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Living with Dementia (and Gratitude)

Living With Dementia (and Gratitude)

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By Brian LeBlanc

In a world that can be so unfair, so dramatically cruel, so unforgiving, it’s hard to stay in a positive mindset. Even if that’s literally what you do every day – try to channel the happy, the humor, the spice of life. In the back of your mind, there’s always something … something that can, in whatever way, push you off center and make it hard to appreciate life’s true blessings.

I’m living with dementia. You know this. But I’m also trying something new these days. I’m living with and expressing gratitude – every day – even if it hurts to do it. You may have noticed on our Facebook accounts – particularly my page and the #WeAreDementiaStrong page – I’ve been sharing gratitude posts daily. (OK, not every day. I have Alzheimer’s, remember? Forgive me for, uhhmmm, not remembering or being too foggy from time to time!)

But the practice holds true, for so many reasons. Maureen (my beautiful life partner/care partner) and I particularly love the sociology guru Brené Brown, who found in 12 years of research examining thousands of interviews and over 11,000 pieces of data that the most joyful people have one thing in common: GRATITUDE. 

So What Are My Gratitude Posts About? A Life Worth Living With Dementia 

So after a few cups (or a pot) of coffee and some reflection, I prepare a gratitude post. Just to throw it out there. A feeling driven from some experience with dementia often brings me to a powerful realization. Being grateful for the good things we do have has a wonderful way of lighting the darkest paths in life. 

It just feels good. It makes others feel good. 

I’m living with dementia, but thinking about the positives really helps to beat the depression that always seems to slink in. I’ll share a few examples.

Gratitude for Capturing Memories

A person living with Alzheimer’s and vascular dementia being grateful for memories? What’s that called, an oxymoron? 

But it’s true. I’m just capturing them in my own way. 

Photos.

I’m a pretty decent photographer – my marketing background probably just gives me an eye for eye-catching things. But just with an iPhone I’ve been able to capture some of the most remarkable moments. (You’ve probably seen so many photos of the dolphins, snowy egrets and other ocean life right from our back patio overlooking beautiful Tampa Bay.) 

But it’s also the unremarkable moments. The everyday moments. The meals with Maureen, family and friends. The happy times shared in happy places. 

You can see all of the above in real time on our social media. I look through my phone and see them. I remember. And when I can’t remember, they’ll still make me happy. And when I’m gone, they’ll help others remember.

Gratitude for Travel & Experience

Everyone should travel and experience the world. Not everyone gets to do that. Maureen and I are fortunate to be able to travel for business and pleasure. Just last month, we traveled to beautiful Denver to present for We Are Dementia Strong at the Pioneering a New Culture of Aging Conference. 

We’ve been all over Florida – and many states and countries beyond – to humbly receive recognition for our dementia advocacy and education work.

But sometimes the small, unexpected trips around here – perhaps to a winery, a concert, an ice cream shop, or even just a beautiful walk by the bay at sunset –  are most meaningful.

Gratitude for Abilities

Just the other day, I put together an IKEA bookshelf for Maureen’s home office. Unless you’ve looked at easy directions in English and had no idea what they said, it’s hard to truly appreciate such an accomplishment. 

Now, directions for some may be hard to follow in general. Try doing it with dementia. Days of focus and clarity are getting fewer and farther between. Maureen can tell when I need help when my language turns “colorful.”

But that day, I did it! I felt capable again. The ability and knowhow is still there – even if it’s sometimes hard to find it in the fog.  

Gratitude for Music

The benefits of art and music for dementia care have long been documented. They’re better at restoring memory and cognitive skills than any expensive medication or treatment.

Think about it. Music takes us back. It recalls feelings from a first concert, a first dance with that special someone, a father/daughter dance, a smell, a taste, a distinct feeling from a profound moment long forgotten. It fires those dormant neurons!

I play music everyday – usually just strumming on my guitar – in order to keep my anxiousness at bay, to help clear fog, to calm myself when I get upset. It was always such a big part of my life, ever since I first learned to play when I was about 9. 

There’s always a song that can turn your anger to happiness and confusion to clarity. 

Gratitude for Compassion

It’s not easy to be me along this path of Alzheimer’s and vascular dementia. But it’s also not easy to help me along that path.

Caring for anyone living with dementia is no picnic. It takes compassion and understanding. The things that we’re going through, it’s just not my fault. If I can’t remember something, or if I spend the better part of a week on the couch in a fog, it’s NOT my fault. 

I didn’t choose this. A compassionate care partner (like Maureen) understands that. She works with me, not for me – and serves out of love, not duty.

Gratitude for Maureen

You didn’t think I’d forget her, did you? The only reason I’ve put her last (but certainly not least here) here is because the majority of my gratitude posts are devoted to her!

I’m always grateful for Maureen. Every day. Every single day. 

