In the spring of 2011, the National Institute on Aging and the Alzheimer’s Association announced a new pre-clinical stage of Alzheimer’s Disease, marking the first change in the definition of the illness in 27 years. The announcement grows out of evidence that plaques and tangles characteristic of Alzheimer’s Disease begin to form in the brain years before the patient shows any symptoms. The new definition raises the tantalizing possibility of developing treatments that could delay or halt the progression of the illness before the brain is compromised. BeClose.com spoke with Dr. William Thies, chief medical and scientific officer for the Alzheimer’s Association, about the impact of this new definition both today and in the future.

Q: If there are no symptoms, why is it important to identify this very early phase of Alzheimer’s?

A: There is the feeling in the field that by the time someone has become demented, it’s too late to treat them. What we’re beginning to see is the evolution of a picture that is a lot like that of other diseases with a long onset. For example, at one time, people defined heart attack as the event that happened when the coronary artery was blocked. But the real success in treatment came when it was realized that the pathology for heart attack appeared many years before a heart attack occurred. We now know that if you treat the sclerosis that underlies the problem, you can prevent a heart attack from ever occurring.

Q: Can you get tested for pre-clinical Alzheimer’s at this point?

A: No, you can’t go to your local doc and say, I’d like to get this particular cerebro-spinal fluid test; it’s just not commercially available. That said, it may be possible that amyloid imaging, which is a way of using a PET scanner to take a picture of the amount of beta amyloid in an individual’s brain, will become publicly available in a relatively short period of time. A few months maybe. However, for consumers, there’s no point in doing the testing unless there are good treatment options.

Q: What are some of the most promising avenues of research into future treatments?

A: Many of the therapies being tested have the potential to limit the accumulation of beta amyloid. This is a polypeptide chain that exists naturally in the brain, but develops two extra amino acids as some people age. This substance starts to accumulate in the brain. We know from experiments that beta amyloid is toxic to brain cells. Many feel that if you could limit that accumulation of toxin, you could limit the course of Alzheimer’s Disease.

Q: How would a potential drug work?

A: You can either get the brain to make less amyloid or get rid of more. It’s not exactly rocket science. Two drugs are currently being tested at phase III level—these are the big trials necessary to get permission from the FDA to sell the drug. Being in phase III doesn’t mean that the drug is effective. Still, we can at least imagine a time when they might be available in your medicine cabinet. So that’s one promising area.

Q: Any others?

A: Some data says that if you drink more red wine you tend to have less Alzheimer’s Disease disease, so that track of epidemiological information has led us to resveratrol, an antioxidant found in grape skins. There’s also a blood product called IVIG (intravenous immunoglobin), which is being tested at phase III level. All of those are promising.

Q: But all this is far off. Without a cure, what’s the benefit of knowing you have this devastating illness in your future?

A: The Alzheimer’s Association has encouraged early diagnosis for years, not so much for the medical care you can receive, but rather for your ability to learn about the disease and prepare for the future. If you have a goal to travel around the world, for example, and if we have an effective biomarker that could let you know years in advance, you might want to take that trip a bit sooner while you’re still able. You’d certainly want to create powers of attorney so that your healthcare and estate planning would be handled as you wish.

Q: What about the impact for family members and potential caregivers?

A: It’s a chance for education. One of the things people don’t recognize is that people in early stage dementia get victimized by society. For example, they don’t remember they just bought a new car, so they go out and buy another one. Family members can help protect them from harm. Another benefit is understanding that Alzheimer’s changes peoples’ personality. This can be devastating to family members who mistakenly believe that mom or dad, in expressing hostility or anger, is revealing true opinions they’d been hiding for years. So the value of an early diagnosis will be able to stand on its own even with the limits of what we know today. And certainly knowing that better medications are coming, it takes on an even greater purpose.

–Steven Slon

Steven Slon is the Editorial Director for The Saturday Evening Post. He writes a regular column about aging and caregiving for http://www.BeClose.com, in which this article first appeared.

New Hope for an Alzheimer’s Cure The Saturday Evening Post

For many of us, this is an “ouch!” moment. People often find that their wages barely cover the expense of home care (or that they’re positively dwarfed by the cost of institutional care.) So, many of us quit our jobs and take on the infinitely more complex role of being caregivers without giving the question much more thought. Today, nearly 10 million adult children over the age of 50 care for their aging parents, triple the percentage that were doing so as recently as 15 years ago.

Trouble is, there are hidden costs to leaving the workforce that most people fail to consider, according to “Caregiving Costs to Working Caregivers,” a study produced by the MetLife Mature Market Institute in association with the National Alliance for Caregiving  and The Center for Long Term Care Research and Policy at New York Medical College.

The study suggests caregivers who quit work can undermine the vital mission of planning and saving for their own retirement. This can set up a vicious cycle of dependency that will one day require their own children to devote precious resources to their care, according to Sandra Timmermann Ed.D., Executive Director of the MetLife Mature Market Institute. I spoke with Dr. Timmermann about the study and its implications for adult children whose parents may soon require caregiving:

Q: Your study has a subtitle, “Double Jeopardy for Baby Boomers Caring for their Parents.” That’s intriguing. Can you explain what it means?

