Five programs that provide assistance for struggling older adults
By Lisa Fields

Everyone of a certain age remembers Sally Struthers’ Save the Children TV commercials, encouraging viewers to improve the life of an impoverished child in a developing nation by sponsoring him or her for the price of a cup of coffee a day. Many organizations still let people sponsor underprivileged children. But if you’d rather sponsor a struggling older adult with limited resources, there are a number of programs available.

“Lots of older adults are barely making ends meet,” says Homa Rostami, board member of the California-based Adopt an Elder Foundation. “They fought in wars and are kind of forgotten. They might just need a [little] more a month.”

Programs for older adults in need can provide tangible results. If you’re hoping to make a difference in the lives of adults across the country or around the world, consider programs like these:

Unbound

This Kansas-based nonprofit can pair you with a 60-plus adult needing assistance who lives in a developing nation in Asia, Africa or Latin America, to help him or her age with dignity. Many older adults spent decades performing manual labor. Now, their health is declining, their mobility is limited and they may not have many social services available to them. Sponsors donate $36 per month, which provides older adults with food, medical care, support groups and recreational activities. Donors receive photos of, and letters from, their beneficiaries. More than half of donors are over 50.

“We often hear that our elders in the developing world and their sponsors are able to bond over similar challenges, such as illness, losing a spouse of other family member or children moving away,” says Andrew Kling, Unbound’s community outreach director. “Both the families we serve and our sponsors frequently tell us that the letters and photos they receive become cherished possessions.”

The program serves more than 31,000 elders from 18 countries and has allowed people to sponsor older adults since 1984.

Adopt an Elder

It isn’t safe for every older adult to continue living independently, but some can’t afford to move to assisted-living facilities. This nonprofit provides financial aid to older adults in Northern California, supplementing their incomes by $350 per month so they can live in facilities providing the appropriate level of care. This provides a needed financial boost since many people come up a few hundred dollars short of what they would need to stay in assisted living facilities.

Many are introduced to the program by their doctors or social workers if the professional is concerned that the older adult is no longer able to safely live alone. (The program itself isn’t involved with moving people directly into facilities.)

Donors typically provide $25 per month to the program. You won’t be paired with one individual, but you can interact with beneficiaries by distributing holiday gifts with volunteers in December. Beneficiaries appreciate the help they receive, which allows them to enter assisted-living communities for life.

“They always talk about the social engagement, having someone to talk to,” Rostami says. “They say, ‘It’s nice that I’m not alone anymore.’”

This year, the program has helped 72 older adults remain in assisted living facilities. The nonprofit has existed since 2001.

Adopt A Senior

Here, you can develop relationships with long-term-care facility residents, some of whom who have few or no visitors.

People donate $50 annually through this New Jersey-based nonprofit to provide every resident of five long-term-care facilities in New York and New Jersey with personalized birthday gifts, holiday gifts and two seasonal gifts. Volunteers visit the facilities monthly for birthday celebrations, games and conversations, which help ease residents’ loneliness. You can meet the person you’re paired with if you choose to hand-deliver gifts with volunteers during these events. Some people stay in touch by phone or letter.

“They consider us their ‘family,’ and we feel the same about them,” says Annye Cohen, Adopt A Senior’s president and co-founder. “Our motto is: Seniors should never be forgotten, and we strive to do that each and every day.”

The program serves 1,300 older adults. Since 2014, it has distributed more than 9,000 gifts.

Adopt a Native Elder

Many older adults in remote areas of the Navajo Reservation in Utah and Arizona live below the poverty line. This nonprofit provides assistance beyond what the reservation’s elder care programs can address.

Donors provide $200 annually, covering the cost of a year’s worth of food for an older adult. The program also provides Navajo elders with medicine, clothing, firewood and other essentials. Once you sign on through this Utah-based nonprofit, you’ll receive a photo of the elder you’re paired with, along with his or her contact information, and you’ll be encouraged to stay in touch.

“Friendships that last a lifetime may develop between the elders and people who adopt them,” says Linda Myers, founder and executive director of Adopt a Native Elder.

Since 1991, the program has helped more than 2,000 Navajo elders. Today, over 560 older adults are enrolled in the program.

Be a Santa To a Senior

With this program, you can deliver holiday gifts to older adults across the U.S. and Canada who are identified as at-risk for loneliness, which helps them feel like they’re a part of a meaningful community.

Those who are identified as potentially lonely by local organizations request simple necessities like blankets, gloves and personal care items. Once you receive someone’s wish list, you shop, then return with the requested gifts.

This Nebraska-based program extends to more than 200 Home Instead Senior Care franchises. Some locations organize delivery events, so if you want to meet the person whom you’ve shopped for, you may be able to connect face-to-face.

“One recipient last year said, ‘I haven’t received a gift in over 10 years, and it made me feel so good to open a gift and to just have something new,’” says Jeff Huber, president and CEO of Home Instead Senior Care. “We hope that these small moments help to alleviate feelings of loneliness, so seniors are not only happier, but healthier each holiday season.”

Since 2003, more than 700,000 older adults have received gifts, and more than 1.2 million gifts have been given through the program.

By Lisa Fields

Lisa Fields is a writer who covers psychology and health matters as they relate to the workplace. She publishes frequently in WebMD and Reader’s Digest.

Five programs that provide assistance for struggling older adults
By Lisa Fields

Everyone of a certain age remembers Sally Struthers’ Save the Children TV commercials, encouraging viewers to improve the life of an impoverished child in a developing nation by sponsoring him or her for the price of a cup of coffee a day. Many organizations still let people sponsor underprivileged children. But if you’d rather sponsor a struggling older adult with limited resources, there are a number of programs available.

“Lots of older adults are barely making ends meet,” says Homa Rostami, board member of the California-based Adopt an Elder Foundation. “They fought in wars and are kind of forgotten. They might just need a [little] more a month.”

Programs for older adults in need can provide tangible results. If you’re hoping to make a difference in the lives of adults across the country or around the world, consider programs like these:

Unbound

This Kansas-based nonprofit can pair you with a 60-plus adult needing assistance who lives in a developing nation in Asia, Africa or Latin America, to help him or her age with dignity. Many older adults spent decades performing manual labor. Now, their health is declining, their mobility is limited and they may not have many social services available to them. Sponsors donate $36 per month, which provides older adults with food, medical care, support groups and recreational activities. Donors receive photos of, and letters from, their beneficiaries. More than half of donors are over 50.

“We often hear that our elders in the developing world and their sponsors are able to bond over similar challenges, such as illness, losing a spouse of other family member or children moving away,” says Andrew Kling, Unbound’s community outreach director. “Both the families we serve and our sponsors frequently tell us that the letters and photos they receive become cherished possessions.”

The program serves more than 31,000 elders from 18 countries and has allowed people to sponsor older adults since 1984.

Adopt an Elder

It isn’t safe for every older adult to continue living independently, but some can’t afford to move to assisted-living facilities. This nonprofit provides financial aid to older adults in Northern California, supplementing their incomes by $350 per month so they can live in facilities providing the appropriate level of care. This provides a needed financial boost since many people come up a few hundred dollars short of what they would need to stay in assisted living facilities.

Many are introduced to the program by their doctors or social workers if the professional is concerned that the older adult is no longer able to safely live alone. (The program itself isn’t involved with moving people directly into facilities.)

Donors typically provide $25 per month to the program. You won’t be paired with one individual, but you can interact with beneficiaries by distributing holiday gifts with volunteers in December. Beneficiaries appreciate the help they receive, which allows them to enter assisted-living communities for life.

