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New Pacemaker, New Dementia Uncertainties

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By Brian LeBlanc

Life is complicated enough. Of course, my Alzheimer’s and vascular dementia adds to the chaos and uncertainty. And as much as I openly discuss living with dementia for the sake of helping others, the opportunity to talk other health issues doesn’t come up as much.

So here it is: I’m having a pacemaker put in Tuesday. I’m scared. I’m nervous. I’m stressed. I’m anxious. And although I trust being in good hands – for a routine procedure under skilled doctors and with my life partner/care partner Maureen close by – the uncertainties would keep anyone up at night.

In a nutshell, my heart isn’t functioning properly … again. My cardiologist has been studying me for some time now. While sleeping in recent weeks, the heart rate has dropped as low as 24 beats per minute. I have to admit, the cell phone app was pretty cool that Maureen used to measure as I slept with my finger over her camera. But a normal sleeping heart rate is between 40 and 60. Maureen and I joke that my paltry pace is “basically dead,” but it’s no laughing matter. 

It’s scary, frightening even. 

Blood flow to my brain suffers. I feel it, especially in the mornings. I’m already increasingly prone to brain fog. Now I must wake up and kick my mind into gear while it starves for blood and oxygen. Some days I can emerge from the fog. Other days I sit in a trapped mind indefinitely, wondering if this is the day the fog stays for good.

The pacemaker will help. We know this. It’ll strengthen my ticker and improve blood flow to the brain. Will it fix my dementia? Of course not. Will it clear the cold, damp fog? Maybe 8 years ago when I first received my Alzheimer’s diagnosis. We’re too far along the path now. The reality is it may only slow the progression – maybe, only maybe. 

It’s not just about dementia now, though. That only scratches the surface because my medical problems say so. (Don’t ask me why, but I’m vaguely remembering “Because Stone Cold Said So!” from pro wrestling.) Unfortunately, this heart issue is genetic, too, on my father’s side. 

Counting the days, so many other problems fill my mind. I can’t shake them. I’m already an anxious person. My Alzheimer’s makes that worse. That said, they are legit concerns. I wouldn’t be human if I didn’t have some fear of something going wrong. But if I do pass, as you know, we’re more than prepared for a death with dignity. 

Now, I’ve been under the knife before. (Seems like too many times to count.) I’ve had three heart stents and then a triple bypass in 2019 – because, why not? Moving on to lucky number 5, I guess! As we all know, even the best heart has so many beats in it. Can mine take any more probing and prodding? 

Maureen’s so good at calming the negative thoughts. She helps me backtrack and reminds me I’ve emerged fine from each of the previous surgeries. She reminds me a pacemaker thing these days is minimally invasive – essentially making a little pouch in my chest for the device and connecting some electrodes. 

But she’s honest. That’s what makes her such a great care partner. Anesthesia can cause delirium in even healthy older patients. Those with advancing stages of Alzheimer’s and dementia like mine? We may regress even harder. Thankfully, I’ll be under “twilight sedation” – a lighter form they just so happen to use for those wonderful colonoscopies. (Note to self: ask Maureen if I have one of those bad boys sometime soon.) 

At least I probably won’t wake up all groggy and nauseous. I digress.

Maureen says she wishes they would’ve announced the surgery on Monday, the day before. I understand why – less time worrying and brooding for me. I told her, “Sure, drop it on me the day before and send me into shock overload!” Imagine that conversation: “Oh, by the way, you’re going to have a surgical procedure on your heart tomorrow.” Ugh!

Back on a serious note, though, I’m so glad they’re letting Maureen stay with me that night. They’ll be observing me for a day or so. It’ll make me feel so much better to have her by my side, even if I don’t actually need her for anything. (I’m sure I will! And she says it’s the least she could do to help the staff deal with me!)

Tuesday is going to be a very long day. I know I’m going to want to go home. I’ll be OK. If not? I guess you’ll have to hear that from Maureen. Either way, I want you all to celebrate and be happy. And always remember: #WeAreDementiaStrong.

– Brian

#WeAreDementiaStrong Brian LeBlanc and Maureen Rulison

Pioneer Network: #WeAreDementiaStrong Ramps Up Educational Mission

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(Editor’s Note: The following article was earlier published in the Pioneer Network monthly e-newsletter on March 1, 2022.

By Brian LeBlanc and Maureen Rulison

#WeAreDementiaStrong. Yes, we are. And we’ve never been stronger than we are today.