A: We are well aware of the out-of-pocket costs for providing care. But prior to this study, no one really tracked the lost wages, lost pension and Social Security benefits and all the other costs. Double jeopardy reflects the hidden costs to caregivers for providing care.

Q: What are they giving up beyond wages?

A: Their nest egg is being slashed because they’re losing years of savings. And if they’re working in a company with a matched program like a 401(k), they’re losing those contributions. Dropping out of work may also impact their final Social Security payout. These costs are “hidden,” because so many people are living paycheck to paycheck and they may not look at the long range implications.

Q: That’s a lot to think about. Are there other hidden costs?

A: All of the caregivers we surveyed were over the age of fifty. So, for many of them it’s hard to get back in the workforce after a few years of doing home care. The calculation, “I’ll quit my job for a few years and then come back,” may not be realistic.

Q: When you add it all up, quitting work to be a caregiver can be pretty costly.

A: Perhaps so! It might really be better to hire somebody—even if it seems expensive—or find lower-cost community resources like adult day services, rather than quit your job.

Q: What are the policy implications of your report?

A: Ideally policy makers would consider the family caregiver as a deliverer of care as much as a hospital or assisted living facility, and then look at what could be done to support them. Tax credits would be one idea. Obviously that’s hard when most state and local governments are looking at so many cutbacks. At present, the government has established a program called the Class Act, which provides a very small benefit for long term care.

Q: And what are the implications for individuals?

A: It is a bit of a wake-up call. Caregivers need to look at what’s best for themselves, because they don’t want to be in the same situation as their parents 20 years down the road. There needs to be heightened awareness of individual finances and how they’re impacted by the decision to provide home care for a family member.

–Steven Slon

Steven Slon is the Editorial Director for The Saturday Evening Post. He writes a regular column about aging and caregiving for http://www.BeClose.com in which this article first appeared.

Hidden Costs of Caregiving The Saturday Evening Post

While it is well known that caregivers in general are more prone to depression and physical illness than the rest of the population, few have looked into the particular challenges for those who do so from afar. One who has is Polly Mazanec, Ph.D., assistant professor at Case Western Reserve and an advanced practice nurse at University Hospitals Seidman Cancer Center. I spoke to Mazanec about her findings, which were published recently in Oncology Nursing Forum.

Q:  Looking at the differences between local caregivers and distance caregivers, what jumps out at you?

A: Long distance folks were significantly more anxious and the female caregivers in particular had higher depressive symptomatology. But what was most concerning, both groups had distress scores that exceeded the National Comprehensive Cancer Center guidelines for intervention.

Q: In other words, they ought to be getting help. Are they?

A: Local caregivers are getting help. Distance caregivers are not. In my work as an advance practice nurse in a comprehensive cancer center, there is a whole team to support the patient. There are multiple opportunities for care, including emotional and spiritual support. The team can also assist the family, both with practical matters and general guidance. With distance caregiving, families are left out in the cold.

Q: What are the greatest sources of stress for the distance caregiver?

A: The uncertainty and the guilt. Not knowing exactly how a patient is doing from day to day; wishing one could be there to provide more support; not knowing when or how often to visit. In many ways, that last one is the hardest question: if one can only afford to come visit for one week, when should that be? There’s the cost of travel, the commitment to a job, and the competing needs of one’s own family.

Q: In your article, you described a caregiver whose mother had advanced cancer. She waited until after the chemo to make her visit, but found her mother terribly debilitated and barely able to communicate. This individual was filled with regret, and wished she had gone earlier. When is the best time to pay that visit?

A: Just as when people ask, “Is my loved one dying?” we can’t answer that question exactly. But, we can help the caregiver decide on the timing. Some have a relationship where they would like best to be helping with the details, cleaning, administering medications, and so forth. Others would like to be there when the patient is feeling better so they can talk, do a “life review,” or spend time going to lunch and doing something fun. It really boils down to the need for improved communication both with the nursing and support team and among the family.

Q: Not all families are good at communication. It’s not too hard to imagine some parents responding: “If you were a good son or daughter, you wouldn’t come for a one-week visit. I’m dying and I want you to move out here for six months.”

A: Every family has issues. If a parent were to say something like that, it would almost be a gift. I would look at that as an opportunity to have a family meeting, even if it had to be by video conference. At the meeting, the support team would encourage the patient to talk about the anxiety that was causing the patient to wish for something that wasn’t possible. It’s essential to address those disruptive feelings before all that guilt is placed on the caregiver.

Q: Who should people turn to to help facilitate the discussion?

A: Typically advanced practitioners in palliative care are trained to do that. Some communities may have a palliative care team available through their local hospitals or hospices which would be even better. And of course, if the person you’re caring for is in hospice, they’ll have the team.

Q: And if the patient is not in a support network of some kind?