“They always talk about the social engagement, having someone to talk to,” Rostami says. “They say, ‘It’s nice that I’m not alone anymore.’”

This year, the program has helped 72 older adults remain in assisted living facilities. The nonprofit has existed since 2001.

Adopt A Senior

Here, you can develop relationships with long-term-care facility residents, some of whom who have few or no visitors.

People donate $50 annually through this New Jersey-based nonprofit to provide every resident of five long-term-care facilities in New York and New Jersey with personalized birthday gifts, holiday gifts and two seasonal gifts. Volunteers visit the facilities monthly for birthday celebrations, games and conversations, which help ease residents’ loneliness. You can meet the person you’re paired with if you choose to hand-deliver gifts with volunteers during these events. Some people stay in touch by phone or letter.

“They consider us their ‘family,’ and we feel the same about them,” says Annye Cohen, Adopt A Senior’s president and co-founder. “Our motto is: Seniors should never be forgotten, and we strive to do that each and every day.”

The program serves 1,300 older adults. Since 2014, it has distributed more than 9,000 gifts.

Adopt a Native Elder

Many older adults in remote areas of the Navajo Reservation in Utah and Arizona live below the poverty line. This nonprofit provides assistance beyond what the reservation’s elder care programs can address.

Donors provide $200 annually, covering the cost of a year’s worth of food for an older adult. The program also provides Navajo elders with medicine, clothing, firewood and other essentials. Once you sign on through this Utah-based nonprofit, you’ll receive a photo of the elder you’re paired with, along with his or her contact information, and you’ll be encouraged to stay in touch.

“Friendships that last a lifetime may develop between the elders and people who adopt them,” says Linda Myers, founder and executive director of Adopt a Native Elder.

Since 1991, the program has helped more than 2,000 Navajo elders. Today, over 560 older adults are enrolled in the program.

Be a Santa To a Senior

With this program, you can deliver holiday gifts to older adults across the U.S. and Canada who are identified as at-risk for loneliness, which helps them feel like they’re a part of a meaningful community.

Those who are identified as potentially lonely by local organizations request simple necessities like blankets, gloves and personal care items. Once you receive someone’s wish list, you shop, then return with the requested gifts.

This Nebraska-based program extends to more than 200 Home Instead Senior Care franchises. Some locations organize delivery events, so if you want to meet the person whom you’ve shopped for, you may be able to connect face-to-face.

“One recipient last year said, ‘I haven’t received a gift in over 10 years, and it made me feel so good to open a gift and to just have something new,’” says Jeff Huber, president and CEO of Home Instead Senior Care. “We hope that these small moments help to alleviate feelings of loneliness, so seniors are not only happier, but healthier each holiday season.”

Since 2003, more than 700,000 older adults have received gifts, and more than 1.2 million gifts have been given through the program.

By Lisa Fields

Lisa Fields is a writer who covers psychology and health matters as they relate to the workplace. She publishes frequently in WebMD and Reader’s Digest.

Katherine Kimes visits residents at Westminster Place, the personal care community at our Oakmont campus, every Tuesday with her therapy dog, Cash. Cash is an energetic poodle who makes his way around the community with three goals: to make our residents smile, to visit as many folks as he can and to find treats wherever they are hiding, which is usually in resident Bill Waddell’s pocket!

Photo caption: Katherine with Cash and Bill. 

Cash is a smart dog. When making rounds, he recognizes Bill’s door and knows that when he enters, a treat is waiting for him! Volunteers like Katherine and Cash gives our residents the chance to spend time with a pet, something they may have done prior to moving to their new Presbyterian SeniorCare Network home.

No bones about it, pet visits enrich the aging experience!

Katherine Kimes visits residents at Westminster Place, the personal care community at our Oakmont campus, every Tuesday with her therapy dog, Cash. Cash is an energetic poodle who makes his way around the community with three goals: to make our residents smile, to visit as many folks as he can and to find treats wherever they are hiding, which is usually in resident Bill Waddell’s pocket!

Photo caption: Katherine with Cash and Bill. 

Cash is a smart dog. When making rounds, he recognizes Bill’s door and knows that when he enters, a treat is waiting for him! Volunteers like Katherine and Cash gives our residents the chance to spend time with a pet, something they may have done prior to moving to their new Presbyterian SeniorCare Network home.

No bones about it, pet visits enrich the aging experience!

The contagious bacterial infection can be more serious for older adults
By Mark Ray

When you were a child, did you worry about monsters hiding under your bed or lurking behind your closet door? It turns out one monster — clostridium difficile, or C. diff — may actually be closer at hand, at least in hospitals and nursing homes.

Transmitted via fecal matter, the C. diff bacterial infection can cause severe diarrhea, nausea, fever, dehydration, abdominal pain, kidney failure and even death. Older adults are more vulnerable to it because of naturally weaker immune systems, more likelihood of underlying health issues and more time spent in health care settings.

1. diff is resistant to some antibiotics, but there are some shown to work against it. In serious and recurrent C. diff cases, patients may undergo a fecal transplant or surgery to remove a portion of the colon.
2. diff spores adhere to every imaginable surface, including toilet seats, faucet handles, doorknobs, linens, bedrails, nurse call buttons, chair arms, ceiling vents and even floors. A 2017 study in the United Kingdom detected it in floor corners in 86 percent of hospital rooms that had undergone routine cleaning.

Since its spores resist standard cleaning methods and alcohol-based hand wipes, C. diff is tough to eradicate. “We know those spores can last nine months or more in a room,” says Dr. Kate Mullane, an infectious disease specialist at The University of Chicago Medicine. “It takes a high concentration of bleach to kill the spores: a cup of bleach in a gallon of water.”

And killing the spores is critically important because C. diff itself is a killer. The most common microbial cause of health care-associated infections in the United States today, it causes nearly half a million infections and 15,000 deaths annually — almost as many deaths as drunk driving and HIV/AIDS combined,  according to the U.S. Centers for Disease Control and Prevention (CDC). Eighty percent of C. diff deaths occur among people 65 and older, and one in 11 patients in that age group dies within 30 days of diagnosis.

A two-pronged approach can keep this microscopic, but deadly killer, at bay. Prong one is antibiotic stewardship; prong two is infection control.

Antibiotic Stewardship

You’ve doubtless heard the world uses far too many antibiotics, wasting money and contributing to the growing problem of antimicrobial resistance. The Pew Charitable Trusts reported that 30 percent of outpatient antibiotic prescriptions in the U.S. are unnecessary (antibiotics prescribed for a viral infection, for example).

Doctors are getting more judicious in their use of antibiotics, but Mullane says patients should still talk with their doctors about the drugs they’re prescribing. If you can avoid antibiotics, or at least broad-spectrum antibiotics, you will be less vulnerable to C. diff. This is because, along with the bad bacteria the drugs are after, antibiotics also kill much of the good bacteria in our intestines. This leaves C. diff an opportunity to overwhelm the gut and cause illness.

1. Diff Infection Control

Given C. diff’s persistence in health care environments, it’s also important to prevent transmission between patients, health care workers and visitors — including people who aren’t symptomatic.

“We know at any one time, about 5 percent of the population is colonized with C. diff,” Mullane says. “They may not be sick with it, but they’re at least carrying it.”

The easiest way to stop transmission is with proper handwashing, according to Anna Barker., a researcher in the medical scientist training program at the University of Wisconsin-Madison. “Even with hospital-grade hand sanitizer, which in many cases is pretty similar to what you would buy out in the community, you do still need to use soap and water,” she says.

