The Holidays and Alzheimer's

Republished from: https://alz.org/help-support/resources/holidays

The holidays are a time when family and friends often come together. But for families living with Alzheimer's and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.

Check in with the person with dementia

In the early stage, a person with Alzheimer’s may experience minor changes. Some may withdraw and be less comfortable socializing while others may relish seeing family and friends as before. The key is to check in with each other and discuss options. A simple “How are you doing” or “How are you coping with everything?” may be appreciated. Plan the holidays together, focusing on the things that bring happiness and letting go of activities that seem overwhelming or stressful.

For people in the middle or late stages, consider rethinking holiday plans. Everyone is unique and finding a plan that works can involve trial and error.

Familiarize others with the situation

The holidays are full of emotions, so it can help to let guests know what to expect before they arrive. If the person is in the early stages of Alzheimer's, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself. Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts. If the person is in the middle or late stages of Alzheimer's, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

1.  "I'm writing to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
2. "You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
3. "I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
4. "Please understand that ___ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do we."
5. "Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know."
6. "We would ask that you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory that we’ll all treasure."

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.

Adjust expectations

The stress of caregiving responsibilities layered with holiday traditions can take a toll. Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do. No one should expect you to maintain every holiday tradition or event.

Be good to yourself. Give yourself permission to do only what you can reasonably manage. If you've always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer's and yourself from getting overtired.

Do a variation on a theme. If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.

Involve the person with dementia

Build on past traditions and memories. Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs, watching favorite holiday movies, or looking through old photo albums.

Involve the person in holiday preparation. As the person's abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)

Maintain a normal routine. Sticking to the person's normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.

Adapt gift giving

Encourage safe and useful gifts for the person with dementia. Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert®+ Alzheimer's Association Safe Return®), comfortable clothing, favorite foods and photo albums.

Put respite care on your wish list. If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.

When the person lives in a care facility

A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:

1.      Consider joining your loved one in any facility-planned holiday activities
2.      Bring a favorite holiday food to share
3.      Sing holiday songs and ask if other residents can join in
4.      Read a favorite holiday story or poem out loud

Aging Care LLC Chosen for 2018 Best of Glastonbury Award

The Importance of Medical Touch

Republished from: https://www.nytimes.com/2018/10/08/well/live/the-importance-of-medical-touch.html

It can show gentleness and compassion or carelessness and incompetence.

By Caitlin Kelly
Oct. 8, 2018

It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.

Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.

I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.

The following weeks gave me a diagnosis with a 98 percent survival rate: ductal carcinoma in situ, a condition that is not even considered a cancer by some. The diagnosis began a disorienting parade of more unfamiliar people touching my body, from routine blood drawing to a transvaginal probe (to determine my baseline uterine condition because estrogen inhibiting drugs can cause uterine cancer), to injecting a tiny electromagnetic wave device into my breast to guide the surgeon to the tumor’s exact location.

At midlife — apart from four orthopedic surgeries, three of them minor — I’ve been healthy, so my body had never before been so intimately and medically handled. Having someone puncture your breast isn’t quite like getting a cortisone knee injection.

Some of the procedures, some done with a local anesthetic, were uncomfortable, some downright painful. The thoughtfulness with which I was touched — all at suburban New York hospitals — made a real difference in my ability to stay calm and lie still as needed. My anxiety, even as a middle-aged adult, wasn’t just an annoyance to be ignored or dismissed.

And, as someone from a family that shows little physical affection, it was also surprising, pleasantly so, to be hugged by my surgeon when she delivered good post-op news and by a phlebotomist whose technique drawing my blood without the usual tourniquet was so deft I felt nothing.

Touch during medical procedures can be soothing or traumatizing. It can be gently and compassionately administered; alternatively, it can be roughly, carelessly or even, at worst, incompetently handled.

“Many patients feel that being touched is important to getting better,” said the historian Paul Stepansky, author of “In the Hands of Doctors: Touch and Trust in Medical Care.” His father was a small-town general practitioner in Pennsylvania, and Mr. Stepansky saw firsthand the effect of those personal relationships. “Medicine then was all about touching, and patients welcomed their touch,” he said. “It was integral to doctoring, and partly because physicians were part of the community, medicine was about the laying on of hands.”

Now, in an era of electronic medical records, when physicians can spend most of an appointment staring into a computer screen, physical connection between doctor and patient may prove even more important. “Touch promotes trust,” says Mr. Stepansky, “not just talking or ordering studies.”

Others have passionately argued the case, like Dr. Abraham Verghese’s push for more human touch in medicine. Dr. Verghese is a professor at the School of Medicine at Stanford University. His 2011 TED Talk in Edinburgh urged the audience to rethink clinical medical practice: “When we shorten the physical exam, we’re losing a ritual that I believe is transformative, transcendent and at the heart of the physician patient relationship.”

A physician’s role, he said in his talk, is “to touch, comfort, diagnose and bring about treatment.”

Patients with a chronic illness may spend decades, literally, in dozens of medical hands. Natasha Walsh, a political consultant in Alexandria, Va., who has Crohn’s disease, said she has experienced care both comforting and cold.

“I know there are patients who bristle at being ‘manhandled’ or poked and prodded, and after being sick for 20 years, that doesn’t bother me at all,” she said. “I have doctors who I’ve had a long relationship with who I feel comfortable enough to hug or be otherwise chummy with, so in those cases I absolutely feel comforted by their touch, just as I would a friend’s.”

Once, in the intensive care unit at Washington Hospital Center, “after a bowel resection gone horribly wrong, I’d gone completely septic and I had been in a medical coma for about a week and woke up and had no muscle tone at all,” Ms. Walsh recalled. “I could barely roll over. So one of the male nurses would wheel my gurney to the CT scan or M.R.I. rooms and had to physically pick me up and roll me into position, and I remember thinking how overwhelmed with gratitude I was for his strength and how gently he handled me.”

Yet she gave up on another local physician, a GI specialist, “because he never once physically examined me. He was almost too clinical.”

Part of patients’ challenge is not knowing how every physician, nurse and medical technician will treat them, even as we’re in pain and already anxious, feeling vulnerable. And survivors of sexual abuse or assault can cringe at the lightest of touch.

“It should be a two-way conversation about what you’re comfortable with,” said Susan Finlayson, a registered nurse and senior vice president of operations for Mercy Medical Center, a 178-bed university-affiliated Catholic hospital, founded by the Sisters of Mercy, in Baltimore.

Ms. Finlayson knows their local population well, one that is poor and underserved, and trains staff members to treat them with dignity. “When nurses come in here to work, we talk a lot about our values — treating the mind, body and soul,” she said. “Patients arrive because something very tough is happening in their life, so from day one we make sure that every new group we orient here understands that and offers them patient-centered care.”

While patients need and deserve gentle, thoughtful treatment, “health care is evolving, and gotten more businesslike,” she said. “We’re pressured to do more and more and to give better value at lower cost. It’s easy to get caught in that to-do list. It’s easy for staff to get burned out.”