That’s because we’re building our educational mission with new free content across a variety of platforms to reach persons living with dementia and their care partners – where and when they need it most. Over the last year, we’ve doubled down on digital content with regular blogs, Facebook Live events, webinars, and now a new podcast and magazine.

Last year, #WeAreDementiaStrong received 501(c)(3) nonprofit status. We’re now excited for new opportunities to build our educational platform. We gently guide the conversation through lived and professional experiences both living with dementia and serving others on that journey.

#WeAreDementiaStrong Magazine

Producing the magazine just made sense. It’s titled “What To Do After A Dementia Diagnosis,” and it’s available for free in both glossy print and digital formats (fill out the form here to download your copy). And, yes, both formats serve distinct roles in spreading the #WeAreDementiaStrong message in strategic ways.

We aim to reach individuals and their care partners immediately, at that very vulnerable moment, when a primary care physician or neurologist delivers that most-unsettling news. The magazine includes feature stories to answer burning questions post diagnosis such as: common Alzheimer’s and dementia behaviors, dementia-friendly worship, life care and financial planning, and much more.

Physical copies are being distributed by professional partners in Pinellas County, FL as a beacon to light the path when it is most dim. The first edition highlights regional resources and services available for persons living with dementia and their care-partner teams. With support, future editions of the print magazine may reach a national audience and promote resources everywhere.

And while some may say a print publication is too antiquated, we believe it’s perfect for our purposes. The hard-copy format is something tangible – a resource that can be held in your hands immediately post-diagnosis, that can be kept on a coffee table to light the way whenever the path is dim.

Meanwhile, the digital version available on our website isn’t tethered by location. It can be a valuable resource for folks living anywhere in the world.

Upcoming Podcasts

Some of you may be familiar with our weekly #WeAreDementiaStrong Facebook Live events. We took a brief pause at the end of last year to focus on the production of other educational content. We’ll be back soon – with an easy change of format to reach greater audiences.

The #WeAreDementiaStrong podcast is ready to go on Spotify, and we couldn’t be more excited to resume the community dialog. The free content will be familiar to our followers.

Some weeks we may ourselves discuss topics pertinent to persons living with dementia and their care partners, often aligning with our personal experience and professional areas of expertise. We may discuss important elements of life-care planning and patient advocacy, news from the world of dementia care, or the daily trials presented with dementia. Podcasts in other weeks will feature renowned subject-matter experts offering unique insights.

The format change is also strategic. It will allow our audiences to more easily access current and previously recorded content. And there’s nothing quite like listening to a good podcast while at work, driving or working out.

Person-Centered Care & Culture

As part of #WeAreDementiaStrong’s nonprofit mission, we’re committed to learning as much from our content consumers as they learn from us by collecting info from forms, surveys and other tools to tailor content to specific needs and reach audiences as they are.

We embrace the person-centered care and culture so smartly endorsed by Pioneer Network. #WeAreDementiaStrong has long partnered with Pioneer Network – and many other nonprofit and for-profit organizations like it – to serve our friends in need. Since beginning this quest in 2014 to educate wide audiences about the realities of dementia care and support, we’ve realized one important thing: we’re stronger together.

We now leverage power from our Board members, each of whom are experts in their dementia-related fields or as key parts of the continuum of care. We’re also building strategies to seek grant funding, donations and other avenues of community support to promote this vital work.

After all, everyone’s entitled to a happy, healthy life worth living. Donate here today.

Alzheimer's and dementia

Common Alzheimer’s and Dementia Behaviors: Communication Difficulties

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You’re chatting with your husband and sister on the back patio on a beautiful summer evening. The wine tastes divine — even better with some stimulating conversation. Except, for some reason that escapes you right now, your husband is repeating himself and having difficulty finding the right words.

That’s new, you think to yourself as your sister catches your gaze, as she always does, to note you’re both on the same page. He’s commented on the wonderful weather a few times now. He’s recounted the same story about an office meeting at least twice. And he keeps stumbling over his boss’s name, often resorting to other ways to describe her.

It’s easy to shrug off these little lapses as a sign he’s just getting older. After all, common aging symptoms don’t always signify something more serious. But he’s typically pretty well-spoken, and these communication difficulties have arisen abruptly. He may be experiencing one of the most common early calling cards of Alzheimer’s and dementia.

How Does Communication Get More Difficult with Alzheimer’s and Dementia?

Problems with communication — like most other Alzheimer’s and dementia symptoms and behaviors — grow progressively worse. Being forgetful and tongue-tied with names and words may occur for years before individuals and families seek medical answers. By the end, dementia patients are often completely non-verbal.

