CAREGIVING

Don’t wait until you’re in an emergency situation


Part of the ALZHEIMER’S & DEMENTIA: PERSONAL STORIES, RESEARCH, ADVICE SPECIAL REPORT

(This article appeared previously on Caring.com.)

Caring for a loved one with dementia comes with enormous physical and emotional challenges. Yet Caring.com’s recent Family Caregiver Journey Survey showed that just one in four family caregivers (26 percent) who provide care for a loved one with dementia hire professional help. That means that three out of four are doing the best they can without the benefit of paid help.

The work of informal caregiving isn’t without value. In fact, family caregiving for older adults is estimated to be worth $234 billion annually, according to a 2016 report by the National Academy of Sciences.

Included in that estimate are the 8.5 million caregivers who are helping nearly 5 million older adults with dementia complete two or more self-care needs each day, such as bathing, dressing, eating, toileting or getting in and out of bed. The problem is that many of those costs are hidden, while hiring professional help requires paying out of pocket.

What Stops People from Hiring Help

What follows are some of the most common reasons families choose not to hire professional help to care for their aging parent, whether or not they have dementia:

  • Cost. “Money is always a concern. Around here, a health aide is about between $23 and $25 hour, and it’s generally a three-hour minimum. Many people don’t really need three hours to get help with giving a loved one a shower, or to let you go out,” points out Lynnette Whiteman, executive director of Caregiver Volunteers, a nonprofit that coordinates volunteers to provide respite to dementia caregivers in New Jersey’s Ocean and Monmouth counties.
  • Logistics. “Often, you have to supervise people you bring in,” says Laura Gitlin, director of the Center for Innovative Care in Aging at Johns Hopkins University. Gitlin is a member of the Committee on Family Caregiving for Older Adults with the National Institute on Aging. For some people, hiring help might feel like more work. They may not know how to find qualified help, they don’t want the bother of supervising the work and even when they do bring someone in, their aging parent might be so upset that they carry that stress and agitation into the rest of the day, says Whiteman.
  • Embarrassment or modesty. “Often, people don’t want anyone in their home,” says Gitlin. Caregivers might worry that a professional will see only what they are doing wrong. Additionally, they might be protecting their loved one’s modesty with respect to bathing and toileting.
  • Family conflicts. Caring for an aging parent and negotiating all of these barriers likely takes a team — and that means you’ll face some conflict. Maybe you and your adult siblings disagree over when or how to pay for in-home care, or perhaps your aging parent has “fired” every care provider you’ve found. These may be some of the most persistent barriers to hiring in-home help.

However, it pays to work your way through those conflicts.

“You can save 40 to 50 percent of the cost of long-term care by deferring entry into residential care,” points out Janet LeClair, chief operating officer of The Ivey, a memory wellness day center in Charlotte, N.C. Hiring professional care to come into your home or placing your loved one in a day program for adults, can help delay the need for them to move to a facility, she says.

6 Benefits of Hiring Professional Help

1. You can delay residential care.

“There’s definitely evidence that home visits can help our older adults reduce hospitalization and delay placement in residential care,” says Gitlin. There are many ways in which getting in-home help, even one or two days a week, can help delay the need to move your loved one into a care facility.

2. Your loved one will get better care.

Let’s face it, family caregivers love their aging relatives and do their best to care for them, but the vast majority are not trained to provide expert-level care. The National Academy of Sciences’ 2016 report on family caregiving highlights that aging adults with dementia are at risk of missing out on needed medical care, going more often to the emergency room or hospitals and may be at higher risk for abuse and neglect when caregivers lack the support they need, including paid in-home care.

3. You’ll have more peace at home.

Some of the signs that you need either in-home help or an adult day program include becoming more irritable with your loved one, feeling persistently sad or hopeless, or feeling like you can’t ever see friends or do the things you once enjoyed. Finding the right balance with paid in-home care means you can breathe easier.

4. You’ll both be safer.

A lot of family caregivers are getting older themselves, points out Whiteman. Meanwhile, many caregiving tasks, such as helping an aging parent in and out of a shower or tub, are physically demanding. “It’s such a fall risk,” says Whiteman. And, she says, if you fall and end up in the hospital, your aging loved one with dementia will likely be placed in a residential facility. So it’s even more essential to take care of yourself.

5. You’ll get a break.

“The family caregiver can avoid burnout when taking time off to recharge. He or she can then return refreshed to caregiving,” says Brenda Avadian, a blogger at TheCaregiversVoice.com.

6. You’ll be healthier.

“We recommend getting paid professional help when we see the caregiver get sick themselves,” says Whiteman. “The time to hire a paid professional is not when it’s an emergency situation. I would say, bring someone in earlier rather than later.”

Take Baby Steps

If you’re still not convinced, try taking these small steps towards getting paid professional help:

  • Contact your local Alzheimer’s Association or your county Office on Aging. Learn about resources in your community in case you need them.
  • Invite a volunteer in. Whiteman, whose mother has Alzheimer’s disease, strongly recommends trying out a volunteer in the home. “We had somebody come in just one day a week, to sit with her or make her lunch, just to get her used to somebody coming in,” she says. Since these volunteers often have experience with people with dementia, they also can provide you with insights into what your loved one might need.
  • Consult with a geriatric care manager or social worker. “If you have the financial means, get a consultation with a geriatric social worker who can assess your situation and get an idea of your options,” recommends Gitlin. These individuals are typically paid by the hour, and could provide valuable insight into what next steps can help your family.
  • Talk to your doctor. “When is the last time a physician said, ‘Look, what are you considering in terms of living arrangements? What about a home health aide?’” asks Gitlin. Your primary care physician might not bring it up, but you can and should try to talk to him or her about it anyway, especially if you’re struggling at home.
  • Try a day program. An adult day program for people with dementia can give your aging parent a chance to socialize and be involved in appropriate activities while you also get a break. This is a solid alternative to having people come into your home if you’re not ready for that step. LeClair points out that programs designed for people with dementia can help them connect socially and stay engaged at their level — and often also have support groups or other events for caregivers.

It’s more about the conversation than the canapés, says author Priya Parker

The food was great, the wine was flowing and your friends gave you great gifts for your birthday. You were expecting a wonderful evening. But at the end of the night, you felt let down. And the sad part is — this isn’t the first time it’s happened.