As patients also navigate the additional obstacles of who accepts their medical insurance, they can end up being treated less than ideally. Can they expect consistently kind and compassionate care wherever they end up? “In theory, yes,” said Ms. Finlayson. “In practice, no. There’s so much variation in hospital culture, administration and leadership.”

Every patient needs a strong advocate to make sure to be touched and handled with kindness and competence, said Mickey Osterreicher, a Buffalo lawyer whose medical journey began in 2011 with a diagnosis of prostate cancer but later included the removal of a malignant melanoma and its metastasis to his brain. A life-threatening drug reaction required even more interventions.

Along the way, he lost 40 pounds of muscle, making it more difficult for nurses to draw his blood — “the one thing I’d always taken for granted as being easy,” he said. “But some people are really good at it and I didn’t feel a thing, and other times it really hurt and left me bruised.”

He wasn’t afraid to challenge his physicians, noting that some people are intimidated to do so if they feel their treatment is too rough. “Certainly as a patient you have every right to speak up. Certainly, some doctors weren’t happy when I did and bridled at criticism.”

While still facing quarterly M.R.I. and PET scans, he is healthy today. His best advice for getting the kindest care possible?

“Have a family member who can be diplomatic.”

Caitlin Kelly (@CaitlinKellyNYC), is a freelance writer in Tarrytown, N.Y., and a frequent contributor to The Times.

When Family Members Care for Aging Parents

Republished from: https://www.nytimes.com/2018/09/19/well/live/when-family-members-care-for-aging-parents.html

By Sandeep Jauhar

Sept. 19, 2018

My siblings and I joined the ranks of the 15 million or so unpaid and untrained family caregivers for older adults in the United States.

I hadn’t realized how quickly my father’s mind was fading until one morning a few years ago when he asked me why he was taking only six medications per day. “What will I take on the seventh day?” he wanted to know.

My mother, who had been given a diagnosis of Parkinson’s disease, had been in decline for some time and could be of limited help. Anti-Parkinson’s medications helped to relieve her muscle rigidity, but her condition had continued to worsen.

So we pressed my father to retire his professorship so that the two of them could move from Fargo, N.D., to Long Island to live closer to me and my brother. When my parents arrived, it was alarming how much their conditions had deteriorated.

My father was forgetful; my mother required assistance with walking. The friend who helped them move took me aside after they arrived. “They have to have hope,” she said.

“Hope for what?” I asked.

“That one day they will be able to do the things they can’t right now.”

We wanted our parents to live independently in their own home, which meant that my siblings and I were going to have to chip in to help. It was a small price to pay, we thought. When my sister visited from Minneapolis, she bathed and dressed my mother. I administered their medications and helped with groceries. My brother took care of household issues. Still, my parents’ home, like my parents themselves, was in a constant state of disrepair.

That summer, my siblings and I joined the ranks of the 15 million or so unpaid and untrained family caregivers for older adults in this country. A recent study found that almost half of this largely invisible work force spends, on average, nearly 30 hours a week providing care to relatives, many of whom have dementia, an estimated more than $400 billion worth of annual unpaid time.

The work takes its toll. These sons, daughters, husbands and wives are at increased risk of developing depression, as well as physical and financial difficulties, including loss of job productivity. Being sick and elderly in this country can be terrifying. Having a sick and elderly loved one is often a full-time job.

As the workload increased, we hired help, as much for ourselves as for our parents. But after some items were stolen, we realized we had to be more careful about whom we allowed into our parents’ home. Older adults in this country lose almost $3 billion a year to theft and financial fraud. Nearly every week my father instructed us to donate money to someone who had sent him a generic email appeal. It fell on us to keep our parents from being exploited.

With millions of elderly adults requiring assistance with daily living, physicians should make it routine practice to ask family members whether they can provide the requisite care. Many of these potential caregivers, ill or stressed themselves, simply cannot.

Insurers should also set aside funds to support these caregivers. Family members are often the people most invested in the care of their loved ones. Supporting them will only benefit our most vulnerable citizens. It won’t be cheap, of course. Because of the size of this unpaid family work force, even providing minimum wage to the most taxed caregivers could cost up to $100 billion annually.

In 2015, Andrew Cuomo, governor of New York, announced a $67.5 million grant to help ease the burden of informal caregivers of dementia patients in the state. The money pays for counseling, support groups and a 24-hour hotline. It also subsidizes the hiring of friends and neighbors at $15 an hour so that family members can enjoy occasional respite from the strain of caregiving. Several other states, including North Carolina, North Dakota, Minnesota and Vermont, have similar programs but on a much smaller scale. Much more needs to be done nationally.

Though our parents’ independent living required a steadily increasing commitment, there was no dearth of moments to remind us that it was worth it. I once called my father to tell him I was going to stop by the house later to talk about a change in one of her medications that her doctor had suggested.

When we ended the conversation, he forgot to hang up the phone. I heard him turn on the TV, which was playing a popular Hindi film song.

“Will you listen to some music with me?” he asked my mother. She did not reply. “Come on, hold my hand,” he said.

“No one has any use for me,” I heard my mother say.

“I do,” my father said. “The kids do. Here, hold my hand and dance with me.”

Sandeep Jauhar (@sjauhar), a cardiologist, is the author of “Intern,” “Doctored” and the newly released “Heart: A History.”

I Had Alzheimer’s. But I Wasn’t Ready to Retire.

https://www.nytimes.com/2018/09/07/opinion/early-onset-alzheimers-work.html

By Wendy Mitchell
Ms. Mitchell is the author of a memoir about dementia.
Sept. 7, 2018

“How long have you got?”

This is what my boss asked me when I informed him, in July 2014, that I had early-onset Alzheimer’s.

I had a file an inch thick with suggestions for how I would be able to keep my job as an administrator with the British National Health Service, one I had loved for more than 20 years. Whether out of panic or ignorance, my manager didn’t see it that way. A date for my early retirement was inked into his calendar; I would leave eight months later due to “ill health.”

I was 58 when I learned I had early-onset Alzheimer’s. For two years, I had been experiencing short-term memory loss. I sometimes had difficulty finding the simplest of words — I once forgot the word “and” in a meeting — and I’d been struggling to concentrate. While the diagnosis made sense to me, it was devastating.

Still, I hadn’t expected it would sound a death knell for my employment. I had new challenges, but I was still a capable employee who brought, I believed, a lot to the table. Besides, I worked for a health system that prided itself on understanding a patient’s needs. But here it was forgetting to extend the same compassion to an employee.

People are living and working longer than ever, and that means the incidence of people in the workplace with early-onset dementia will increase. In Britain, more than 40,000 people under the age of 65 have dementia. In the United States, there are an estimated 200,000 with early-onset Alzheimer’s.

