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5 Surprising Facts about Dementia Caregivers (Ep #038)

Mar 04, 2020

 

I hear from caregivers pretty regularly that"nobody really understands how hard caring for a loved one with dementia is!"

So, I decided to share some facts about dementia caregivers in the hopes that it will provide some understanding and support for the dementia caregiver's journey!

 

 

If you're caring for somebody with dementia, I see you and I value what you're doing. 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. This episode will give you some resources for self-care. So, read (or watch) until the end!

 

Read transcript here

 

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

Nearly half (48%) 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)

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.

 

And women tend to be the ones providing care. So of all dementia caregivers, two thirds (2/3), that's 67% are women and over one third (1/3) are daughters.

 

If you're a "dementia daughter", here are a couple of resources to give you a little extra TLC:

 

3. Dementia is the most expensive illness to care for

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 ($11,233 versus $6,075). 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.

 

Surprising Fact (BONUS!)- dementia caregivers provide care on average one to four years (1-4 years) longer than caregivers of other conditions

Along with how expensive dementia caregiving can be, caregivers provide care on average one to four years (1-4 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. The majority of dementia caregivers are still working on average 35 hours a week

In fact, 60% of dementia caregivers are still working on average 35 hours a week. Whoa. Right? 60% of caregivers of folks living with dementia are working almost full time. This 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

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.

 

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 regularly hear from caregivers"  "nobody has asked me how I'm doing. Nobody really takes the time to listen to how I'm doing."

The dementia caregiver's journey can lead to a lot of loneliness and isolation. There may be loneliness in the relationship if the person with dementia doesn't recognize you anymore. And then there's potentially loneliness  with society if you're stuck at home, providing 24/7 supervision or care.

 

If you're caring for somebody with dementia, I see you and I value what you're doing.

 

Please, please, please take care of yourself because we know that depression, anxiety, and stress will not only affect your sense of self and well-being, it will affect your health.

 

 

To make this a little bit easier, here are three simple strategies for self-care

3 Simple Strategies for Self-Care!

One way to take care of yourself is to listen to stories of other caregivers and get support. 

1. Listen to other dementia caregiver's stories!

Here are a couple of interviews I did with dementia caregivers! Listening to others' stories will help you feel less alone and may give you some ideas to reduce your caregiving stress.

 

2. Get educated

The more educated you are about dementia, the more empowered you will be in your dementia caregiving journey. There is a lot of misinformation about dementia out there. But, here are some resources you can trust:

 

3. Get support!

A great place to do this is 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 (other dementia disorders are supported there as well). 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. Click here to go directly to their community page and find support today!

 

Wrapping Up!

If you liked this episode and you want to share some of these surprising facts about dementia caregivers with a dementia caregiver, go ahead and share them. But even better, call up a dementia caregiver you know and let them know that you care.

            


Want to learn more about dementia?

I wanted to share with you an important freebie, that's something free, I made for this episode. It's called,  Dementia 101: A Beginner's Guide to Dementia Disorders. In it, I describe what dementia is and isn't. I describe the phases of dementia and what to do if you're worried that your aging parent may have dementia. So, take a moment to download it. It answers some of the most frequently asked questions I get about dementia!

 


 

Related Episodes:

 

Reference for this episode: Reference: Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

I'm Dr. Regina Koepp!

I'm a Stanford trained, Board Certified Clinical Psychologist specializing with older adults and families! I'm an Assistant Professor at Emory University School of Medicine Department of Psychiatry & Behavioral Sciences, and a staff Psychologist working with older adults and families at the Atlanta VA Health Care System. I'm a mom of two little kids and a daughter to aging parents.

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