You’re not alone.

“Many studies confirm that the time we spend in gatherings with other people often disappoint us,” writes Priya Parker in her book, The Art of Gathering: How We Meet and Why It Matters. Parker, a facilitator and strategic adviser who attended M.I.T. and Harvard and is trained in conflict resolution, wrote the book to help us achieve more satisfying, meaningful get-togethers.

“When I discuss the art of gathering, I’m referring to the shaping of interaction between people, not things.”

“Gathering — the conscious bringing together of people for a reason — shapes the way we think, feel, and make sense of our world,” Parker writes. “We spend much of our lives gathering … in families, neighborhoods, schools, birthday parties, dinner parties and funerals. But we spend most of that time in uninspiring, underwhelming moments that fail to capture us, change us in any way or connect us to one another.”

And here’s the kicker, according to Parker: “As much as our gatherings disappoint us, we tend to keep gathering in the same tired ways.”

After reading her book, I learned tips and techniques to change my gatherings for the better (and had a knockout birthday celebration). I asked Parker to share her thoughts with Next Avenue readers:

Next Avenue: What is your definition of a gathering?

Priya Parker: I define a gathering as any time three or more people come together for a purpose.

You’ve written that many gatherings are disappointing. How do we improve them?

We’ve been told for multiple generations that to gather well means to be an expert or a master in the shaping of things … making delicious canapés, or getting the right wine, or having the most beautiful table setting.

When I discuss the art of gathering, I’m referring to the shaping of interaction between people, not things.

You suggest that in order to create meaningful gatherings we must “commit to a bold, sharp purpose.” How do you define a purpose?

Most gatherings don’t have a purpose. Instead, people think the activity is the purpose.

For example, if you and your friends get together for your birthday, you might think the purpose is to celebrate your birthday. In reality, that’s the activity you’re doing. If I asked you to dig deeper, you might say that you’re throwing a birthday party to look back on the year. That’s a basic, bland purpose, but it’s a start.

What if you challenged yourself to create a bold, sharp purpose for your birthday party that would make it more meaningful? Here are some ideas: To surround myself with the people who bring out the best in me; to set some goals for the year ahead with people who will help me stay accountable or to reconnect with my siblings.

Can you see how your conversations will be deeper and more profound?

How do gatherings like book clubs differ?

When most people think about book clubs, they think that the purpose is to read a book, right? Reading a book is actually the activity we’re doing. Again, we’re confusing activity with purpose.

There could be many purposes of a book club. Sometimes the purpose isn’t obvious, or it’s different for individual book club members, and that can cause friction.  A typical challenge with book club meetings is that some members join for the purpose of reading and discussing more of a certain type of book and others join for the purpose of having a scheduled date and time to get together with friends, drink wine, and have fun!

Neither purpose is right or wrong, but members are often frustrated because they want more talking about the book and less about someone’s recent trip to Spain, or vice versa.

If this is an issue in your book club, you have options. You can choose to be flexible and accept it however it is; you can leave the club or you can speak with the members to try to determine an acceptable purpose that all of you can agree on.

Do you have a personal example of a gathering you wish had gone differently?

My husband and I had gotten together with a couple we don’t see often. It was election time, and I asked them which candidates they favored. Later that night I was thinking that I wish I had paused and asked about something more meaningful. Such as what does it feel like to be at this stage of life? Or what are the transitions you are going through?

Let’s talk about male friendships and relationships. You’re probably familiar with studies showing that as men get older, they let friendships slide and they get lonelier. What are your thoughts about men over 50 and gatherings?

One of the crises of what it means to be a man in the U.S. is that we have very few ways for men to gather outside of sports or drinking. And as men get older, it’s even more important for them to have meaningful gatherings.

We can learn from other cultures. In Portugal, there is a tradition of men’s dinner clubs. Men have dinner together and it’s part of male bonding. In Italy, I met with members of a boar-hunting club, and everyone in the club is over 50. Every Saturday during hunting season they would gather in the morning, do warm-up exercises, then go and hunt and cook together. Then all the families would eat together. I met with the members of this hunting club, and a man in his 70s told me, ‘My wife passed away a year ago. The only thing that saved me from complete and utter despair is this hunting club.’

I did find one example of a great men’s gathering in the U.S — a walking club. The men walk together at 6 a.m. It’s not a fast walk. It’s a way for them to get together and talk. This differs from traditional sporting activities which offer men an excuse not to talk.

You say that family reunions are some of the most important types of gatherings. How do we create meaningful reunions when the group is made up of three or more generations?

The answer: structure and stories. Many of the activities during a reunion will be unstructured. But occasionally including structure and stories can elevate your gathering.

Here’s an example. George Dawes Green is the founder of The Moth, a nonprofit organization that presents storytelling events across the United States and around the world. He and his family planned a reunion that included seventy people and lasted for three days. His sister suggested that one night be ‘Moth Night.’ They rented out a local hall, and asked every member to spend five minutes sharing through a story. The topic was: ‘What does it mean to be a Green?’ The stories shared on ‘Moth Night’ were a highlight of the reunion. The group especially enjoyed hearing the thoughts of younger family members, including one in middle school.

What’s the biggest takeaway about how to make a gathering better?

If you focus on only one thing in any gathering, focus on what you’re going to ask — not what you’re going to serve!

Start slowly, create categories and seek help if you need it


Organizing. and getting rid of, extra belongings can make it easier to downsize, clean a home and entertain guests.

But what should be done with a stack of boxes containing memorabilia stashed in a closet? Or a basement filled with items that represent the past 30 years?

“Clutter is real, and stuff follows us to the end,” says Felice Cohen, author and professional organizer based in New York City who teaches online organization classes to older adults.

“Sentimental clutter is the hardest clutter to part with.”

Sorting through last week’s coupons can be much easier than tackling a bin filled with memories from the past.

“As someone at the beginning of decluttering our large home in preparation for retirement, or at least moving into an apartment, we, like many friends, are dealing with the added, painful issues of what to keep from the home of close relatives who have passed away,” says Joel Poznansky, 61, who lives in Bethesda, Md. “There are questions about items — like overly revealing love letters or divorce papers that raise significant issues — fraught with overwhelming emotions.”

