Patti Pilat Buono

What You're About To Read

Statistics You Should Know

I’m a numbers person. I’m also a straight-forward facts person. It’s important to me to have all of the facts so I can understand my position, and make intelligent decisions moving forward.

I’m also a caregiver with unconditional love and devotion for Mom.

All of this combines to put me in a position of looking for, and evaluating facts and figures related to my current life. Caregiving can feel extremely lonely and isolating, but in reality we are a huge percentage of America right now, and there is no reason we should feel alone. That’s actually the reason I started this blog—I felt alone in my job as The Mayor.

So, I did a little digging, and I recommend you take a few minutes and click on all of my resources at the end of this blog—you’ll learn a lot of facts that will both make you sad and validate your current situation.

Caregivers In America

I found a new term while researching this blog: “Informal caregiver”. That’s you and me—people who are providing unpaid care to someone in the last twelve months. I love how they use “informal” in place of “unpaid”—like that makes it less stressful on our families.

We are a big group – We will start with a startling and unsettling statistic: Approximately 34.2 million Americans are providing unpaid care to an adult aged 50 or older. Of that total, approximately 16 million of us are caring for someone with Alzheimer’s or other dementia. There are over sixteen million of us—why does it feel like we are alone in a sea of misery? Not only that, but 75% of caregivers are female, making it even more important that we build a supportive community to complete this job to the best of our ability.
What do we do? – Almost half of us (46%) provide medical and nursing tasks on a daily basis. Over 95% of us are providing complex chronic care that includes supporting ADLs (Activities for Daily Living). This means we are helping with personal hygiene, dressing and undressing and mobility issues, to name just a few.
We spend a lot of our own money – It is estimated that family caregivers are providing services that would otherwise cost $375 billion dollars a year of professional care.

Where Do They Live?

The numbers below were quite surprising to me, and I’d love to know your thoughts on them. Since 78% of adults in need of care depend on family for support and assistance, I thought more people would be living in a multi-generational home. Not quite…

Alone – It surprised me that over half of patients reside in their own home, with only 29% living with The Mayor. Perhaps this number reflects people who do not need 24-hour care, but it really was shocking.
At our house – Only 29% of loved ones are living with the family caregiver. Since my parents moved into my house when things started to become more difficult, I always assumed that was the norm. I really couldn’t imagine having to commute to take care of my parents, but understand that many people lack the space in their homes to add another one or two people.
In different facilities – Despite Mom no longer living here, I still identify as a full-time caregiver, because I am still spending long hours at The Facility, and even longer hours worrying about the time I’m not at The Facility! According to research, only 4% of patients are in long-term nursing facilities.

What Symptoms Are We Living With?

One of my friends cared for her mother, and the most difficult symptom she had to deal with was hyper-sexuality. An uncommon symptom, it caused problems for her in her care facility and was quite uncomfortable for my friend to deal with. That is just one example of symptomatology of Alxheimer’s and dementia you might have to face. Let’s look at the most common symptoms we are dealing with.

Confusion – While not nearly the first symptom I noticed with Mom, the confusion she felt in those early and middle stages of dementia were very difficult. It was impossible to reason with her, and she would fixate on an untrue “fact”, and not let go. The best advice through this symptom is to agree with their version of the truth, and try to find ways to redirect.
Agitation and Aggression – Significantly more upsetting and difficult for me to handle, Mom becoming agitated about things unseen and imagined was one of the things that led to her having to be moved to The Facility. Like many patients, she would become highly irritable and go into emotional distress over something she perceived to be wrong. Several times, this led to some aggressive behavior that required some light restraint—and I did have to endure some nasty comments and getting shoved with her walker. This is a tough symptom.
Wakefulness and sleep disruptions – Research shows dementia patients require less sleep, and their sleep and awake cycles can get really confused. This leads to them wandering during the night—which was my biggest fear as Mom got worse living in our house. I could not depend on her sleeping through the night, and if she woke up agitated, she would move around the house, sometimes trying to leave. Tough times.

We Have Changed Our Lives

Commuting to care – A striking 51% of care recipients still live in their own home, making it part of The Job to make the daily commute to take care of your loved one. That additional stress also makes it hard to relax on our “off hours”, since the patient is alone at night when we go home. Long distance caregiving is also on the rise, increasing the cost of taking care of your loved one due to transportation issues. An additional $10,000 per year is the average long distance caregivers spend just to visit their loved one.
Making room in our home – Research shows that millions of us have to reconfigure our homes to make room for our loved one. While this is a noble endeavor, and is done with thoughtful consideration, it can make things more difficult and stressful for the family. One of my friends, for example, had to move her children into one room when they previously had their own room, increasing stress on her family during an already very difficult time.
Being unable to work – How exactly does the government think we are providing this 24-hour care for our loved one? We stop working, that’s how! Research shows that the financial burden of caregiving is exacerbated by the decrease in caregiver income when they drop from full- to part-time work, or become underemployed so they can spend their time providing care for their loved one.
Stress on our marriage – You know exactly what I’m talking about here, Boo Boo. When all of your time, energy, patience and money are going to your loved one, there is little left for the rest of the family. While 80% of us report strain on our relationships, a shocking statistic is the high divorce rate for caregivers. Process these numbers, and find ways to do better, my friend.

Effects On Our Health

The negative impact on caregiver mental and physical health can not be overstated. I know, we are all doing it out of love, but let’s admit that there are absolutely detrimental results of doing The Job. Research shows that positive activities in our personal life are reduced by 27%! That means we are doing things for ourselves at least a quarter less time than before we became The Mayor.

Additional stress – We’ve added so much on to our shoulders that the results could absolutely be catastrophic. Research shows caregivers feel overwhelmed, isolated and lose interest in activities we used to enjoy. We feel worried or sad quite often, and become easily agitated or irritated with people we love. Unfortunately, many of us develop physical symptoms like headaches or digestive issues, or even increase unhealthy habits like smoking and drinking. It ain’t pretty.
Not keeping up with our appointments – This one is personal, and I offer it for you to look in the mirror. When Pop was failing, and then again when Mom was getting worse, I didn’t do anything for myself. I was doing so many doctor’s appointments that I avoided caring for myself. My own health was definitely suffering, but I put all my energy in keeping Pop going, and keeping Mom safe. Do not let your own health fall by the wayside during this period—you still have a long life after you are done as The Mayor!
Sleeplessness – People underestimate the importance of good sleep on their overall health. When Mom was getting worse, I would wake up multiple times in the night, thinking I heard something downstairs. I couldn’t take anything to help me sleep, because of the constant concern for Mom moving around in the night. Poor sleep patterns can have both mental and physical repercussions, so I urge you to prioritize your sleep.

We Are The Sandwich Generation

We are caring for our children and our parents at the same time. It isn’t easy, and it certainly wasn’t our plan, that’s for sure. But it is our passion. I don’t regret a single minute of The Job.

The average duration of serving as The Mayor is four years. Fifteen percent of caregivers fall into my position, giving more than 10 years to The Job. No matter where you are in this spectrum, take a minute to be proud of yourself.

You’re doing an amazing job. Now, go take a nap, my friend.

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about eldercare statistics!

Hey, since you’re here! You may as well check out tax season for the elderly, here, or if you’ve read that, check out eldercare Easter, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.

Oh! And don’t forget to check out my video series by CLICKING HERE!!!