She’s the appointment maker. The organizer. The rememberer of things I can’t remember. The filler of blanks. A comforter when I’m upset and overwhelmed. Heck, just the other night, I was having my dementia-related hallucinations – I call them “visitors” – and although she can’t see or hear them, she often starts yelling at them along with me (or even throws a slipper in their general direction).

It comforts me to know she’s my protector and always on my side against these trials – real and imagined. I wouldn’t be alive today without her. I love her so much!

So, Yes, I Am Grateful Every Day While Living With Dementia

I’m grateful for a lot more. Far too many people, places and things to mention here. 

I’ll continue with these gratitude posts as long as I can. It’s so much better than the alternative. If you stop – even a few seconds each day – to think about the good – it can make the absolute worst circumstances feel that much better. Trust me!

Peace

-B

life-care planning

Dealing with the Emotions of Life-Care Planning

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By Brian LeBlanc

I was upset. So was Maureen. I suspect a number of our care partners were, too. But the conversation needed to be had. We needed to update our life-care plan – to have the tough talk some of us desperately needed.

The tough talk I desperately needed.

Maureen, my life partner/care partner, does so much for me as we trek this path with Alzheimer’s and vascular dementia together. I still cling to my independence – sometimes, I admit, a bit too much – but truth be told I know the reality. I’m dependent on Maureen for a lot of things these days. She’s my everything, and I love her dearly for it. I need her here to help me through the fog most days, to coordinate my schedule and doctor appointments, to finish my sentences, to preserve my steadily fading memories.

I just need her here. 

I’ve grown accustomed to having her here to help me. And I know she always will be, but the more important understanding that I needed to come to was that it’s not all about me. Maureen has a life. She has her own health issues. She has a business to run and clients to see. Without having the time and space to handle her business, she won’t have the health and energy to handle our business and my business.

So We Took Action and Adjusted Our Life-Care Plan

We called a meeting of our care-partner team. (Luckily for us, Maureen is a professional life-care planner and Board-certified Patient Advocate, so she knows how to orchestrate all this!) 

The goal? Have a plan in place for if Maureen can’t be there for short and prolonged periods of time. And thanks to our brilliant friend and care partner Mel Coppola, we arrived at our new 2-2-2 life-care plan. (Maureen wrote an awesome blog about this plan, and I wouldn’t dare speak for her. I know better than to poke the bear!)

So, of course, I’m here to discuss the emotion of it all. Because that’s what I do. As much humor and lightness as I like to bring to these discussions – for the betterment of others living with Alzheimer’s disease and other types of dementia – there’s a sadder, darker perspective that always must be addressed.

For what seems like the first time, this had nothing to do with my health struggles, my personal needs, or my mortality.

‘I Won’t Be Here Very Long to Help You in the End’

How do those words taste? OK, so it’s obviously hard to remember the details. But I remember that emotion just fine. 

The care-partner team met at our place to discuss what should happen if Maureen’s not available for two hours, two days, and two weeks. (Hence, the 2-2-2 name.) I was in the middle of my “what about me?” spiel. I couldn’t fathom it. Why wouldn’t she be available? Isn’t she always supposed to be here to help me?

“OK, Brian, if I can’t attend to my own medical and personal needs, I won’t be here very long to help you in the end,” Maureen said.

It hit me like a lightning bolt. If ever there was a mic drop – that was it. I was immediately disarmed. I went from being angry – and, I hate to admit, a bit selfish – to being more understanding and – if it’s even possible – more in love with her.

How could I have been so blind? I know she doesn’t blame me. Neither do the other members of our care-partner team. When everything has been about you for so long, any person would naturally fall into that pattern.

So with that emotional baggage out of the way, we were free to discuss what to do about it.

The Plan: Learning To Let Go

With the understanding that Maureen, the light of my life, has to have the time and space to be the light of her own life – to help herself and many others like me at her job –  we adjusted our life-care plan. 

We learned way back in November that a health issue for Maureen could derail even the most professionally-crafted life-care plan. We learned that it must be flexible and factor the unexpected.

Who will be there to sit with me for a few hours while Maureen attends to a client or steps away for her own mental health? Who steps up when she must go to the hospital for a few days or even a few weeks?

The 2-2-2 plan, thanks to our tough discussion, now addresses all that. Care partners whose level of commitment may have changed were able to voice their new realities. Immediacy is an issue for some due to work and family responsibilities. That’s cool. Completely understandable. Now we know. 

Someone else, a neighbor perhaps, may need to help in a pinch. We need to engage a home care or respite-care agency to manage things in a more long-term situation. And that’s fine! I’m looking forward to meeting them and us getting to know each other!