Those emotionally charged items can be tough to evaluate rationally. “Sentimental clutter is the hardest clutter to part with,” Cohen explains.

Strategies for Successful Decluttering

While not painless, approaching a stash or houseful of sentimental things with the following strategies may make the process manageable:

1. Group the memorabilia. “Memorabilia is very overwhelming to deal with, both from a volume and emotional perspective,” says Lisa Dooley, an organizing coach and author of More Space, More Time, More Joy!

To simplify decluttering, gather all keepsakes and mementos and put them in one spot. In addition to the easy-to-find items, empty drawers, closets and other storage areas. “Believe it or not, dealing with it piecemeal is even more time consuming, because we have no idea where it will pop up next,” Dooley explains.

2. Start with what’s easy. After putting it in a pile, don’t tackle everything in one day. Start slowly, such as setting a timer for 15 minutes or half an hour. Take a break and head back to the pile the following day.

You’ll likely spot items that you don’t use or value, such as a broken lamp from your first marriage or stained clothing you don’t remember purchasing. Deal with those first. “If it’s been damaged by water, heat or animals, it is beyond saving,” Dooley notes. “Throw it out now and move on to what you can work with.“

3. Create categories. It’s not unusual for a home’s memorabilia pile to span multiple generations, including everything from antiques to handmade blankets, children’s artwork and an assortment of grammar school yearbooks. Sort the belongings into groups, such as collections, pictures and old documents.

“Classifying items by type provides structure, which decreases the likelihood of becoming too emotionally overwhelmed,” says Sheri McGregor, a life coach and author of Done With the Crying: Help and Healing for Mothers of Estranged Adult Children.

Then, focus your attention on one group at a time. “Going through old photographs is one decluttering category,” McGregor says. “Sorting through a son or daughter’s school mementos is another. So is deciding about heirlooms such as family china or jewelry.”

4. Redirect items. If you come across items you don’t want to keep in the family, selling is an option. But don’t count on receiving a windfall.

“Many of the collectibles gathered over a lifetime may not have much resale value anymore,” says Luis Perez, CEO of Remoov, a San Francisco-based company that helps people declutter. “Baseball cards post-1960s have little to no value at all.”

For belongings you think your children or grandchildren would appreciate, consider giving them as gifts now or marking them to be passed on later. Also, keep in mind that while collections or college textbooks might have personal meaning to you, others might not be interested. “A library card or a playbill from a play you love can mean nothing to your children,” Poznansky says.

If family members aren’t interested, you can try to donate the wares to a secondhand store. Or create a new keepsake, such as a quilt made with T-shirts from places you visited or a collage of old photographs.

5. Set parameters. “If you’re moving to a smaller place, make a comparison to your current situation,” McGregor says. Then, aim to declutter as much as you need to fit the new place, such as 40 % or half of the boxes.

A friend or relative might be able to help you evaluate what to keep and what to pass on. If you’re struggling to downsize, a professional organizer could provide support.

“Some organizers specialize in photo and memorabilia management,” Dooley says. Others focus on the mental health and emotional journey of parting with things and serve as a bit of a life coach.

6. Enjoy the process. “Don’t look at it like decluttering and getting rid of your past, but as a journey through a long life,” Cohen says. Hold your wedding dress in your hands or flip through a photo album and take the time to remember what life was like then.

“Sometimes you just need to remember, to share a story one more time, to be able to part with something,” explains Cohen.

If you’re not ready to get rid of something now, and space isn’t a concern, put it aside for a year. Then revisit the item to see if you’re at a point where you can let it go.

And hold on to special discoveries you come across. “Keep toys you remember your children particularly enjoying — or that you would enjoy playing with with your grandchildren,” Poznansky says.

Many people are unaware of how physical and occupational rehab can help


(This article appeared previously in the American Association for Cancer Research’s Cancer Today.)

In July 2010, 52-year-old Julie Barthels, a clinical director of a rape crisis center, woke up with a sharp pain in her right breast. When the pain persisted for more than a week, Barthels, who lives in Machesney Park, Ill., had a mammogram that revealed a mass in her breast of more than 2 centimeters. After a lumpectomy, Barthels was diagnosed with stage IIA breast cancer.

At the end of September, Barthels had additional surgery to remove her right breast and surrounding chest muscles and lymph nodes. She started chemotherapy a month later, and soon noticed swelling on her right side and in her upper arm. Eventually, she couldn’t stretch her arm over her head. Barthels had developed a condition called lymphedema, swelling that occurs when lymph fluid builds up in the body’s tissues, typically in the legs or arms. Lymphedema is a common complication following surgery to remove lymph nodes.

Barthels’ primary care physician referred her for occupational therapy. Barthels, who had recently undergone rehabilitation for injuries sustained in a motorcycle accident, was no stranger to this type of therapy.

In January 2011, she started meeting with an occupational therapist two to three times a week. The therapist used a special type of massage to decrease lymphedema swelling by moving lymph toward areas of the body where it can drain more easily. Over the course of four months, the therapist taught Barthels how to perform self-massage and advised her to use a compression shirt to manage her condition.

Barthels, now 61, says the exercises and techniques she learned helped her maintain her mobility even as she continued weekly chemotherapy treatments. “I have so much movement and flexibility that I would not have if I hadn’t learned to take care of myself,” she says.

Benefits of Cancer Rehabilitation

Occupational and physical therapy are components of care that fall under the wide umbrella of cancer rehabilitation, a field that aims to help cancer survivors improve their ability to function, return to daily activities and pastimes and boost quality of life.

Besides physical function, cancer rehabilitation can also focus on nutritional counseling and psychological counseling to help people manage pain, fatigue, depression and other challenges resulting from cancer and treatment.

Still, doctors may not always prescribe outpatient rehabilitation for cancer patients, even though many patients report having functional limitations that affect their daily lives.

In a study published in 2015 in the Journal of Geriatric Oncology, for example, 341 of 529 cancer survivors from ages 65 to 97 who were enrolled in a cancer registry reported at least one functional limitation to their doctors. Researchers randomly reviewed charts for 65 of these patients, and found that only 11 charts made mention of physical or occupational therapy.