A: First, you should access their primary care provider. They’ll know counselors in the community who can facilitate a family discussion. Second, two websites are very helpful: The National Alliance for caregiving, and the National council on Aging. Both have good links for local counseling. These sites also have a lot of great help for practical needs—paying bills, healthcare, transportation, and so forth.

Q: Is distance caregiving ever an advantage?

A: It can be. For our study, one person said a parent who was normally uncomfortable with personal matters seemed able to speak more freely over the telephone. I also hear from some people that the distance allows the relationship with a parent not to be all about the illness; the discussion turns to grandchildren or the patient’s relationship with people in the community.

Q: In communicating long distance, what’s most important?

A: Being upfront, expressing your true wishes to be able to help as best you can, despite the limitations. For the caregiver, it’s also important to remember that it’s okay to have those feelings of guilt and worry: that’s actually part of the job. It’s certainly not an easy one. Things are so different from 100 years ago when everyone lived next door.

–Steven Slon

Steven Slon is the Editorial Director for The Saturday Evening Post. This article was first posted at http://beclose.com/

The Challenge of Remote Caregiving The Saturday Evening Post

Marc Silver discovered this firsthand when his wife was diagnosed with breast cancer in 2001, and though he stood by her and eventually figured out how to be a good caregiver, he’s the first to admit he made plenty of mistakes along the way. After their ordeal (his wife is doing fine at present), he wrote an instruction manual to help other caregiving-challenged men. His book is called Breast Cancer Husband, How to Help Your Wife (And Yourself) Through Diagnosis, Treatment, and Beyond. I recently caught up with Marc to talk about his experiences and to find out what advice he has for other men.

Q:  Why do men need extra help when it comes to caregiving?

A: Caregiving is a role that a lot of guys are unfamiliar with, and particularly in the case of breast cancer, it is thrust upon them with no time for preparation. Personally I just remember feeling totally clueless and getting a few things completely wrong.

Q: For example?

A: Well, my wife Marsha called me immediately after her diagnosis. She’d just been told out of the blue that she had breast cancer. She was looking for some husbandly advice and solace, and my first reaction over the phone was, “Ew, that doesn’t sound good.”

Q: Uh, oh.

A: It gets worse [laughs.] We continued to talk a bit more, but only about logistics, when what she was needing at that point was sympathy and compassion. Then, at the end of the conversation I hung up, stayed at work all day, and didn’t come home until the usual hour.

Q: What did your wife say about that?

A: Marsha told me later, “I must have called the wrong husband.”

Q: In doing research for your book, did you find that your initial reaction—let’s be nice and describe it as missing her emotional cues—was a common one?

A: There are plenty of examples of men who ran straight home to be there for their wives when a cancer diagnosis was made. But yes, many men make mistakes like these, and I’ve heard of worse.

Q: Like what?

A: After a speaking engagement for my book, a couple came up to me and the husband told me that his reaction to his wife’s diagnosis was, “Well, you want to stop for dinner at Hooters?” I asked him if he was trying to be ironic or funny, but he insisted he was just thinking about a good place to get a meal.

Q: Sounds like men can’t cope initially and go into autopilot. Is this denial?

A: Yes, I think so. But it’s a very human reaction. One therapist I interviewed for the book said, “Nobody is sitting there saying, ‘Oh gosh, I hope I get to be a caregiver for a loved one who is diagnosed with cancer.’”

Q: So, guys shouldn’t beat themselves up too much about initial blundering?

A: No, they shouldn’t. That is very important. It is inevitable that you are going to do things that are going to tick your wife off or be not the kind of things she needs at that time. But you can learn from that. A lot of woman said to me that the motto for the husband is: “Shut up and listen.”

Q: Is there something inherently different about men that makes it harder for them to be good caregivers? Or, are men just not socialized to get it? Is it nature or nurture?

A: In my research I found a little bit of both. Men are simply not taught to tune in to others emotionally the way women are. On the nature side, doctors point to studies showing women have more of the hormone oxytocin, which promotes empathy.

Q: Still, it sounds like you’re saying, with some help, men can and do learn to be better caregivers.

A: Yes, absolutely. A big challenge is that men like to be problem-solvers. Instead, they need to learn that their role, as a caregiver, is to be an echo or a foil: Let her talk things through with you without interrupting to say, “here’s what you should do.” You’re not supposed to be in charge here. She is the boss.

Q: Does that make you the assistant?

A: Yes, exactly.

Q: Can you give an example of being supportive, without taking charge?

A: It is very common for a patient to be overwhelmed by all of the medical information. So, it’s important to join her at all medical appointments. Make lists of her questions for the doctors prior to each visit, and keep the list in front of you during the visit to make sure all of them get answered. Also, take good notes on these medical conversations so you can go over the details later.

Q: Your book title stresses helping your wife and yourself. How so? Isn’t that selfish?

A: Part of what you have to do as the caregiver is to be selfish sometimes. Whether it’s going out for a bike ride or watching a movie you like. You need time for yourself to recharge.

Q: So, if caregivers have a need to, say, go play golf or take a bike ride for a few hours, that’s ok?

