Families struggling to afford home care leading to more youth caregivers: advocate
Connie Siskowski, president of the American Association of Caregiving Youth, said the economy and an aging population needing more complex care has led to more youth caregivers.
Alzheimer’s disease puts a significant burden on not only the nearly seven million people who have been diagnosed with it, but also the caregivers supporting them.
More than 11 million Americans provide unpaid care for people with Alzheimer's or other dementias, according to data from the Alzheimer’s Association. And 70% of them say that caregiving is stressful.
Dr. Heather Sandison, a renowned expert in Alzheimer’s disease and related dementia care, said it’s critical for caregivers to protect their own mental and physical health.
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In her new book "Reversing Alzheimer’s: The New Tool Kit to Improve Cognition and Protect Brain Health," published by HarperCollins on June 11, Sandison — who is based in California — outlines the specific risks that caregivers face.
In the excerpt that follows, Sandison offers some tips and techniques for how caregivers can release expectations and practice self-compassion.
Dr. Heather Sandison, left, a renowned expert in Alzheimer’s disease and related dementia care, said it is critical for caregivers to protect their own mental and physical health. Her new book is "Reversing Alzheimer’s: The New Tool Kit to Improve Cognition and Protect Brain Health." (Dr. Heather Sandison/iStock)
Read an excerpt from Dr. Sandison’s new book
Dr. Heather Sandison: When I meet with a new dementia patient, I know that I am treating their caregiver in addition to treating them.
Of course, not every caregiver is on board with the idea of prioritizing their own health at that moment — mostly, they want to do everything they can to help their loved one get better.
"Dementia is almost like a virus. It doesn’t affect just one person. It can reach out and impair the cognitive health of the people who care for the patient, too."
But dementia is almost like a virus. It doesn’t affect just one person. It can reach out and impair the cognitive health of the people who care for the patient, too.
To be blunt, if you are not caring for yourself, you are not going to be a good caregiver.
Taking care of someone with Alzheimer’s is such a big and important job that it’s easy to lose yourself to it … If you don’t also care for yourself, your effectiveness and your health will suffer, which will only make things worse for the person you’re caring for.
Risks of caregiving
I’m guessing you already know that caring for someone with dementia is taxing. You may not realize just how detrimental to your own health it can be. I’m sharing this list so that you can see the potential costs of not tending to your own well-being during this time.
An expert in Alzheimer’s disease and related dementia care, Dr. Sandison believes that reversal isn’t just possible but that it’s already happening in multiple patients. (Dr. Heather Sandison)
Caregiver burden
Whether you’re living with your care partner and providing day-to-day care, or living at a distance and providing mostly financial and/or logistical support, having someone in your life who has dementia is often hard in multiple ways — emotionally, physically and financially.
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Many people find that their sleep, diet, physical exercise and fun suffer. It’s a burden that works in two directions: It’s common to give up the things that help you stay healthy, and to feel a big weight of responsibility, frustration and guilt.
With Alzheimer’s, patients lose their independence, and there are no benchmarks that align with a predictable timeline. That unpredictability can make the experience stressful and uniquely challenging.
Impaired cognitive function
Research has found that dementia caregivers have significantly lower scores on tests of cognitive function.
"With Alzheimer’s, patients lose their independence, and there are no benchmarks that align with a predictable timeline," Sandison writes. "That unpredictability can make the experience stressful and uniquely challenging." (iStock)
This may be linked to the fact that many caregivers report poor sleep, which can impair your ability to process and respond to information, and thus can influence how safely you are able to perform complex caregiving tasks.
Depression
Depression and dementia are closely linked — having depression can increase your risk of dementia, and having dementia can increase your risk of depression.
"Taking care of someone with Alzheimer’s is such a big and important job that it’s easy to lose yourself to it."
On top of that, caregivers of people with dementia experience depression more frequently than the general population, and depression in a caregiver can in turn affect the status and prognosis of the dementia patient.
Isolation
A common feeling among dementia caregivers is that people who aren’t also caring for someone with dementia can’t understand what it’s like, which understandably can lead to feeling isolated from others.
Also, your devotion to your loved one can make it hard to ask for help. On top of that, your caregiving duties may be preventing you from getting together with friends or doing things that get you in the company of others, such as working out at the gym, attending church or participating in some other social activity.
Dementia risk
Devastatingly, all these negative effects combine to create an increased risk of developing dementia yourself — up to a sixfold increase compared to non-caregivers. Which is not to say that caring for someone with dementia definitely means you are getting dementia, too.
It’s really when the sense of caregiving burden is high — and you don’t exercise as much, sleep as well or make healthy food choices — that this risk is at its highest.
Caregiver non-negotiable: At least one day off
If there’s one thing I know for absolute certain about Alzheimer’s, it’s this: Taking care of someone with dementia is not a one-person job.
