Saturday, December 15, 2018

The Holidays and Alzheimer's

Republished from:

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

Saturday, December 1, 2018

The Importance of Medical Touch

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.

Thursday, November 15, 2018

When Family Members Care for Aging Parents

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.”

Thursday, November 1, 2018

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

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.”

Monday, October 15, 2018

To Manage Dementia Well, Start With The Caregivers

Republished from:

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 and

Monday, October 1, 2018

The Long-Term-Care Insurance Dilemma

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

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.

Saturday, September 15, 2018

Seniors Healthier When Medical Care Is Coordinated

Reprinted from: and 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.”