“It’s not only the soap and water (that gets rid of the germs), it’s the friction and having your hands under the tap water, which you just don’t get when you use (hand sanitizer) gel,” Barker says. A good rule of thumb to make sure you get rid of the germs: Wash your hands for as long as it takes to sing Happy Birthday to You.

But hand hygiene is just the beginning. In the April 2018 issue of the journal Clinical Infectious Diseases, Barker and two colleagues reported their research on the effectiveness of nine discrete C. diff hospital interventions, including everything from patient hand hygiene to terminal cleaning (deep cleaning of a room after a patient is discharged).

Using computer models, Barker and her colleagues found that daily room cleaning with a sporicidal cleaner plus screening for C. diff at the time of admission reduces hospital-associated infections by roughly 82 percent and asymptomatic colonization by about 91 percent.

“When hospitals try to combat their C. diff rates, they’ll end up doing lots of things at once,” Barker says. “This paper showed you can get a considerable reduction in C. diff with only those two interventions.”

What Patients Can Do

While patients don’t have much control over infection-control practices in a hospital or clinic, they can take two concrete actions.

The first is to ask health care providers if they’ve remembered to wash their hands.

“That’s easier said than done given everything we know about power dynamics and the patient-doctor relationship, but I think that really has a potential to make a big impact,” Barker says.

The other action, perhaps surprisingly, is to reduce the clutter in hospital patient rooms.

“One of the things we hear from the cleaning staff is that it’s very difficult to clean a patient’s room effectively if there are newspapers everywhere or books or food or other items throughout the room,” Barker says. “They can’t, at least at our institution, move the patient’s things for them.”

While decluttering your hospital room may not be quite as simple as switching on the lights to banish an under-bed monster, it can go a long way toward keeping you safe from C. diff.

Mark Ray is a freelance writer who has written for Scouting, Eagles’ Call, Presbyterians Today, Kentucky Homes & Gardens and other publications. He has also written, edited and/or contributed to a dozen books for the Boy Scouts and the Presbyterian and United Methodist churches.

The contagious bacterial infection can be more serious for older adults
By Mark Ray

When you were a child, did you worry about monsters hiding under your bed or lurking behind your closet door? It turns out one monster — clostridium difficile, or C. diff — may actually be closer at hand, at least in hospitals and nursing homes.

Transmitted via fecal matter, the C. diff bacterial infection can cause severe diarrhea, nausea, fever, dehydration, abdominal pain, kidney failure and even death. Older adults are more vulnerable to it because of naturally weaker immune systems, more likelihood of underlying health issues and more time spent in health care settings.

1. diff is resistant to some antibiotics, but there are some shown to work against it. In serious and recurrent C. diff cases, patients may undergo a fecal transplant or surgery to remove a portion of the colon.
2. diff spores adhere to every imaginable surface, including toilet seats, faucet handles, doorknobs, linens, bedrails, nurse call buttons, chair arms, ceiling vents and even floors. A 2017 study in the United Kingdom detected it in floor corners in 86 percent of hospital rooms that had undergone routine cleaning.

Since its spores resist standard cleaning methods and alcohol-based hand wipes, C. diff is tough to eradicate. “We know those spores can last nine months or more in a room,” says Dr. Kate Mullane, an infectious disease specialist at The University of Chicago Medicine. “It takes a high concentration of bleach to kill the spores: a cup of bleach in a gallon of water.”

And killing the spores is critically important because C. diff itself is a killer. The most common microbial cause of health care-associated infections in the United States today, it causes nearly half a million infections and 15,000 deaths annually — almost as many deaths as drunk driving and HIV/AIDS combined,  according to the U.S. Centers for Disease Control and Prevention (CDC). Eighty percent of C. diff deaths occur among people 65 and older, and one in 11 patients in that age group dies within 30 days of diagnosis.

A two-pronged approach can keep this microscopic, but deadly killer, at bay. Prong one is antibiotic stewardship; prong two is infection control.

Antibiotic Stewardship

You’ve doubtless heard the world uses far too many antibiotics, wasting money and contributing to the growing problem of antimicrobial resistance. The Pew Charitable Trusts reported that 30 percent of outpatient antibiotic prescriptions in the U.S. are unnecessary (antibiotics prescribed for a viral infection, for example).

Doctors are getting more judicious in their use of antibiotics, but Mullane says patients should still talk with their doctors about the drugs they’re prescribing. If you can avoid antibiotics, or at least broad-spectrum antibiotics, you will be less vulnerable to C. diff. This is because, along with the bad bacteria the drugs are after, antibiotics also kill much of the good bacteria in our intestines. This leaves C. diff an opportunity to overwhelm the gut and cause illness.

1. Diff Infection Control

Given C. diff’s persistence in health care environments, it’s also important to prevent transmission between patients, health care workers and visitors — including people who aren’t symptomatic.

“We know at any one time, about 5 percent of the population is colonized with C. diff,” Mullane says. “They may not be sick with it, but they’re at least carrying it.”

The easiest way to stop transmission is with proper handwashing, according to Anna Barker., a researcher in the medical scientist training program at the University of Wisconsin-Madison. “Even with hospital-grade hand sanitizer, which in many cases is pretty similar to what you would buy out in the community, you do still need to use soap and water,” she says.

“It’s not only the soap and water (that gets rid of the germs), it’s the friction and having your hands under the tap water, which you just don’t get when you use (hand sanitizer) gel,” Barker says. A good rule of thumb to make sure you get rid of the germs: Wash your hands for as long as it takes to sing Happy Birthday to You.

But hand hygiene is just the beginning. In the April 2018 issue of the journal Clinical Infectious Diseases, Barker and two colleagues reported their research on the effectiveness of nine discrete C. diff hospital interventions, including everything from patient hand hygiene to terminal cleaning (deep cleaning of a room after a patient is discharged).

Using computer models, Barker and her colleagues found that daily room cleaning with a sporicidal cleaner plus screening for C. diff at the time of admission reduces hospital-associated infections by roughly 82 percent and asymptomatic colonization by about 91 percent.

“When hospitals try to combat their C. diff rates, they’ll end up doing lots of things at once,” Barker says. “This paper showed you can get a considerable reduction in C. diff with only those two interventions.”

What Patients Can Do

While patients don’t have much control over infection-control practices in a hospital or clinic, they can take two concrete actions.

The first is to ask health care providers if they’ve remembered to wash their hands.

“That’s easier said than done given everything we know about power dynamics and the patient-doctor relationship, but I think that really has a potential to make a big impact,” Barker says.

The other action, perhaps surprisingly, is to reduce the clutter in hospital patient rooms.

“One of the things we hear from the cleaning staff is that it’s very difficult to clean a patient’s room effectively if there are newspapers everywhere or books or food or other items throughout the room,” Barker says. “They can’t, at least at our institution, move the patient’s things for them.”

While decluttering your hospital room may not be quite as simple as switching on the lights to banish an under-bed monster, it can go a long way toward keeping you safe from C. diff.

Mark Ray is a freelance writer who has written for Scouting, Eagles’ Call, Presbyterians Today, Kentucky Homes & Gardens and other publications. He has also written, edited and/or contributed to a dozen books for the Boy Scouts and the Presbyterian and United Methodist churches.

How to find a place that wants to be a real home
By Denise Logeland

Part of the Transforming Life as We Age Special Report

What makes a nursing home a good place for you or your parents? While “good” can mean a lot of things, it should include qualities like dignity and self-determination for the people who live there. The Pioneer Network offers tips on how to check for those qualities.