Employers can’t just write them off. Loyal employees are a valuable resource. They’ve been trained (presumably at the expense of their employer) and have probably, in turn, trained others. They have a valuable understanding of their jobs. Employers need to realize that knowledge doesn’t just disappear overnight; this is a progressive, and often slow-moving, disease. I was still the same person I was the day before I received my diagnosis. I just needed to tackle my job — and my life — in a different way.

In the time I was given to stay on at work, I made adaptations. It turned out that my colleagues were much more understanding than management. They took the time to think and talk to me about what support I needed from them to keep going.

We got creative: They created a color-coded Post-it note system, with each color denoting a different team member, to help me remember whom to get back to on which project. They also knew to email me questions instead of popping their head into my office and expecting an immediate answer.

When I worked from home, the team would contact me only at prearranged times so I would know when I’d be interrupted. I’d set an alarm five minutes before that time, which alerted me to finish any task I was working on and prepare for the incoming call. When I was no longer able to recognize voices on the phone, email still served us well. Or they waited for me to be in the office; face to face and one at a time, I could manage things better.

I recently read about one woman’s happier experience with her employer, the British supermarket chain Sainsbury’s. As her dementia took hold, her managers worked with her, cutting her hours and duties where appropriate. They realized that she still had a contribution to make, even though it might have been a dwindling one. Her son praised the company on Twitter, writing that his mother’s “sense of self-worth and pride has undeniably helped with aspects of her Alzheimer’s.”

I no longer work for the National Health Service, but I still have time and energy to spare. I now work with several dementia charities and support organizations, and regularly speak about my experience with Alzheimer’s disease to audiences of doctors, nurses and caregivers. I try to communicate all that we patients still have to contribute to society. It feels good to have my opinions valued and my story heard. It has lifted my spirits, and I believe my packed schedule keeps the disease at bay.

I look back sometimes and wonder how things could have been different if my manager had really talked to me, if he had leaned across his desk and said, “Wendy, you have always been an asset to my department; now it’s my turn to help you.” How much longer might I have been able to keep working? What else might I have gone on to achieve?

Had I been given a chance, my response to “How much time have you got?” would have been, “I’ve got as much time as you will give me.”

Wendy Mitchell is the author of the memoir “Somebody I Used to Know.”

To Manage Dementia Well, Start With The Caregivers

Republished from:  https://www.npr.org/sections/health-shots/2018/09/15/647992785/to-manage-dementia-well-start-with-the-caregivers

Lauren Gravitz
September 15, 2018

When Kate Sieloff's husband, Karl, began acting strange, she didn't know where to turn. Her hard-working, affectionate spouse was suddenly having fits of anger and aggression. He stopped paying the bills. Karl, 56 at the time, was an engineer at General Motors, where he'd worked for more than 40 years. But some days he didn't even show up for work, finding it too hard to get out of bed.

Because the problems were sporadic, most people in her life couldn't see what was going on. They told Kate, of Romeo, Mich., that she was imagining things. Doctors suggested that Karl was depressed and tried him on a variety of medications. When he began depleting their savings on impulsive purchases, and grew even more aggressive and violent, her son—a neurologist at the University of Michigan's medical center in Ann Arbor—insisted she bring Karl to his hospital for evaluation. Doctors there quickly diagnosed him with frontotemporal dementia.

For Kate, the diagnosis was a relief, but she still felt overwhelmed and needed help coping with her husband's illness. Getting his diabetes medications under control, and starting him on a mood stabilizer and a new antidepressant helped control his mood swings while restoring some of his loving personality.

But there is no drug that can prevent or stop the eventual progression of dementia. What she needed was something that could help make her day-to-day caregiving more tolerable, and strategies to help him when the confusion set in.

Things changed when she and Karl went to see Helen Kales and her team at the Program for Positive Aging.

Kales, a geriatric  psychiatrist who practices at the University of Michigan, in Ann Arbor, has developed a behavioral approach to dementia care, one that puts the caregiver first and emphasizes training and support for them as much as for the patient. By teaching caregivers new ways to solve old problems, and to respond to their own needs in as well as those of their loved ones, the approach helps ease their burden while simultaneously improving the patient's experience. It's a bit like airplane safety rules directing passengers to put on their own oxygen masks before helping someone else.

One of the most important aspects of caring for someone with Alzheimer's and other dementias is understanding the diseases. The difficulty, Kales explains, isn't the memory loss, per se, but the behaviors that accompany it — everything from anger to petulance to violence to depression.

"We think about dementia as a problem with memory, but it's really behavioral," says Kales. "If you look at the medications being used, they're all psychiatric and used to managed behavior: antipsychotics, antidepressants, and sleep medication. Anxiety medication. We even use mood stabilizers."

Yet despite the millions of dollars spent on these drugs, she says, study after study has shown that their efficacy in treating dementia is typically quite small.

Rather, research suggests that it's far better to use behavioral and environmental approaches — ones that are sensitive to, and focus on, the needs of a patient, Kales says. "Particularly when you train family caregivers to deliver them in the home."

As more people survive into their 80s and 90s, there are more people living with Alzheimer's and other dementias than ever before. And the burden is one that primary-care physicians can't handle alone.

"We realized we needed to do something different," Kales says. "We just can't train enough physicians to provide dementia care. Instead, we need to take the daily treatment and management of these patients out of the hands of physicians and put it into the hands of the caregivers themselves."

It's an important move. Researchers have shown that the majority of people with dementia are cared for at home by members of their family. And that those family members, in turn, have higher incidence of stress and depression, as well as lower overall quality of life.

"The trick seems to be in training family caregivers to spot triggers of behavior and problem-solve around those triggers, to look for underlying causes and then creatively develop strategies," Kales says. But such approaches are rarely employed because there's no systematic way to teach people how to use them.

That's where Kales' DICE approach comes in. The method — an acronym representing the four main steps of the process — trains those who look after people with dementia to thoughtfully address behavioral issues. Those steps are: Describe a behavior, thinking about what happens and the context in which it occurs; Investigate its possible causes; Create and implement a plan to address the behavior; and evaluate the results to determine what worked.

No one had ever provided family caregivers with such a user-friendly method before, says Katie Brandt, the director of Caregiver Support Services for the Frontotemporal Disorders Unit at Massachusetts General Hospital, in Boston.

"[Kales] took theories about dementia care and behavior management and turned it into a step by step approach that people can apply," she says.

Here's how it can play out. Ideally, instead of giving someone a Valium because they're particularly cantankerous, caregivers would look deeper, analyzing the behavior to figure out why it's occurring. This can take extra effort when dealing with a patient who can't communicate in a linear way, or at all, about their experience. In this and other ways, it's not unlike caring for an infant.

As an example, Kales points to one of her patients, who came into the clinic with his daughter. The daughter mentioned that her dad had been extra ornery that morning, swatting at her as she tried to get him into the car. A physical exam showed that he was experiencing pain in one of his arms, so Kales sent him for an X-ray, which revealed a torn rotator cuff.