Trying to do it all yourself without ever taking a break is impossible. It will only increase your caregiver burden and put you on the path to burnout, which can then take a toll on your own risk of developing dementia and render you less able to care for your loved one.
More than 11 million Americans provide unpaid care for people with Alzheimer's or other dementias, according to the Alzheimer’s Association. (iStock)
It’s for this reason that I tell every caregiver I encounter that there is only one nonnegotiable piece of any caregiving plan, and that is that you take at least one full day a week off from caregiving.
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Why? In addition to staving off your own burnout as well as giving you some time to care for yourself, putting in place a "my day Friday" (or any other day[s] of the week) will force you to line up some help.
Even if you think you don’t need any assistance now, it is only a matter of time until that changes.
Tools and techniques
Whether you realize it or not, you already have ways of coping with the stress that caregiving can give rise to — it’s just that they are likely not that helpful in the long run. That may be skipping out on sleep, drinking alcohol, blaming others, blaming yourself or deciding that you just need to try harder.
All these can ultimately only add to your caregiver burden, not lessen it.
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Here, I’m providing a laundry list of tools and techniques that can help make a positive difference in both your day-to-day reality and your long-term health.
Reframing
This is a shift in your thinking that helps you deal with the unexpected with more equanimity — such as when your loved one is not listening to you. It’s very easy to be judgmental in these moments, and to feel victimized, as in "Why are they making my life harder?" Especially when you’re caring for a family member, with whom you have a long history.
Ultimately, making it about you and judging the other person leads to more disconnection, which can breed upset and an escalation of the challenge.
"Self-compassion has also been shown to reduce the perception of caregiver burden," Sandison writes. "An important way you can implement self-compassion is to continually remind yourself that you’re doing your best." (iStock)
Whenever you’re in that place of judgment, there is an invitation in that moment to notice that you’ve gotten upset, and then reframe your loved one’s behavior as the communication of an unmet need.
Determining an unmet need requires some curiosity and some detective work. In any situation, take a step back and objectively ask, "What’s going on here?"
"There is only one nonnegotiable piece of any caregiving plan, and that is that you take at least one full day a week off from caregiving."
For example, if your care partner isn’t listening to you, instead of concluding that they are choosing not to hear you, stay open enough to investigate if their hearing aid is turned up, or needs a new battery, or if there’s too much background noise.
Releasing expectations
This is probably one of the hardest things about loving and caring for someone with dementia — little by little, they lose the ability to do things they once could, whether that’s log into an online account, manage finances, remember your name or brush their teeth.
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As painful as these losses can be to witness, what makes them more upsetting is when you expect your loved one always to be able to do what they once could.
That’s why, even though you hold out hope that they will be able to do some of these things again, it’s helpful to everyone — especially you — if you can let go of the expectation that they continue to be the person they were. By releasing the expectation, you can relieve yourself of at least a bit of the disappointment that comes from being let down when your expectation isn’t met.
Take at least one day off per week from caregiving, an Alzheimer's expert and author of a new book recommends. (iStock)
Maintaining a spirit of curiosity can help.
Saying things to yourself such as, "I wonder how this will go," can help you meet your care partner where they are that day. Don’t forget to enjoy and celebrate when your loved one does regain capacity.
Self-compassion
Self-compassion has also been shown to reduce the perception of caregiver burden. An important way you can implement self-compassion is to continually remind yourself that you’re doing your best.
That may not mean you’re doing a perfect job, or even a great job — some days, you may need to phone it in because you didn’t sleep well the night before, or you’re not feeling well, or you have to focus on work that day, and that’s OK.
But it does mean that you are doing the best you can in that moment.
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The fact that you are willing to be a pioneer and learn about the things that can prevent or reverse the downward slide of dementia and put in the work to help your loved one get better suggests to me that not only are you doing your best, you’re doing a phenomenal job. It’s not easy to be at the forefront of a movement.
"Try talking to yourself the same way you would talk to a friend — someone you care for, and whom you’re trying to encourage."
Another important tool is to become aware of how you talk to yourself. We all have moments when we get frustrated, say the wrong thing or do something we later wish we could take back. I think we can agree that no one is perfect.
So when things do go wrong, begin to notice what you say to yourself about it. It helps you become an observer of your own thoughts, which then creates a window of opportunity to be more intentional about what you tell yourself.
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In these moments, try talking to yourself the same way you would talk to a friend — someone you care for, and whom you’re trying to encourage.
If they made a mistake, I’m guessing you wouldn’t criticize them.
You would just remind them that they’re doing their best. Resist the urge to say harsh, judgmental or downright mean things to yourself.
Excerpted with permission from the new book, "Reversing Alzheimer's: The New Tool Kit to Improve Cognition and Protect Brain Health" (HarperCollins) by Dr. Heather Sandison, copyright © 2024 by Dr. Heather Sandison. All rights reserved.
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