Formed 20 years ago, the nonprofit Pioneer Network is made up of professionals who work in long-term care, people who live in long-term care and families who advocate for them. The network, active nationally and through coalitions in 36 states, belongs to a broad-based movement in long-term care that is sometimes called simply “culture change.” That is a movement away from generic, system-based care and toward more individual, person-directed care. With culture change, residents have a large voice in the care they get and have as many of the freedoms they had in their earlier homes as possible.

You can find out if a nursing home is guided by the principles of culture change by asking specific questions when you visit to take a tour. A few examples:

• Can residents wake up when they want to in the morning?
• How do you get to know the people who live here?
• How do you build a sense of community and give those who live here a voice in how things are done?
• What is the turnover rate for the direct care workers on your staff?

There are 18 questions in all to ask at nursing homes, and a similar set of 16 to ask when looking at assisted living facilities. You can see the questions and the answers to listen for on the Pioneer Network website, where they are also available as downloads.

Denise Logeland is a writer and editor in Minneapolis who has covered business, health and health care. She is the author of Next Avenue's ebook, 10 Things Every Family Should Know: Aging With Dignity and Independence.

How to find a place that wants to be a real home
By Denise Logeland

Part of the Transforming Life as We Age Special Report

What makes a nursing home a good place for you or your parents? While “good” can mean a lot of things, it should include qualities like dignity and self-determination for the people who live there. The Pioneer Network offers tips on how to check for those qualities.

Formed 20 years ago, the nonprofit Pioneer Network is made up of professionals who work in long-term care, people who live in long-term care and families who advocate for them. The network, active nationally and through coalitions in 36 states, belongs to a broad-based movement in long-term care that is sometimes called simply “culture change.” That is a movement away from generic, system-based care and toward more individual, person-directed care. With culture change, residents have a large voice in the care they get and have as many of the freedoms they had in their earlier homes as possible.

You can find out if a nursing home is guided by the principles of culture change by asking specific questions when you visit to take a tour. A few examples:

• Can residents wake up when they want to in the morning?
• How do you get to know the people who live here?
• How do you build a sense of community and give those who live here a voice in how things are done?
• What is the turnover rate for the direct care workers on your staff?

There are 18 questions in all to ask at nursing homes, and a similar set of 16 to ask when looking at assisted living facilities. You can see the questions and the answers to listen for on the Pioneer Network website, where they are also available as downloads.

Denise Logeland is a writer and editor in Minneapolis who has covered business, health and health care. She is the author of Next Avenue's ebook, 10 Things Every Family Should Know: Aging With Dignity and Independence.

An oncologist grapples with letting patients suffer when there’s an alternative

By Grace Birnstengel

For some people facing a terminal illness or the end of life, transitioning to palliative care (care given to improve quality of life for patients with life-threatening diseases) can signify quitting. They see it as surrendering to what’s ailing them and giving up the fight. But Dr. Isaac Chan, a medical oncology fellow at Johns Hopkins Hospital, wishes people would look at palliative care differently. It just might provide the blessings of time and peace, he believes.

Chan understands that holding onto every ounce of life is an expected reaction, even if it means enduring more pain and suffering for little or no payoff. In an essay published in The Washington Post, he writes about the difficulty for patients in approaching the decision to continue with treatment or pursue palliative care. He sees that struggle all the time at the hospital.

“I am watching a 68-year-old man fall apart,” Chan writes. “He has been through five different types of chemotherapies, yet his kidney cancer continues to grow and metastasize, spreading to different organs. He now sits hunched in his wheelchair. With his worsening diarrhea, and sores in his mouth, he no longer eats with pleasure. Sleeping a few hours without pain has become a luxury.”

In the patient’s eyes, chemotherapy will help him live longer, and his goal is beating the cancer. When a doctor like Chan knows that’s not realistic, he’s put in a tough spot.

Palliative Care Can Grant Time and Peace

In his empathetic and thought-provoking essay, Chan grapples with balancing having frank conversations with patients, explaining the benefits of palliative care in their situations, with the top priority: respecting a patient’s wishes.

He explains to one patient that concentrating on reducing symptoms instead of treating his cancer would provide relief. And, he adds, studies show he could live longer with palliative care instead of having more chemotherapy.

As we’ve pointed out in previous Next Avenue reporting, palliative care has proven benefits of lowered stress and depression in patients and caregivers; reduced pain and better control of other symptoms and better clinical outcomes.

Though palliative care might seem like the obvious route to doctors like Chan, they have to meet patients where they’re at.

What This Doctor Has Learned About Palliative Care

“If the patients are not ready [for palliative care], instead of feeling relief, they may experience this advice as abandonment,” Chan writes.

Chan has learned that no matter what statistics or studies say about the clear benefits of palliative care in the cases of the terminal illnesses he treats every day, that’s not always going to be appealing or meaningful to patients. You can’t always apply logic or science to things as all-consuming or deep as the end of your life.

“Sometimes what our patients need most is just more time: time to accept the terminal diagnosis and time to grieve and hopefully find peace,” notes Chan.

Though the doctor’s perspective is not the one that truly matters at the end of someone’s life, it’s interesting to hear from Chan about how he views these challenging issues where doctors are assessing not only physical needs, but emotional and spiritual ones as well.

“The biggest lesson I have learned is that our role is to support our patients so that they can have they dignity to make these difficult choices and feel empowered to make their own paths, no matter how frightening the decision may be,” Chan says.

By Grace Birnstengel

Grace Birnstengel is an editor at Next Avenue. Her work has appeared in Minneapolis-St. Paul's alt-weekly City Pages, the St. Paul Pioneer Press, Stereogum.com, The Riveter Magazine, VICE's Live Nation TV, 89.3 The Current and more. She most recently worked as an editor for a B2B magazine in New York City. She holds a degree in journalism and gender, women and sexuality studies from the University of Minnesota–Twin Cities where she was the editor-in-chief of the student magazine, The Wake. Reach her by email at gbirnstengel@nextavenue.org.

An oncologist grapples with letting patients suffer when there’s an alternative

By Grace Birnstengel

For some people facing a terminal illness or the end of life, transitioning to palliative care (care given to improve quality of life for patients with life-threatening diseases) can signify quitting. They see it as surrendering to what’s ailing them and giving up the fight. But Dr. Isaac Chan, a medical oncology fellow at Johns Hopkins Hospital, wishes people would look at palliative care differently. It just might provide the blessings of time and peace, he believes.

Chan understands that holding onto every ounce of life is an expected reaction, even if it means enduring more pain and suffering for little or no payoff. In an essay published in The Washington Post, he writes about the difficulty for patients in approaching the decision to continue with treatment or pursue palliative care. He sees that struggle all the time at the hospital.

“I am watching a 68-year-old man fall apart,” Chan writes. “He has been through five different types of chemotherapies, yet his kidney cancer continues to grow and metastasize, spreading to different organs. He now sits hunched in his wheelchair. With his worsening diarrhea, and sores in his mouth, he no longer eats with pleasure. Sleeping a few hours without pain has become a luxury.”

In the patient’s eyes, chemotherapy will help him live longer, and his goal is beating the cancer. When a doctor like Chan knows that’s not realistic, he’s put in a tough spot.

Palliative Care Can Grant Time and Peace

In his empathetic and thought-provoking essay, Chan grapples with balancing having frank conversations with patients, explaining the benefits of palliative care in their situations, with the top priority: respecting a patient’s wishes.

He explains to one patient that concentrating on reducing symptoms instead of treating his cancer would provide relief. And, he adds, studies show he could live longer with palliative care instead of having more chemotherapy.