A: Yes, but I would always ask my wife’s permission first. I interviewed Cokie Roberts for the book. She said when she was going through breast cancer, friends would call up and ask what could they do. And her first response was: “Play tennis with my husband.” It is certainly much harder to be the patient, but it is tough to be a caregiver too.

Steven Slon is the editorial director for The Saturday Evening Post. This column was first published by Beclose.com.

Helping Men Become Better Caregivers The Saturday Evening Post

While it is well known that caregivers in general are more prone to depression and physical illness than the rest of the population, few have looked into the particular challenges for those who do so from afar. One who has is Polly Mazanec, Ph.D., assistant professor at Case Western Reserve and an advanced practice nurse at University Hospitals Seidman Cancer Center. I spoke to Mazanec about her findings, which were published recently in Oncology Nursing Forum.

Q:  Looking at the differences between local caregivers and distance caregivers, what jumps out at you?

A: Long distance folks were significantly more anxious and the female caregivers in particular had higher depressive symptomatology. But what was most concerning, both groups had distress scores that exceeded the National Comprehensive Cancer Center guidelines for intervention.

Q: In other words, they ought to be getting help. Are they?

A: Local caregivers are getting help. Distance caregivers are not. In my work as an advance practice nurse in a comprehensive cancer center, there is a whole team to support the patient. There are multiple opportunities for care, including emotional and spiritual support. The team can also assist the family, both with practical matters and general guidance. With distance caregiving, families are left out in the cold.

Q: What are the greatest sources of stress for the distance caregiver?

A: The uncertainty and the guilt. Not knowing exactly how a patient is doing from day to day; wishing one could be there to provide more support; not knowing when or how often to visit. In many ways, that last one is the hardest question: if one can only afford to come visit for one week, when should that be? There’s the cost of travel, the commitment to a job, and the competing needs of one’s own family.

Q: In your article, you described a caregiver whose mother had advanced cancer. She waited until after the chemo to make her visit, but found her mother terribly debilitated and barely able to communicate. This individual was filled with regret, and wished she had gone earlier. When is the best time to pay that visit?

A: Just as when people ask, “Is my loved one dying?” we can’t answer that question exactly. But, we can help the caregiver decide on the timing. Some have a relationship where they would like best to be helping with the details, cleaning, administering medications, and so forth. Others would like to be there when the patient is feeling better so they can talk, do a “life review,” or spend time going to lunch and doing something fun. It really boils down to the need for improved communication both with the nursing and support team and among the family.

Q: Not all families are good at communication. It’s not too hard to imagine some parents responding: “If you were a good son or daughter, you wouldn’t come for a one-week visit. I’m dying and I want you to move out here for six months.”

A: Every family has issues. If a parent were to say something like that, it would almost be a gift. I would look at that as an opportunity to have a family meeting, even if it had to be by video conference. At the meeting, the support team would encourage the patient to talk about the anxiety that was causing the patient to wish for something that wasn’t possible. It’s essential to address those disruptive feelings before all that guilt is placed on the caregiver.

Q: Is distance caregiving ever an advantage?

A: It can be. For our study, one person said a parent who was normally uncomfortable with personal matters seemed able to speak more freely over the telephone. I also hear from some people that the distance allows the relationship with a parent not to be all about the illness; the discussion turns to grandchildren or the patient’s relationship with people in the community.

Q: In communicating long distance, what’s most important?

A: Being upfront, expressing your true wishes to be able to help as best you can, despite the limitations. For the caregiver, it’s also important to remember that it’s okay to have those feelings of guilt and worry: that’s actually part of the job. It’s certainly not an easy one. Things are so different from 100 years ago when everyone lived next door.

Steven Slon writes a regular column about aging and caregiving for Beclose.com. He is the editorial director for The Saturday Evening Post.

Distance Caregivers Aren’t Getting Help They Need The Saturday Evening Post

Such devices, also known as PERS (Personal Emergency Response Systems) certainly can work fine. There’s just one catch. The fallen one has to press a button to signal for help.  Sometimes, a fall can leave a person too disoriented to remember what to do. Other times, the very idea of asking for help is so disturbing

that he or she simply refuses to press the alarm. “People quickly learn that if you call for help, the EMTs arrive with a lot of noise and commotion,” says  Diane Mahoney, Ph.D., a professor of Nursing at Massachusetts General Hospital and an expert in sensor-based technology for caregiving. “It’s a bit of a stigma.

“We don’t have data on how frequently PERS-wearers choose not to signal for help when they need it,” she adds. “But there are plenty of examples of people lying on the floor all night until they’re discovered.”

Which brings us to Mildred Silver. Mildred is 91 and lives with her son Robert and daughter-in-law Alice in Los Angeles. She’s a bit on the frail side, having broken her ankle a year back. The ankle has been slow to mend, and Mildred uses a walker to get around. Because she’s alone much of the day while her son and his wife are working, her five children have convinced her to wear an “alert” monitor with a button to call for help if she needs it. The button is affixed to a pendant Mildred dutifully keeps around her neck at all times.

Unfortunately, though she’s fallen several times, she’s never actually pressed the button for help.