“Rehabilitation has not been part of what we would call traditional cancer care,” says Nicole L. Stout, a physical therapist based in Sarasota, Fla., who is a project coordinator for the National Institutes of Health’s Cancer Rehabilitation Initiative. The initiative supports national and international efforts to improve cancer rehabilitation. “It’s critical that we find ways to better integrate rehabilitation services into the cancer care continuum, because patients do better with these interventions,” said Stout.

Some research supports this assertion. A 2010 study in the BMJ looked at 120 women with breast cancer whose surgery removed some of their lymph nodes. The researchers found that women who received education and physical therapy that included stretching, shoulder exercises and specialized massage therapy to circulate lymphatic fluid were less likely to have lymphedema than those who received only educational materials.

In addition, a review published in Rehabilitation Oncology in July 2018 found that a variety of lower limb exercises designed to strengthen and coordinate movement helped improve cancer survivors’ balance and reduce pain and tingling associated with neuropathy. The review also suggested that strength training had positive effects on balance, strength and quality of life.

When Barthels started having trouble walking due to pain and weight gain in spring 2011, her primary care physician gave her a referral for physical therapy, where she learned exercises to build balance and to strengthen her core muscles by working out on a balance ball. Her therapist also incorporated weekly aquatic therapy, using weights designed for use in the pool, which helped Barthels strengthen her hips and improve her gait.

“Just being in the warm water helped me to loosen and build muscles that had become stiff from so much time resting,” Barthels says.​

Rehab Is Tailored for Individuals

Developing effective cancer rehabilitation programs can be challenging because each person may have different needs, says Rajesh Yadav, a rehabilitation physician at the University of Texas MD Anderson Cancer Center in Houston. Unlike patients recovering from an injury that can follow a linear path from illness to wellness, a cancer patient’s health may fluctuate over time.

“You have to have a handle on what’s going on with the cancer now,” Yadav says.

A rehabilitation physician like Yadav looks at the big picture of the person’s health, assessing physical function in addition to needs at work and home. “This patient is not just a tumor in one body part,” Yadav says. “We’re looking at a holistic view.”

Whether patients are learning how to deal with fatigue, getting familiar with using a walker or relearning how to drive, the goal is to help them do what they value, says Mackenzi Pergolotti, an occupational therapist and the director of research at ReVital Cancer Rehabilitation.

Pergolotti presented research in November 2017 at the International Society of Geriatric Oncology meeting in Warsaw, Poland, that showed that adults over 65 who received physical therapy to bolster strength and endurance, coupled with occupational therapy to address daily function, had better scores on mental health assessments compared to those who received standard care.

In addition, Pergolotti says, people who participated in the rehabilitation program in her study were more likely to say that they believed they could participate in the activities they value. “We think that may signify (that) older adults with cancer are more likely able to participate in what they find meaningful after rehabilitation,” she says.

Barriers to Access

Several factors can contribute to patients not accessing rehabilitation services.

Many health care providers tell cancer patients that treatments can be taxing. “In some ways, that’s helpful, because it helps them adjust their expectations,” says Kathleen Lyons, a rehabilitation scientist at Dartmouth-Hitchcock Norris Cotton Cancer Center in Lebanon, New Hampshire. But patients often feel overwhelmed by their illness, she says, and may not think to ask for rehabilitation therapies. “The onus is on us to make sure patients know there are options to treat their symptoms,” Lyons says.

Pergolotti’s experience suggests that older patients who live near a rehabilitation center are more likely to participate in a program than those who live farther away.

And even though inpatient and outpatient rehabilitation services are covered under Medicare, cost can be a barrier to accessing these treatments. A patient’s out-of-pocket costs will vary depending on their supplemental insurance. “It’s hard to nail down the exact cost because there are so many different types of supplementary insurance added to Medicare,” Pergolotti says.

Despite these challenges, cancer rehabilitation recommendations have made their way into professional guidelines.

In 2009, the National Comprehensive Cancer Network recommended physical or occupational therapy for cancer survivors who have lost function because of neuropathy. The American Society of Clinical Oncology has integrated rehabilitation into its treatment guidelines for head and neck cancers and breast cancer, as well as into guidelines for managing chronic pain. In April 2017, the American Occupational Therapy Association published profes​sional guidelines​ for managing the needs of cancer patients and survivors.

The evidence for potential solutions like aromatherapy and pet therapy


Part of the ALZHEIMER’S & DEMENTIA: PERSONAL STORIES, RESEARCH, ADVICE SPECIAL REPORT

Most people think of dementia as affecting memory and cognition, and it certainly does. But some of the most distressing symptoms of Alzheimer’s or other dementias are behavioral and psychological.

“What takes a lot of families by surprise are the things like agitation, problems sleeping, getting up and wandering; sometimes people even become violent,” said Dr. Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association.

Some people exhibiting these kinds of behaviors have been treated with anti-psychotic drugs, which has sparked widespread criticism. And the Food and Drug Administration (FDA) has mandated a black box warning on such drugs with older adults with dementia; they are associated with an increased risk of death.

But there’s an alternative.

“A lot of these [behaviors] can be managed with interventions that are really behavioral in nature, that do not require medication,” Fargo said. Those interventions include reminiscence therapy, music and art therapy, aromatherapy and pet therapy.

New Recommendations for Dementia Care

The use of person-centered, non-drug treatments for people with dementia is one of 56 new dementia care practice recommendations issued in late January by the Alzheimer’s Association.

They are “aimed at helping nursing homes, assisted-living facilities and other long-term care and community care providers deliver optimal quality, person-centered care for those living with Alzheimer’s and other dementias,” according to a statement by the Gerontological Society of America (GSA). The recommendations can be found online here and will be published as a supplement to The Gerontologist, the GSA’s peer-reviewed journal.

Responding to Their Environment

Sheryl Zimmerman, a professor and gerontologist at the University of North Carolina at Chapel Hill, was one of three authors of The Gerontologist’s article on non-drug practices for people with dementia.

She said the behavioral and psychological symptoms that often accompany dementia aren’t just a product of the dementia-affected brain. “Some of those behaviors are due to the interplay of the person with the environment,” Zimmerman noted.

For example: things may be happening too quickly, which can be frightening. There may be a high level of noise or too much stimulation.