As we’ve pointed out in previous Next Avenue reporting, palliative care has proven benefits of lowered stress and depression in patients and caregivers; reduced pain and better control of other symptoms and better clinical outcomes.

Though palliative care might seem like the obvious route to doctors like Chan, they have to meet patients where they’re at.

What This Doctor Has Learned About Palliative Care

“If the patients are not ready [for palliative care], instead of feeling relief, they may experience this advice as abandonment,” Chan writes.

Chan has learned that no matter what statistics or studies say about the clear benefits of palliative care in the cases of the terminal illnesses he treats every day, that’s not always going to be appealing or meaningful to patients. You can’t always apply logic or science to things as all-consuming or deep as the end of your life.

“Sometimes what our patients need most is just more time: time to accept the terminal diagnosis and time to grieve and hopefully find peace,” notes Chan.

Though the doctor’s perspective is not the one that truly matters at the end of someone’s life, it’s interesting to hear from Chan about how he views these challenging issues where doctors are assessing not only physical needs, but emotional and spiritual ones as well.

“The biggest lesson I have learned is that our role is to support our patients so that they can have they dignity to make these difficult choices and feel empowered to make their own paths, no matter how frightening the decision may be,” Chan says.

By Grace Birnstengel

Grace Birnstengel is an editor at Next Avenue. Her work has appeared in Minneapolis-St. Paul's alt-weekly City Pages, the St. Paul Pioneer Press, Stereogum.com, The Riveter Magazine, VICE's Live Nation TV, 89.3 The Current and more. She most recently worked as an editor for a B2B magazine in New York City. She holds a degree in journalism and gender, women and sexuality studies from the University of Minnesota–Twin Cities where she was the editor-in-chief of the student magazine, The Wake. Reach her by email at gbirnstengel@nextavenue.org.

Know what's offered so you can make informed decisions ahead of time
By John F. Wasik

Part of the Living to the End of Life Special Report

(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)

More than once in my life, I wish I knew more about hospice care, which is a sustained focus on quality-of-life near the end of a journey. A deeper working knowledge would have made the closing days of several loved ones’ lives more comfortable.

Yet no doctor or adviser even suggested hospice care to my family as we grappled with the end stages of cancer. It was only later that I discovered how much hospice care has to offer — and how millions of families can benefit from its humane mode of care.

What Hospice Can Do

Generally, hospice is requested by a doctor who gives a prognosis of six months or less. It’s usually covered by health insurance plans and Medicare.  Some life insurance policies are even offering riders that provide “accelerated benefits” for the terminally ill. What surprised me, sadly after the fact, was how much hospice had to offer.

Keep in mind that hospice is a subset of palliative care, which can be provided to any patient, regardless of whether he or she is diagnosed with a terminal illness. This maximizes the patient’s overall comfort, reduces chronic pain and focuses on bolstering quality of life. Think dignity and humane decisions instead of dehumanizing technology and relentless treatment.

When a doctor “certifies” for hospice care, that triggers a range of services that will be covered by Medicare Part A. In addition to medical and nursing services, also provided are social work, grief counseling and even physical and occupational therapy. The emphasis is on accommodating the entire family and enhancing the patient’s comfort. Here’s how the Medicare hospice care benefit works if you need, and qualify for, it:

• Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill; that is, you’re expected to live six months or fewer. Note: Only your hospice doctor and your regular doctor can certify that you’re terminally ill and have a life expectancy of six months or fewer.
• You accept palliative care for comfort instead of conventional care to cure your illness.
• You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
• After six months, you may continue to receive hospice care as long as the hospice medical director or hospice doctor re-certifies — at a face-to-face meeting — that you’re terminally ill.

Medicare is actually fairly generous on what it covers, paying for “any other Medicare-covered services needed to manage your pain and other symptoms related to your terminal illness and related conditions, as recommended by your hospice team.”

What Hospice Doesn’t Do

Most hospice care can be offered at home or in a non-medical facility, which includes long-term care settings such as assisted living and memory care. Hospice, however, doesn’t cover room and board fees at senior communities.

Instead of providing endless surgeries and treatments, hospice focuses exclusively on the comfort of the patient. The palliative portion of the care may offer an array of pain medications while not treating the cause of the terminal illness.

If a patient is suffering from cancer, for example, he or she would be offered extensive pain-killing drugs, but not radiation or chemotherapy. Frequent trips to hospital emergency rooms are generally avoided.

Medicare also specifies what’s not covered by hospice care. Unless a facility is approved to provide this kind of care, you may not receive reimbursement. You can’t assume that every institution is qualified. Here are some additional requirements, according to the National Hospice and Palliative Care Organization:

• In addition to federal rules, there are state licensing requirements that must be met by hospice programs for them to deliver care.
• Hospices must periodically undergo inspection to be sure they are meeting regulatory standards to maintain their license to operate and the certification that permits Medicare reimbursement.
• A growing number of hospice programs have their own hospice facilities or have arrangements with other facilities. Some patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out — well before hospice may be needed — if insurance or any other payer covers this type of care or if patients or families will be responsible for payment.

Plan for Hospice When You’re Healthy

One of the most granite-like barriers for families considering hospice care as an option is that they’ve seemingly admitted defeat in trying to battle terminal illnesses such as cancer.

“People think that end-of-life decisions are things that only doctors should deal with,” says Dr. Carolyn McClanahan of Jacksonville, Fla. “We need to change the conversation.”

Yet reframing the end-of-life decision, McClanahan says, should concentrate on life quality, which should be first defined by patients and families, not medical institutions.

What’s the best way to approach the hospice decision? Make it a family conversation. Consult with doctors and other trusted advisers such as financial planners and estate-planning lawyers. Have your loved one and family talk it through with hospice or palliative care professionals. You’ll also need to get wills, trusts, powers of attorney and beneficiary designations for assets and insurance in order.

While making the decision to enter into hospice care is perhaps one of the most agonizing decisions a family can make, many wait too long to seek this specialized care. The average length of stay in hospice care is less than 70 days, according to the National Hospice and Palliative Care Organization. Only 12 percent of people in hospice remain in hospice past 180 days.

“Plan when you’re healthy,” advises McClanahan.

At the very least, educate your family on the benefits of hospice and palliative care. Although it won’t make end-of-life decisions any easier, it may ease the anguish when the time comes.

By John F. Wasik

John Wasik is the author of Lightning Strikes: Timeless Lessons in Creativity from the Life and Work of Nikolas Tesla (Sterling, 2016) and 16 other books.

Know what's offered so you can make informed decisions ahead of time
By John F. Wasik

Part of the Living to the End of Life Special Report

(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)

More than once in my life, I wish I knew more about hospice care, which is a sustained focus on quality-of-life near the end of a journey. A deeper working knowledge would have made the closing days of several loved ones’ lives more comfortable.

Yet no doctor or adviser even suggested hospice care to my family as we grappled with the end stages of cancer. It was only later that I discovered how much hospice care has to offer — and how millions of families can benefit from its humane mode of care.

What Hospice Can Do

Generally, hospice is requested by a doctor who gives a prognosis of six months or less. It’s usually covered by health insurance plans and Medicare.  Some life insurance policies are even offering riders that provide “accelerated benefits” for the terminally ill. What surprised me, sadly after the fact, was how much hospice had to offer.

Keep in mind that hospice is a subset of palliative care, which can be provided to any patient, regardless of whether he or she is diagnosed with a terminal illness. This maximizes the patient’s overall comfort, reduces chronic pain and focuses on bolstering quality of life. Think dignity and humane decisions instead of dehumanizing technology and relentless treatment.