And Now, We Move Forward With Confidence

All of our care partners showed up for this meeting – not a single absence. It felt so good to know that our friends and loved ones care that deeply. On a personal note, it was refreshing to sit down and chat with them. It’s hard to maintain relationships when you have dementia. Lots of people stop coming around, and it gets lonely.

But, as I always say: I may have dementia, but dementia doesn’t have me. I’m so happy we were able to get together, have some real discussion and emerge with a new life-care plan that works for everyone. 

Peace,

-B

Brian living with dementia

Dementia Meditations: ‘Parting is Such Sweet Sorrow’

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By Brian LeBlanc

“Parting is such sweet sorrow.” I believe that was our good friend, Mr. Bill Shakespeare. 

You might be inclined to think this is another blog about death. We talk about it a lot. It’s a very real thing that will someday happen as a direct (or indirect) result of my Alzheimer’s disease and vascular dementia. 

But this is not about that. It’s not even about saying goodbye to a loved one – as we’ve also discussed. It’s about saying goodbye to a beloved thing. 

I will not be returning to Disney World. 

Make no mistake, I looooooooovveeee Disney World! Still do! I’ve been going there since 1976. It’s not just a place for kids. It’s a happy place, my happy place. In a world that can be so nasty – and, believe me, I have a lifetime of nasty experiences beyond the health issues you know – Disney has been my escape from it all.

So here it is. We came back from Disney in late April. (Maureen, my life partner/care partner, had to remind me when that was.) I even wrote a blog and we did some other content for #WeAreDementiaStrong about how awesome the trip was – which it was … until my dementia had something to say about it.

Maybe there was a bit of denial. Maybe I just wasn’t ready to talk about it. 

So What Happened? Alzheimer’s Disease Crashed the Party. That’s What.

To recap, Maureen and I were at Disney with our 4-year-old granddaughter, Emma, and some friends from New York City. We were having a rip-snortin’ good time – visiting the Magic Kingdom and bouncing around a few other places in the sprawling wonderland.

Emma was so cute, so precious. Seeing Disney through the eyes of a child brings you back to your own childhood in a very unique, sentimental way. Like you’re a kid again, but you don’t remember thinking as a kid, but the feelings of being a kid are still fresh like the scent of an apple pie cooling on a window sill. 

Emma alone made the trip worthwhile. I’ll always believe that … even when I forget that I’ll always believe it.

But I began noticing something odd on Day 1. I’m always the leader at Disney. For decades, I’ve roamed and explored rides and attractions new and old. My dementia mind somehow retained a treasure map of fun destinations and experiences. I often gave directions to folks in need, and I would joke, “I wonder if they realize they just got directions from someone living with dementia.”

I never steered them wrong, though. I had been proud that, even as other memories regressed, Disney remained imprinted on me like a tattoo. Yet, the last trip something was off. Memories of familiar spots and favored rides stayed out of focus … or nonexistent.

And then we got lunch the second day. I went to use the restroom. I emerged. I had no idea where I was. Not a clue! I looked around, trying to get my bearings, trying to find something that looked familiar. The signs were gibberish. Not a familiar or friendly face in the crowd. It felt like hours had passed.

From what I remember, I was stricken with a huge, huge panic attack. That’s when our friend saw me walking around like I didn’t know what I was doing, because I truly didn’t. She came and brought me back to our table.  

Now, Maureen was in line getting food. She saw me. She saw that I was disoriented. But we we’re talking seconds, not even minutes, and our friend was already standing behind me. Maureen didn’t abandon me, not that I ever feared she would. (She thinks I’m too handsome to leave me. Ha!)

But the shock of it all. The panic never subsided. My legs were like Jell-O. Next thing I knew – and I still remember very little of this – some Disney staff wanted to get me on a stretcher to haul me out of there. I refused, opting for a wheelchair instead. They were so kind. And I have to thank Disney wholeheartedly for getting us in a car and personally driving us back to the hotel, which is above and beyond what anyone might expect.

Decision-Making with Dementia

But, as I said, I won’t be going back. That’s a decision I’ve had to make, and it’s my decision alone. It’s a truly magical place, but that just magic isn’t enough anymore to put my loved ones through it. It’s too hard, and it’s getting potentially dangerous.

I don’t want to put myself into another episode like that. I still have so much love for Disney World, but being there, being amongst thousands of people, is just too much. (Maybe we’ll manage to sneak back one last time when my dementia is in its final stages, with no ability to wander, when the castle may spark a smile as something familiar and happy.)  

I’ve always been the one to initiate these life decisions. I decided to surrender my driver’s license. I agreed to allow Maureen to have control of the finances. That’s the mark of an ideal care-partner relationship. Not a lot of persons living with dementia have a care partner that would do that. Usually it’s a fight. And I pray, as you or your loved one walk this path with dementia, that you find some trusted, loving soul to pick up the slack where you begin to lack.

