I've been working with adults with dementia for a long time (about 30 years). I've watched us move from "it's just grandma getting old" to where we are today, but it is NO WHERE near where our adults with memory loss and their caregivers should be. I got tired of the books telling everyone that they are going to be OK. I got tired of people saying that it's just the way things are. I call bunk. I'm not going to lie. I'm not going to tell someone everything is sunshine and rainbows and unicorns and skittles when it CLEARLY is not. I had difficulty in other positions because I wasn't willing to look away when things were clearly distressing. I had difficulty giving the company line when it wasn't matching the needs of my folks. I just got tired of it.

I actually started the Dementia Disruptor channel on TikTok because of a co-worker. They stood in front of me telling me that I didn't know anything about dementia, that medications only caused sleepiness and nothing else (yikes), and that they know better (and was going to train other nurses in our company). That's where I decided it was time to stop being afraid and share my disruption online.

So basically I'm not willing to whisper to dementia. I'm not going to shine it up and call it what it's not. I'm going to face it head on and help our caregivers and memory care communities with real truths, real possibilities, and real ways to live with dementia. We can't change dementia but we sure as shooting can change the way we approach it.

My friend Dr. Christy Ross (now assistant professor of physical therapy at University of Hartford) and I met when I was new at Cleveland Clinic. She recognized that traditional exercise programs were not sufficient for our patients with worsening cognitive skills. Having completed my Neurologic Music Therapy training before I started, I had some decent ideas of how to utilize music along with the movements to make them more successful. Christy looked at movements that mimic daily activities (putting on seat belts, getting in and out of the car, sit to stand, cross body/brain movements, etc.). I looked at how to match music to make the movements more effective. This music was always done live (with the exception of the initial and closing warm-up songs) so that I could adjust to an appropriate tempo to allow for delayed responses, more complex movements, or just time for everyone to relax in the tempo. It also allowed me to pause the singing for Christy to give verbal commands, change the movement, or give other directions within one activity. Songs were selected by group preference (I had a binder of their favorite songs so I didn't have to think too hard in the moment). Christy and I would sit at the front of the room, me with my guitar and Christy with the same instrument pack as all of the participants, and we would lead them through an hour of dementia friendly exercise. It was amazing!

The participants appeared to enjoy the sessions. They would come every week, find their seat with all of their drums, tambourines, bells, and other instruments/props, and chitchat until we got started. They would move through the motions, laugh at the two of us as we usually told bad jokes or made mistakes along with them, and even sing along at times (which is a GREAT brain challenge to recall lyrics, sing, and move at the same time). COVID threw a damper on the program, but we were able to pick back up once permitted to have groups again. The families loved that we had their loved ones moving, gave them a break (if they didn't want to stay), and appreciated the feed back we gave regarding our observations or ways they could use the same movements at home to increase independence.

Music is a powerful tool. This was something I was told in my internship and has stuck with me ever since. Music works because it is not centered in one part of the brain. EVERYTHING can be impacted by music. How we walk, how we communicate, how we remember, how we complete tasks — all can be improved by using music.

For what most caregivers want to do, you don't need a degree and certification in music therapy. It's knowing what kind of music your loved one likes and using it to help them get where they need to go. For example:

• Use music in the bathroom. The bathroom can become a scary place with dementia. It echoes. The sounds that soothed us in the past (running water, etc.) now cause chaos. Putting on fun music can muffle that echo and put a little fun in the morning routine. It can also be used as a timer if people need to know how long they need to do something. For example: we're going to brush our teeth until the chorus.
• Use music to break up your day. The day can become monotonous when everything seems to blur together OR we forget things instantly. Music can be a cue for the next steps. For example: here's the song we play to wind down at the end of the day or this one for meals, etc.
• Use music to get some movement. Have a dance party! You don't have to be good, just be safe. Use props in your house (ribbons, hats, sticks, etc.) to make the movement clear and a little more fun. I personally hate balloons, but if your loved one wants a rousing round of balloon volleyball with some upbeat music, go for it!
• Use music to sing along. I use YouTube and find versions of the songs with the original artist singing with the lyrics on the screen so they can sing with their favorite artists. If your loved one likes karaoke better, then do that! There are no real rules, I just find that singing along with someone familiar makes them more comfortable.
• Try some music trivia and then play the songs after the answers. There are a bunch of great websites for music trivia online (I like www.funtrivia.com) if you don't have those questions yourself. I've also done sessions of misheard song lyrics to see if we can see where the confusion might be, what we actually hear, and what the lyrics actually are (that was an hour of laughter for sure). Have a little fun with the music!