"Someone could cover that over with a medication, sedate the gentleman, and he'd continue to have the painful, pathological condition that requires treatment," she says.

Often, caregivers are given list after list of things they could do to make a house safer or a day of caretaking go more smoothly. But, Kales says, "None of those approaches are really effective for all people. The solution is really in the tailoring of the approach to the symptom, the situation, the caregiver."

Kales's clinic has had success teaching DICE to their caregivers. And for Sieloff, the difference has been life-changing. She's learned to better understand her husband's dementia, to help him stay calm and feel in control, and to create solutions for some of his more irascible moments.

With the program's help, she has taken control of her finances, applied for different kinds of assistance, and come up with practical ways to help Karl: a daily routine with limited choices; activities, such gardening, that hew to his interests; and small cards that say, "Please understand my husband has dementia," which she can hand strangers to de-escalate moments when his anger gets out of control.

Beyond that, working with people in the program has helped her own state of mind. Before her husband's diagnosis, family members and even some therapists had blamed her for Karl's problems, or believed she was making them up. "I needed to be absolved," she says. "For the longest time, people told me it was my fault and I felt so much guilt. I wasn't sleeping at night. Now I'm sleeping well."

The University of Michigan team hopes to make such help universally available. They're creating publications and online tools to help those outside their clinic, and just published the first pilot study of a web-based DICE tool called WeCareAdvisor. For the study, caregivers answered a series of questions online and the tool selected from nearly 1,000 strategies to create a behavioral "prescription" for them to try. If the new strategies didn't help, they ran through the process again, testing new approaches. They also received an informational resource on dementia and daily messages of encouragement and motivation. At the end of the month-long trial, caregiver distress had decreased significantly.

Brandt has seen similar results teaching DICE in the Boston area. "We know that care-giving is a threat to your health," Brandt says. "And caregiver stress not only impacts the quality of life of the caregiver, but also impacts the quality of life and quality of care of the person living with dementia."

After coaching caregivers in her clinic, she says that it appears to reduce stress, while helping them feel confident and more prepared for the challenges that pop up. Massachusetts General Hospital is now looking to adapt Kales WeCareAdvisor, which was developed primarily with caregivers of Alzheimer's patients in mind, for use in frontotemporal dementia.

Kales says that a printed DICE manual should be available for sale at the end of October and an interactive website—which will contain video modules and e-simulation trainings—at the end of November.

As far as Seiloff is concerned, the sooner the better. "I can't imagine where I would be without the DICE clinic," she says. "It's given me a whole new life. I'm trying to tell everyone I know about this."

Lauren Gravitz is a science writer and editor. Her work has appeared in Nature, The Economist, Aeon, Discover, The Oprah Magazine, and more. Find her at www.laurengravitz.com and @lyrebard.com

The Long-Term-Care Insurance Dilemma

Premiums keep rising, but you may need a policy more than ever.

By KIMBERLY LANKFORD
Contributing Editor
April 4, 2018
From Kiplinger's Personal Finance

One of the most effective ways to protect your retirement savings from the high price of assisted living, in-home care or a stay in a nursing home is a long-term-care insurance policy. But recent premium hikes have many baby boomers worried that coverage is no longer affordable.

The median cost of one year in a private room in a nursing home was $97,500 in 2017, according to Genworth's Cost of Care Study. A year of assisted living was $45,000, and 44 hours per week of home care–which most people prefer–came to $49,000. Care costs have been going up by 3% to 4% per year over the past five years.

Those rising costs have put pressure on long-term-care insurers. Rates have spiked by at least 50% for most policies purchased between the mid 1970s and 2005, with some price hikes topping 100%. Almost every long-term-care insurer has raised rates at least once, and more rate increases are on the horizon, depending on the insurer and the state.

Policies with lifetime benefits and 5% inflation protection have been hit the hardest. For example, Mike Ashley of Prairie Village, Kan., purchased a Genworth policy 19 years ago, when he was 52 years old. He paid $879 per year for a policy with a $70 daily benefit, 5% inflation protection and lifetime benefits. After two rounds of rate increases, his premiums had climbed to $1,547 per year.

Insurers admit they made major mistakes when pricing these policies. They expected more people to drop coverage, overestimated the interest rates they'd earn on their investments, and underestimated the size and length of claims.

What to do. Fortunately, there are ways to make long-term-care insurance more affordable. Don't drop your policy if you're faced with an increase; new coverage will cost a lot more. Although Ashley's annual premiums increased by more than 75%, he's 19 years older and his daily benefit has grown by 5% a year. A new policy for a 71-year-old with similar features and coverage would cost at least $9,000 a year. If you can't afford the higher premiums, your insurer will generally give you several options. For example, you may be able to minimize the rate increase if you cut future inflation protection from 5% to 2.5% or 3%, says Claude Thau, an insurance consultant in Overland Park, Kan.

If you haven't bought a policy yet, you can still find coverage that protects a big portion of your retirement savings while keeping the premiums affordable. One option is to figure out how much longterm care your retirement savings and income will cover and use insurance to fill the gap.

You can trim the premiums not only by buying a policy with less inflation protection but also by selecting a shorter benefit period. For example, Ashley cut his premiums to $1,384 by reducing his lifetime benefit period to a six-year period. A 55-year-old couple could pay less than $3,500 per year (combined) to buy a new pair of policies that provide each spouse with a $150 daily benefit, 3% inflation protection and a three-year benefit period (couples buying together get a significant discount).

Insurers have learned from their pricing mistakes and shouldn't have to increase premiums on new policies as much in the future. Still, you should factor in potential increases when calculating how much insurance you can afford. John Ryan, of Ryan Insurance Strategy Consultants in Greenwood Village, Colo., recommends planning for a 20% increase every 10 years.

Seniors Healthier When Medical Care Is Coordinated

Reprinted from: bit.ly/2ogyMb6 and bit.ly/2odAjP9 CMAJ, online August 27, 2018.

By Linda Carroll

(Reuters Health) - As America’s population ages, experts are exploring how best to keep older people with multiple chronic illnesses healthy. A new study suggests that coordination between physicians may be key.

In a reanalysis of 25 earlier studies including 12,579 patients, researchers found that coordination of care for older adults with multiple medical conditions resulted in improved health. Patients in the study had combinations of disorders such as heart failure and obstructive lung disease, arthritis and depression, diabetes and depression, or diabetes and cardiovascular disease.

Currently more than 62 percent of older Americans have multiple chronic conditions, the researchers noted in CMAJ. And many of those seniors receive care from a variety of specialists who don’t communicate with one another.

“To address the challenges faced by our rapidly aging population, we need to focus on a more patient-oriented and holistic strategy that targets management of patients with common disease combinations, such as diabetes and depression, rather than treating one disease at a time,” said study leader Monika Kastner, a health services researcher at the University of Toronto, Canada, and research chair at North York General Hospital.