But you know me, I’m always looking at the bright side. It’s not an end, but another beginning. Now we get to try other more appropriate things we all can enjoy safely. As I always say, “I may have dementia, but dementia doesn’t have me!” And we definitely have more important dementia-advocacy work ahead.

Peace

-B

#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.

Presidents with Dementia

Presidents with Dementia? Let’s Not Jump to Conclusions

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First and foremost, we refuse to get political here. Caregiver Support and Resources and our nonprofit partner #WeAreDementiaStrong exist to support individuals and families across the political spectrum. Whether you’re Ridin’ with Biden or on the Trump Train, you’re entitled to great love, care and dignity in life’s later stages, in good health and bad. 

We all deserve a life worth living.  

But we’re called to address claims – many of them political – that President Biden is showing signs of dementia. President Trump, too, faced similar judgments before, during and after office. Is there merit to such observations? Frankly, to the unbiased, both men have at times shown moments of cognitive decline and jumbled speech. Some have focused on Biden’s walking gait as a common dementia calling card. Others analyzed Trump’s choppy speaking style, apparent lack of empathy and facial cues as evidence of frontotemporal dementia. 

These remain amateur observations mostly. And in the heat of politics, even well-meaning people can lose sight of the fact that Trump and Biden are the oldest presidents ever. Might their apparent symptoms be understandably attributed to the steady march of time? 

The reality is, unless you’re the president’s personal physician or neurologist, you don’t know.

For the sake of fairness and sensitivity – for everyone – let’s tone down the armchair diagnoses. World leaders will never hear the hurtful words of average citizens, but the loved one living with dementia in the armchair next to you will. 

Political Dementia Rhetoric Only Worsens the Stigma 

“The President has dementia and is unfit to hold office” is damaging rhetoric. Yet, however we lean, people sometimes feel justified in freely spewing such ignorance. It’s easy to understand the reasoning. The mental state of world leaders feels like our business. 

  • “Is he cognitively equipped to tackle the world’s most complex financial issues?”
  • “Is she emotionally prepared to face pressure-packed diplomacy and war?”
  • “Should he have access to the nuclear codes?”

So people look for reasons not to trust them. If they flub up a speech or misremember a name on TV in front of millions of people, they’re deemed “unfit.” The thinking is ageist, at best, and insensitive to the millions living with Alzheimer’s disease and other types of dementia today.

So many think they know the signs and behaviors. Do they? Could they recognize repetitive speech or forgetfulness as common signs versus an otherwise healthy person who experiences the same things with general aging? Is a disagreeable political decision an error in judgment that must point to dementia? 

Of course not! And unless you’re a neurologist or political scientist, most couldn’t begin to understand the limitless complexities of the brain, much less the inner workings of national and international governance.

Dementia … On a Personal Level

Meanwhile, our loved ones who do live with dementia hear all this. The unhealthy talk flows through communities, through social media, and in a flash, fills conversations at our dinner tables, bars, workplaces and even houses of worship.

Our loved ones who live with dementia hear it and see it themselves. My life partner/care partner, Brian LeBlanc, who lives with Alzheimer’s and vascular dementia, often feels alone and alienated enough without the most powerful office in the world speaking for his daily realities. He joins millions of others questioning, “WHY?”

  • “Why doesn’t anyone call anymore?”
  • “Why do I feel so useless?”
  • “Why me?”

Those are deep, dark questions. They’re darker still when one understands that memory loss, feelings of futility and loneliness may be the least of concerns when faced with night terrors, hallucinations and other symptoms beyond surface-level confusion. After all, dementia is so much more than memory loss. 

Folks who already don’t want to be labeled and defined by their conditions can’t escape the labels and definitions dominating talk almost everywhere around them. If you openly join this conversation, you’re only perpetuating the stigma around dementia and hurting the ones you love most. Is there anything “less worthy” about your 75-year-old aunt who’s simply forgetful or your 53-year-old dad who’s well into the grips of Alzheimer’s?

‘Let’s Change the Dementia Narrative’

Does President Biden have Alzheimer’s or another type of dementia? Who knows? Maybe. I’m not his doctor. There’s a distinct possibility President Trump has it, and we know President Reagan did. Whether they do or don’t, did or didn’t, they each carry a heroic stature for wide swaths of the American population. 

Heck, some consider Reagan the greatest president ever. Others don’t. Point is, if you know one person with dementia, you know one person with dementia – regardless if they hold the most highly publicized and scrutinized office on Earth. Don’t let a person who holds the office for a few trips around the Sun own the dialog around Alzheimer’s and dementia for countless years to come.

Brian calls on us to “Change the Narrative.” Allowing a stigma around dementia makes it something people – lawmakers and other decision-makers included – tend to avoid rather than help and support through more funding, research and advocacy. We’ve fought too hard to let that happen.

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.

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