When a doctor “certifies” for hospice care, that triggers a range of services that will be covered by Medicare Part A. In addition to medical and nursing services, also provided are social work, grief counseling and even physical and occupational therapy. The emphasis is on accommodating the entire family and enhancing the patient’s comfort. Here’s how the Medicare hospice care benefit works if you need, and qualify for, it:

• Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill; that is, you’re expected to live six months or fewer. Note: Only your hospice doctor and your regular doctor can certify that you’re terminally ill and have a life expectancy of six months or fewer.
• You accept palliative care for comfort instead of conventional care to cure your illness.
• You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
• After six months, you may continue to receive hospice care as long as the hospice medical director or hospice doctor re-certifies — at a face-to-face meeting — that you’re terminally ill.

Medicare is actually fairly generous on what it covers, paying for “any other Medicare-covered services needed to manage your pain and other symptoms related to your terminal illness and related conditions, as recommended by your hospice team.”

What Hospice Doesn’t Do

Most hospice care can be offered at home or in a non-medical facility, which includes long-term care settings such as assisted living and memory care. Hospice, however, doesn’t cover room and board fees at senior communities.

Instead of providing endless surgeries and treatments, hospice focuses exclusively on the comfort of the patient. The palliative portion of the care may offer an array of pain medications while not treating the cause of the terminal illness.

If a patient is suffering from cancer, for example, he or she would be offered extensive pain-killing drugs, but not radiation or chemotherapy. Frequent trips to hospital emergency rooms are generally avoided.

Medicare also specifies what’s not covered by hospice care. Unless a facility is approved to provide this kind of care, you may not receive reimbursement. You can’t assume that every institution is qualified. Here are some additional requirements, according to the National Hospice and Palliative Care Organization:

• In addition to federal rules, there are state licensing requirements that must be met by hospice programs for them to deliver care.
• Hospices must periodically undergo inspection to be sure they are meeting regulatory standards to maintain their license to operate and the certification that permits Medicare reimbursement.
• A growing number of hospice programs have their own hospice facilities or have arrangements with other facilities. Some patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out — well before hospice may be needed — if insurance or any other payer covers this type of care or if patients or families will be responsible for payment.

Plan for Hospice When You’re Healthy

One of the most granite-like barriers for families considering hospice care as an option is that they’ve seemingly admitted defeat in trying to battle terminal illnesses such as cancer.

“People think that end-of-life decisions are things that only doctors should deal with,” says Dr. Carolyn McClanahan of Jacksonville, Fla. “We need to change the conversation.”

Yet reframing the end-of-life decision, McClanahan says, should concentrate on life quality, which should be first defined by patients and families, not medical institutions.

What’s the best way to approach the hospice decision? Make it a family conversation. Consult with doctors and other trusted advisers such as financial planners and estate-planning lawyers. Have your loved one and family talk it through with hospice or palliative care professionals. You’ll also need to get wills, trusts, powers of attorney and beneficiary designations for assets and insurance in order.

While making the decision to enter into hospice care is perhaps one of the most agonizing decisions a family can make, many wait too long to seek this specialized care. The average length of stay in hospice care is less than 70 days, according to the National Hospice and Palliative Care Organization. Only 12 percent of people in hospice remain in hospice past 180 days.

“Plan when you’re healthy,” advises McClanahan.

At the very least, educate your family on the benefits of hospice and palliative care. Although it won’t make end-of-life decisions any easier, it may ease the anguish when the time comes.

By John F. Wasik

John Wasik is the author of Lightning Strikes: Timeless Lessons in Creativity from the Life and Work of Nikolas Tesla (Sterling, 2016) and 16 other books.

How to cope when other relatives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

How to cope when other relatives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

What person-centered care means and how you can get it

By Patricia Corrigan

The way patients and health care providers think about health care delivery is changing, with an increasing desire to involve patients in decisions and planning. Today, many providers also work to meet patients’ needs that go beyond medical treatments. This philosophy is known as person-centered care.

The SCAN Foundation, an independent public charity (and funder of Next Avenue), defines that philosophy as putting older adults “at the center of the decision-making process” by making use of a care team “that considers the full range of needs of individuals and their families.”

Rebecca Kirch, executive vice president of health care quality and value at the nonprofit National Patient Advocate Foundation in Washington, D.C., is a proponent of the philosophy. “So often in our health care system, when we are asked what’s the matter, the provider’s response to our answer doesn’t always align with what matters in our lives to us or to our families,” Kirch says.

What does person-centered care look like, and how can you get it? Here are some examples and advice to help you start a conversation with your doctor about a broader range of care for yourself or a loved one:

‘We Listen to What Patients Need’

Sharp Rees-Stealy Medical Group in San Diego has committed itself to person-centered care, with the goals of improving communication channels and offering more support services.

“Medical groups across the country are paying more attention to what patients need and want because patient involvement produces the best outcomes,” says Janet Appel, Sharp Rees-Stealy’s director of population health. The organization serves some 220,000 patients who make more than a million doctor visits each year.

Appel added, “If people are not engaged in how they receive care, their health goals will most likely not be met.” The medical group practices person-centered care in several ways, including:

• Phone or video appointments
• Webinars on topics such as diabetes education
• Expanded evening and weekend hours
• Case management services
• Support programs
• Nurse navigators to help with difficult diagnoses
• Texting to receive reminders and health tips

“The texting program is especially popular,” Appel says. “Patients choose how often to receive texts with tips for healthy living, reminders about appointments or information on where and when flu shots are available. They can also text us with questions, and texting answers back to them helps us stay connected at the patients’ convenience.”

Appel noted that Sharp Rees-Stealy actively seeks feedback so it can make changes that will help communications and practices evolve based on what patients want. “We listen to what patients need in order to improve patient engagement to improve healthy outcomes,” she says.

Delivering Care Where Patients Are Is ‘Critical’

At Inland Empire Health Plan (IEHP), a not-for-profit Medi-Cal (California’s Medicaid program) and Medicare health plan, the focus on person-centered care extends to individuals who may need it the most. Based in Rancho Cucamonga, IEHP is a network of more than 6,000 providers and 2,000 team members who serve more than 1.2 million people.

Through the Affordable Care Act, a large pilot program called the Behavioral Health Integration and Complex Care Initiative allows IEHP to provide person-centered care for its low-income plan members at locations convenient to them.

Working with a dozen agencies, IEHP has staff at 30 sites. “We’ve put nurses, behavioral health specialists and care coordinators at primary care offices, behavioral health clinics, substance abuse treatment clinics, adult day care centers, assisted living centers and pain management clinics,” says Dr. Bradley P. Gilbert, IEHP’s chief executive officer.

“Many people we serve face many complicated issues, including with their health, housing, transportation and other challenges, so making sure they are part of the planning and then delivering care to them where they are is critical,” Gilbert says.

The project has made significant improvements in people’s health, based on measurements regarding depression, anxiety, blood pressure and more, Gilbert says. “We’ve had great feedback from members, and providers also say they like the structure of the health care delivery.”

Currently, the pilot program is in transition. The number of sites is increasing, and nurse care managers, social workers and community health workers are being added at each. Plus, IEHP is working to house high-risk members who are homeless.

Ask Your Doctor About Person-Centered Care

What about your needs?

Is it a hardship to arrange transportation for X-rays, screenings or blood tests done across town from your primary physician’s office? Maybe you see specialists in two separate health care systems and you want them to better coordinate your care. Could you benefit from a talk with a social worker about local agencies that help pay some living costs?

Speak up, the experts advise.