Here’s what to expect by the distinct stages of Alzheimer’s and other types of dementia.

Early Stages

Well, you read it in our fictional example above. Your loved one will be alert and entirely capable of having meaningful and productive conversations. In fact, they may go long periods with no communication issues whatsoever, carrying on work responsibilities and daily relationships with a strong vocabulary, comprehension and rationality. 

But something seems off — even if it’s only sporadic. They may easily lose their train of thought. Discussions may head one way and then veer off course to a different topic. They may seem distracted. They may “lose it,” cutting themselves off mid-sentence when the subject or upcoming words become foggy.

Some may grow impatient or aggravated. (Who wouldn’t be when more frequently and inexplicably stumbling through their own language?) They sometimes become quiet. And others with multilingual capabilities have been known to revert to their first language.

Middle Stages

You may spend many years in these stages with your loved one. Expect much of the same — losing places in thought, misplacing words and names, etc. — but more magnified and growing steadily worse. You won’t be overlooking or rationalizing symptoms here. It’s definitely Alzheimer’s and/or another type of dementia. Your loved one may have already received a diagnosis. Like it or not, they’re well along this path and communication will only become more confounding.

As their condition progresses, they may instinctively resort to gesturing or describing things to make a point. They might glance to the sky and, not remembering the word “cloud,” use their hands to gesticulate something billowing above their heads. Or, perhaps even misplacing your own name, they might refer to you with a term of endearment like “my lovey,” “big guy” or “handsome/beautiful.”

While memory indeed plays a key role in communication, it’s important to remember Alzheimer’s and dementia also erode many other cognitive abilities. (As we always say, dementia is more than memory loss.) By the mid-stages of many diagnoses, your loved one could be dealing with: 

You may notice their discussions beginning to lose a foothold in reality, rationality and logic. They may tell fantastical stories about things they’ve supposedly seen and done — little white lies to fill silence or when they lose the conversation. Some persons living with Alzheimer’s and dementia can even become manipulative, especially when it comes to things they want/don’t want to do. (ex. “But you told me I could drive to the beach!”)

Late Stages

Nearing the end, the person your loved one once was may have all but vanished. But rest assured, there’s a beautiful soul in there with plenty to say (if you know how to pay attention). 

They will likely become non-verbal. But they’re not doomed to sit in silence. With some engagement, they can still enjoy family and life’s other gifts — and, just as importantly, effectively communicate their needs and wishes. 

In the absence of talking, they may exclusively use gesturing to signify things they want. Pointing toward their mouth or a pitcher of water could indicate they’re hungry or thirsty. Similarly, smacking their lips together may mean their mouth is parched. Using facial expressions, eye contact, grunts or hums they might express:

  • Happiness at seeing a dear family member or friend
  • Pain and discomfort with hot, cold, seating and bedding
  • Desire to enjoy an activity (like taking a walk or watching a movie)
  • Distress from overwhelming situations

Music and art therapy have even been known to temporarily restore verbal communication, memory and cognition to Alzheimer’s and dementia patients. In a previous blog, we introduced a man named Henry who hadn’t spoken in years, but when given headphones playing his favorite music, he sprung to life and recalled vivid memories of favorite tunes and dances from his younger days!

Let’s Prepare for Effective Communication with Alzheimer’s and Dementia

You know communication will become more difficult, especially when your loved one reaches the mid- to late stages. Here are some effective communication strategies for when times get tough. You must plan ahead, that’s exactly what we help individuals and families to do.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to guide the process in a caring and compassionate way.

community care

It Takes a Village: Community Care for Dementia Patients

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You’re trying so hard. We know. Being a great care partner for a loved one living with dementia is most certainly a labor of love. You may feel very alone. You likely feel as if you carry the weight of the world on your shoulders, keeping up with the steady march of dementia and its common calling cards, watching the person you’ve loved so much slowly fade away.   

But we’ll let you in on a little secret: you don’t have to do it alone. Loving care and support for ANYONE takes a village — a community of individuals and organizations that can provide relief, guidance and direct services. Here are some great community care options for dementia patients.

Community Care for Dementia Patients: Building Your Village of Support

OK, so I admit “community care” sounds formal. Families and individuals who’ve just received a diagnosis of Alzheimer’s and/or dementia may envision an institutionalized world of walls, structures and systems meant to CONTAIN and RESTRICT rather than NURTURE. 