Negative reactions may be exacerbated by the typical losses of aging: “An individual who has trouble seeing, for example, may be easily startled and distressed by noises that are not clearly identifiable, leading to anxiety or agitation,” the study said.

But employing non-drug therapies can help the person with dementia have a better quality of life and allow caregivers to do their job. “And it avoids the potential likelihood of giving the person (with dementia) a medication that would sedate them,” Zimmerman said.

Evidence for Non-Drug Therapies

Zimmerman and her colleagues examined 197 articles describing scientific evidence on non-drug practices to treat behavioral and psychological symptoms of dementia.

They fell into these categories: sensory practices (aromatherapy, massage, multi-sensory stimulation and bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy and meaningful activities), and what are known as “structured care protocols” (particular procedures for bathing and mouth care).

Some of what they found:

Aromatherapy

A number of studies have looked at the use of aromatherapy for agitation and aggression in people with dementia.

Overall conclusion: Mixed results. The positive outcomes with some patients may have been because they enjoyed the interpersonal and physical benefits of having cream rubbed into their hands, the study said. More large-scale trials are needed.

Massage

“Through tactile connection, a person living with dementia may feel comforted and cared about, especially in residential care environments where touch tends to be instrumental and task specific,” the study said. Massage may also be successful in combating the social isolation that can contribute to negative behaviors. And it may spur the body’s production of oxytocin, which can infuse a sense of reassurance and calm.

Overall conclusion: A “small evidence base” shows positive results in the immediate or short term. However, some people dislike massage; that may increase agitation for them. As with any therapy, success depends on whether it’s right for the person being treated.

Bright Light Therapy

Normal aging can prompt sleep disturbances. Dementia can further disrupt a person’s circadian rhythm, resulting in agitation and “sundowning,” an increase in confusion, irritability and moodiness as the day wanes.

Bright light therapy consists of using a special light fixture, light box or visor, or exposure to natural bright light.

Overall conclusion: Mixed results. It may have some benefit, but further research is required. Some studies found it may actually make agitation worse.

Pet Therapy

Pets, particularly dogs, have been used for people with dementia for decades. “Physiologically, quiet interaction with an animal can help lower blood pressure and increase production of neurochemicals associated with relaxation and bonding,” which may in turn reduce the behavioral and psychological symptoms of dementia, the study said.

In small studies, pet therapy has succeeded in reducing disruptive behavior and increasing interactions with others.

Overall conclusion: There is a “small and preliminary” evidence base for pet therapy, even when the pet is a robotic cat or dog. Understandably, pet therapy would not work well for people who are allergic or who have had bad experiences with animals in the past.

Bathing

Bath or shower time can be particularly upsetting for a person with dementia. It is “the personal care task associated with the highest frequency of behavioral expressions of distress for persons living with dementia,” the study said. Its intimate nature may cause embarrassment, especially if the person being bathed does not recognize the caregiver and does not understand what is going on.

“Years ago, in nursing homes, people used to be hosed down, if you will,” Zimmerman said. Through a protocol called “Bathing without a Battle,” developed at the University of North Carolina at Chapel Hill, those with dementia exhibit far less agitation and resistance.

Overall conclusion: Studies have shown positive results through relatively simple changes such as sponge baths in bed and creating a “spa-like” environment with music or calming sounds. More high-quality studies are needed for the best evidence, the report said.

Each One an Individual

The bottom line, researchers and advocates said, is that everyone is different. Like any older adult, individuals with dementia have their own preferences about their surroundings, their activities and their medical treatments. That’s the basis of person-centered care.

Most of the non-drug interventions have little potential downside. But it’s important to have guidelines, and those guidelines should be based on evidence, Fargo said.

“That’s why we undertook this effort to do a review of the literature, to find out what kinds of care have the evidence base behind it. And it’s important that we disseminate that to the community,” he said.

Cultivating a Positive Mindset, with a Morning Huddle

by Jennifer Crowley BSN RN CLCP CDP

Research has been done to study the knowledge, attitudes and anxiety related to Aging.  Attributable to the growing number of older adults and continued interest in how to best serve our older populations, many aspects related to societal expectations and perceptions of aging are being studied.   Linda Allen writes about one study in the Journal of Educational Gerontology. Comprised of university students, research found that having more factual knowledge of aging did reduce the level of ageist attitudes and those with more knowledge were less anxious about aging. Allen provides an opinion that young adults who are anxious about their own future aging may assign to the elderly negative stereotypes which they fear will describe their own future selves. Cultivating a positive mindset, for many, takes time and practice. It is what they say, attitude is contagious. Those we gather around or come into contact regularly can change the way we perceive the world and offer opportunities to practice our positive positioning. Or, adversely, promote negativity. Not everyone will appreciate the idea of refining the concept of aging or may find it difficult to manage the day-to-day emotional and physical challenges while growing older. In one of the classes I teach regularly, I encourage students (future caregivers) to be the beacon of light in the face of despair. Perhaps too strong of a word, the dictionary defines despair as the loss of hope, which is often accompanied by low spirits, gloom, and difficulty coping. We can improve our own mindset when applying principles on successful leadership. Take for example the morning huddle. Start each day with a meeting with yourself, reviewing your attitude and feelings. We all have daily tasks and affairs to manage, which can stifle our ability to focus on the valued parts of our identity. Cultivate your garden of knowledge, experience, and passion. Rekindle and refine your mind to include only positive thoughts on where you are in life and strategize for what it is you need to improve your physical or intellectual vigor. Vitality can occur at any age and can improve your capacity to endure. Through positive interactions, engagement in meaningful relationships and experiences, we can shift our own thinking, and that of others, to a pro-aging mindset, with less anxiety for the future.

Linda J. Allan & James A. Johnson (2008) Undergraduate Attitudes Toward the Elderly: The Role of Knowledge, Contact and Aging Anxiety, Educational Gerontology, 35:1, 1-14, DOI: 10.1080/03601270802299780

 

Jennifer Crowley is author of “7 Steps to Long-term Care Planning” a guidebook to assist individuals, families and professionals in designing a road map for aging.  She is the principal  of a management and consulting company, Eagleview West, which assists with assessments and care planning with professional services including case management and elder issue resolution and transition planning.