“Let your voice be heard,” Appel says. “Ask what patient-centered care means at your doctor’s office, and if it’s not available, ask how you can help get that started.” You may be surprised, she adds, at the doctor’s willingness to listen.

“The medical world has gotten into what retail has done all along — listening to the consumers and then drawing them in by offering what the consumers want,” she says. “Today, there is a lot of competition, with many places to go for health care.”

Person-centered care can be especially important when individuals are coping with serious illness. Kirch, at the National Patient Advocate Foundation, gave this example: “Palliative care, now part of mainstream medicine, presents a bullet-proof case for person-centered care that aligns treatment with the goals and the specific needs of the person and the family affected, rather than focusing only on the disease. Providers must ask about those goals, document them and honor them.”

‘What We Need Now is More Public Demand’

Like Appel, Kirch encourages speaking up for what you want from your provider. “Public demand makes medical practices change faster than any policy or payment incentive,” she says.

How would Kirch assess the status of person-centered care in the U.S. today? “We have more than a toehold, but not yet a foothold,” she says. “We have demonstration programs in place in some pockets of the country, but it’s not yet scaled to where it needs to be. Still, I’m optimistic. What we need now is more public demand.”

© Next Avenue - 2018. All rights reserved.

What person-centered care means and how you can get it

By Patricia Corrigan

The way patients and health care providers think about health care delivery is changing, with an increasing desire to involve patients in decisions and planning. Today, many providers also work to meet patients’ needs that go beyond medical treatments. This philosophy is known as person-centered care.

The SCAN Foundation, an independent public charity (and funder of Next Avenue), defines that philosophy as putting older adults “at the center of the decision-making process” by making use of a care team “that considers the full range of needs of individuals and their families.”

Rebecca Kirch, executive vice president of health care quality and value at the nonprofit National Patient Advocate Foundation in Washington, D.C., is a proponent of the philosophy. “So often in our health care system, when we are asked what’s the matter, the provider’s response to our answer doesn’t always align with what matters in our lives to us or to our families,” Kirch says.

What does person-centered care look like, and how can you get it? Here are some examples and advice to help you start a conversation with your doctor about a broader range of care for yourself or a loved one:

‘We Listen to What Patients Need’

Sharp Rees-Stealy Medical Group in San Diego has committed itself to person-centered care, with the goals of improving communication channels and offering more support services.

“Medical groups across the country are paying more attention to what patients need and want because patient involvement produces the best outcomes,” says Janet Appel, Sharp Rees-Stealy’s director of population health. The organization serves some 220,000 patients who make more than a million doctor visits each year.

Appel added, “If people are not engaged in how they receive care, their health goals will most likely not be met.” The medical group practices person-centered care in several ways, including:

• Phone or video appointments
• Webinars on topics such as diabetes education
• Expanded evening and weekend hours
• Case management services
• Support programs
• Nurse navigators to help with difficult diagnoses
• Texting to receive reminders and health tips

“The texting program is especially popular,” Appel says. “Patients choose how often to receive texts with tips for healthy living, reminders about appointments or information on where and when flu shots are available. They can also text us with questions, and texting answers back to them helps us stay connected at the patients’ convenience.”

Appel noted that Sharp Rees-Stealy actively seeks feedback so it can make changes that will help communications and practices evolve based on what patients want. “We listen to what patients need in order to improve patient engagement to improve healthy outcomes,” she says.

Delivering Care Where Patients Are Is ‘Critical’

At Inland Empire Health Plan (IEHP), a not-for-profit Medi-Cal (California’s Medicaid program) and Medicare health plan, the focus on person-centered care extends to individuals who may need it the most. Based in Rancho Cucamonga, IEHP is a network of more than 6,000 providers and 2,000 team members who serve more than 1.2 million people.

Through the Affordable Care Act, a large pilot program called the Behavioral Health Integration and Complex Care Initiative allows IEHP to provide person-centered care for its low-income plan members at locations convenient to them.

Working with a dozen agencies, IEHP has staff at 30 sites. “We’ve put nurses, behavioral health specialists and care coordinators at primary care offices, behavioral health clinics, substance abuse treatment clinics, adult day care centers, assisted living centers and pain management clinics,” says Dr. Bradley P. Gilbert, IEHP’s chief executive officer.

“Many people we serve face many complicated issues, including with their health, housing, transportation and other challenges, so making sure they are part of the planning and then delivering care to them where they are is critical,” Gilbert says.

The project has made significant improvements in people’s health, based on measurements regarding depression, anxiety, blood pressure and more, Gilbert says. “We’ve had great feedback from members, and providers also say they like the structure of the health care delivery.”

Currently, the pilot program is in transition. The number of sites is increasing, and nurse care managers, social workers and community health workers are being added at each. Plus, IEHP is working to house high-risk members who are homeless.

Ask Your Doctor About Person-Centered Care

What about your needs?

Is it a hardship to arrange transportation for X-rays, screenings or blood tests done across town from your primary physician’s office? Maybe you see specialists in two separate health care systems and you want them to better coordinate your care. Could you benefit from a talk with a social worker about local agencies that help pay some living costs?

Speak up, the experts advise.

“Let your voice be heard,” Appel says. “Ask what patient-centered care means at your doctor’s office, and if it’s not available, ask how you can help get that started.” You may be surprised, she adds, at the doctor’s willingness to listen.

“The medical world has gotten into what retail has done all along — listening to the consumers and then drawing them in by offering what the consumers want,” she says. “Today, there is a lot of competition, with many places to go for health care.”

Person-centered care can be especially important when individuals are coping with serious illness. Kirch, at the National Patient Advocate Foundation, gave this example: “Palliative care, now part of mainstream medicine, presents a bullet-proof case for person-centered care that aligns treatment with the goals and the specific needs of the person and the family affected, rather than focusing only on the disease. Providers must ask about those goals, document them and honor them.”

‘What We Need Now is More Public Demand’

Like Appel, Kirch encourages speaking up for what you want from your provider. “Public demand makes medical practices change faster than any policy or payment incentive,” she says.

How would Kirch assess the status of person-centered care in the U.S. today? “We have more than a toehold, but not yet a foothold,” she says. “We have demonstration programs in place in some pockets of the country, but it’s not yet scaled to where it needs to be. Still, I’m optimistic. What we need now is more public demand.”

© Next Avenue - 2018. All rights reserved.

How to cope when other realtives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

How to cope when other realtives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

An immersive multimedia environment may give people a sense of purpose

By Shayla Thiel Stern
September 7, 2018

Part of the Transforming Life as We Age Special Report

What if people with dementia, Alzheimer’s or cognitive impairment could enter a world that is comfortable, beautiful, friendly — and that they could control?

Too often, memory loss means losing a sense of identity and control over your living space. Mandy Salomon, a researcher-turned-entrepreneur, wants to change that.

Her research involved not only learning more about engagement with people who have dementia, but also how to build an online platform that would provide a means for interaction so she could take her research from theoretical to real-world application. Salomon named the app and its multimedia world “Deva World,” and co-founded (with Serge Soudoplatoff) a Silicon Valley tech startup, Mentia, which is getting Deva World into the hands of people with Alzheimer’s and their caregivers. I recently interviewed Salomon about her research and company and their goals for impacting people with dementia, technology-entrepreneur developed an online game — really, a virtual world that people with dementia can access with a tablet — that she hopes will help people with dementia regain a sense of self.  After a career in media, Salomon went to graduate school at Swinburne University of Technology in Melbourne, Australia to study virtual communities and identity. Her doctoral work resulted in a dissertation titled, “Finding Self in a Virtual World: Digital Engagement for People with Moderate to Advanced Dementia.”