The first alarm-worthy incident in the Silver household took place a few years back—before Mildred moved in with Robert—and was related to me by her other son David. Back then, Mildred’s husband Sol was still alive, and they lived together in their own home. One morning, Sol slipped and fell outside as he was attempting to retrieve the mail. He pressed the button, but when the responder called their home, Mildred answered.

“Someone called for help,” the responder said.

“Don’t be ridiculous,” said Mildred. “We’re fine.”

“Could anyone else have signaled us?”

“No, my husband is right here. He just went out to get the mail,” she said.

The caller hung up. After a while, Mildred began to wonder what was taking Sol so long. She went outside and found him lying in the driveway. Friends would soon help him up and back into the house. (Note: names have been changed.)

Fast forward to last spring. Mildred is now a widow, and living with Robert. (David, who lives in San Francisco, frequently travels to LA to pitch in with caregiving duties.) David tells the story: “One day she is alone in the house. She is cold—she’s often cold indoors—and she decides to go outside for some sun.

“Slowly she works her way out front with her walker, navigating a step that, for her, is the equivalent of a 20-foot wall. After sitting for a while in the sun, she decides to go look at a rosebush we’d planted in the garden as a memorial to Dad. She loses her balance and falls backwards into the flower bed. She’s unharmed, but can’t move.”

This would be the perfect opportunity to use her PERS system. But Mildred does not do that. She simply remains in the garden, lying on her back.

It’s not long, no more than 20 minutes, David estimates, before a car miraculously pulls up into driveway: “Some guy steps out with a clipboard in his hand. He starts to walk toward the front door, and notices the bottom half of my mother sticking out of the flower bed.”

The man walks up to her and says, “Excuse me, I’m taking a survey and I wonder if you’d have a few minutes to answer some questions.”

Mildred, who’s hard of hearing, asks him to repeat himself, and finally gets his drift. She answers, “Young man, right now that would be hard, because I’ve fallen down. What you need to do is help me get back on my feet.”

Incredibly the man replies, “Would you mind first answering my questions?’

She tells him he’d certainly better help her up immediately or there will be trouble.

The man obediently puts his clipboard down and helps her up—following precise instructions on where and how he is permitted to touch her. They get her in front of her walker and together, they move slowly back to the house.

It’s slow going. It probably takes 10-15 minutes, David figures, to get her across the threshold and into a comfortable chair.

“By this point, Mom is exhausted,” says David. “But, incredibly, the man pulls out his clipboard and says, ‘Now, about those questions…’”

Mildred is not one to mince words. She invites him to am-scray.

When David and his siblings first learn what had happened, they are incredulous. For all the strangeness of the incident, everyone agrees the universe had been kind to Mildred that day.

But, still, why didn’t she just push the darn button?

–Steve Slon

Steve Slon is a writer specializing in health and aging. He is the former editor of AARP The Magazine.

OLDER version below:

Mildred Silver is 91 and lives with her son Robert and daughter-in-law Alice in Los Angeles. She’s a bit on the frail side, having broken her ankle a year back. The ankle has been slow to mend, and Mildred uses a walker to get around. Because she’s alone much of the day while her son and his wife are working, her five children have convinced her to wear one of those “alert” monitors with a button to call for help if she needs it. The button is affixed to a pendant Mildred dutifully keeps around her neck at all times.

Unfortunately, she won’t use it…

The necklaces made famous by those “Help, I’ve fallen and I can’t get up!”  TV advertisements back in the ‘80s can seem like a brilliant idea. So simple, so inexpensive. Here, at last, is a way for Mom or Dad to maintain independence as they become frail: a button on the device calls for emergency help 24/7. The unit is lightweight and always within reach. And the service can be had for as little as $30 per month.

Such devices, also known as PERS (Personal Emergency Response Systems) certainly can work fine. There’s just one catch. The fallen one has to press a button to signal for help.  Sometimes, a fall can leave a person too disoriented to remember what to do. Other times, the very idea of asking for help is so disturbing that he or she simply refuses to press the alarm. “People quickly learn that if you call for help, the EMTs arrive with a lot of noise and commotion,” says  Diane Mahoney, Ph.D., a professor of Nursing at Massachusetts General Hospital and an expert in sensor-based technology for caregiving. “It’s a bit of a stigma.

“We don’t have data on how frequently PERS-wearers choose not to signal for help when they need it,” she adds. “But there are plenty of examples of people lying on the floor all night until they’re discovered.”

The first “alarm” incident in the Silver household took place a few years back—before Mildred moved in with Robert—and was related to me by her son David. Back then, Mildred’s husband Sol was still alive, and they lived together in their own home. One morning, Sol slipped and fell outside as he was attempting to retrieve the mail. He pressed the button, but when the responder called their home, Mildred picked up.

“Someone called for help,” the responder said.

“Don’t be ridiculous,” said Mildred. “We’re fine.”

“Could anyone else have signaled us?”

“No, my husband is right here. He just went out to get the mail,” she said.

The caller hung up. After a while, Mildred began to wonder what was taking Sol so long. She went outside and found him lying in the driveway. Friends would soon help him up and back into the house. (Note: names have been changed.)