406-212-0620 or www.EagleviewWest.com  Jennifer@EagleviewWest.com

 

 

 

 

Active and passive engagement in the arts can be antidotes to depression


Part of the VITALITY ARTS SPECIAL REPORT

Eve Hammond, 76, a retired scientist in the Bay Area, has a steady diet of museum and gallery shows, plays and/or concerts each month. She has also taken craft classes, from jewelry-making and pottery to mosaics, and is a member of a local museum.

“Since my husband died, my only live-in companion is a cat. And while he is wonderful, I enjoy getting out and participating in what this city [San Francisco] has to offer,” says Hammond. “One of my favorites is Pop-Up Magazine, which is multimedia performances and has a sister magazine. I try to never miss a performance, and I’m always amazed by the young people telling their stories. There is so much enthusiasm, idealism and creativity; I leave on an emotional high, which lasts for weeks.”

Research shows that both active and passive cultural engagement (i.e. singing, playing a musical instrument or making a craft vs. visiting a museum or watching a movie) are strong antidotes to depression. A study of the effect of professionally conducted, community-based cultural programs on the physical and mental health of older adults in the U.S. found that those who engaged in active cultural pursuits regularly enjoyed better overall physical health, fewer doctor visits, less medication usage, fewer falls, less loneliness and better morale one year later, versus those who didn’t.

Research shows that both active and passive cultural engagement (i.e. singing, playing a musical instrument or making a craft vs. visiting a museum or watching a movie) are strong antidotes to depression.

A study of 2,148 people age 50 and older done by University College, London, over a 10-year period, found those who do at least one cultural activity every few months have a 32% lower risk of developing depression than those who don’t, while those who engage in at least one cultural pursuit a month have a 48% lower risk. The study, reported in The Journal of British Psychiatry in April 2019, was of people who had no depression when the study began.

The Power of Cultural Engagement

“Cultural engagement involves cognitive stimulation, social interaction and gentle physical activity — three things known to be protective factors in treating depression,” says study author Daisy Fancourt, a senior research fellow in the Department of Behavioural Science and Health at University College. “While growing research over the past decade shows the effects of cultural activities in treatment of depression, this is believed to be the first study on its effects in preventing it.”

Taking account of race, gender, marital status, education level, employment status and wealth didn’t negate the results, the study found. Neither did personality: the study was controlled to make sure cultural engagement wasn’t simply a stand-in for people with more open personality types.

Over the next 10 years, roughly 29% of the people studied experienced depression, determined either by a doctor’s diagnosis or self-description using the Centre for Epidemiologic Studies Depression Scale.

About one in four people 65 and older in England suffer from depression, it’s estimated, and the rate increases with age. Circumstances like the death of a spouse or partner, fewer social interactions, poor health, worsening economic conditions and living alone are linked to depression.

Music for All Ages

The Creativity & Aging study, designed by George Washington University to examine over 300 adults age 65+ in three regions (Washington D.C. area, Brooklyn, N.Y. and San Francisco) in partnership with the Levine School of Music, Elders Share the Arts and Center for Elders and Youth in the Arts, respectively, included activities such as painting, writing, jewelry-making and singing. The Gerontologist published its results from the D.C.-area group of 166 adults, its first phase.

Music has the power to transport, to distract from everyday worries and cares and to put one in a meditative state and transform. The links between music and mental health are well-known. “Music hath charms to soothe the savage breast,” wrote 18th-century English playwright William Congreve (the last word is often misquoted as “beast,” but point taken). Science says our emotional response to music involves brain regions critical to processing positive emotions and rewards. Much music research involves people with dementia in nursing homes, not an experiment designed with a control group, however.

But when it comes to the power of music, age is of little consequence.

A study about group-singing found women suffering from post-partum depression in the first 40 weeks after childbirth who participated in 10 weeks of group singing workshops with their babies experienced a reduction in depression afterword. The study of 134 mothers by Fancourt in partnership with the Royal College of Music’s Centre for Performance Science and the Imperial College Faculty of Medicine in London was also published in the British Journal of Psychiatry.

‘I Admire Other People’s Creativity’

Whether participating or observing, cultural activities offer many benefits, tangible and intangible.

Layne Zimmerman, 71, is a retired San Francisco business owner who lives alone, and like Hammond, makes it a point to be involved in the arts . She is a member of SF Film, the Jewish Film Institute and City Arts & Lectures, as well as a frequent attendee at Berkeley Rep, the Marsh and Shotgun Theatre.

“I love to read and like storytelling in  general; documentaries, foreign films, one-person plays to see stories enacted and author talks where you can ask questions,” she says. “I love the ambience, the energy, the crowd reaction. I don’t feel I’m a particularly creative person, but I admire other people’s creativity. I’m glad to live in such a culturally rich place.”

Sharon McDonnell

By Sharon McDonnell

Sharon McDonnell is a San Francisco-based travel and food/beverage writer who’s whale-watched in the Azores, ridden a camel in Morocco, seen the Northern Lights in Alaska and taken cooking classes from India to Thailand.

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A doctors’ group recently changed its guidelines to recommend massage


If you still see massage as a mere indulgence, it’s time to update your image of rubdowns. A growing number of scientific studies suggest that massage therapy can provide meaningful relief for chronic lower back pain, which afflicts more than 26 million Americans, according to the American Academy of Pain Medicine.

And adults over 50 are the most likely to benefit from regular back massage, according to groundbreaking research at the University of Kentucky, published in the journal Pain Medicine.

Maturity Pays Off For Massage Therapy

Researchers followed 104 patients who had consulted their primary care providers about back pain lasting three months or more, defined as chronic. More than half reported significantly less pain after 10 one-hour massage therapy sessions — rising to 70 percent among those 50 or older. Most still showed improvement six months later.

Why the age difference? Older participants were more likely to stick with the 12-week program, says co-author Niki Munk, a gerontologist and licensed massage therapist (LMT) who teaches and conducts research at the Indiana University School of Health and Rehabilitation Sciences.

Rising concerns about the current epidemic of opioid addiction have encouraged a search for safe, effective alternatives, including massage.

While the results don’t pinpoint other reasons, mature patients may be more self-aware, says Munk. “Older patients have better perceptions of their pain and relief,” she notes.