Next Avenue: Why did you decide to build Deva World?

Mandy Salomon: People really started to think in the 1990s about expressing a social self in order to be well, in spite of the neurological diseases they may have had. So you would look at people with dementia and Alzheimer’s, and there was the biomedical disability — the attack on the brain — but there was also this social disability that comes with losing the opportunity to express who you are.

A sense of self becomes so depleted in people with dementia, and with that lower self-esteem, and with that inability to express who you are and have others understand, often comes depression, anxiety, agitation and all the behaviors that then people try to make better with drugs.

I previously had worked in media for many years, and did research within digital media, and it seemed wrong that the digital world was letting down people with cognitive impairment like this. Deva World came about because I decided to look at how we can take the underlying stimuli of the engagement and enrichment activities that you would get in a person-centered assisted living residence, and take that underlying stimuli and see them as means almost that you could import into a virtual environment. I thought it might be an alternative for people and a means of rebuilding a sense of self.

So, you created a virtual world where people with dementia can help an avatar do various things around her home and garden. How does this work? 

A virtual companion greets the people who open the Deva World app — a friendly person who sometimes needs assistance, sometimes congratulates assistance given, sometimes makes suggestions. In our world, Julie — we call her Julie because she’s based on Julie Andrews — needs help with choosing a picture to put on the wall or putting on music, and everything is contextually placed in the game: If want to find the music, you find the record player in the sitting room because that’s where music is.

Why the focus on Julie, a character, rather than from their own first-person perspective?  

In focus groups that I ran in my research, it was very clear that people with cognitive disabilities still want to be valued as someone who can help and give assistance. Some of the caregivers spoke very movingly about how even some of the most disabled people would go out of their way to help another person.

Everything is based on the sort of best practice thinking around person-centered care. They also will have an in-person companion — a caregiver or care companion who will talk to them and ask them about the choices they make in Deva World.

How do people with dementia who play in Deva World react? 

The person with dementia will come up with their own stories. They’ll tack on something that will remind them of something, and then the care companion has to sort of draw that story out that’s part of the thing. A lot of interaction occurs. But if you just expect it to be like a video game where everything happens for you, it’s not so much like that. It’s more like a narrative, and you draw stories out as you move through and explore and navigate.

Are people, often older adults who might not have experience in online gaming or using a tablet, able to figure out the game? 

The platform was co-designed with people who were receiving memory care. I worked with them to observe their interactions and see what kinds of interactions on the tablet were easy for them. Could they swipe? Or was it just tapping? Or could they zoom? And what kind of dexterity was required?  And also what stimuli they responded to in terms of graphical design. Things that were too messy had to be simplified. Things that were too dark had to be lightened, colors had to be bright. All those sorts of design elements were determined after working with with people in assisted living and full-time memory care.

How can people play in Deva World? 

Well, first, it’s on a touch screen tablet. It can be either an iOS or an Android-based tablet, any tablet. A caregiver should go to our website and join. The first month is free [after that, it’s $20 a month for individuals]. You will set up your profile there and then go to the App Store for an iPad or Google Play store for an Android or other tablets, and once you download, you are ready to begin exploring.

An immersive multimedia environment may give people a sense of purpose

By Shayla Thiel Stern
September 7, 2018

Part of the Transforming Life as We Age Special Report

What if people with dementia, Alzheimer’s or cognitive impairment could enter a world that is comfortable, beautiful, friendly — and that they could control?

Too often, memory loss means losing a sense of identity and control over your living space. Mandy Salomon, a researcher-turned-entrepreneur, wants to change that.

Her research involved not only learning more about engagement with people who have dementia, but also how to build an online platform that would provide a means for interaction so she could take her research from theoretical to real-world application. Salomon named the app and its multimedia world “Deva World,” and co-founded (with Serge Soudoplatoff) a Silicon Valley tech startup, Mentia, which is getting Deva World into the hands of people with Alzheimer’s and their caregivers. I recently interviewed Salomon about her research and company and their goals for impacting people with dementia, technology-entrepreneur developed an online game — really, a virtual world that people with dementia can access with a tablet — that she hopes will help people with dementia regain a sense of self.  After a career in media, Salomon went to graduate school at Swinburne University of Technology in Melbourne, Australia to study virtual communities and identity. Her doctoral work resulted in a dissertation titled, “Finding Self in a Virtual World: Digital Engagement for People with Moderate to Advanced Dementia.”

Next Avenue: Why did you decide to build Deva World?

Mandy Salomon: People really started to think in the 1990s about expressing a social self in order to be well, in spite of the neurological diseases they may have had. So you would look at people with dementia and Alzheimer’s, and there was the biomedical disability — the attack on the brain — but there was also this social disability that comes with losing the opportunity to express who you are.

A sense of self becomes so depleted in people with dementia, and with that lower self-esteem, and with that inability to express who you are and have others understand, often comes depression, anxiety, agitation and all the behaviors that then people try to make better with drugs.

I previously had worked in media for many years, and did research within digital media, and it seemed wrong that the digital world was letting down people with cognitive impairment like this. Deva World came about because I decided to look at how we can take the underlying stimuli of the engagement and enrichment activities that you would get in a person-centered assisted living residence, and take that underlying stimuli and see them as means almost that you could import into a virtual environment. I thought it might be an alternative for people and a means of rebuilding a sense of self.

So, you created a virtual world where people with dementia can help an avatar do various things around her home and garden. How does this work? 

A virtual companion greets the people who open the Deva World app — a friendly person who sometimes needs assistance, sometimes congratulates assistance given, sometimes makes suggestions. In our world, Julie — we call her Julie because she’s based on Julie Andrews — needs help with choosing a picture to put on the wall or putting on music, and everything is contextually placed in the game: If want to find the music, you find the record player in the sitting room because that’s where music is.

Why the focus on Julie, a character, rather than from their own first-person perspective?  

In focus groups that I ran in my research, it was very clear that people with cognitive disabilities still want to be valued as someone who can help and give assistance. Some of the caregivers spoke very movingly about how even some of the most disabled people would go out of their way to help another person.

Everything is based on the sort of best practice thinking around person-centered care. They also will have an in-person companion — a caregiver or care companion who will talk to them and ask them about the choices they make in Deva World.

How do people with dementia who play in Deva World react? 

The person with dementia will come up with their own stories. They’ll tack on something that will remind them of something, and then the care companion has to sort of draw that story out that’s part of the thing. A lot of interaction occurs. But if you just expect it to be like a video game where everything happens for you, it’s not so much like that. It’s more like a narrative, and you draw stories out as you move through and explore and navigate.

Are people, often older adults who might not have experience in online gaming or using a tablet, able to figure out the game? 

The platform was co-designed with people who were receiving memory care. I worked with them to observe their interactions and see what kinds of interactions on the tablet were easy for them. Could they swipe? Or was it just tapping? Or could they zoom? And what kind of dexterity was required?  And also what stimuli they responded to in terms of graphical design. Things that were too messy had to be simplified. Things that were too dark had to be lightened, colors had to be bright. All those sorts of design elements were determined after working with with people in assisted living and full-time memory care.

How can people play in Deva World? 

Well, first, it’s on a touch screen tablet. It can be either an iOS or an Android-based tablet, any tablet. A caregiver should go to our website and join. The first month is free [after that, it’s $20 a month for individuals]. You will set up your profile there and then go to the App Store for an iPad or Google Play store for an Android or other tablets, and once you download, you are ready to begin exploring.