Fast forward to last spring. Mildred is now a widow, and living with Robert. (David, who lives in San Francisco frequently travels to LA to pitch in with caregiving duties.) David tells the story: “One day she is alone in the house. She is cold—she’s often cold indoors—and she decides to go outside for some sun.

“Slowly she works her way out front with her walker, navigating a step that, for her, is the equivalent of a 20-foot wall. After sitting for a while in the sun, she decides to go look at a rosebush we’d planted in the garden as a memorial to Dad. She loses her balance and falls backwards into the flower bed. She’s unharmed, but can’t move.

This would be the perfect opportunity to use her PERS system. But Mildred does not do that. She simply remains in the garden, lying on her back.

It’s not long, no more than 20 minutes, David estimates, before a car miraculously pulls up into driveway: “Some guy steps out with a clipboard in his hand. He starts to walk toward the front door, and notices the bottom half of my mother sticking out of the flower bed.”

The man walks up to her and says, “Excuse me, I’m taking a survey and I wonder if you’d have a few minutes to answer some questions.”

Mildred, who’s hard of hearing, asks him to repeat himself, and finally gets his drift. She answers, “Young man, right now that would be hard, because I’ve fallen down. What you need to do is help me get back on my feet.”

Incredibly the man replies, “Would you mind first answering my questions?’

She replies that he’d certainly better help her up immediately or there will be big trouble.

The man obediently puts his clipboard down and helps her up—following precise instructions on where and how he is permitted to touch her. They get her in front of her walker and together, they move slowly back to the house.

It’s slow going. It probably takes 10-15 minutes, David estimates, to get her across the threshold and into a comfortable chair.

“By this point, Mom is exhausted,” says David. “But, incredibly, the man pulls out his clipboard and says, ‘Now, about those questions…’”

Mildred is not one to mince words. She invites him to am-scray.

When David and his siblings first learn what had happened, they are incredulous. For all the strangeness of the incident, everyone agreed the universe had been kind to Mildred that day.

But, still, why didn’t she just push the darn button?

–Steven Slon is the editorial director for The Saturday Evening Post. This column was first published by Beclose.com.

Caregiving: The Trouble with Wearing An ‘Alert’ Bracelet The Saturday Evening Post

So, it comes as a surpise to find a cluster of new studies that seem to conclude caregiving is good for you. That’s right, instead of wearing you down, making you demented or depressed, good for you!

And, the good it does you is more than just the psychological kind. We’re talking benefits in strength, longevity, brainpower and more.

As it turns out, the author of the studies, Lisa Fredman, a professor of epidemiology at Boston University, was just as surprised when the results first started to come in: “It was a shocker,” she says, adding, “My first thought was, ‘This can’t be right!’ Like many before me, I subscribed to the idea that caregiving is bad for your health. But over time I kept finding essentially the same patterns.”

Fredman’s first study, conducted over eight years, showed that caregivers had lower mortality rates than non-caregivers. The next one focused on physical ability, and found that high-intensity caregivers demonstrated better walking pace, grip strength and speed of rising from a chair than lower intensity caregivers or non-caregivers. A third study was on memory and brain function. Once again, the caregivers performed well, demonstrating brain skills equivalent to those of people ten years younger.

Following is a conversation I had with Fredman about her work and its implications:

Q: You’ve said you were surprised by the results of your research. What was your original hypothesis going into this work?

A: My hypothesis was that caregivers were going to have poorer health outcomes then noncaregivers. And that remained my hypothesis for the first three grants that I wrote over eight or nine years. So I was pretty wedded to that.

Q: What changed your mind?

A: My initial results were that caregivers had lower rates of mortality than the noncaregivers. While they were much more stressed than the noncaregivers, they seemed to be doing better physically. The differences were dramatic. Mortality rates were 25 percent lower for caregivers. Functional decline such as walking speed, grip strength and chair-stand speed was lower for caregivers. Caregivers also maintained higher cognitive ability.

Q: What did the caregivers experience that might have contributed to these positive effects?

A: The physical activity probably has salutary effects. And there are psychological benefits as well. A lot of caregivers report they feel a great deal of gratification that they are able to care for their relatives and keep them out of a long term care facility.

Q: So, why do you think other studies have found such different outcomes?

A: Well, there is a key difference. We used an independent measure of stress, which previous studies had neglected to do. And so we are able to separate out the health effects of stress from the health effects of caregiving. We found that it is primarily the stressed caregivers who are experiencing negative health effects. So now I actually really believe in this hypothesis.

Q: What about the question of selection bias? Obviously you weren’t able to assign some individuals to caregiving roles and then assign others to be free of this responsibility and then compare the two groups. You had to pick those who had chosen to be caregivers and compare them to those who had chosen not to. Does that muddle the data at all?

A: I don’t think it’s a question of whether you have a choice. If you are healthy enough to take care of an older relative who needs assistance you become the caregiver. I wouldn’t consider it a selection bias, but there is a selection of healthier older people assuming the caregiving role.