But that’s not the case at all. Community care begins at home and can extend to a vast network of services and care professionals devoted to honoring the individual and their specific needs. 

Let’s build a life-care plan and care-partner team for a life worth living.

Dementia Care Begins at Home

Your loved one living with dementia likely wants to stay independent at home as long as possible. Involved family members often want that, too. Who could blame them? Home is where the heart is, after all.

You may be the spouse, sibling, other close relative, or a very close friend. (Helpful hint: think of the team as a series of concentric circles or spheres of influence moving outward, with your loved one at the center.) So who’s closest? Does someone live close by to visit daily, or at least frequently? 

A great life-care plan should first factor proximity to provide daily love and support by close loved ones who can:

  • Offer assistance with cooking, cleaning, groceries and other housework
  • Document current and evolving care needs
  • Coordinate medical visits and provide transportation, when necessary
  • Organize bills and other financial needs
  • Or simply stop by for a cup of coffee

Again, your loved one likely wishes to handle responsibilities independently as long as they’re capable. But dementia marches on. It’s a thief that’ll relentlessly erode that autonomy. Best to prepare roles, responsibilities and routines now for what comes later.

Helpful Community Care Agencies for Dementia

Strong as the urge may be to do everything, you and the entire care-partner team will need support as your loved one’s dementia progresses. So let’s build your village to include some helpful community care agencies. 

Your life responsibilities don’t go away as your care-partner responsibilities increase. You likely still need to work (unless you’re happily retired), care for younger relatives, and tackle your own home and financial duties. And, quite frankly, caregiver burnout (aka compassion fatigue)  causes even the most capable and energetic among us to need a serious break. 

So who looks out for your loved one while you step away briefly? Good news! Most communities today have well-established, reputable agencies for providing dementia care and family services.  

These may include:

Assisted Living, Nursing & End-of-Life Care

Eventually, the time may come when living at home is no longer feasible — or safe. Your loved one and the care-partner team will require 24/7 support. In later stages of dementia, the individual will lose the human capacities and instincts we all take for granted: speaking, eating, bathing, etc. And approaching the end, your loved one will likely require professional support to ease the end-of-life transition.  

Your life-care plan may already involve a chosen assisted-living, nursing or memory-care facility. End-of-life professionals including hospice, palliative care and even death doulas provide compassionate care to ease pain and suffering for everyone involved. Many such agencies will also provide or refer spiritual care and counseling for your loved one and close family/friends to make sense and peace of the dying process.

We recommend having these conversations early in the planning process, so everyone on the care-partner team can assess end-of-life care with a clear head and without bias. The last thing you want is for confusion and ambiguity to muddle your loved one’s final wishes when it’s too late and they can no longer express them clearly.

Building a Community Care Plan for a Life Worth Living with Dementia 

As a professional life-care planner and a Florida Board-certified Patient Advocate, I assist persons living with dementia and their care-partner teams often. And then I come home to my life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia. I live these realities daily, and I want to help you!

If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

dementia care

Coming to Life: Art and Music for Dementia Care

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Studies have shown that art and music can lead to cognitive and behavioral improvements for persons living with dementia, even to those in the later stages. While the cure for Alzheimer’s and other types of dementia seems to remain perpetually out of reach, music and art can enrich dementia care with restorative sensory therapy.

It can be frustrating to connect with a loved one living with dementia. But imagine being in their shoes and trying to connect with a world that no longer connects with them. Art and music may help ease this very common frustration.

I’d like to share a great example to help you discover how art and music can benefit your loved one and how you can plan such meaningful activities.

Dementia Care: ‘Music Made Him Come Alive’

Let’s meet Henry.  

Henry was withdrawn and barely spoke. A decade of dementia had robbed life from this warm-hearted man who was absolutely IN LOVE with music earlier in life. A documentary from the Music and Memory Program showed a man with barely any light left in his eyes. 

But Then They Got Him a Set of Headphones

Henry’s caregiver decided to play him music that he used to love. His eyes widened. He raised his head high. He hummed along to the music. 

The light in Henry’s eyes returned as if someone had turned up a dimmer switch. He burst into his favorite Cab Calloway song, “I’ll Be Home for Christmas.” He recalled going to dances in his youth. He talked about how music made him feel. “It gives me the feeling of love,” he said. “I feel the band of love of dreams.”

Henry regained a sense of who he was, even if only for a few moments. Music made him come alive.

