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5 Surprising Facts About Dementia Caregivers

Episode #038


Today I am devoting to dementia caregivers, so I'm going to be sharing five surprising facts about dementia caregivers. Dementia is the most expensive illness to care for.

Hello there I am Dr Regina Koepp and this is The Caring for Aging Parents Show. I'm a Board Certified Clinical Psychologist and I specialize in older adults and families. I help you manage the most complicated situations with your aging parents so that you have peace of mind knowing that you are doing everything you can to help your parents live their best lives without giving up your own life in the process. So for the best tips on helping you to care for your aging parents, subscribe to my show and you'll get new tips every Wednesday. As we get started. I wanted to share with you an important guide that I made called Dementia 101: A Beginner's Guide to Dementia Disorders. In this guide I talk about what dementia is and what it isn't. I describe the phases of dementia and what to do if you're worried that your aging parent may have dementia. I'll link to it in my show notes, so take a minute and download it. It answers some of the most frequently asked questions I get about dementia.

Today I am devoting to dementia caregivers. So I'm going to be sharing five surprising facts about dementia caregivers. 


1. Nearly half of all caregivers provide care for someone with dementia

The first interesting, surprising fact- nearly half of all caregivers provide care for somebody living with dementia. So of all the illnesses that older adults experience, all the illnesses that people in life experience and need care for. Nearly half of all caregivers everywhere provide care for people living with dementia. That includes Alzheimer's Dementia, vascular dementia, Lewy body dementia, all types of dementia disorders, nearly half. So that says a lot about the complexity of dementia and how much care is needed, especially at the middle and later phases.


2. The majority of people living with dementia live with a family member (not in Assisted Living or a Nursing Home)

So number two is that the majority of people living with dementia live with a family member, not in a nursing home. In fact, still less than 5% of older adults live in nursing homes. So the majority of people living with dementia actually live with a family member.

And women tend to be the ones providing care. So of all dementia care givers, two thirds, that's 67% are women and over one third are daughters. There is a woman that I'm friends with and she has a program called "Joy in Dementia" and she is a dementia daughter. She identifies as someone who's caring for her dad. Her name is Laura Smothers Chu. So look for "Joy in Dementia".


3. Dementia is the most expensive illness to care for

So number three is that dementia is the most expensive illness to care for because it often requires 24/7 care for long periods of time, like years and years. In 2018, dementia, caregivers reported nearly twice the average out of pocket expenses than caregivers caring for other conditions. So they spent on average $11,000 and some change and other caregivers spent $6,000. So, um, that includes like paying out of pocket expenses for like medical care, personal care, household expenses, and so on for the person living with dementia, also respite expenses, things like that.


So, along with how expensive dementia caregiving can be. Caregivers provide on average one to four years longer than caregivers of other conditions. So not only are they paying annually, nearly twice as much as caregivers who are not caring for dementia, rather other conditions, they're spending that much money for longer - for one to four years longer. So it's really intense on families. And that's why there's so much attention to dementia, because it's a really... The illness course is very painful. All illness courses are, (with dementia) there's a complexity with the mind all the changes in the brain. And the complexities with that and decision making and behavioral issues. And that takes a toll on caregivers. And we'll talk about that toll in a minute.


I don't mean to diminish the effect of caregiving for folks who are not caring for dementia disorders. I think caregiving is an incredibly selfless and challenging, no matter what condition you're caring for. And, um, I wanted to talk a little bit today about dementia caregivers, but I really have a lot of value and respect for caregivers who are caregiving for any condition.


4. 60% of dementia caregivers are still working on average 35 hours a week

Number four is that 60% of dementia caregivers are still working on average 35 hours a week. Whoa. Right? So almost full time. So 60% of caregivers of folks living with dementia are working almost full time. That is where I think we could do better as a society with Family Medical Leave Act and protecting folks jobs with caregiving. We need to be doing a better job with that as a society.


5. Dementia caregivers have higher rates of stress, depression, anxiety, and strain

All right. And number five is that caregivers of people with dementia unfortunately have higher rates of stress, depression, anxiety, and strain than caregivers caring for other medical problems. They also have more health problems than caregivers who are caring for other medical problems. And this is attributed to all of the challenges with the behavioral issues that come with dementia and the 24/7 care need that often folks with in the middle or later stages of dementia cannot be left alone. They need 24/7 care. There's a lot of angst, there's a lot of decision making by the family caregiver- for, for small and large decisions. It's very challenging and that takes a toll. So all of that stress and strain takes a toll. I wanted to give a shout out to dementia caregivers because I hear from caregivers all the time that they, um, they'll share with me and say "nobody has asked me how I'm doing. Nobody really takes the time to listen to how I'm doing."


And it's challenging because it can lead to a lot of loneliness. There could be loneliness in the relationship if the person doesn't recognize you anymore. And then there's loneliness potentially with society if you're kind of stuck at home, providing 24/7 supervision or care.


If you are caring for somebody with dementia, I see you and I value what you're doing and please, please, please take care of yourself because we know that depression and anxiety and stress and strain will not only affect your, your sense of self and well-being, it will affect your health. And so please find some ways to take care of yourself.


Recommendations for Dementia Caregivers

One way to take care of yourself is to listen to stories of other caregivers and get support. And so you could do that at your local Alzheimer's Association. They have loads of family support programs. You don't even have to have Alzheimer's, dementia to receive services at Alzheimer's Association. It's a nonprofit, it's typically free. Find the Alzheimer's Association near you and your local chapter and, and get connected with a support group.


Wrapping Up!

So if you liked this video and you want to share some of these surprising facts about dementia caregivers, share them with your friends so that anybody that you know who is caring for somebody with dementia is not alone. If you think that they might not want this video, that's fine. Just give them a call or give them a hug and let them know that you care.


That's all for today. And in wrapping up, I wanted to remind you about the freebie that I made about dementia called Dementia 101: A Beginner's Guide to Dementia Disorders. Take a minute and download it. It will really help you out. If this video was helpful, be sure to subscribe and don't forget to share this video with your friends who are caring for their aging parents because nobody should have to do this caregiving thing alone.


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