Care coordination, Kastner explained in an email, can be defined as efforts by health care professionals to facilitate and coordinate appropriate, timely and efficient delivery of health care services for a patient.

The average age in the studies was 67. One area where coordination made a big difference was in patients who had a chronic physical condition along with depression. For example, patients with both depression and diabetes had improvements in both depressive symptoms and blood sugar levels when they got coordinated care.

The new article “takes us in the right direction,” said Michael Wolf, associate vice chair of research in the department of medicine at Northwestern University’s Feinberg School of Medicine in Chicago.

Wolf has personal experience with a problem that’s common when care is fragmented: the possibility that doctors will provide a patient with overlapping medications.

“My sister at one point was on 24 medications,” he said in a phone interview. “It wasn’t till she was hospitalized that a surgeon pointed out that she was taking multiple medications to treat the same thing. They had been prescribed by different people. When she left the hospital, the number had been reduced to six or seven.”

Presently, however, there is no template to show health care providers how to accomplish coordinated care with the system set up the way it is, Wolf pointed out.

There are a number of reasons why patients rarely get coordinated care, said Dr. Alicia Arbaje, director of translational care research in the division of geriatric medicine and gerontology at Johns Hopkins University in Baltimore, Maryland.

Top on the list is the way practitioners are reimbursed, Arbaje said by phone. And beyond that, “we haven’t caught up in our training of physicians to learn how to work with other providers or even as a team,” she added. “Also, we don’t have a culture of accountability. In the culture we have, once a patient is out of the hospital, that patient is now someone else’s responsibility. And the same is true outside the hospital.”

Patients often assume that their doctors are all on the same page, Arbaje said. “I think some levers could get moved if there was some outrage from the public,” she added. “People asking why isn’t care done this way.”

Take a Look at These Unusual Strategies for Fighting Dementia

Reprinted from: https://www.nytimes.com/2018/08/22/world/europe/dementia-care-treatment-symptoms-signs.html

NETHERLANDS DISPATCH
By Christopher F. Schuetze

Aug. 22, 2018

DOETINCHEM, Netherlands — “We’re lost,” said Truus Ooms, 81, to her friend Annie Arendsen, 83, as they rode a city bus together.

“As the driver, you should really know where we are,” Ms. Arendsen told Rudi ten Brink, 63, who sat at the wheel of the bus.

But she was joking.

The three are dementia patients at a care facility in the eastern Netherlands. Their bus ride — a route on the flat, tree-lined country roads of the Dutch countryside — was a simulation that plays out several times a day on three video screens.

It is part of an unorthodox approach to dementia treatment that doctors and caregivers across the Netherlands have been pioneering: harnessing the power of relaxation, childhood memories, sensory aids, soothing music, family structure and other tools to heal, calm and nurture the residents, rather than relying on the old prescription of bed rest, medication and, in some cases, physical restraints.

“The more stress is reduced, the better,” said Dr. Erik Scherder, a neuropsychologist at the Vrije Universiteit Amsterdam and one of the country’s best-known dementia care specialists. “If you can lower stress and discomfort, it has a direct physiological effect.”

Simulated trips in buses or on beaches — like one in a care facility in Haarlem, not far from a real beach — create a gathering point for patients. The shared experience lets them talk about past trips and take a mini holiday from their daily lives.

Dementia, a group of related syndromes, manifests itself in a steep decline in brain functions. The condition steals memories and personalities. It robs families of their loved ones and saps resources, patience and finances.

Up to 270,000 Dutch people — roughly 8.4 percent of the 3.2 million residents over the age of 64 — have dementia, and the government expects that number to double in the next 25 years.

In recent years, the government has preferred to pay for home care rather than in a licensed facility so most people with dementia live at home. The facilities, which are privately run but publicly funded, are generally reserved for people in an advanced state of the disease.

In the 1990s, the Dutch started thinking differently about how to treat the disease, moving away from a medicalized approach.

“In the ’80s, clients were treated like patients in a hospital,” said Ilse Achterberg, a former occupational therapist, who was one of the pioneers of “snoezel” rooms, which feature light, aroma, massage and sound therapy, and let patients relax and access emotions that are often blocked in stressful clinical settings.

These rooms were the forerunner of some of the techniques found today in many care facilities in the Netherlands.

At the Amstelring Leo Polak home in Amsterdam, for example, there is a reproduction of a city bus stop, where Jan Post, a 98-year-old patient, often sits and kisses his wife, Catharina Post, when she visits.

Mr. Post, who has severe dementia, can create only 10 seconds of short-term memory and is afraid of not finding his way back to his room when he leaves it.

“Seventy years married and we are still in love,” said Ms. Post, 92, who visits several times a week.

The Posts were drinking and chatting recently at Bolle Jan, a re-creation of an actual Amsterdam cafe in a common area of the home.

If the surroundings were fake, the alcohol was real, and the jokes, often repeated, drew real guffaws. The singing, at times wobbly, was enthusiastic.

While caregivers and academics believe that such environments help dementia patients cope better, solid evidence for their long-lasting effectiveness is hard to come by, in part because the condition has no cure.

But Katja Ebben, who is the intensive care manager at Vitalis Peppelrode, a home in Eindhoven, in the southeast of the country, said she had noticed that with the newer techniques, patients need less medication and fewer physical restraints.

Willy Briggen, 89, who is in an advanced stage of dementia, lives at the Eindhoven home.

Like many with dementia, Ms. Briggen sometimes becomes impatient, even unruly. The outbursts put a strain on the home’s staff, who struggle to deal with her frail frame. A decade ago, she might have been prescribed drugs or restrained to manage the outbreaks.

But when she gets upset, the staff rolls a squat projector into her room, where it beams out calming images and plays soothing sounds.

On a recent visit, Ms. Briggen went from an obvious state of emotional discomfort to calm reflection as she gazed at the ceiling of her private room, which was festooned with projected nature scenes, including of ducks.

Of the 210 residents at the Eindhoven home, 90 have dementia and are restricted to special floors for their safety.

The brick-and-glass building has linoleum floors, low ceilings and wide doors to accommodate beds on wheels. Despite the medical style, its décor has echoes of a bygone era, when Ms. Briggen would have been a girl.

The floors feature old-fashioned, dark-wood furniture, and the rooms are decorated with books, rotary-dial phones and 50-pound typewriters. The cafeteria’s tables are covered by tablecloths and freshly cut flowers. It does not smell like a hospital.

In rethinking how to deal with dementia patients, many care centers have focused on the surroundings. Another tactic is to reorganize residents to create “family” clusters of six to 10 people.

Residents in many Dutch facilities have their own rooms, which they are encouraged to view as their own domain. There is often a communal living room and a kitchen, where residents help with chores like peeling potatoes and washing salad.

In the fight against depression and passivity, which are often symptoms of the condition, care givers also try to stimulate residents with activities like dancing.