Creative Expression Has Huge Benefits

Art and music provide a variety of benefits in dementia care. They have been shown to improve mood, self-esteem, memory and focus. Self-expression, communication, and a sense of accomplishment and purpose also come with creative expression. 

Persons living with dementia also experience a sense of interest and curiosity when engaged by art and music. Some may need to rely less on medicines that are commonly used to treat dementia. Studies have even found that playing familiar music alone may temporarily restore verbal communication and memory. Our friend Henry, mentioned earlier, exemplified how dementia patients can move, groove and sing to songs from early in their lives even while in the late stages of dementia.

Painting and drawing also can help dementia patients to express their emotions or to recapture memories. WIth a brush, pencil or crayon in their hand, they may instinctively create what’s in their head on whatever canvas lies before them. 

Many workers at senior care homes have shared that art and music programs help them to develop more meaningful relationships with persons living with dementia. They spend less time on behavioral issues and more time engaging patients with improved communication and insight into what sparks them individually. 

Planning for Art and Music Activities for Dementia Care

Certain types of music and art can be more applicable to your loved one’s individual needs and desires. Here are some things to think about when selecting music and art activities. 

Music

  • Pick their favorite music: Your loved one most likely had a favorite singer, band, style or genre of music. Ask them to name these, if they are able. If not, what did they have playing on the stereo at home or in the car earlier in life? Who did they like to see in concert? What did they sing in the shower? Make a playlist on an mp3 player or bring some CDs to play for them.
  • Eliminate distractions: Competing noises can muddle sound and cause confusion. Turn off the TV and close doors and windows. Avoid music services that have commercials as these can be intrusive. Don’t blast the music. 
  • Get them moving: Clap, dance, snap or drum. Encourage your loved one to get their groove on, to shake, rattle and roll!

Art

  • No art experience necessary: Your loved one doesn’t need to have an art background. Art allows for free expression for people of all skill levels. A trained facilitator can reach the experienced artist and the late-bloomer. 
  • Help them create: Give simple instructions or even help them to make the first move. You may need to guide your loved one to dip a brush into paint and make their first stroke before they take off on their own. 
  • Talk with them: Ask them about their project. You may be surprised by the stories they can tell as their art jogs their memory and emotions. 
  • Remember they are adults: Treat them as such. Childish projects may come off as insulting. 

Need a Referral for Art and Music in Dementia Care?

Caregiver Support and Resources, LLC can help you connect with your loved one and restore memories and cognitive abilities long forgotten. We provide free referral services to music and art therapy. 

We have over 25 years of experience with all aspects of life-care planning and can help you and your loved one build a plan that honors everyone’s wishes and needs. We’re happy to guide the process in a caring and compassionate way.

dementia memory loss

Dementia is More Than Memory Loss

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A few weeks back, Brian wrote here about his recent bout with aphasia. It was a living nightmare. And even though it lasted only a day, his ability to speak, to communicate, a part of his very being, was trapped indefinitely in a box. Could you imagine? You see, many people equate diseases like Brian’s Alzheimer’s and vascular dementia only with memory loss. But dementia is so much more than that.

Brian is my life partner and care partner. We walk this dementia journey together. Sure, memory loss is a big part of it. I’ve witnessed his memories regress steadily through our years together, and our life-care plan involves a lot of daily reminders and motivations to help Brian do everything from managing his blog to showering to eating. 

Those are just daily steps. Some days are good. Some are bad, but for more reasons than just memory loss. Different types of dementia and their various stages bring all sorts of conditions and emotional states. Mood swings. Hallucinations and other vision impairments. Communication difficulties. Disorientation with time and space. Inability to focus. Confusion. They all have a face and a name beyond forgetfulness.

Symptoms of Dementia Beyond Memory Loss

As dementia progresses to the mid- and late stages, changes in brain function and cognitive ability may become more pronounced and frequent. With Brian, one day may bring wild hallucinations while the next places him in a place he calls “the nothingness,” where a fog overcomes him and his sensory perceptions are almost nonexistent. 

Here’s an explanation of some common symptoms persons living with dementia and their care partners experience:

Emotional Changes

People with dementia may often become moody and agitated. They often don’t know why. Sometimes, pure frustration causes their distress and anxiety. They may be upset they can’t express themselves clearly, recognize familiar faces and things, or complete a simple task. 

Mood swings, a familiar calling card of Brian’s vascular dementia, may also have no understandable source. Irritability can be simply biological. Dementia in its essence is a systematic destruction of brain cells. When nerve cells misfire or disconnect in areas of the brain governing emotion, the emotional roller coaster begins a rapid journey of ups and downs beyond control.

Hallucinations and Other Sensory Misperceptions

Persons living with dementia may report seeing, hearing or feeling something that’s not there. They may see a face or a mysterious figure lurking in a dark shadow (insert feelings of paranoia here). They may even see or feel small critters crawling on or near them. Sometimes hallucinations could be random shapes or foggy areas clouding their vision. Your loved one may also report seeing people and pets from their past.

Couple these visual misperceptions with sensory overload — perhaps the sound of whooshing branches in the wind or a microwave running in the next room — and your loved one could feel particularly anxious or paranoid.

Again, hallucinations stem from damaged and misfiring neurons. But what they see and feel is very real to them. It’s important to acknowledge and validate their reports. Arguing that a hallucination doesn’t exist does nothing to quell fear and confusion. Sometimes calmly reorienting the conversation to focus on something else or a change of location (away from overwhelming stimuli) can bring your loved one back to reality.

Inability to Focus

For many individuals with dementia, focusing on a certain subject or task may be very difficult. Even in early stages, they may be unable to follow a recipe they know by heart, to focus on reading, or to finish a routine household chore. Did they mix in that ingredient? Did they already read that passage? Did they move over the laundry? Losing track of the steps can cause confusion and indecision that can hinder even the simplest of processes.

In mid- to late stages, losing focus can affect every aspect of life. Your loved one may no longer be able to drive because they can’t focus on the road, traffic markers and familiar routes. They may need assistance with personal hygiene and other elements of self-care. Does memory loss have something to do with this? Yes, but dementia’s common regressions in attentiveness are a distinct neurological symptom. 

Difficulty Communicating

I earlier mentioned Brian’s aphasia. A common dementia-related illness, aphasia attacks one’s linguistic abilities like talking, writing or comprehending their own language. Brian’s longest battle with aphasia lasted six months — thankfully he has mastered his talk-to-text app and likes to argue through Alexa and Siri, but I digress.

Communication difficulties associated with dementia may be more subtle. Your loved one may struggle with finding the right words or completing a sentence. Their thought train may be rolling without a hitch, but they then halt after “losing it.”  

Thankfully, humans can communicate in a variety of ways. Eyes can point out things we want or need. Facial expressions can signal emotion quite powerfully. Persons living with dementia may even hum a tune or grunt to convey meaning. We, as care partners, must be patient, attentive and follow the clues our loved ones give.

Disorientation and Poor Coordination

Even the healthiest among us can become easily disoriented or clumsy, at times. Now imagine functioning with regressing brain function. Individuals with dementia often struggle to pinpoint their location in relation to nearby objects, from one room to the next, or most notably, from somewhere else to home. 

Around the house, they may struggle with depth perception, increasing risks for both minor and major injuries from falls. As your loved one progresses through the stages of dementia, they may need assistance navigating an environment more tailored to their safety. Strong lighting and easy accessibility to things they need are helpful.

Regressions in Reasoning and Judgment

Dementia also attacks strong judgment and ability to reason toward logical conclusions. A person may no longer make good decisions about their own physical health and financial well-being. Often, their mind is active in a previous year — or decade — and may be operating under outdated thoughts and processes. Their judgment may be reckless or dangerous, even in early stages, while operating a vehicle or watching a youngster. 

As with any of these dementia symptoms, reasoning and judgment regressions require compassionate understanding and mindful monitoring. (Helpful hint: If you discuss building a good life-care plan with your elder early, you can prepare for care partners to help with important decision-making like banking and transportation.) 

#WeAreDementiaStrong. We Can Help Plan for Dementia Beyond Memory Loss

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.

types of dementia

What are the Types of Dementia?

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Dementia is a thief. Just ask my life partner/care partner, Brian, who has Alzheimer’s disease and vascular dementia. It’s an armed robber that steals memories, mostly in reverse chronological order, so what happened weeks, days, hours or even seconds ago can be a complete mystery. Some folks regress to the point they’re “mentally present” in previous decades, often mistaking younger relatives like grandchildren for their own children or brothers and sisters.

Most who don’t experience it tend to equate Alzheimer’s and dementia only to losing memories. There are, however, a host of other mild-to-severe symptoms that affect daily life including:

From communication difficulties to a general fogginess of the mind to something Brian calls “The Nothingness,” when brain activity just stops. I’ve seen the good, bad and ugly of Brian’s numerous diagnoses. As a life-care planner and patient advocate, that love and experience frames my perspective daily. We always say, “Knowing one person with dementia is … well, knowing one person with dementia.” There are more types of dementia than we could possibly recap here.