Q: What about the political risk—or repercussion—of studies showing that caregiving may be healthy? To put it bluntly, is there a chance policy-makers will read too much into this and, say use your results to defund agencies that are helping the caregiver?

A: That is always our concern globally. The message here is that caregiving can be very stressful and stress can have very deleterious effect, not just on a person’s emotional well-being but their physical health as well. And what our studies seem to show is that it is really stress—not being a caregiver—which does a person harm. If anything, my studies support the call to fund more research.

Q: Stress is something that you can reduce by intentional effort. Based on your studies, would you tell someone who is a caregiver to more actively pursue stress-relieving activities?

A: I’m very interested in the effects that stress-relieving activities such as yoga have on caregivers and people in general. I’m excited that we now have the ability to look at physiological and brain effects of these stress reduction programs. Caregivers should try to find ways that work for them to reduce stress such as support groups, talking with a friend, yoga, swimming, running, reading etc. But it is not always realistic to simply advise a caregiver to pursue something like this.

Q: Why not?

A: Caregivers often have trouble finding free time. It can be very difficult for people in this role to stop and concentrate on themselves because they are often fully consumed with the wellbeing of the person that they are caring for.

Q: So how can caregivers find personal time to lower their own stress?

A: It really is important for others to offer respite to caregivers by taking on some of their responsibilities. For example, my sister is the main caregiver for my father. When I pitch in, I seem to spend the entire day doing errands—errands that can seem minor and not very helpful. But my sister assures me that it really helps her because it saves her a substantial amount of time. So it’s exactly those kinds of things—things that don’t seem like such a big deal—but really are, because they give the caregiver the gift of some free time.

(Steven Slon is editorial director for The Saturday Evening Post. This column was first published by Beclose.com)

Is Caregiving Good for You? The Saturday Evening Post

Of course, for many of us, in the eyes of our parents, the answer is: never.

Lana Maxwell is 52 and lives in Philadelphia. Her parents, Sam and Ethel, are both in their 80s, and live in New York City. (Names and identities have been changed for reasons of privacy.)

Sam and Ethel are both highly educated retired teachers, and, as far as they’re concerned, perfectly self-sufficient. Lana, on the other hand, has always been the baby of the family—someone who needed a lot of help. Her parents always took care of her when she was in a jam.

Old history, to Lana. But to her parents, the impression persists.

Caregiving for parents who live two hours away is a challenge. Combine this distance dilemma with aging parents who don’t have faith in you, and caregiving can become an exasperating battle.

It was six years ago, during one of her visits to New York, when Lana first observed that her parents were starting to grow feeble. But when she tried to offer to help, they would have none of it. She suggested extending her visit from a planned 10 days to 20. There were things to be done: the apartment was a mess; there were forms to fill out; medications to be purchased, and more.

Her parents told her to go home, but Lana held her ground.

It was only a few days later that Sam, a diabetic, suddenly became quite ill. He’d been chronically exhausted and irritable, but one night when Lana brought him dinner, he fell asleep while she was talking to him. She couldn’t wake him.

Frightened, Lana asked her mother, “What’s wrong? Has this ever happened before?”

“Oh just leave him. He’ll be fine,” Ethel replied.

“Who is his doctor?” Asked Lana. “I think dad is having a serious problem.”

Families aren’t always rational, as we well know. But Ethel, instead of being thankful for Lana’s concern, was infuriated. “I don’t want to hear that my husband is having some kind of episode. I take good care of him. Don’t you ever say that I don’t take good care of my husband,” she said to her daughter.

“She made it clear she didn’t want my help,” says Lana.

Lana dug in her heels. She pulled out her laptop and began searching for information online. It wasn’t long before she stumbled across a video on the website of a major drugstore chain detailing precisely the symptoms her father was having. Lana recalls, “I had just recently got a router working in their house so I was capable of bringing the laptop and putting it in my mother’s lap. I pushed the button and left the room and let her watch it on her own.”

It was clear from the video that her father, a diabetic, was having a severe hypoglycemic reaction due to overmedication: “At the end of the video, the narrator says, if you have these symptoms, call 911,” Lana recalls. “In fact, ‘911’ was flashing it huge red letters on the screen,”

Lana walked back into the room and declared: “We are going to the hospital now!”

That was the turning point. Ethel could no longer ignore her daughter’s pleas. At the hospital, Sam’s medication was adjusted. He spent a few days under observation, and then was discharged to his home. He and Ethel live there to this day.

Just as important, something changed in the way Sam and Ethel view their daughter—as someone they can rely on. While Lana still lives in Philadelphia, she visits more frequently and her visits are eagerly welcomed.

While the playing of the video—or more precisely the adult capability Lana demonstrated by being able to find good information about Sam’s condition online—may have changed the way her parents viewed her, Lana remembers the years of persistence it took to get to point where her parents accepted her as their caregiver:  “This is a long war for us, with campaigns of shutting down, campaigns of assertion to aggression; but it has always been a war of love!” says Lana.

