Upward of 95% of patients experience these neuropsychiatric symptoms of dementia, which tend to fluctuate over time and vary in intensity. They’re the primary reasons people with dementia end up in assisted living facilities or nursing homes. At some point, families and friends trying to help at home simply can’t manage.

“When people think about dementia, they usually think about forgetfulness and memory impairment,” said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. “But it’s behavioral and psychological disturbances that are most disruptive to patients’ and caregivers’ lives.”

Now, help is available from a created by prominent experts in this field. It offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia — a method known as DICE — based on several decades of scientific research as well as extensive clinical practice.

The website’s goal is to “give people tools to better manage often-distressing situations,” said Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, California, and one of DICE’s creators. Users learn that neuropsychiatric symptoms are caused by changes in the brain that increase people’s vulnerability. Nine video modules and two simulations provide comprehensive information and problem-solving techniques.

More than 16 million unpaid caregivers — primarily family members and friends — help people with dementia live at home. (An estimated 20% of patients live in institutional settings.) The most common form of dementia, Alzheimer’s disease, affects nearly 7 million Americans 65 and older.

DICE is also designed to help “avoid the knee-jerk prescribing of psychoactive medications” that have potentially serious side effects, Kales said. Several medical organizations recommend that non-pharmaceutical approaches to troublesome behaviors be tried before drug therapy, but, in practice, this doesn’t routinely happen.

Drugs prescribed for dementia include antipsychotic medications, such as Risperidone, which carry a black-box warning noting an increased risk of sooner-than-expected death in elderly patients; anticonvulsants, such as gabapentin, for which use has been on the rise despite concerns about safety; benzodiazepines, such as Ativan, which are associated with an increased risk of falls and, thus, fractures; and Celexa and other such antidepressants that have limited data supporting their effectiveness in easing dementia symptoms.

DICE is a mnemonic — a pattern of letters meant to serve as a memory aid — that stands for Describe, Investigate, Create, and Evaluate, the four pillars of this approach. At its core is an assumption people with dementia engage in disturbing behaviors for often-unrecognized reasons that can be addressed once they are understood.

Take an example on the website featuring Jennifer, a 55-year-old caregiver for her mother, Betty, 85, whom she tries to bathe daily in the late afternoon. When Betty resists getting into the tub, Jennifer insists, “Let’s go! I have things to do.” Betty responds by smacking her and shouting, “Leave me alone. It hurts.”

DICE asks caregivers to step back from the heat of the moment and examine issues from three perspectives: the person with dementia, the caregiver, and the environment. All can contribute to distressing situations and all need to be considered in fashioning a response.

Examining the problem by using a “who, what, when, how, why” prompt can reveal several potential issues:

• The patient. Betty has arthritis and may experience pain getting in and out of the tub. She may feel tired and overwhelmed in the late afternoon.
• The caregiver. Jennifer may become easily frustrated when she encounters resistance — adopting a scolding and commanding tone rather than breaking down what Betty needs to do in simple steps.
• The environment. The bathroom tends to be cold, with overly bright lights, tepid bathwater, and no grab bars around the tub.

Some possible solutions discussed on the website: Offer Betty an over-the-counter pain reliever before her bath. Try baths in the morning, not the afternoon. Relax expectations that she’ll have a daily bath and offer sponge baths several times a week. Install grab bars around the tub, and make sure the water temperature is comfortable. Use a nicely scented soap and play music to help Betty relax. Speak calmly, making simple statements.

These embody strategies shown to improve neuropsychiatric symptoms associated with dementia: recognizing and addressing underlying medical issues such as pain, infections, or delirium; simplifying the tasks a person with dementia is expected to perform; and establishing daily routines that give structure to the day.

Other important steps: Engage the person in activities that are meaningful to them, including social interactions. Reduce clutter and the potential for overstimulation in the environment. Make sure the person is using hearing or vision aids, if needed. Get them outside and exposed to light.

If safety, psychosis, or major depression are urgent concerns, then consider using psychoactive medications after consulting a physician.

Of course, this isn’t a comprehensive list of recommendations. Nor is it prescriptive. What works for one person with dementia may not work for another.

Using DICE is an iterative process that involves creativity and frequent evaluation to assess whether strategies are working, Kales said. If not, new interventions should be tried.

Although this is the first time family caregivers can access the DICE toolkit, the program has been available to health care professionals for a while. Notably, all of Wisconsin’s dementia care specialists have been trained in DICE over the past few years (every county in that state has a specialist who helps families with dementia).

“It’s a really pragmatic approach that’s put together in a very thoughtful fashion,” said Art Walaszek, a professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health who’s been involved in that effort.

Other dementia training programs are available, some of which review behavioral and psychiatric symptoms in less depth, and they, too, are increasingly available online. Another valuable resource, , launched in March, lists evidence-based programs across the country and their availability. Enter a ZIP code to find information that previously hasn’t been assembled in one place. This site, too, is very much worth consulting.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit to submit your requests or tips.

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Hasta el 1 de enero, 3 millones de personas en Medi-Cal, principalmente mayores, ciegas, discapacitadas, que reciben cuidados a largo plazo o que participan en el programa federal de Seguridad de Ingreso Suplementario (SSI), en el valor de sus cuentas financieras y propiedades que pudieran poseer para tener derecho a la cobertura. Ahora, casi 2 millones de personas ya no tendrán que hacer frente a estas restricciones, equiparándose a los aproximadamente 12 millones de otros beneficiarios que no tienen límites de activos.

Todavía deben estar por debajo del de Medi-Cal, que para la mayoría de los afiliados es actualmente de $1,677 al mes para un adulto soltero y $3,450 para una familia de cuatro. Sin embargo, el cambio eliminará mucho papeleo para los solicitantes y los funcionarios del condado que verifican su elegibilidad.

Durante mucho tiempo, este grupo de beneficiarios de Medi-Cal no podía tener más de $2,000 en el banco —$3,000 para un matrimonio—, aunque la vivienda en la que vivían, así como un vehículo y otros tipos de bienes personales, estaban exentos.

“Si tenías $5,000 en activos, tenías que gastar $3,000 en lo que fuera para demostrar que estabas por debajo del límite y poder optar a la ayuda”, explicó Tiffany Huyenh-Cho, abogada de la organización Justice in Aging. “Teníamos gente que pagaba el alquiler por adelantado, gastaba dinero en reparaciones del coche, compraba un sofá nuevo o electrodomésticos… todo para reducir sus activos con el fin de llegar al límite de $2,000”.

Ahora, agregó Huyenh-Cho, “no tienes por qué seguir sumido en la pobreza. Puedes ahorrar para una emergencia; puedes ahorrar para la jubilación o para un depósito de seguridad si quieres mudarte”.