Common Types of Dementia and their Signs

Different types of dementia are different types of dementia, and there are more than 400 in total. They affect all people differently — even those with the same diagnosis. But they do have their traditional calling cards. I break some of the most common down here.

Alzheimer’s Disease

We’ll start with the most famous — and often most misdiagnosed. Why? Because Alzheimer’s disease can only be definitively diagnosed in an autopsy after death. Doctors use a variety of brain scans and other medical tests to arrive at Alzheimer’s as the likely cause of cognitive decline and memory loss. There are specific biomarkers that align with the various mental impairments experienced daily.

Vascular Dementia

This can happen to people who’ve experienced strokes and various other cardiovascular conditions. Makes sense, right? Brain tissue needs blood to survive and thrive.

Lesser vascular dementia symptoms could be signs of vascular cognitive impairment, in which changes in language comprehension/retention, reasoning and memory are noticeable but progress slowly with time.

Lewy Body Dementia

Lewy Body Dementia stems from brain abnormalities that could be attributed to some other conditions like Parkinson’s disease. See the confusion? It’s considered the third-most common type of dementia at up to 10 percent of documented cases.

There’s a physical component, too. In addition to changes in thinking and reasoning, a person may experience movement issues such as imbalance, shuffling or slow gait, and shakiness. Sleep disturbances and hallucinations are also common. Memory loss happens with Lewy Body dementia, but it tends to be less severe than other types of dementia.

Frontotemporal Dementia

This type of dementia can affect behavior and comprehension in all stages of life, although the most common associated with personality typically begins in a person’s 50s or 60s. Frontotemporal dementia causes nerve-cell degeneration in the frontal lobe, which is often the last to develop in adulthood, governing what some would call mature decision-making. So a person with this diagnosis may experience difficulties with judgment and foresight.

Others with Frontotemporal dementia can have progressive aphasia, in which communication skills like speaking, writing and verbal understanding can go away and return (or not return) in the blink of an eye.

Mixed Dementia

Mixed dementia can stem from multiple conditions including those associated with Alzheimer’s and vascular dementia. Doctors believe there may be millions of undiagnosed or misdiagnosed because it’s so tough to pin down. The symptoms of memory decline and cognitive ability often mirror Alzheimer’s or vascular dementia, but they may not be as pronounced or progress at different rates.

The combination of two or more types of dementia makes this diagnosis particularly confounding. Some memory and cognitive regressions and other symptoms may overlap or present more prominently than others.

Huntington’s Disease

This genetic disease causes devastating brain degeneration relatively early in life, affecting both mental and physical abilities. However rare, it typically hits around a person’s 30s or 40s. Huntington’s disease impairs movement and thinking ability and often results in a variety of psychiatric disorders.

You may see a person with this diagnosis having involuntary muscle spasms and uncontrolled eye movements. Cognitively, the person may struggle with organizing and focusing on daily activities. They may lack physical and mental awareness.

Build a Life Care Plan for Different Types of Dementia

If you have a diagnosis of dementia, whatever it might be, you have to prepare for what’s ahead. Trust me, we know. As the disease progresses, it’s often impossible to know from one day to the next which version of your loved one you’re going to get that day. That’s common with all types of dementia.

And that’s OK. You can build a life-care plan and a care-partner team to guide your needs (and theirs) for years to come. #WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We are happy to provide referrals and guide the process in a caring and compassionate way.

Living with aphasia and dementia

Aphasia: ‘I Couldn’t Speak and I was Terrified’

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I woke up Saturday morning just like any other day. Maureen, my life partner/care partner, was up before me, of course, as she moves like a lightning bolt and I take my sweet time. The gentle waves of Tampa Bay just outside our bedroom window glistened in the morning sunlight. So relaxing and peaceful, a wonderful way to wake up and prepare my mind for the daily grind of functioning and remembering. 

I said something brief to Maureen — although I’m a bit foggy and can’t remembering what it was. I sat up and … nothing. I couldn’t speak. I could think. I had my inner monologue. I could mouth the words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence. Frightening silence. Another attack of aphasia â€” thankfully a relatively infrequent consequence of my Alzheimer’s disease and vascular dementia — had robbed me of my ability to communicate verbally.

What is Aphasia? And How Does it Affect People Diagnosed with Dementia?