Drug-Free Alternatives

Many doctors have traditionally prescribed opioids, which can be highly addictive, for persistent back pain. But rising concerns about the current epidemic of opioid addiction have encouraged a search for safe, effective alternatives, including massage.

The American College of Physicians, which represents primary-care doctors, recently revised its clinical guidelines to recommend non-drug treatments such as massage, spinal manipulation and acupuncture as the first response to persistent lower back pain.

Orthopedic surgeons are also “very focused” on properly controlling pain prescriptions, says Dr. Alan Hilibrand, a spokesperson for the American Academy of Orthopaedic Surgeons and professor of orthopedic surgery at Jefferson Medical College in Philadelphia. He sees “significant short-term benefit” in massage for chronic back pain.

The new emphasis on hands-on treatments has made therapeutic massage more widely available. “Doctors are seeking us out now,” says Dolly Wallace, president of the American Massage Therapy Association (AMTA). She notes that hospitals and HMOs have been adding licensed massage therapists to their clinical staffs. And while neither Medicare nor Medicaid, in most cases, will cover medical massage, some Veteran’s Administration pilot programs, and a small-but-growing contingent of insurers, do.

The national average cost for a massage is about $70 per hour, according to the American Massage Therapy Association.

How Massage Works

As anyone who has ever enjoyed a soothing spa massage might testify, bodywork can relax the muscles and undo tense knots. Beyond that, researchers are still identifying the precise ways that massage can alleviate long-term pain.

One possibility: Regular massage can reduce the body’s production of the stress hormone cortisol and a neurotransmitter linked to pain, and it boosts the level of mood-enhancing serotonin, according to the Arthritis Foundation. This can mute pain caused by both skeletal issues, such as the typical disc degeneration of aging, or spasms in the muscles caused by overuse and poor posture, says Munk.

“Massage isn’t going to put a spine back in place, but it can release muscle holdings around that site,” she says.

The Arthritis Foundation website quotes Tiffany Field, director of the Touch Research Institute at the University of Miami School of Medicine, as saying that regular massage can lead to a significant reduction in pain for those with arthritis.

Hitting the Right Spot

Would-be massage patients may confront a confusing roster of massage styles, ranging from Ayurvedic to shiatsu. But most massage styles fall into one of two broad categories: Swedish, involving long strokes of varying intensity levels, and deep tissue, which concentrates on kneading knots and “trigger points” in muscles and connective tissue (myofascia).

Some therapists consider deep-tissue massage especially effective in chronic cases, but any style may counteract pain if it suits you, experts agree. Check with your regular health care practitioner before starting massage therapy, however, if you’re taking blood thinners or suffer from severe osteoporosis, varicose veins or a flare-up of rheumatoid arthritis that may be exacerbated by pressure.

Finding Help

How do you find the right healing hands for your back?

  • Ask for referrals from your doctor, chiropractor, physical therapist and experienced friends. Use AMTA’s locator service at FindaMassageTherapist.org.
  • Call your insurer to see whether massage is covered and whether you need a prescription.
  • Contact the therapists you’re considering. Check credentials; therapists are licensed as LMTs or CMTs (Certified Massage Therapist) in 46 states and Washington, D.C. Ask about their preferred approaches and expertise — are they experienced with low back pain? Do they accept insurance?
  • Visit their workplace. “Look for quiet, clean, comfortable surroundings,” advises Linda Wheatland Smith, a chiropractor and acupuncturist in St. Louis and a spokesperson for the Arthritis Foundation. Whether the therapist works in a clinic or makes home visits, request an adjustable head- and neck rest.
  • “Find someone you can communicate and collaborate with,” Smith says. You want to feel free to tell the therapist if a technique bothers you, hurts or makes you anxious. (To make sure she targets the right spot, Smith asks patients to color it in on a chart of the body.)
  • Look for someone willing to create a treatment plan, adapt to any changes in your condition and to follow up, telling you when the therapist wants to see you next. But seek a therapist who values silence during the actual massage, says Smith, so you both can concentrate on healing.

 

By Lynn Langway

Lynn Langway is a former senior editor of Newsweek, executive editor of Ladies’ Home Journal, and journalism teacher at New York University who now writes about health and travel for various websites. Her work has appeared in the New York Times, The Nation, Money and other national publications.

Advice for Medicare Open Enrollment, which runs Oct. 15 through Dec. 7


The Fall Open Enrollment Period for Medicare is nearly here, running October 15 through December 7. It’s the time for people 65 and older to sign up for Medicare plans for 2020 to ensure they’ll have coverage meeting their needs. The Medicare site’s Medicare Plan Finder tool can help find plans in your area, but it was just updated significantly. So you’ll want to understand how to use the new version.

Below is advice on how to use the Medicare Plan Finder and shop for Medicare during Open Enrollment. Keep in mind that if you’re already a Medicare beneficiary and have been happy with your Medicare plans, you’ll still want to go through this process.

The reason? Medicare Advantage plans from private insurers and stand-alone Medicare Part D plans for prescription drugs with Original Medicare often change from year to year. So, your network of health care providers or list of covered drugs may be different in 2020.

If you created a personalized drug list for Medicare in the past, you’ll have to enter the information all over again in the new Plan Finder.

The government revised its Medicare Plan Finder tool at the end of August to unveil a more modern design and, ideally, an improved user experience. The previous version was text-heavy and had an outdated look and feel.

But the updated version has flaws of its own that you’ll need to work around.

3 Changes In the New Medicare Plan Finder

Here are the three big changes in the new Medicare Plan Finder:

1. How you access a basic or personalized search. The earlier Medicare Plan Finder let you do a customized search by entering personal information like your date of birth and Medicare number. You could then create a drug list and choose pharmacies; then, the search results would show which Medicare plans covered your medications and had pharmacies in your network. The drug list would be saved and accessible through a drug list identification number.

With the new Plan Finder, you generally need to create, or log in to, a MyMedicare account to do a personalized search. If you don’t want to make a MyMedicare account or will be doing a search on behalf of someone else (like your parents), you can do an anonymous search by clicking on the link that says, “Continue without logging in.”

Your MyMedicare account has other benefits, too. Logging in to it provides electronic access to your Medicare Summary Notice (the health care items and services you’ve received in the past three months), shows you the coverage you currently have and lets you see certain health insurance claims.