(Steven Slon is editorial director for The Saturday Evening Post. This article was first published by Beclose.com)

Caregiving: How to Help When Help’s Not Wanted The Saturday Evening Post

Imagine having a robot around the house that can lift a frail elder if they fall when you are not around. Now visualize automated dresser drawers that can literally talk and guide a dementia patient through the complex—and often stressful—act of getting dressed in the morning. You are seeing what could very well be the future of caregiving.

Diane F. Mahoney, PhD, Professor of Geriatric Nursing Research at MGH Institute and her team were among the first to study wireless monitoring technologies for caregiving. Frustrated with so-called “alert” bracelets  that patients frequently fail to activate, she became interested in high-tech devices that not only monitor patients in the home, but can provide an assist to the harried caregiver. Mahoney’s research is at the bleeding edge of caregiving technology. I spoke with her recently to find out what’s coming next.

Q: Robots in the home? What sparked this concept?

A: I got the idea when I heard that people are falling and not getting up, and they are not pushing the alert button on their alert bracelet or calling for an ambulance. I thought, wouldn’t it be nice if we had some kind of personal lifting device for elders?

Q: Is it feasible?

A: The concept already exists. The military has some neat robotic devices that they use to go into the battlefield and lift downed soldiers and remove them under fire. So I wound up getting involved as a consultant to a couple of robotic companies that are indeed working on devices that can move and lift a person. I am helping companies to develop a product for in-home use, for a future version when the technology becomes affordable.

Q: So, robots in the house? I guess, to appeal to baby boomers, you just put a BMW label on the thing.

A: [Laughs] Right!  I’m a baby-boomer and, I’ll tell you, 20 years from now, I’d like a little robot running around the house.

Q: Yes definitely, me too. So, will we start seeing robots soon?

A: iRobot already has the Roomba, a robotic vacuum device, and they are very entrepreneurial. There are also other companies around that are working on components of robotics for in-home use. So in the near future they could merge together, combine developments, and solve potential safety issues. I’m sure these companies will be able to overcome the technology challenges in the next decade. And wouldn’t that just be great?

Q: A lot of your work has focused not just on the patient, but on the caregiver’s need for respite, for just a small break during their 24-hour workday. Can you tell us a little about that?

A: After years spent listening to Alzheimer’s caregivers talk about their needs, one of the themes that kept coming up was, “if only I had 10 minutes to myself, if I could just breathe or go to the restroom without my husband or wife banging on the door!” So I designed an automated telephone call; I called it a respite call. To make it effective, we interviewed the caregiver for their patient’s favorite hobbies, foods, smells, songs, and so forth. The phone call was all computerized, and the caregiver could call in anytime and put their patient on the phone—even at two in the morning when they were being driven crazy. And by calling in and putting in the password the conversation would come up and the voice on the phone would say, “Oh, hello Harry. Oh, it’s so nice to talk with you now. You know, I understand you really like brownies…” And of course, for someone else, it could be chocolate candy.

Q: Would this keep them busy for the magic 10 minutes?

A: Actually I designed it to be 28 minutes long and it was able to repeat once. So we put it out there; I had no idea if this would work or not. Many people don’t let their person with dementia use the phone anymore. But others tried it and it gave people more than their 10-minute break. They got a 28-minute break. Some of them went around twice, for a total of 56 minutes.

Q: I bet caregivers were pleased with that.

A: Yes. One caregiver said to me, “The day is very long. And I need a tool box. And in my tool box I need a whole bunch of things to keep him occupied. This is a very important tool in the box.”

Q: What other tools have you developed?

A: I’m starting another project with a colleague who has been using motion sensor technology for children with autism. We just got funded a few months ago by the Alzheimer’s Association to build what I call DRESS – Development of a Responsive Emotive Sensing System—to help people with dementia get to a state of rest. The project grew out of our observation that, for people with dementia, getting dressed is often a trigger activity for becoming extremely upset. The person gets in the drawer and rummages and gets stuck and keeps on rummaging.

Q: What is the solution?

A: For the prototype we are going to put iPhones on each drawer. So if they get stuck in one drawer too long, the iPhone on the next drawer they should go to will turn green and flash, and if they open it, fine. If they don’t open it, the phone will speak, and actually say “Open this next.” It will continue with verbal cues until they perform the requested activity.

Q: This is not just to help them get dressed, right? Again, this is partly about caregiver respite.

A: Yes, even if we can’t get them fully dressed, the caregiver can use this as a safe activity. We might be able to convert what would have been an annoyance into a distracting respite activity for 20 or 30 minutes. Worst case, the caregiver gets a break; best case, the person actually gets dressed alone.

Q:  Either way, sounds like a victory.

A: Certainly! The respite part is central. Caregivers themselves are often so focused on their loved ones that they often don’t take the time to take care of themselves. I’m in this field because I really appreciate the role caregivers play. They make such a vital contribution that sometimes I don’t think our society fully appreciates.

Steve Slon is the editorial director for The Saturday Evening Post. This article was originally published by Beclose.com

“Help, Robot! I’ve fallen and I Need You to Pick Me Up” The Saturday Evening Post