I looked to Maureen in panic. She could see by my eyes I was terrified. We were scheduled to do a Facebook Live conversation for WeAre#DementiaStrong that morning. But that hardly mattered at all. She promptly and politely canceled the event with a nice post explaining that I wasn’t feeling “well.” 

Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done. 

Oh yeah, did I mention I’ve had several bouts with aphasia before? It’s often a dementia-related illness or stemming from a stroke or traumatic brain injury. In my case, the Alzheimer’s and vascular dementia slowly stealing my memories also causes global aphasia to sap my ability to speak. For some, aphasia symptoms may include a total or partial inability to write or understand language. Some say words in the wrong order; others say sentences comprehensible only to themselves.

My aphasia causes a complete loss of speech. No words can escape my lips, whatsoever. I may be able to mouth some words, but I rely mostly on gesturing and a text-to-speech app that allows me to communicate. I often laugh, wishing Maureen could just read my mind, but I can’t even read my own mind most days. In the meantime, my girlfriends Alexa and Siri can speak for me, much to Maureen’s playful chagrin. It’s sometimes funny to have the app speak for me in a British accent or a woman’s voice.

But whatever fleeting joy joking around with apps may bring, the sad reality of aphasia is not fleeting at all. A few years ago — I hardly remember this — I was unable to speak for six months. Another incident lasted three or four days.

The Uncertainty of Aphasia: When Will It End?

There’s no answer to that question. When will it end? Will it end at all? I’ve entered each attack of aphasia facing the reality that whatever I said the moment or night before could be the last words I ever say. Maureen later told me, “The first thought that went through my head: ‘What if the last thing I ever hear you say is what you just said to me.” 

Maureen went to the office and cried. Even as an expert in dementia care and life-care planning who walks the walk in professional and personal shoes, the random, uncontrollable and sometimes cruel effects of dementia are a lot to handle. “I was like  ‘I can’t deal with this. I just can’t deal with this,'” she said. “I have plans in place if I couldn’t leave you alone at any point. I just wasn’t ready to put them into action.” I understand better than most that dementia is incredibly difficult for both the diagnosed person and their care partners. 

I must say, she does a fantastic job as my care partner. She knows exactly what to do not just to keep me happy or distracted, but to address dementia symptoms and provide holistic relief. She’s a saint for taking my hand and leading me out of the fog and darkness, time and again.

Bringing Out My Voice Again

Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.

Music is the perfect therapy tool. We remember music. We remember art. They realign and reset minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800 songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs. (On that note, Maureen and I are proud to serve on the Board of Thriving4Life, a nonprofit that promotes clinical art therapy and personalized music for elders and individuals with dementia).

Music works. I hear the melodies and beats and lyrics. I feel the emotion. It’s soothing, and it brings me back to reality. But that’s not what brought back my ability to speak.

We made the day as normal as possible. I watched TV. We went to the store. We even had a little argument, as couples often do. Expertly using my text-to-speech app, I’m sure I won (but don’t tell Maureen that).

Later, we sat together on the back patio, overlooking Tampa Bay as the sun began to set. I snapped a great picture of some dolphins. I stood up and tripped, yelling a certain four-letter word on the way down. 

“#&*@!” 

I spoke! Maureen didn’t even check to see if I was OK from the fall. “You talked! You spoke!” she exclaimed. Thankfully, this round of aphasia lasted less than 24 hours. I’m not sure if it was the shock of tripping, but something about the experience hit me like a lightning bolt. 

Since that first time, I’ve always tried to speak first thing in the morning after regaining the ability to speak. That’s my test. That fear never loosens its grip now.

Communicating with Aphasia and Dementia

Last week, Maureen wrote a terrific blog about communicating with loved ones in certain stages of dementia. Coincidentally, we ended up living the extreme of that reality, however briefly, that very weekend.

“Trust me, Brian LeBlanc will always try to find a way to communicate,” Maureen said. And she’s right. Communication is my life. It’s who I was before dementia as a marketing and PR professional. It’s still who I am now. 

Thankfully, I’m always prepared to use gestures, facial expressions (and, of course, my beautiful girls Siri and Alexa) to speak for me when speechless moments like these become more frequent … or permanent. Later that night, Maureen and I were talking and she said, ‘You know, I kind of wish you didn’t talk anymore.’ We had a good laugh at that. As I’ve said since being diagnosed with Alzheimer’s Disease in 2014, “I have Alzheimer’s, but it doesn’t have me!”