“It’s really about all the little things that make a normal life,” said Pamela Grootjans, a nurse at Sensire Den Ooiman, the facility in Doetinchem that offers the simulated bus ride.

In the Christian Beth-San special care home in Moerkapelle, close to The Hague, Arie Pieter Hofman, 87, and Neeltje Hofman-Heij, 88, use a simulated bike connected to a treadmill to race through scenes from their old neighborhood in Gouda, projected onto a flat-screen display.

The company that makes the bike tour, Bike Labyrinth, has sold the simulators to more than 500 homes in the Netherlands. The Dutch maker of the projectors, Qwiek, says it has units in 750 Dutch care homes.

“The idea is to challenge the patient a bit in a positive way,” said Dr. Scherder, the Amsterdam neuropsychologist. “Leaving them in the chair, passive, make the disease progress much faster.”

On a recent visit to the Vreugdehof care center in Amsterdam, one resident, Anna Leeman-Koning, 90, played with a therapy robotic seal. It helps brings old emotions to the fore, momentarily sweeping away disorientation caused by the resident’s irreversible, progressive loss of faculties.

But the seal began shaking its robotic tail too much, upsetting Ms. Leeman-Koning.

“Please calm down, please calm down,” she said. “What can I do to calm you down?”

Medicare Skilled Nursing Facility Coverage

You do not have to improve to qualify!

Coverage Criteria

3-Day Inpatient Hospital Stay

1.       You must have a qualifying three-day inpatient (as opposed to outpatient) hospital stay. Medicare Advantage plans might not have this requirement.

2.       Generally, a transfer to a skilled nursing facility must be made within 30 days of leaving the hospital.

Physician’s Order

1.       Your care at the skilled nursing facility must have been ordered by a physician and must relate to a condition for which you received inpatient hospital services or that arose at the skilled nursing facility while being treated for a condition for which you received inpatient hospital services.

2.       As a practical matter, the care must only be available on an inpatient basis.

Daily Skilled Care

1.       You must require and receive skilled nursing seven days a week, skilled therapy five days a week, or a combination of both skilled nursing and therapy services seven days a week.

2.       Skilled care means that services must be provided by, or under the supervision of, a skilled professional in order to be safe and effective.

No Improvement Standard

1.       Medicare coverage “does not turn on the presence or absence of a beneficiary’s potential for improvement, but rather on the beneficiary’s need for skilled care. Skilled care may be necessary to improve a patient’s condition, to maintain a patient’s current condition, or to prevent or slow further deterioration of the patient’s condition.” CMS Transmittal 179, Pub 100-02, 1/14/2014; Medicare Benefit Policy Manual, Chapter 8, Sections 30.2, 30.3.

100-Day Benefit Period

1.       Your maximum benefit period is 100 days. It is possible to have more than one benefit period during the calendar year.

2.       You are entitled to notice and to file an appeal when your Medicare-covered skilled nursing facility care is terminated before the end of your benefit period.

For additional information, see the Center for Medicare Advocacy’s Improvement Standard Homepage.

Welcome Kristin Bonner

Breathing Tubes Fail to Save Many Older Patients

Republished from: https://www.nytimes.com/2018/06/22/health/breathing-tubes-intubation-older-patients.html

One-third of patients over age 65 die in the hospital after they are put on ventilators. Doctors are beginning to wonder if the procedure should be used so often.

By Paula Span
June 22, 2018

Earlier this year, an ambulance brought a man in his 80s to the emergency room at Brigham and Women’s Hospital in Boston. He had metastatic lung cancer; his family had arranged for hospice care at home.

But when he grew less alert and began struggling to breathe, his son tearfully called 911. 

“As soon as I met them, his son said, ‘Put him on a breathing machine,’” recalled Dr. Kei Ouchi, an emergency physician and researcher at the hospital.

Hospice patients know that they’re close to death; they and their families have also been instructed that most distressing symptoms, like shortness of breath, can be eased at home.

But the son kept insisting, “Why can’t you put him on a breathing machine?”

Dr. Ouchi, lead author of a new study of how older people fare after emergency room intubation, knew this would be no simple decision.

“I went into emergency medicine thinking I’d be saving lives. I used to be very satisfied putting patients on a ventilator,” he told me in an interview.

But he began to realize that while intubation is indeed lifesaving, most older patients came to the E.R. with serious illnesses. “They sometimes have values and preferences beyond just prolonging their lives,” he said.

Often, he’d see the same people he’d intubated days later, still in the hospital, very ill, even unresponsive. “Many times, a daughter would say, ‘She would never have wanted this.’”

Like all emergency doctors, he’d been trained to perform the procedure — sedating the patient, putting a plastic tube down his throat and then attaching him to a ventilator that would breathe for him. 

But, he said, “I was never trained to talk to patients or their families about what this means.”

His study, published in the Journal of the American Geriatrics Society, reveals more about that.

Analyzing 35,000 intubations of adults over age 65, data gathered from 262 hospitals between 2008 and 2015, Dr. Ouchi and his colleagues found that a third of those patients die in the hospital despite intubation (also called “mechanical ventilation”).

Of potentially greater importance to elderly patients — who so often declare they’d rather die than spend their lives in nursing homes — are the discharge statistics.

Only a quarter of intubated patients go home from the hospital. Most survivors, 63 percent, go elsewhere, presumably to nursing facilities.  The study doesn’t address whether they face short rehab stays or become permanent residents. 

But it does document the crucial role that age plays. 

After intubation, 31 percent of patients ages 65 to 74 survive the hospitalization and return home. But for 80- to 84-year-olds, that figure drops to 19 percent; for those over age 90, it slides to 14 percent.

At the same time, the mortality rate climbs sharply, to 50 percent in the eldest cohort from 29 percent in the youngest.

All intubated patients proceed to intensive care, most remaining sedated because intubation is uncomfortable. If they were conscious, patients might try to pull out the tubes or the I.V.’s delivering nutrition and medications. They cannot speak.

Intubation “is not a walk in the park,” Dr. Ouchi said. “This is a significant event for older adults. It can really change your life, if you survive.”

A study at Yale University in 2015 following older adults before and after an I.C.U. stay (average age: 83) confirmed what many geriatricians already understood. Depending on how disabled patients are before a critical illness, they’re likely to see a decline in their function afterward, or to die within a year.

Those who underwent intubation had more than twice the mortality risk of other I.C.U. patients. “You don’t get better, most of the time,” said Dr. Ouchi. While outcomes remain hard to predict, “a lot of times, you get worse.”

Intubation rates are projected to increase. But so has the use of alternatives known as “noninvasive ventilation” — primarily the bipap device, short for bi-level positive airway pressure.

A tightfitting mask over the nose and mouth helps patients with certain conditions breathe nearly as well as intubation does. But they remain conscious and can have the mask removed briefly for a sip of water or a short conversation.