Y los que tienen la esperanza de dejarles algo a sus hijos cuando fallezcan, ahora pueden hacerlo, aunque necesiten costosa atención de largo plazo.

La primera fase del cambio de la norma se implementó en julio de 2022, cuando el umbral a $130,000 para un individuo y $195,000 para un hogar de dos personas, cantidades en las que no entran la gran mayoría de los interesados. Porque la mayoría de las personas con ingresos lo suficientemente bajos como para tener derecho a Medi-Cal nunca tendrían esa cantidad ahorrada. Por este motivo, se espera que la eliminación total de la denominada prueba de activos, introducida este año, ayude económicamente a menos personas de lo que hizo el primer cambio.

Aún así, hay algunas personas con más de $130,000 en el banco cuyos ahorros se habrían esfumado en un tiempo sorprendentemente corto si hubieran necesitado atención de largo plazo en un centro de asistencia o en casa. Ahora pueden calificar para que Medi-Cal se haga cargo de esos gastos.

Joanne Shinozaki, residente en Granada Hills, un barrio de Los Angeles, contrató el año pasado un cuidador privado a tiempo completo para su madre, Fujiko, que padece demencia. Pero costaba casi $11,000 al mes, y Shinozaki no tardó en darse cuenta de que gastaría rápidamente los $200,000 de ahorros que su padre le había dejado al morir a principios del año pasado. A regañadientes, ingresó a su madre en una residencia de adultos mayores, que era más barata. Pero tras un aumento del 10% en enero, ahora le cuesta $9,000 al mes, aunque eso incluye la comida y los servicios.

Debido al dinero que dejó el padre de Shinozaki, su madre no tenía derecho a Medi-Cal según las antiguas normas. Pero ahora, ese dinero ya no cuenta en su contra. Shinozaki, veterinaria que dejó su trabajo para coordinar la atención de su madre, tiene que volver a trabajar pronto. Ha solicitado Medi-Cal para su madre y está esperando que se lo aprueben.

“Significaría poder traerla de regreso al hogar en el que ha vivido desde 1988, si se encuentra bien para volver a casa”, dijo Shinozaki. Para ello, tendrá que conseguir que su madre tenga acceso a cuidadores a través del programa de Servicios de Apoyo en el Hogar (IHSS) de Medi-Cal.

De hecho, otro beneficio del cambio en las normas de elegibilidad es que apoya la economía de los cuidadores, según Kim Selfon, especialista en Medi-Cal y en la política de IHSS en Bet Tzedek Legal Services, que proporciona asistencia jurídica gratuita a las personas en el condado de Los Angeles.

Los activistas que trabajan con los beneficiarios y solicitantes de Medi-Cal dicen que a menudo tienen que explicar la diferencia entre activos e ingresos. “Creo que mucha gente está confundida”, señaló Stephanie Fajuri, directora en el Center for Health Care Rights, una organización sin fines de lucro con sede en Los Angeles que ayuda a las personas a navegar Medi-Cal y Medicare. “Nos preguntan: ‘¿Qué quieres decir? ¿Podría ganar un millón de dólares al año? Y nosotros les decimos: ‘No, eso son ingresos'”.

Así que, seamos claros: bajo las nuevas reglas, sí, puedes ser propietario de una segunda casa. Pero si la alquilas, eso son ingresos y, dado los precios actuales de los alquileres, es probable que no puedas recibir todas las prestaciones de Medi-Cal. También puedes mantener una cuenta de inversión independientemente del saldo, pero las distribuciones de la misma, así como los intereses, dividendos y plusvalías que genere también son ingresos.

Pero hay que recalcar que es poco probable que la mayoría de los beneficiarios dispongan de un gran patrimonio y todavía tengan ingresos lo suficientemente bajos como para calificar para Medi-Cal. Pero si de repente heredan una suma modesta, o incluso grande, ahora pueden conservarla, aunque puede afectar brevemente su cobertura.

Lamentablemente, los 1,1 millones de beneficiarios de Medi-Cal que reciben Seguridad de Ingreso Suplementario siguen sujetos a una prueba de patrimonio, porque se les aplican normas diferentes.

Los activistas y abogados dicen que no ha habido suficiente educación pública sobre la eliminación de los límites de activos, y que muchas personas todavía creen que sus cuentas bancarias o bienes personales los excluyen.

También hay quien puede temer que el estado se quede con su casa y otros bienes después de su muerte para recuperar lo que se gastó en su cuidado. Esa preocupación podría intensificarse ahora que las personas pueden conservar todos sus bienes y seguir recibiendo Medi-Cal. Pero un cambio en limitó la capacidad del estado para reclamar una casa u otros activos después del fallecimiento de una persona e hizo relativamente fácil protegerlos.

El estado sólo puede reclamar hasta el total que Medi-Cal gastó en , incluidos los cuidados intermedios y de largo plazo, y gastos relacionados. Incluso en esos casos, no puede tocar tu casa ni ningún otro bien si lo has protegido mediante un fideicomiso testamentario u otra medida legal que lo mantenga fuera del tribunal testamentario. Y el estado no puede reclamarla si hay un copropietario que sobrevive al beneficiario de Medi-Cal.

“Ahora que las personas pueden disponer de bienes ilimitados, deben ser más conscientes de la necesidad de protegerlos en caso de que necesiten cuidados de largo plazo”, afirmó Dina Dimirjian, abogada de Neighborhood Legal Services en el condado de Los Angeles.

El Departamento de Servicios de Salud, que supervisa Medi-Cal, ha publicado en su sitio web () una sección de preguntas frecuentes sobre la eliminación de la prueba de activos. Otra buena fuente de información y asistencia jurídica es la Health Consumer Alliance ( o 888-804-3536).

El fin de la prueba de activos también aliviará un gran dolor de cabeza burocrático para beneficiarios y solicitantes, y liberará incontables horas para los funcionarios de elegibilidad de Medi-Cal en las oficinas del condado.

“Las personas tenían que navegar por todo esto y averiguar lo que cuenta y lo que no cuenta, y tenían que demostrarlo, y el condado luego debía verificarlo”, explicó David Kane, abogado en el Western Center on Law & Poverty. “Es bueno que podamos librarnos de todo esto”.

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Until Jan. 1, 3 million Medi-Cal beneficiaries, mainly those who are aged, blind, disabled, in long-term care, or in the federal Supplemental Security Income program, on the value of financial accounts and personal property they could hold to qualify for coverage. Now, nearly 2 million of them will no longer face these restrictions, putting them on par with the roughly 12 million other Medi-Cal beneficiaries who don’t have asset limits.

They still must be below Medi-Cal’s , which for most enrollees is currently $1,677 a month for a single adult and $3,450 for a family of four. However, the change will eliminate a lot of paperwork for applicants and the county workers who verify their eligibility.

For a long time, this group of Medi-Cal beneficiaries could have no more than $2,000 in the bank — $3,000 for a married couple — though the home they lived in, as well as one car and certain types of other personal property, were exempt.

“If you had $5,000 in assets, you would have to spend $3,000 on something to prove that you were beneath the limit to qualify,” says Tiffany Huyenh-Cho, a senior attorney at the advocacy group Justice in Aging. “We had people who prepaid rent, spent money on car repairs, bought a new couch or appliances — things to reduce their assets in order to get to the $2,000 limit.”

Now, Huyenh-Cho adds, “you don’t have to remain in deep poverty. You can save for an emergency; you can save for retirement or for a security deposit if you want to move.”

And those who have hoped to leave a little something for their children when they die can now do so, even if they need expensive long-term care.

The first phase of the rule change was implemented in July 2022, when the threshold was to $130,000 for an individual and $195,000 for a two-person household, making it a nonfactor for the vast majority of those concerned. After all, most people with incomes low enough to qualify for Medi-Cal would not have that much saved. For this reason, the total elimination of the so-called asset test ushered in this year is expected to help fewer people financially than the first change did.

Still, there are some people with more than $130,000 in the bank whose savings would have been wiped out in shockingly short order had they needed long-term care in a nursing facility or at home. Now, they can qualify to have Medi-Cal pick up that cost.

Joanne Shinozaki, a resident of Granada Hills, a Los Angeles neighborhood, hired private full-time caregiving last year for her mother, Fujiko, who has dementia. But it cost nearly $11,000 a month, which Shinozaki quickly realized would burn fast through the roughly $200,000 in savings her father had left when he died early last year. Reluctantly, she put her mom in a memory care home, which was less expensive. But after a 10% increase in January, it is now costing $9,000 a month, although that includes food and utilities.

Because of the money Shinozaki’s dad left, her mom did not qualify for Medi-Cal under the old rules. But now, that money no longer counts against her. Shinozaki, a veterinarian who quit her job to coordinate her mother’s care, needs to return to work soon. She has applied for Medi-Cal for her mom and is waiting for it to be approved.

“It would mean being able to bring her back to the house where she’s lived since 1988, if she’s well enough to come home,” Shinozaki says. To do that, she will need to get her mom access to caregivers via Medi-Cal’s In-Home Supportive Services program.

Indeed, another benefit of the change in eligibility rules is that it supports the caregiver economy, says Kim Selfon, a Medi-Cal and IHSS policy specialist at Bet Tzedek Legal Services, which provides free legal assistance to people in LA County.

Advocates who work with Medi-Cal enrollees and applicants say they often have to explain the difference between assets and income. “I think a lot of people are confused,” says Stephanie Fajuri, program director at the Center for Health Care Rights, an LA-based nonprofit that helps people navigate Medi-Cal and Medicare. “They say, ‘What do you mean? I could be making $1 million a year?’ And we say, ‘No, that’s income.’”

So, let’s be clear: Under the new rules, yes, you can have a second house. But if you are renting it out, that’s income — and given today’s rental prices, it will likely disqualify you from full Medi-Cal benefits. You can also keep an investment account regardless of the balance, but distributions from it as well as any interest, dividends, and capital gains it generates are also income.

Again, most beneficiaries are unlikely to have a large pool of assets and still have income low enough to qualify for Medi-Cal. But if you suddenly inherit a modest sum, or even a large one, now you can keep it, though it may briefly affect your coverage.

Unfortunately, the 1.1 million Medi-Cal beneficiaries receiving Supplemental Security Income are still subject to an asset test, because different rules apply to them.

Advocates and legal aid attorneys say there hasn’t been enough public education about the elimination of the asset limits and that many people still believe their bank accounts or personal property rule them out.

People may also fear the state will take their house and other assets after they die to recoup what it spent on their care. That worry could intensify now that people can keep all their assets and still be on Medi-Cal. But a restricted the state’s ability to put a claim on your house or other assets after you die and made it relatively easy to insulate them entirely.

The state can claim only up to the amount Medi-Cal spent on , including long-term and intermediate care and related costs. Even in those cases, it cannot touch your home or any other asset if you have protected it by putting it in a living trust or through some other legal move that keeps it out of probate court. And the state can’t put a claim on it if there is a co-owner who outlives the Medi-Cal beneficiary.

“Now that people can hold unlimited assets, they need to be more cognizant of protecting them should they need long-term care,” says Dina Dimirjian, a staff attorney at Neighborhood Legal Services of Los Angeles County.

The Department of Health Care Services, which oversees Medi-Cal, has published on its website () on the elimination of the asset test. Another good source of information, and legal assistance, is the Health Consumer Alliance ( or 888-804-3536).

The end of the asset test will also cure a big bureaucratic headache for beneficiaries and applicants and free up countless hours for Medi-Cal eligibility workers in county offices.

“People had to navigate this and figure out what counts and what doesn’t count, and they had to prove it, and the county had to verify it,” says David Kane, a senior attorney at the Western Center on Law & Poverty. “It’s a good thing we can say goodbye to it.”

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LaTurner, 71, had been diagnosed with early-onset dementia seven years before. For two years, she’d been living with LaFleur, who managed insulin injections for her mother’s Type 1 diabetes, helped her shower and dress, dealt with her incontinence, and made sure she was eating well.

In the hospital after her mother’s hip replacement, LaFleur was told her mother would never walk again. When LaTurner came home, two emergency medical technicians brought her on a stretcher into the living room, put her on the bed LaFleur had set up, and wished LaFleur well.

That was the extent of help LaFleur received upon her mother’s discharge.

She didn’t know how to change her mother’s diapers or dress her since at that point LaTurner could barely move. She didn’t know how to turn her mother, who was spending all day in bed, to avoid bedsores. Even after an occupational therapist visited several days later, LaFleur continued to face caretaking tasks she wasn’t sure how to handle.

“It’s already extremely challenging to be a caregiver for someone living with dementia. The lack of training in how to care for my mother just made an impossible job even more impossible,” said LaFleur, who lives in Auburn, Washington, a Seattle suburb. Her mother passed away in March 2022.

A new proposal from the Centers for Medicare & Medicaid Services addresses this often-lamented failure to support family, friends, and neighbors who care for frail, ill, and disabled older adults. For the first time, it would authorize Medicare payments to health care professionals to train informal caregivers who manage medications, assist loved ones with activities such as toileting and dressing, and oversee the use of medical equipment.

The proposal, which covers both individual and group training, is a long-overdue recognition of the role informal caregivers — also known as family caregivers — play in protecting the health and well-being of older adults. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a .

“We know from our research that nearly 6 in 10 family caregivers assist with medical and nursing tasks such as injections, tube feedings, and changing catheters,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. But fewer than 30% of caregivers have conversations with health professionals about how to help loved ones, he said.

Even fewer caregivers for older adults — only 7% — report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.

Nancy LeaMond, chief advocacy and engagement officer for AARP, experienced this gap firsthand when she spent six years at home caring for her husband, who had amyotrophic lateral sclerosis, a neurological condition also known as Lou Gehrig’s disease. Although she hired health aides, they weren’t certified to operate the feeding tube her husband needed at the end of his life and couldn’t show LeaMond how to use it. Instead, she and her sons turned to the internet and trained themselves by watching videos.

“Until very recently, there’s been very little attention to the role of family caregivers and the need to support caregivers so they can be an effective part of the health delivery system,” she told me.

Several details of CMS’ proposal have yet to be finalized. Notably, CMS has asked for public comments on who should be considered a family caregiver for the purposes of training and how often training should be delivered.

(If you’d like to let CMS know what you think about its caregiving training proposal, you can comment until 5 p.m. ET on Sept. 11. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.)

Advocates said they favor a broad definition of caregiver. Since often several people perform these tasks, training should be available to more than one person, Resendez suggested. And since people are sometimes reimbursed by family members for their assistance, being unpaid shouldn’t be a requirement, suggested Anne Tumlinson, founder and chief executive officer of ATI Advisory, a consulting firm in aging and disability policy.

As for the frequency of training, a one-size-fits-all approach isn’t appropriate given the varied needs of older adults and the varied skills of people who assist them, said Sharmila Sandhu, vice president of regulatory affairs at the American Occupational Therapy Association. Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur, said Kim Karr, who manages payment policy for AOTA.

When possible, training should be delivered in a person’s home rather than at a health care institution, suggested Donna Benton, director of the University of Southern California’s Family Caregiver Support Center and the Los Angeles Caregiver Resource Center. All too often, recommendations that caregivers get from health professionals aren’t easy to implement at home and need to be adjusted, she noted.

Nancy Gross, 72, of Mendham, New Jersey, experienced this when her husband, Jim Kotcho, 77, received a stem cell transplant for leukemia in May 2015. Once Kotcho came home, Gross was responsible for flushing the port that had been implanted in his chest, administering medications through that site, and making sure all the equipment she was using was sterile.

Although a visiting nurse came out and offered education, it wasn’t adequate for the challenges Gross confronted. “I’m not prone to crying, but when you think your loved one’s life is in your hands and you don’t know what to do, that’s unbelievably stressful,” she told me.

For her part, Cheryl Brown, 79, of San Bernardino, California — a caregiver for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002 — is skeptical about paying professionals for training. At the time of his diagnosis, doctors gave Hardy five years, at most, to live. But he didn’t accept that prognosis and ended up defying expectations.

Today, Hardy’s mind is fully intact, and he can move his hands and his arms but not the rest of his body. Looking after him is a full-time job for Cheryl, who is also chair of the executive committee of California’s Commission on Aging and a former member of the California State Assembly. She said hiring paid help isn’t an option, given the expense.

And that’s what irritates Cheryl about Medicare’s training proposal. “What I need is someone who can come into my home and help me,” she told me. “I don’t see how someone like me, who’s been doing this a very long time, would benefit from this. We caregivers do all the work, and the professionals get the money? That makes no sense to me.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. VisitÌýÌýto submit your requests or tips.

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Can negotiation and dispute resolution techniques used in the business world help defuse these kinds of conflicts?

Yes, say a group of researchers at Northwestern University. And they’re on to something.

These experts have developed a training curriculum on negotiation and dispute resolution for social workers, care managers, and health care professionals who regularly work with resistant older adults. Materials for family caregivers are being developed, too.

Instead of avoiding difficult issues or simply telling people what to do (“You’ll need home health aides several times a week for the foreseeable future”), professionals learn to elicit what’s most important to older adults and approach arranging care as a collaboration, not an edict from on high.

“People get into so many arguments when they get older. It’s something I see every day in my work,” said Lee Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, who’s leading the project. Its goal is to de-escalate conflicts and make it easier for older people to receive needed support, she said.

In May, Lindquist and her team planned to launch another part of the project: a trial of a computer-based training program for family caregivers of people with mild cognitive impairment or early-stage dementia. The program, called NegotiAge, features avatars of older adults and allows caregivers to practice negotiation techniques under different scenarios.

“You get thrown different situations, different emotions, and you get to play the game of negotiation as often as you want,” Lindquist said. Nearly $4 million in funding for the project comes from the National Institutes of Health. After evaluating the program’s effectiveness, Lindquist hopes to make NegotiAge widely available.

In the meantime, there are several steps family caregivers can take to forestall or resolve conflicts with older parents.

Prepare

Preparation is essential for any type of negotiation, advised Jeanne Brett, professor emerita of dispute resolution and organizations at Northwestern’s Kellogg School of Management and a member of the NegotiAge team. “You want to think through answers to several fundamental questions: What issues need to be addressed? Who are the parties invested in these issues? What are the parties’ positions on each of these issues? Why do you believe they’re taking those positions? And what’s going to happen if we can’t reach an agreement?”

It’s helpful to write down answers to these questions in a planning document. Be sure to include yourself among the parties and spell out your goals for the conversations to come.

What might this look like in practice? Let’s say you want your father, who’s in his early 90s, to stop driving, because he’s started getting lost and his vision isn’t great. The people with a stake in the discussion include your father, your elderly mother, you, your two siblings, and your father’s physician.

Your mom may be concerned about your father’s safety but hesitant to raise the issue for fear of provoking an argument. One of your siblings may agree it’s time to take away the car keys, while the other may think Dad is still fine on the road. The doctor may recommend a driving evaluation and subsequently offer his professional opinion.

Look for Common Interests

Your job is to find areas where these parties’ interests intersect and work from there. Everyone wants your father to remain active and see his friends on a regular basis. Everyone wants to ensure he doesn’t injure himself or anyone else on the road. Everyone wants to respect his desire for independence. No one wants to label him incompetent.

Brett distinguishes between positions, such as “I’m not going to stop driving,” and interests, or the reasons why someone takes a position. In this case, Dad may be afraid of becoming isolated, losing autonomy, or giving up control over his affairs. But he, too, may worry about hurting somebody else unintentionally.

Negotiations have the best chance of success when they address the interests of all the parties involved, Brett noted. Don’t adopt an adversarial approach. Rather, emphasize that you’re on the same team. The goal isn’t for one side to win; it’s for people to work together to find a solution to the issue at hand.

Ask Questions

Don’t assume you know why your parent is taking a certain position (“I don’t want to go to the doctor”). Instead, ask follow-up questions, such as “Why?” or “Why not?”

If an older person snaps, “I don’t want to talk about it,” don’t back away. Acknowledge their discomfort by saying, “I understand this is difficult,” while adding, “I care about you and I want to know more.”

Lindquist favors starting difficult discussions with patients with open-ended questions: “What are some things you’re having issues with? What are you doing that you wish you could be doing differently? What would make your life easier?”

Listening carefully and making the person you’re negotiating with feel heard and respected is essential. If one of Lindquist’s patients tells her, “I make my own choices, and this is what I want,” she might respond, “I agree you’re the boss, but we’re both here to make your life better, and I’m worried about you.”

Brainstorm Strategies

Negotiations with family members are often charged with emotions that can easily spiral out of control. But don’t reciprocate if someone gets angry and lashes out.

“When you’re buying a car, if you can’t agree with the dealer you’re talking to, you can go to another dealer. When you’re in a conflict with a family member, you don’t have this option. You’ve got more stubbornness and more defensiveness about disabilities,” Brett said, “and preserving relationships is even more important.”

Redirect your focus to brainstorming strategies that can help solve the problem at hand. Get creative and put lots of options on the table. Invite your parent to respond and ask “Why?” or “Why not?” again as needed.

If you find yourself going round and round without making progress, try saying something like, “We could argue about this all afternoon, but neither one of us is going to give in. Let’s set aside our arguments and come up with five ways that you can get to activities without your car,” Brett said.

Don’t expect to agree on a strategy right away. “You can say, ‘Let’s bring in Mom and talk about this later,’ or, ‘Let’s think about this and check in with each other next week,’” Lindquist suggested, noting that many negotiations take time and can’t be rushed.

Bring In a Third Party

If all else fails, appeal to a third party. This was Brett’s strategy when her husband, who has Parkinson’s disease and compromised vision, wanted to resume driving in 2021 after recovering from a serious fall. Brett and the couple’s daughter couldn’t convince him this might be risky, but the older man, then 89, agreed to get a driving evaluation at a facility associated with a Chicago hospital. When they recommended he stop driving, he gave up the car keys.

Brett later hired a neighbor in the small town in France where they now live to ferry her husband to appointments several times a week. Twice a week, she drives him to a nearby village where he has coffee with friends. He gets out into the world and she doesn’t worry about safety — an outcome both can live with.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. VisitÌýÌýto submit your requests or tips.

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On Alcohol Abuse: Seeing a Double Standard

I have done quite a bit of research on alcohol-related deaths and I from the Centers for Disease Control and Prevention. Now, my No. 1 question is: Why are the government and the media not holding the alcohol industry accountable for the deaths that its products cause?! The tobacco industry was held accountable for its products and now pharmacies are being held accountable for the opioid crisis. It seems to me that there’s a double standard that’s been ongoing for years, especially since alcohol-related deaths far outnumber opioid deaths. Can anyone working for the government or the media explain why I see more articles about the possible dangers of opioids or marijuana (“Legal Pot Is More Potent Than Ever — And Still Largely Unregulated,” May 9) instead of alcohol-related deaths?

— Stephen Hubbard, Independence, Missouri

This kind of mainstream coverage is ignorant and reminiscent of the 1980's. It oversimplifies an incredibly complex topic, demonizes , and outright ignores health benefits for millions. I'd expect more from USA Today.

— John Schroyer (@Johnschroyer)

— John Schroyer, Denver

Veterans Deserve Choice in How They Claim VA Disability Benefits

While I appreciate Ä¢¹½Ó°Ôº Health News’ interest in the ongoing debate about private sector services helping veterans navigate the Department of Veterans Affairs’ disability claims process (“Some Private Companies Charge Hefty Fees to Help Veterans With Disability Claims,” April 28), your coverage left the impression that private benefit guides generally overcharge for their services and provide little value to veterans. That is an unfair characterization, and your readers deserve additional context.

Honorable companies like , where I work, are providing a needed service to veterans, helping guide them through the complex claims process and ensure they receive the full benefits they earned from their service. As a company founded by a veteran and staffed by many veterans and family of veterans, we are proud that our clients receive an average increase to annual benefits of $13,200, benefits they would not receive without our help.

Veterans service organizations (VSOs) are intended to help free of charge, but too often they are understaffed and inadequately trained. In congressional testimony, the National Association of County Veterans Service Officers, which represents county VSOs nationwide, acknowledged that it does not have enough representatives nor funding to meet veterans’ demand for assistance.

Your article described $2,800 as a “hefty” fee being charged by one private benefit guide and quoted the National Organization of Veterans’ Advocates, a group representing accredited attorneys and agents, calling for tighter regulation of the industry, but then failed to mention that those attorneys and agents often charge veterans significantly more. In fact, accredited attorneys charge between 20% and 33% of a veteran’s backpay, which can exceed $50,000 on complicated cases. In nearly every scenario, an attorney will charge multiples more than a private benefit guide and take years longer to achieve the same result.

At Veteran Benefits Guide, our focus is on ensuring Veterans submit fully developed, accurate claims to the VA, which helps get the correct rating for the Veteran the first time, avoids the need for costly appeals and speeds up the final benefits decision. Attorneys, on the other hand, are only paid to assist Veterans during an appeals process. And they are incentivized to drag out appeals, since they are paid a percentage of the Veteran’s backpay. The longer an appeal takes, the more the attorney is paid.

Veteran Benefits Guide and other honorable companies have strongly supported efforts to establish guardrails and crack down on bad actors, such as the recently introduced , which would impose criminal penalties on those seeking to take advantage of veterans, establish safeguards to prevent conflicts of interest, and institute caps to prevent unreasonable fees — while still preserving the right of veterans to seek assistance from the private sector. It would have been helpful context for your readers to know that such reasonable legislation has been introduced and is being considered in Congress right now.

— Michael Licari, chief legal officer of Veteran Benefits Guide, Las Vegas

— Ellen Fink-Samnick, Burke, Virginia

Bracing for a Wave of Denials

Patients and physicians alike are shocked by the increasing number of absurd and sometimes dangerous barriers insurance companies put in place (“Denials of Health Insurance Claims Are Rising — And Getting Weirder,” May 26). Not only are coverage denials happening after the fact, but care is also disrupted before patients have a chance to get the drugs and services they need.

Through a process called prior authorization, insurance companies force doctors to submit requests for care, and the insurance company representatives, who are not necessarily specialists or even medical doctors, have the power to determine if care is necessary or not. At best, it delays care and can force patients to wait; at worst, medical care can be outright denied.

One egregious example is UnitedHealthcare’s unprecedented for most endoscopies and colonoscopies, starting on June 1. Even if you have blood in your stool or suffer severe gastrointestinal pain, you will need to get preapproval before you can receive a procedure to diagnose or treat your condition. With colorectal cancer being the and Crohn’s disease and colitis affecting more than a million Americans, time is of the essence to catch problems quickly. I fear that UnitedHealthcare’s prior authorization policy will deter Americans from getting timely care and exacerbate existing disparities.

The gastrointestinal community calls on UnitedHealthcare to honor its recent promise to slash prior authorization — and rescind this absurd policy before patients suffer real harm.

— Barbara Jung, president-elect of the American Gastroenterological Association, Seattle

— Lindsay Resnick, Chicago

Aging Takes a Village

I applaud Judith Graham for her article “How to Grow Your Social Network as You Age” (April 28), which also . It aptly highlights the importance of social connections for older adults and emphasizes that “it’s never too late to develop meaningful relationships.” I could not agree more.

We are increasingly learning about the consequences of isolation and loneliness on the emotional, physical, and cognitive health of older adults.

In the past decade, an antidote to social isolation has emerged nationwide through the “Villages Movement” whereby local “communities” of neighbors help one another to successfully age in place.

Most Villages are volunteer organizations offering a range of social activities and basic services. There are approximately 350 Villages nationwide and 74 in the Washington, D.C., metro area. While each Village operates differently, they share the mission to improve the quality of life for seniors and reduce isolation.

My work with Villages, both nationally and locally, has allowed me to witness firsthand how Villages are improving the lives of older adults. Whether they attend a Village seminar, luncheon, art tour, or bridge tournament, they are building those critical connections and having fun!

During the pandemic lockdown, our Potomac Community Village helped to reduce isolation by offering frequent Zoom programs as well as friendly phone calls and check-ins with members.

Villages are a great solution. I’d encourage readers to consider joining a Village where they can find new friends and a renewed sense of community. For more information, see vtvnetwork.org.

— Edgar E. Rivas (he, him, él), Potomac Community Village Board of Directors vice president, Village to Village Network, Potomac, Maryland

Worthwhile story, but this shot of people playing "yard petanque" Disrespects My Bing.

— Alex Heard (@alexheard)

— Alex Heard, Santa Fe, New Mexico

Remote Work Alone Won’t Solve Caregivers’ Challenges

I am a health care professional and have relied upon the work of Ä¢¹½Ó°Ôº’s health policy research and Ä¢¹½Ó°Ôº Health News over the years. Reading a recent article you produced, “Remote Work: An Underestimated Benefit for Family Caregivers” (May 19) by Joanne Kenen, I would strongly suggest a deeper view. Below are specific points I’d love to help bring to the attention of your readership, given my extensive work in the space of caregiving, health, and the working caregiver. I am a registered nurse, family caregiver, caregiving expert, and co-founder of two organizations that have been supporting family caregivers for the past eight years.

Remote work is helpful, yes. But it’s only part of the answer. Without the adequate tools, resources, and support to work and carry the load of caring at home, working caregivers will still experience stress, burnout, hits to their productivity, loneliness, and the list goes on.

We need to take a more wholistic view and address the underlying factors of stress, and the myriad of challenges that plague every caregiver.

For example, communication challenges do not go away when working from home — not unless that working caregiver has the technology and resources to connect all the disparate communications in order to better coordinate among other family members involved in caring and with the providers involved in managing their care. Post-it notes, texts, emails, and phone calls are no way to communicate and are simply ineffective.

Having remote patient monitoring devices at home is good, but if they are not connected to a platform to better coordinate what’s happening, adjust care plans, and engage providers of care more effectively with the family caregiver at home managing the care, then work productivity, stress, and the employee’s well-being still takes a big hit, regardless of working remotely or not.

We need to go several layers deeper. Remote work is a good benefit, but it cannot stop there. Without the adequate support, technology, and tools to engage and better coordinate the mess, many working caregivers slog through every day, and the overall impacts will be far less than desired.

— Deb Kelsey-Davis, Chicago

The overlooked benefit of remote work for : Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. by via

— Catherine Arnst (@cathyarnst)

— Catherine Arnst, New York City

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She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.

Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

She quit. “I needed to see my dad,” she said.

In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.

That’s a missed opportunity, caregivers and their advocates say.

Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

After her stepmother died, Beltré moved her father into her home in Fort Myers, Florida, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

She’s also not alone. About , and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.

Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out — only to the grocery store and church, and even then she’s constantly checking on her dad.

“This is the story of my life,” she said.

Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.

President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a outlining how federal agencies can help and offering road maps for the private sector.

Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.

So that leaves it up to families.

Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

But there are countless scenarios in which the option to work remotely is an enormous help.

When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.

That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.

A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.

Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”

But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.

At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “.”

Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.

And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”

Ä¢¹½Ó°Ôº Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ä¢¹½Ó°Ôºâ€”an independent source of health policy research, polling, and journalism. Learn more about .

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The recent upsurge in at-home deaths started in 2020, the first year of the pandemic, and the rate has continued to climb, outlasting the rigid lockdowns at hospitals and nursing homes that might help explain the initial shift. Nearly 40% of deaths in California during the first 10 months of 2022 took place at home, up from about 36% for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, U.S. Centers for Disease Control and Prevention data shows that about 26% of Californians died at home in 1999, the earliest year for which data on at-home deaths is accessible in the agency’s public database.

The trend is amplified among California residents with serious chronic conditions. About 55% of Californians who died of cancer did so at home during the first 10 months of 2022, compared with 50% in 2019 and 44% in 1999. About 43% of Californians who died of Alzheimer’s disease in the first 10 months of 2022 did so at home, compared with 34% in 2019 and nearly 16% in 1999.

Nationwide, the share of deaths occurring at home also jumped in 2020, to 33%, then rose to nearly 34% in 2021. Nationwide data for 2022 is not yet available.

Covid’s early, deadly sweep across California does not in itself explain the increase in at-home death rates; the vast majority of people who have died of covid died in a hospital or nursing home. Instead, medical experts said, the surge — at least initially — appears to coincide with sweeping policy changes in hospitals and nursing homes as caregivers struggled to contain a virus both virulent and little understood.

The sweeping bans on in-person visitation in hospitals and nursing homes, even to the bedsides of dying patients, created an agonizing situation for families. Many chose to move a loved one back home. “It was devastating to have Mom in a nursing home and dying, and the only way you can see Mom is through the window,” said , a registered nurse who has written extensively about end-of-life care.

At the same time, fears of covid exposure led many people to avoid hospitals in the first years of the pandemic, in some cases neglecting treatment for other serious conditions. That, too, is thought to have contributed to the rise in at-home deaths.

Those who specialize in end-of-life care say it is no surprise the trend has continued even as visitation policies have eased. They said more people simply want to die in a comfortable, familiar place, even if it means not fighting for every second of life with medical interventions.

“Whenever I ask, ‘Where do you want to be when you breathe your last breath? Or when your heart beats its last beat?’ no one ever says, ‘Oh, I want to be in the ICU,’ or ‘Oh, I want to be in the hospital,’ or ‘I want to be in a skilled nursing facility.’ They all say, ‘I want to be at home,’” said , coordinator for the advance care planning program at Sharp HealthCare in San Diego.

Meanwhile, the physicians who specialize in the diseases that tend to kill Americans, such as cancer and heart disease, have become more accepting of discussing home hospice as an option if the treatment alternatives likely mean painful sacrifices in quality of life.

“There's been a little bit of a culture change where maybe oncologists, pulmonologists, congestive heart failure physicians are referring patients to palliative care earlier to help with symptom management, advanced care planning,” said , associate medical director for hospice at UC Davis Health.

The trends have created a booming industry. In 2021, the California Department of Health Care Access and Information listed 1,692 licensed hospice agencies , a leap from the 175 agencies it listed in 2002.

That much growth — and the money behind it — has sometimes led to problems. A by the Los Angeles Times found that fraud and quality-of-care issues were common in California’s hospice industry, a conclusion bolstered by a . Gov. Gavin Newsom that placed a temporary moratorium on most new hospice licenses and sought to rein in questionable kickbacks to doctors and agencies.

When done correctly, though, home hospice can be a comfort to families and patients. Hospice typically lasts anywhere from a few days to a few months, and while services vary, many agencies provide regular visits from nurses, health aides, social workers, and spiritual advisers.

Most people using hospice are insured through the federal Medicare program. The amount Medicare pays varies by region but is usually around $200 to $300 a day, said , chief medical officer at the nonprofit .

To find quality end-of-life care, , a professor at Wayne State University and author of “,” recommends seeking out nonprofit providers and having a list of questions prepared: How often will nurses visit in person? In what circumstances do patients have access to a physician? What help will be available for a crisis in the middle of the night?

While hospice providers offer crucial guidance and support, families need to be prepared to shoulder the bulk of the caregiving. “It really takes a pretty evolved family system to be able to rally to meet all of the needs,” said Tastad at Sharp HealthCare.

Several end-of-life experts said they expect the proportion of Californians choosing to die at home to keep climbing, citing a variety of factors: Medical advances will make it easier for patients to receive pain management and other palliative care at home; telemedicine will make it easier for patients to consult doctors from home; and two powerful forces in American health care — insurance companies and the federal government — increasingly see dying at home as an affordable alternative to lengthy hospital stays.

Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.

This story was produced by , which publishes , an editorially independent service of the .

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“I want to scream!” one called out. “I feel exhausted,” said another.

Espedal, who has been training caregivers for 18 years, guided the class through a self-soothing exercise: “Breathe in for four counts, hold the breath for four, exhale for four.” She taught them to carve out time for themselves, such as setting the goal of reading a book from beginning to end, and reminded everyone to eat, sleep, and exercise. “Do not be afraid to ask for help,” Espedal said. She added that one of the best ways they can care for their clients — often a loved one — was to care for themselves.

The class is a little touchy-feely. But it’s one of many offerings from the California Department of Social Services that the agency says is necessary for attracting and retaining caregivers in a that helps 650,000 low-income people who are older or disabled age in place, usually at home. As part of the $295 million initiative, officials said, thousands of classes, both online and in-person, will begin rolling out in January, focused on dozens of topics, including dementia care, first-aid training, medication management, fall prevention, and self-care. Caregivers will be paid for the time they spend developing skills.

Whether it will help the program’s labor shortage remains to be seen. According to a of the In-Home Supportive Services program, 32 out of 51 counties that responded to a survey reported a shortage of caregivers. Separately, auditors found that clients waited an average of to be approved for the program, although the department said most application delays were due to missing information from the applicants.

The in-home assistance program, which has been around for , is plagued by high turnover. About 1 in 3 caregivers leave the program each year, according to University of California-Davis researcher Heather Young, who worked on a 2019 on California’s health care workforce needs.

It doesn’t help that the pay is low. , the average hourly rate for caregivers in the in-home assistance program is $15.83. Rates vary because the program is administered locally, with each county setting its own.

“Training is very helpful,” said Doug Moore, executive director of the United Domestic Workers of America AFSCME Local 3930, which represents roughly 150,000 caregivers in California. “But when the wages are low — and you can make more at Target or McDonald’s and get a signing bonus — then you’re going to go and do that work versus harder work, which is taking care of someone with a disability or a person that’s aging.”

The training initiative came out of Gov. Gavin Newsom’s Master Plan for Aging to . Theresa Mier, a spokesperson for the Department of Social Services, said the state hopes financial incentives will help attract new workers and keep them caring for people with specialized needs longer. In addition to their hourly pay for taking classes, in-home caregivers will receive incentive payments that start at $500 for 15 hours of training. They can if they go on to work at least 40 hours a month with a qualified client for at least six months. Previously, counties offered some training but did not pay workers for their time.

The state issued grants, including to Homebridge, a San Francisco-based caregiving organization, to coordinate training. Classes will be offered in Spanish, Cantonese, Mandarin, and Armenian, in addition to English, to reach more workers. And state officials are planning a social media campaign to recruit new caregivers.

But the incentives are committed only through the end of 2023.

Greg Thompson, executive director of the , the public authority that manages Los Angeles County’s in-home program, would like to see paid training become permanent. “There needs to be, in my opinion, some kind of accountability, structure, supervision, and ongoing training,” he said.

Many caregivers who attended early courses care for family members with a mix of physical and behavioral needs. In fact, 3 out of 4 caregivers in the in-home assistance program are relatives of clients. But the state needs to prepare for a workforce shift, one that requires people to look outside their families. The number of California seniors is expected to be nearly 8.5 million by 2030, an from 2019. Many of them will be single.

The state will need more caregivers like Luz Maria Muñoz, who has worked in the in-home assistance program for six years. The Bakersfield resident has navigated challenging situations on the job. One older client was on 30 medications. Another had bedsores, which can be life-threatening if not properly treated. Muñoz peppered the client’s nurse with questions about dressing the wounds and felt responsible for the client’s well-being.

“Those wounds needed to be cleaned daily,” she said.

Muñoz said she’s interested in the training. The department said it sent notices about classes to all participating caregivers and will follow up with updates. Counties also helped spread the word online, in newsletters, and via posted flyers.

Early sessions have filled up as soon as they’re set up. Leslie Kerns, the in-home assistance registry manager for , the public authority for the program in Nevada, Plumas, and Sierra counties, said some classes were full after three hours. State officials said next year should open soon.

Angelina Williamson cares for her mother, who is disabled, in San Diego and took a course on mobility and transferring patients. She said she learned how to use her body to break a fall and that if her mother falls, it’s better to bring her a chair than pick her up because her mother has enough upper body strength to pull herself up, with Williamson’s help.

Recent surveys suggest that caregivers are likely to be interested in self-care. In a in California, 35% of caregivers reported that their health had worsened while providing care, and 20% had experienced symptoms of depression. Some caregivers also reported being lonely, which could include lacking companionship, feeling left out, or feeling isolated from others. And a by the National Alliance for Caregiving and AARP found that 26% of caregivers had difficulty managing their stress.

Robbie Glenn, a single father in Anaheim, attended Espedal’s self-care class and learned to take time for himself. By day, Glenn cares for his 11-year-old son, Edin, who has birth defects from alcohol exposure and has nonverbal autism. Edin needs help going to the toilet and bathing. He has epilepsy and sometimes walks in his sleep. By night, Glenn freelances, doing post-production work, such as film editing and .

Glenn now uses a timer to remind himself to take a break. “And,” he said, “I’ve been doing those breathing exercises a lot.”

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“And while I was on the subway, my mom’s friend said, ‘Something is wrong with your mom,’” Revere said. “‘We don’t know what’s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.’”

Revere flew to L.A. At her mom’s home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen. Her mother, Lynn Hindmon, was a devout evangelical who worked for her church. A slim, regal self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember whom she was talking to on the phone.

Revere did not know it then, but that tough time would lead her to find — and help build — a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag “dementia” has racked up more than as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to do it. Over the past few years, Revere’s account, , has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.

It would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother — still in her 50s — had Alzheimer’s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer’s years earlier.

“That first year and a half, I was just filled with fear: What if I lose the house?” Revere said.

Because of the stress, she said, “I went through bouts of migraines. My hair, right in the middle, fell out completely.”

“I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything’s taken care of.”

In 2017, her grandmother died. Revere’s grief and isolation felt overpowering. Her friends in their 20s either couldn’t relate or thought she was “wallowing in pity,” Revere said.

Trying to make them understand what her daily life was like now seemed impossible. “I just wanted to find people I didn’t have to explain everything to,” she said.

Revere tried a support group for caregivers, an hour’s drive away. But the other attendees were decades older and had more financial resources. “[They] would say, ‘And now I have to take equity out of our house,’ or ‘I’m thinking of reaching into our 401(k).’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … I just felt worse.”

These days Revere no longer feels so alone. She’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.

Daughters Are Often Dementia Caregivers

Alzheimer’s is the most common form of . Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.

The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for relatives or friends suffering from Alzheimer’s disease or other dementias, . About 60% of these caregivers are .

“Unfortunately, there is not a very strong system of paid support for people with dementia,” said , an associate professor who studies aging and cognitive impairment at UCSF’s . “And so the most common way of supporting persons with dementia is the daughter.”

Like Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and “extremely isolated,” said Portacolone.

Another expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she said.

Because there’s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer — like “a big black box,” Snow said. Decades ago, when people got cancer, “we didn’t say anything; we didn’t talk about it. We said, ‘Oh, gosh, that’s horrible.’ And people were like, ‘How long have they got?’”

What family members need from the medical system, Snow said, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their dietary, sleep, and exercise habits.

All too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. “That’s pretty lonely,” Snow said.

The covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere’s mom had been attending five days a week. Desperate to find social connection, Revere did what so many as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.

You can watch a woman’s video of caring for her husband with early-onset Alzheimer’s or one of Revere’s @MomofMyMom posts from 2020, which walks viewers through their .

“It’s bath day,” Revere says at the start of the post, while still lying in bed. “I try my best not to make this an emotionally draining experience,” she sighs. “So let’s begin.”

Bathing someone with dementia can be difficult, even dangerous. They can get disoriented, or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall, or try to fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she’s wearing neon-blue leggings and a purple beanie.

Revere starts off by promising her mom a present — which she’ll get after the bath.

Revere walks her audience through the process, sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside, and lays out all her mom’s clothes. “Lure her into my cave,” she says, as her mom enters the bathroom.

The video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.

The video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: “My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done.” Another commenter told Revere, “God Bless you! I know it’s hard. I see you and send so much love your way.”

Revere posted a follow-up right away:

“How many of us are on here?” she said into the camera. “I’ve been, like, looking for people my age that I can relate to, who have the same experience.”

Revere’s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere’s gentle, joyful tricks for getting through bath time. They also listen to Revere’s candid confessions.

“Y’all, I have never been so emotionally drained in my life,” she shared in one . “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful.”

Content Creators Weigh Ethics of Going Public

The intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven’t consented to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a woman chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.

Beth Kallmyer, vice president for care and support for the Alzheimer’s Association, doesn’t think the people posting these videos intend to be exploitative. “You could tell that the caregivers just felt isolated and frustrated and at their wits’ end, with no resources,” she said.

“If I were talking to a family member … considering doing this,” Kallmyer said, “those are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?

“Should we have a video of somebody that isn’t fully clothed? Or maybe [before Alzheimer’s] they only went outside when they were dressed to the nines or really put together, and you’ve got them in pajamas or sweatpants or whatever, and they don’t have makeup on. I’m not sure that’s the best way to go about using TikTok.”

Revere has a video that, in retrospect, she now feels ambivalent about posting. It’s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.

Lynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can’t drink mouthwash.

With some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.

Some comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective — like she needed to be more careful, as she didn’t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it’s a good example of “redirecting” away from a risk — something other caregivers would understand.

On March 9, Jacquelyn Revere posted on TikTok, letting her followers know her mother had died. She was 65.

On TikTok, the messages of surprise and condolence poured in.

Revere, an only child, had always assumed that when her mom died she’d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.

“It’s been the least lonely I’ve ever been throughout this experience, actually,” she said.

Revere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn’t live while she was caring for her.

Now she has time to go on dates, get a pedicure, or drive by the ocean.

After six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now — and what she wants. She knows she wants to stay connected with dementia caregivers.

“I just want them to know that they’re being thought about,” Revere says. “Because that’s what I needed most. Just to know that life isn’t passing me by, and I’m not seen.

“I just want to make sure that they feel seen.”

This story is part of a partnership that includesÌý,Ìý,Ìýand KHN.

Ä¢¹½Ó°Ôº Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ä¢¹½Ó°Ôºâ€”an independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).