2. How you find plans covering your medications. If you created a personalized drug list for Medicare in the past, you’ll have to enter the information all over again in the new Plan Finder. The revised tool hasn’t transferred previous drug list information to the new system.

3. The preferred pharmacies for Medicare Part D plans. The new Plan Finder no longer lists which pharmacies are a particular plan’s preferred pharmacies — those are network pharmacies that offer covered drugs at lower out-of-pocket costs than what you’d pay at a non-preferred pharmacy.

How to Start Searching for Medicare Plans

Now that you know how the Medicare Plan Finder has changed, here’s how to start searching for health and drug plans:

Set aside enough time. At the Medicare Rights Center, we recommend spending about an hour to navigate the Medicare Plan Finder log-in process, explore the tool, enter your drugs and view your search results.

Create a list of prescription drugs you take before beginning your search. A primary benefit of using Plan Finder is that you can create a custom list of the drugs you take, and then it will show you which plans cover your drugs and your estimated costs. Putting together a list of your drugs, their dosages and whether they are brand-name or generic will help you efficiently complete this portion of the process and get to your search results.

Keep scrolling. The benefits summary on the Plan Finder’s results page won’t provide all of the information about a Medicare plan, so click on plan details to learn more.

Plan Finder organizes health and drug plan details in one long list, which you can navigate by clicking on links on the left to jump to different sections of the page. For a full picture of a plan’s costs and benefits, be sure to scroll all the way through the list of plan details.

Call plans you’re considering to confirm all the Plan Finder’s coverage and cost information. Although the Plan Finder materials should be up to date, it’s wise to contact a plan directly for confirmation. Before enrolling in a plan, be sure it will cover your drugs and provide any extra benefits listed in Plan Finder. And ask which pharmacies are its preferred pharmacies, since the Plan Finder doesn’t say.

If you will be enrolling in a Medicare Advantage plan, call your health care providers to confirm that they accept the plan you intend to choose.

Use other resources for more information. You might want to visit the Medicare Rights Center’s site, where you can find a Medicare Interactive tool to learn the differences between Original Medicare and Medicare Advantage and questions to ask before joining a Medicare Advantage or Part D plan as well as a free Fall Open Enrollment Guide.

You could also contact your State Health Insurance Program (SHIP) or call Medicare at 1- 800-MEDICARE.

Fred Riccardi

By Fred Riccardi

Fred Riccardi is president of Medicare Rights Center, a national nonprofit consumer service organization working to ensure access to affordable health care for older adults and people with disabilities.

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Being curious, and trying new things, can serve us all well


When my father was forced to retire due to flagging health at 78, he found himself unmoored. He had started and ran his own business, a driving force for years. His whole identity was swaddled around his “purpose” of being Mr. Music  (his customers affectionately gave him the moniker which was also the name of his business, a home hi-fidelity/record & tape store which still operates today). What happened in the months that followed his retirement was watching a man roam around restless as a caged cat. He had no idea what to do with himself, how to “make himself useful.”

And then he found writing.

He found a way to self-propel into a world of meaning by writing, at his own direction, his life stories — through essays and poems and stories. He became consumed by it at times and all of us, his children, stood back in amazement that our father, whom we’d always known to be a savvy business owner, a smart cookie, an ace at poker and pool and golf, suddenly also was a damn good writer.

He penned, literally, his life in words. He had voice, authority and suddenly, a “repurpose.”

It brought him joy and safety in a new world of aging that he had to traverse.

Purpose Can Be Defined in Many Ways

Studies now show that having a purpose in life is not just enjoyable, it can make us healthier and more resilient, even affecting our very mortality. Researchers at the University of Michigan’s Department of Public Health found strong evidence that associates life purpose and mortality based on data from the U.S. Health and Retirement Study (HRS). HRS participants 50 and older with the lowest life purpose had a 2.4-fold increased risk of death compared to those with the highest life purpose.

The good news is that purpose can be defined in many ways.

Some people find purpose in their jobs, raising children, all kinds of hobbies and passions — from quilting to painting to playing music to being of service to others as volunteers. For my father, writing saved him from the dark tunnel of purposelessness and brought him out into the light.

As people move into their later years, there might be a temptation just to let go of the passions they’d once held dear. Perhaps they feel they no longer are “able” to do the things that brought them joy. Sometimes physical limitations do prevent that. My dad’s macular degeneration and progressive COPD eventually put a stop to his golfing and later driving a car altogether. With that went his independence, a huge loss.

Writing became his way of keeping his mind churning, his autonomy intact and his voice heard — his saving grace in so many ways.

The Benefits of Curiosity

As I watch older adults challenge themselves through writing, one thing strikes me: curiosity remains.

Just as children are curious moving within their world, that same human quality can serve us in our older years, too. When people decide to try new things, suddenly they are entering unknown (and potentially very rewarding) territory.

Take, for example, the retired school teacher who continues to volunteer at a nearby elementary school to help children learn to read. Or the unretired blacksmith artist who continues the rigorous work he has done all his life, creating incredible art and utilitarian pieces for others because he can’t imagine his world without a purposeful way to create something useful. Or the grandparents who have the pure joy of being able to help their children and forge close ties with their grandchildren. Both generations benefit because a choice was made to “continue.”

As we look toward our “golden” years, it’s actually very possible that they can become just that. Rather than grieve what we’re losing, we can open ourselves up to trying new things, especially those endeavors we seemed to never have enough time to do when we were busy being promoted in our jobs, raising children or running our households.

And to know that creating and living with purpose will benefit us just as much as physical exercise, challenge our brains and stimulate our thinking…what is there to lose?

Get busy. Make yourself useful.

By Angela Burton

Angela Burton is the Founder & Chief Writing Motivator of Feet to the Fire Writers’ Workshops®, a creative program that inspires adults to challenge themselves through expressive writing. Her particular brand of helping people find their voice and write authentic stories earned her a spot in Louisville’s WILD Accelerator for Female Founders program; Feet to the Fire Writers’ Workshops® launched nationally in 2018. Burton holds an MFA in Creative Writing from Vermont College of Fine Arts and a B.A. in English from the University of Louisville.