When researchers at the Mayo Clinic undertook an analysis of the technique, reviewing 27 studies of noninvasive ventilation in patients with do-not-intubate or comfort-care-only orders, they found that most survived to discharge. Many, treated on ordinary hospital floors, avoided intensive care.

“There are cases where noninvasive ventilation is comparable or even superior to mechanical ventilation,” said Dr. Douglas White, a critical care physician and ethicist at the University of Pittsburgh School of Medicine.

Dr. Ouchi, for instance, explained to his patient’s distraught son that intubation would thwart his father’s desire to remain communicative. The patient, able to see though not to say much, died four days later in a hospital room with bipap and morphine to reduce his “air hunger.”

Most patients in the Mayo review died within a year, too. But bipap may provide an interim option, giving families and physicians time to decide together whether to intubate an ailing older patient, who at this point probably can’t direct his own care. 

The harried emergency room environment, after all, hardly encourages thoughtful discussions about patients’ prognoses and wishes. Those can become fraught conversations anyway, as Dr. White’s previous research has demonstrated.  

His 2016 study showed that when physicians and surrogate decision makers have very different expectations about a critically ill patient’s odds of recovery, it’s not merely because family members fail to grasp what the physician explained.

“Other things get in the way of making good decisions,” Dr. White pointed out. “A lot of this has to do with psychological and emotional factors” — like “optimism bias” (Most people with this condition will die, but not my mom) or “performative optimism” (If we maintain hope, our mom will get better).

In their most recent study, he and his colleagues experimented with a support program for families with relatives in I.C.U.s., nearly all intubated. 

When a specially-trained nurse checked in daily to explain developments and answer questions, families rated their communications more highly and felt more satisfied with their loved ones’ care.

The University of Pittsburgh Medical Center’s health system has begun adopting the program in its 40 I.C.U.s.

But discussing how aggressively an older person wants to be treated remains a conversation — probably a series of them — best held before a crisis. 

Intubation, for instance, is often something a physician can foresee.  Older patients who have cardio-respiratory conditions (emphysema, lung cancer, heart failure), or who are prone to pneumonia, or who have entered the later stages of Alzheimer's or Parkinson's disease — any of them may be nearing this crossroads.

When they do, Dr. Michael Wilson, a critical care physician at the Mayo Clinic, opts for a particularly humane approach.

As he recently described in JAMA Internal Medicine, before he inserts the tube, he explains to the patient and family that while he and the staff will do everything they can, people in this circumstance may die.

“You may later wake up and do fine,” he tells his patient. “Or this may be the last time to communicate with your family,” because intubated patients can’t talk.

Since setting up intubation generally takes a few minutes, he encourages people to spend them sharing words of comfort, reassurance and affection. Without that pause, “I have stolen the last words from patients,” he told me.

His editorial has drawn attention from critical care physicians around the world. 

Dr. Wilson has used this approach about 50 times in his I.C.U., so he has learned what patients and families, given this opportunity, tell one another.

“It’s nearly always, ‘I love you,’” he said. “‘I hope you do well.’”

How to Talk About Moving to a Retirement Home: ‘It’s a Journey’

Reprinted from: https://www.nytimes.com/2018/04/27/business/retirement-home-move-talk.html

Having a conversation about moving — whether it’s with a relative, even a spouse — brings up lots of anxiety. Here’s how to go about it.

By Peter Finch
April 27, 2018

Dawn and John Strumsky agree about most things, a tendency that has served them well in 45 years of marriage. But there was one subject where they did not see eye to eye for the longest time: their retirement future.

Ms. Strumsky wanted desperately to move into a retirement community, to live as “a princess” unburdened by the cooking, cleaning or yardwork required at their Maryland home. Mr. Strumsky didn’t just resist the idea, he detested it. During one argument with his wife, he shouted, “By God, I’ll sit in the burned-out, firebombed ruins of this home before anybody pulls me out!”

Mr. Strumsky, 78, tells that story with a laugh. Because, as he puts it, “I’ve done a 180 on this.” He finally gave in to his wife’s wishes, and in 2011 they moved to Charlestown, a retirement community outside Baltimore. Today, it might have no bigger fan than John Strumsky. One measure of his devotion: He’s the author of an exhaustive, 364-page history of Charlestown that management hands out to prospective residents.

His reluctance to move into a retirement community was not unusual. People often vow they’ll never do it, for any number of reasons. They fear giving up their independence. They can’t bear leaving their home. They don’t like confronting their own mortality. This can lead to bitter squabbles with members of their family and other loved ones who want them to move.

“I’ve heard more than one adult child say, half-jokingly, ‘If Mom doesn’t check in to a retirement home, I’m going to need to,’” said Katherine Pearson, a specialist in elder law and a professor at Pennsylvania State University’s Dickinson Law School.

So how do you persuade an unwilling senior to at least consider it? The key is to be patient, said Tom Neubauer, executive vice president at Erickson Living, which operates 19 retirement communities. “Inherently there’s a sense of denial, particularly as it relates to aging, and you’re trying to defeat that.”

He likened the process to helping a high school student choose a college: “You can’t just hand them a brochure and say, ‘This is where you’re going.’ It’s a journey.”

Mr. Neubauer’s mother, Betty, moved into a retirement home three years ago. He had started encouraging her about three years before that. The discussion, he said, was less about “You need to do this” and more about “How do we maximize your years in retirement?”

He focused on “really getting her to reflect on her life as she knew it,” he said. “I got her to recognize that the stairs in her house were pretty steep, that the weather had more of an impact on her ability to get out and do things, that she wasn’t pursuing all her hobbies as much anymore because people weren’t driving at night. It ended up being very easy.”

It’s best to start the retirement-home conversation with broad, open-ended questions, said Brad Breeding, founder of myLifeSite.net, a website that helps consumers research retirement communities. “What does peace of mind mean to you in this stage of your life?” he suggested. “What kinds of concerns do you have for your future?”

Let’s say a senior’s No. 1 goal is staying in her home. “O.K., in the next conversation I’ll start to talk about ‘What would we do if you had a fall in your home?’ Or ‘What would happen if you had a stroke?’” Mr. Breeding said.

One way to make retirement communities more attractive is to frame the move as a gift to their children. “It’s really removing the responsibility of caring for the parents, of not having to make frantic, last-minute arrangements if something changes in their health,” said Lesley Sargent, a residency counselor at the Sagewood retirement community in Phoenix.

Part of the problem is that many people hear “retirement community” and think “nursing home.” Today’s typical continuing care retirement community, or C.C.R.C., is a far cry from the sterile nursing-home environment of previous generations. While the communities usually have some hospital-like rooms for people who need more advanced care, most of their residences look and feel like ordinary apartments.

The best way around that objection is to let someone see firsthand. “You can always go for a meal just to experience what it’s like,” said Lindsay Hutter, chief strategy and marketing officer at Goodwin House, a senior living and care organization in Virginia.

