NEW YORK -- Un grupo nacional creó nuevas herramientas en línea para ayudar a las personas con diagnóstico de demencia a determinar los tipos de atención que quieren, incluyendo los cuidados al final de la vida.

Noviembre es el Mes Nacional del Alzheimer, y las investigaciones revelan una ola creciente de demencia en la pandemia. Sin una instrucción previa sobre la atención deseada, el equipo médico tiende a prolongar la vida del paciente tanto como sea posible.

Pero de acuerdo a Kim Callinan, quien encabeza el grupo "Compasión y Elecciones" (Compassion & Choices), los sondeos indican que la mayoría preferiría una muerte natural en vez de vivir años en una condición que consideran peor que morir. Así, el grupo lanzó videos en línea para ayudar a dar a conocer estos deseos sobre los cuidados.

"Le permiten a una persona pre-expresar su voz e identificar el punto en el que quisiera que quienes le cuidan y el equipo medico que les respalda, permitan su muerte natural."

En los Estados Unidos, la demencia afecta a uno de cada tres adultos mayores agonizantes. Más información (en inglés) sobre las nuevas herramientas en línea, en compassionandchoices.org.

Callinan dice que las herramientas aplican una serie de preguntas para darle oportunidad a la persona de pensar y decidir por sí misma qué tipos de atención médica quiere cuando ya no pueda dar a conocer sus deseos.

"Le dira a quien le cuida si quiere o no continuar con tratamientos agresivos, si quisiera que otras enfermedades acaben con su sufreimiento o si quisiera todos los tratamientos disponibles."

Destaca que las herramientas permiten a los usuarios crear una Directiva de Atención Médica para la Demencia, que faculte al equipo médico a tomar decisiones informadas en nombre del paciente.

Callinan agrega que la herramienta es importante también para los hijos adultos de personoas de la tercera edad que pueden enfrentarse a tomar esas decisiones. Y pudieran querer animar a sus padres a usar estas herramientas, como hizo ella con sus propios padres.

"Quiero poder honrar y respetar lo que tu quieras. ