  They are very responsive.

Ann Marie (Med-El) Thankfully in the nine years I’ve had my CI I haven’t experienced any problems with my devices. In the few times I’ve had to contact customer service they have been helpful.

Pat (Cochlear Americas) Yes. They have promptly taken care of my few issues.

Did your device come with a warranty?

Ilene (Advanced Bionics) The processor has a five year warranty, that I think is standard for the industry.  Most accessories have a one year warranty.

Ann Marie (Med-El) Yes.

Pat (Cochlear Americas) Yes.

What are some of the things you like about your cochlear implants?

Ilene (Advanced Bionics) They gave me back my hearing, I am grateful every day for the technology.

Ann Marie (Med-El) For the most part, it enables me to live my life as I did before losing my hearing.

Pat (Cochlear Americas) I love having my off the ear option. I love getting my life back to normal with pretty normal hearing. I  weirdly even love the option of silence at night, on planes, or whenever I choose.  They also rid me of my tinnitus.

Are there things about your cochlear implants that you do not like?

Ilene (Advanced Bionics) Nothing comes to mind.

Ann Marie (Med-El) I can’t think of anything I don’t like.

Pat (Cochlear Americas) I really cannot think of anything. I mean I would prefer to have natural hearing without all the equipment but this comes pretty darn close.

If you wear two, do you hear better with one ear or the other?

Ilene (Advanced Bionics) They work together like stereo speakers do.  I can hear with just one, but 2 is so much better with a full, rich sound.
Ann Marie (Med-El) I only have one.
Pat (Cochlear Americas) I always wear them together which sounds better than alone.

How easy is it to charge your device?

Ilene (Advanced Bionics) I have a spare set of batteries so I can always swap them.  The electric/USB charger is small and takes about 7 hours to fully charge a set.

Ann Marie (Med-El) Very easy.

Pat (Cochlear Americas) Super easy. My Kanso 2’s go in a charger/dryer at night and are ready to go in the morning.

Do you have different programs on your devices to accommodate different listening situations?

Ilene (Advanced Bionics) I do have different programs, but use “autosense” ninety-five percent of the time.  I also have a “speech in car” program and  a “speech in noise” program. (Autosense is a program that automatically detects the listening environment and self adjusts accordingly.)

Ann Marie (Med-El) I have a few different programs, but I always use the same program which adapts well to my listening environment.

Pat (Cochlear Americas) I have 4 programs but never change from Scan.  (This is similar to AB’s Autosense program.)

How do you change programs?

Ilene (Advanced Bionics) I can toggle through programs using the processor button, or I use the AB app on my phone.

Ann Marie (Med-El) With a remote.

Pat (Cochlear Americas) I can change on my phone app or Apple Watch where I really do everything CI related.

does your brand offer a “swimmable” option?

Ilene (Advanced Bionics) I have the waterproof battery for the Marvel processor and the older Neptune processor that is submersible.

Ann Marie (Med-El) I don’t swim but Med-El makes waterproof covers called WaterWear.

Pat (Cochlear Americas) I have the aqua kit for swimming, but never use it. Mine fell in the deep end of a pool once, and it took about ten minutes to locate. I was shocked when I put it on and it worked perfectly. I snorkel deaf.

Does your brand offer an off-ear option?

Ilene (Advanced Bionics) Advanced Bionics does not offer a totally off ear processor because they find their T-microphone that needs to be worn by the ear opening gives better results than a microphone on your head does.

Ann Marie (Med-El) Yes.

Pat (Cochlear) Yes.

Does your brand offer other extras, such as disposable battery option, Assistive Listening Device, TV streamer, swimmable protection?

Ilene (Advanced Bionics) Advanced Bionics offers a full range of accessories for different listening situations.  I use a Roger microphone to stream  entertainment  on plane trips.

Ann Marie (Med-El) My Med-El Rondo 3 has an internal rechargeable battery.  I can use either rechargeable or disposable batteries with my Sonnet.  Med-El has AudioLink which is a universal connectivity device which can be used to connect Rondo 3 to phones, tablets, TV’s and other devices. Phones calls and music can be wirelessly streamed to the Sonnet or Sonnet 2 using the Audiostream battery cover.

Pat (Cochlear) All those options. There is no disposable battery option with Kanso 2 but there is one with the Nucleus models.

Final Thoughts

One of the challenges of comparing brands is that none of us have similar hearing backgrounds or situations.  These three cochlear implant recipients were each considered late-deafened, as they all became deaf after learning to speak.  All wore hearing aids successfully before getting their cochlear implants, until hearing aids were no longer helpful. When someone wears two cochlear implants of the same brand, they may find their hearing is different on each side.  Hearing well with a CI has as much to do with the individual ear as it does with the technology.

They are all good.

All of the cochlear implant companies provide the best opportunity for hearing when hearing loss is so severe that one becomes a cochlear implant candidate.  All three of the cochlear recipients said they preferred their cochlear implants over their hearing aids, and that they heard better than they did with their hearing aids in the past. None of them wish they had chosen another brand, or had any complaints about their cochlear implants or their cochlear implant companies.  The special programming strategies for communicating in noise, on the phone, for watching TV or when in water are comparable for each brand.  Two of the brands offer completely off ear options.  Not everyone likes that option, while others are very happy with it.  All current electrode arrays are MRI compatible, but those who were implanted in the past may not have MRI compatible electrode arrays.

For more information, you may wish to look at this comparison chart at Cochlear Implant Help Online.  Be sure to check back often, because the comparison chart is updated frequently, as each company constantly strives to improve their products.

Though this is by no means an independent study, we hope this article will offer some reassurance as you begin the process of selecting a cochlear implant.  If you have more questions about wearing cochlear implants, the SayWhatClub has an active cochlear implant email listserv with several cochlear implant recipients who will be happy to answer any questions you may have.  No question is too silly.  We have all been in your shoes and know exactly what it’s like. Join here.

Yinz, Ya’ll, Eh? Say What Club Conventions by Angie Fugo

Yinz, Ya’ll, Eh?  (aka: the ‘burgh’s plural you, the South’s plural you, and Canada’s every other word!)

Hey SWC-ers!  It’s been three years since our last blog post and three years of fantastic cons to reminisce about.  So, time for a new blog and a walk thru our most recent cons of the roaring back again ‘20s…

Aug 2020 – Year of the Non-Convention gets a brief mention since yours truly & the 2020 Con Committee tried our best to cobble a Con together up until the last minute, then had everything in place for 2021.

Aug 2021 – Pittsburgh, Yinz met here (Pittsburgher hosts, me and Joe Kovac + Pat Kovac and Lorne Smith)

Our 2021 reunion convention built many bridges among us and along three sparkling rivers surrounded by green hills, inclines, and the warm, welcoming people of Pittsburgh!  And refreshing it was, after two years of a “drought” of not seeing each other because of a cancelled 2020 (I most of the year, that is).  Many made excursions to the Andy Warhol Museum, the National Aviary, and more.  And our Gateway Clipper riverboat cruise was a feasting-dinner-dancing, one-of-a-kind experience where we descended and rose again on the Ohio River’s first set of locks.  We could have kept heading West into the glorious sunset and on to the Gulf of Mexico… but alas, our lovely host city beckoned us with a gorgeous nightfall illumination-fest.  Gliding back to Mon-On-Ga-He(y!)-La’s riverbanks, twilight transformed into glistening, shimmering views of the U.S’s most colorfully lit city (I’m biased!) – or at least the only one connected by 446 works of art we call bridges.  This convention was also our last with André, our dear photographer of many cons, doing his incredible art-making of us, in digital photography.  (We love and miss you, André!)

Aug 2022 – Ya’ll met in the infamous Music City thanks to Mike and Sherri Steele and Cynthia Moynihan

Another year rolled by with planning and anticipation of our first convention in the all-night music city of Nashville, Tennessee!  What a time it was – touring a very-hearing-accessible Library, experiencing the Grand Ole Opry (backstage and front stage) and strolling into clubs and on rooftops well into the am hours.  One of these clubs, the Wild Horse Saloon (with horses on the ceiling and everywhere else in the saloon!).  Wild Horse allowed us to bring a beautiful ASL interpreter and our own amazing Julia Stepp providing real-time captioning of the music. Both were awesome hits in addition to the great music artists playing that night.  Knowing the music, but maybe or maybe not hearing it, we danced up a storm!  We also wowed the crowd by having these two there… many people besides us appreciated having synchronous song lyrics and “live-screened” ASL interpretation.

July 2023 – And all who could went any which way, plane, train, or automobile, to Vancouver, B.C., eh! (With many cross-border and international thanks to our spectacular hosts, Lorne and Joann Smith.)  This was the Say What Club’s second international convention held outside the United States.  And it too, was another fantastic convention in a cool place compared to the rest of the sizzling continent.  And of course, its share of stimulating activities – the water taxi dance, a city-wide sightseeing tour, the truly unique Beatles greatest hits show disguised as Bard on the Beach, food tours, and bakeries and sushi – oh my!  And did we mention our gorgeous Northwest Canadian scenery and friendly host hotel and city?  And while we were hoping for the Northern Lights and they failed to appear, we did manage to enjoy many of our first-ever or first post-pandemic international excursions, except that nasty little “bug” that hit us there or followed many of us home!  Thankfully, all of us cared for each other while there and made sure each made it safely home and recovered.  A convention full of memories that made their way home with us and will carry us onto next year.  Here’s to all our continued health, more new Canadian friends, and a convention next year to look forward to a little south of this same U.S./Canada border.  Eh!