The ideal approach: Create a social occasion where the senior you’re trying to convince can dine with friends, or friends of friends. With seniors, Ms. Hutter said, “our observation is that peers have a much greater influence than their children do.”

Some retirement communities let potential residents spend a few nights to see how they like it. Others offer rental programs that let seniors stay longer. Like a lot of C.C.R.C.s, Goodwin House will let nonresidents join a waiting list — known as its “priority club” — that allows them to use its restaurants and participate in activities. If they decide the community is not for them, the $1,000 waiting list fee is refundable.

Another common objection is the price. Indeed, C.C.R.C.s are expensive, with entrance fees generally equaling about what people would pay for a home in the local market. Sometimes these fees are partly or fully refundable if the resident decides to move out, though often they are not. On top of that, there is a monthly maintenance payment.

When Mickie Zatulove started urging her husband, Paul, to consider retirement communities a few years ago, he argued that they were “way overpriced.” He was “totally wrong about that,” Mr. Zatulove acknowledged recently from their apartment at Sagewood.

What Mr. Zatulove, an 86-year-old former investment adviser, failed to take into account: “Half the cost is the physical plant they provide,” he said. “The dining rooms, swimming pools, classrooms, fitness centers, beauty shops, spas, clinics, all within walking distance, with no stairs. And this is very important. Your purpose as you age is to keep your quality of life and participate in activities with companions in a safe environment.”

Remember, too, that maintaining a single-family house isn’t exactly cheap. Expenses like routine upkeep, security and yardwork will disappear once you move into a retirement community, said Frederick Herb, a Seattle retiree and author of the book “Holistic Living in Life Plan Communities.”

Still, the thought of leaving the family home is the biggest stumbling block for many retirees. This is partly because they have grown accustomed to their house and also because they are rattled by the thought of moving into someplace smaller.

A specialist in senior moving might be the answer to that problem. A cottage industry of these consultants has sprung up in recent years, and today the National Association of Senior Move Managers has more than 1,000 members. They don’t just move boxes. They’ll create digital floor plans to show clients how everything will look and fit in a smaller home. They’ll ship leftover items to relatives or to auctions. They’ll even come into the new home and hang photos just the way they were before.

“Our goal is to re-create their old space,” said Joel Danick, co-owner with his wife, Susie, of TAD Relocation in Maryland. “The more familiar we can make the new space, the quicker they’ll make the transition and get comfortable.”

What’s the secret to finding that comfort zone? People living in retirement communities agree that the best approach is to get out of your room, meet your new neighbors and allow yourself to enjoy their company.

For the once-skeptical Mr. Strumsky, it took only days for him to start feeling certain that he and his wife, who is 72, had made the right decision. About a week after moving in at Charlestown, he went out to walk the dog at night and ran into a pair of women he didn’t know who were chatting amiably in the parking lot. About 25 minutes later, he returned home and saw the same women, still talking.

“They were so unconcerned about their personal safety, they were oblivious to anything going on around them,” Mr. Strumsky said. “And it just hit me: I really wished my mother or my sister or my aunt could have had this experience, to feel that safe and secure. At that point, it was like a light bulb going on. It was an instant turnaround for me.”

The Menopause-Alzheimer’s Connection

Reprinted from: https://www.nytimes.com/2018/04/18/opinion/menopause-alzheimers-connection.html

By Lisa Mosconi
Dr. Mosconi is a neuroscientist.
April 18, 2018

In the next three minutes, three people will develop Alzheimer’s disease. Two of them will be women.

There are 5.7 million Alzheimer’s patients in the United States. By 2050, there will probably be as many as 14 million, and twice as many women as men will have the disease.

And yet research into “women’s health” remains largely focused on reproductive fitness and breast cancer. We need to be paying much more attention to the most important aspect of any woman’s future: her ability to think, to recall, to imagine — her brain.

When I first started in the field, Alzheimer’s was thought of as the inevitable consequence of bad genes, aging or both. Today we understand that Alzheimer’s has compound causes, such as age, genetics, high blood pressure and aspects of lifestyle, including diet and exercise. There is also scientific consensus that Alzheimer’s is not always a disease of old age but can start in the brain when people are in their 40s and 50s.

What we are only beginning to understand is why women are more susceptible. What factors differentiate women from men, specifically as we reach middle age?

The first and most obvious thing is fertility. Women are diverse, but we all experience the decline in fertility and the beginning of menopause.

It turns out that menopause affects far more than our childbearing potential. Symptoms like night sweats, hot flashes and depression originate not in the ovaries but largely in the brain. These symptoms are all caused by an ebb in estrogen. The latest research, including my own work, indicates that estrogen serves to protect the female brain from aging. It stimulates neural activity and may help prevent the build up of plaques that are connected to the onset of Alzheimer’s disease. When estrogen levels decline, the female brain becomes much more vulnerable.

To determine this, my colleagues and I used a brain imaging technique called PET on a group of healthy middle-aged women. This allowed us to measure neural activity and the presence of Alzheimer’s plaques. The tests revealed that the women who were postmenopausal had less brain activity and more Alzheimer’s plaques than premenopausal women. More surprising, this was also the case for perimenopausal women — those who were just starting to experience symptoms of menopause. And both groups’ brains showed even more drastic differences when compared with those of healthy men of the same age.

The good news is that as women mature into their 40s and 50s, there seems to be a window of opportunity when it is possible to detect early signs of higher Alzheimer’s risk — by doing a brain-imaging test, as we did — and to take action to reduce that risk.

There is increasing evidence that hormone replacement therapies — mainly, giving women supplemental estrogen — can help to alleviate symptoms if given before menopause. We need much more research to test the efficacy and safety of hormone therapy, which has been tied to an increased risk of heart disease, blood clots and breast cancer in some cases.

Perhaps in the next decade it will become the norm for middle-aged women to receive preventive testing and treatment for Alzheimer’s disease, just as they get mammograms today. In the meantime, research shows that diet can alleviate and mitigate the effects of menopause in women which could minimize the risk of Alzheimer’s.

Many foods naturally boost estrogen production, including soy, flax seeds, chickpeas, garlic and fruit like apricots. Women in particular also need antioxidant nutrients like vitamin C and vitamin E, found in berries, citrus fruits, almonds, raw cacao, Brazil nuts and many leafy green vegetables.

These are first steps, for women and for doctors. But the more we learn about what kicks off and accelerates dementia, the clearer it becomes that we need to take better care of women’s brains. A comprehensive evaluation of women’s health demands thorough investigations of the aging brain, the function of estrogen in protecting it and strategies to prevent Alzheimer’s in women specifically.

No one needs to be reminded that many things make a woman unique. We are working to help make sure that the risk of Alzheimer’s is not one of them.

Lisa Mosconi is the associate director of the Alzheimer’s Prevention Clinic at Weill Cornell Medical College and the author of “Brain Food: The Surprising Science of Eating for Cognitive Power.”