All of this said (and these are just a few ideas off the top of my head for using music at home), we also need to be aware that the power of music can cause harm just as much as healing. We need to be aware of any changes and be willing to stop or change. Music can be a strong memory trigger and may bring up things that even close family members are not aware of in their past. Keep that in mind and be careful of your choices. If you are worried, you can always find a music therapist in your area by using the finder option at www.cbmt.org.

In a quick phrase? That it sucks. Ha! In all honesty, that's the biggest thing. People are afraid to speak the truth about dementia. They're afraid to agree that the whole thing sucks. It sucks for us. It sucks for them. It sucks for everyone.

That dementia is unpredictable so we can't say "do this and it will work" because that's a lie. It might work. It might not. It might work a month from now. It might never work.

That you can't fight an illogical disease with logic. We try to make sense of what's going on. Sometimes we can but a lot of the time we can't. All we can do is try to move in their mindset to figure out what's going on to the best of our ability.

That sometimes WE are the problem NOT dementia (yikes). Sometimes it is our behavior and our expectations that make things worse. Changing our approach can completely shift the entire day.

That we're going to make mistakes. We're going to royally screw things up. It's like Who's Line Is It Anyway, the rules are made up and the points don't matter. Learn the lesson and move on.

That straight talk will sting now but save you in the long run. People might think I'm crazy, but over time I make more sense.

Sadly, it is still understanding. Even in "memory care" communities I see staff and families completely miss the boat on what we need to be successful. They say they understand, but don't recognize that different forms of dementia have different presentations and needs. They say they know but I watch them mock and argue and cause more disruption to the day. They say they get it, but then their actions show that they don't.

I give a ton of grace for family members. They weren't trained for this. It's all new and scary. It's why I try to keep things short and simple. Why make it more complicated? I have, however, used their own career and family experience as touch points to help them understand and comprehend what's going on. Professionals, well that makes me a little more nutty. Their JOB is to take care of this vulnerable population. It's their JOB not to trigger people on purpose because they find it funny. It's their JOB to take the time and understand, but a lot of times they don't.

For all the money and effort we put into finding a cure, I really wish more family and care staff education was available. I wish that more communities (ALF, Memory Care, SNF, group homes) saw the benefit of investing in their employees by providing more education regarding dementia EVEN IF THEY ARE NOT DIRECTLY WORKING IN MEMORY CARE. It doesn't have to be a ton of hours, but even a few to help them understand and respond appropriately can go a long way.

All of this being said, another gap is how much professional caregivers get paid (or not paid) we want people to take good care of our loved ones but pay them less than they could make slinging burgers. Even the programs that pay family members to be the caregiver is nowhere near enough. Low pay and high stress leads to a revolving door of care. That with minimal training spells less than optimal care. In the same way, even at the pennies they get paid family members still can't afford help at home. Sometimes agencies charge significant amounts but don't pass it down to the ones actually providing the care. It's a continuous loop of low pay, high stress, and poor training which just makes people leave and our loved ones (and families) without the care and support they deserve.

I'm a throw everything at it until something sticks kind of therapist. How will I know what will work if I don't try everything I have available to me? It can make people crazy while I work through it, but generally people get used to it. "What if" is one of my favorite phrases. What if we tried music for this? What if we used a little of this essential oil to see if it could help? What if we tried this? What if we tried that? I am a firm believer in medication but I am a stronger believer in trying a lot of other things before moving to meds or increasing them if we can. What if we change the environment rather than expecting the person with dementia to change? What if we were more aware of how noisy our house was and how it impacts our loved ones? What if we just talked to them like our friends (bad jokes and all) instead as a child or an invalid? What if we tried some Reiki or other alternative healing today? What if we looked at the changes to their sensory system and looked at how we can enhance things rather than keep fighting the fight we are losing? What if?

How do I convince others of the benefit? Well, I start with finding research that backs up what I'm saying. Some areas have more than others, but if I can find a scholarly journal to show a physician or other therapist it usually helps. Sometimes it's just convincing them that my "crazy idea" might just work and it would be worth giving a try. For example, convincing some very serious physical therapists that my silliness and music interventions can get people to do what they want without as much of a fight. The first few times they give me the side eye and shake their head. After a few successes they are seeking ME out for help working with challenging patients. Physicians over time see that my apparently wild mix of interventions (which are actually research and clinically based) work and they start telling their families who are struggling to come see me. While talking to convince people is one thing, I truly feel that the proof is in the pudding. Presenting successful patients and families are truly what has worked best for me to show how much my more holistic approaches work. Well, that and family/patient testimonials that share their success with others.

This is a HUGE concern in the dementia population and is something that a lot of family members either brush off or deny until we bring it to their attention. We are honestly in an almost continual state of grief while living with someone with dementia. Every day we lose a little more of them and ourselves and other people just don't get it. Grief groups talk about cancer and heart attacks and other forms of death and our families living with dementia feel that they are unseen. I see you.

Dementia is a thief. It steals from you bit by bit almost like being pecked to death by ducks. You don't notice the impact immediately, but over time you start to feel like you are bleeding out. You're tired. You're frustrated. You don't recognize your loved one or you for that matter. Your friends may not call anymore. You may not call them. It's loss upon loss upon loss. Even after your loved one passes, there still feels like you don't fit into the grief community.

This grief is different. This grief is not one where you can cry, go to a group, and move on. You still have to get up and continue caring for the person you are actively grieving, lamenting the life you were supposed to have, missing friends and family. It can start to feel like a heavy blanket that you can't shake.

Let others help you shake it. Find a dementia specific support group where you can voice these feelings without fear. Everyone in that group has been there. They know how it feels. While it may not be grief specific, I can assure you, you are in good company there. If you still feel like an outsider, give it a few more sessions. Ask someone you feel may understand to chat privately. Meet for coffee if you can (even if it is just a few minutes or in your backyard). Be honest with them. Ask what brought them to the group and keeps them coming back. ALLOW YOURSELF TO BE VULNERABLE. I've seen this in quite a few dementia support groups. They become family. They lift you up when you are weak. They support you when you struggle. You return the favor where you can. You are not alone in this journey. Find your support team to help you navigate this dumpster fire of dementia and grief.

Community buy in is HUGE. If the community understands more about dementia and is more Dementia Friendly the more support our folks with dementia and their families have when they are out and about. Imagine if everyone at your local supermarket was Dementia Friendly. How might that change the shopping experience? If the local theaters had Dementia Friendly Concerts or plays to allow our individuals to continue to enjoy the outings they loved while allowing for the needs of dementia? If emergency response personnel understood and took more time and consideration when responding to an emergency? What if we were as inclusive of dementia as we are of autism and PTSD (not saying were ANYWHERE near the finish line on those, but I think you get the idea)? What if the entire community came out to support the Walk to End Alzheimer's or HDSA's Team Hope Walk or Parkinson's Foundation's Moving Day just because they want what's best for their community vs just the people impacted attending? What if we looked at dementia not as a healthcare epidemic but as an opportunity to become better as a people?

So many what ifs there. It all starts with education and outreach. I actually trained some of our library staff here to help them understand more about their patrons who may have dementia. The responses from them (even when they identified someone I knew and how they had misunderstood them) were wonderful! They were able to see where they could help all of their patrons better, but especially those with dementia. They realized that they also needed to assist their caregiver so they are better supported as well. If just a few employees at key locations had this knowledge and power, we could start a chain reaction that could change the world!

Well, the original idea a toolkit for caregivers who have moved their loved ones into memory care and how to engage while they are visiting. While it's a great idea, I'm not sure it's really enough for a book AND I don't want it to become a "do this" kind of thing. Then I shifted to activities for people at home OR in memory care, but it became a bit too overwhelming. I'm kind of a stream of consciousness type of writer. The ideas continue to marinate in my brain and when they come together I literally write my books in a weekend. There's a lot that people want to know and have directly asked for but without the right direction and content it ends up being useless.

Currently, I'm leaning more toward a book specifically for the caregiver (Truthful Tips for YOU THE Dementia Caregiver). Starting my little TikTok channel is helping me see more of what people want and need and one of the biggest challenges is helping caregivers see that they are amazing. That they are withstanding one of the most challenging, lowest paid, unglorified jobs out there and just SHOWING UP EVERY DAY IS SUCCESS.

I know that didn't really answer the question. I guess the true answer is that as soon as my brain puts it together we'll all know what it's about!

I've been exploring your site and love all of the options you provide! I think the main thing I would always recommend for caregivers is to look ahead and be prepared sooner than you think you need. Think you might need grab bars in the shower? Do them before you need them so they are already part of the fabric of your day. You can start cuing using them for assistance before it's required. Same with shower chairs, hydration, ambulatory supports, and other tools. Get used to them before it is an emergency. The more all of these things are part of our "normal" (whatever that means with dementia) the better chance we have of being successful in the future. Having the conversation early in the disease process of how we will do everything we can to keep them safe EVEN IF it goes against what they want. There is something liberating in freeing yourself from a promise of never using the tools available to help. Same thing with exploring options. No one walker is perfect for everyone. No one shower chair. Everyone is different. Work with a good team to find what is perfect for you even if that perfect changes and we have to try something else. Don't be afraid to speak up and articulate what is going on even if you aren't sure how to say it. Professionals like EnhDme are there to help figure out what that means and the best way to keep you and your loved one safe.

OK. I know that wasn't one thing, but I think making sure that families know about the tools available to them to make their lives easier and how they can afford them is paramount to successful, safer homes.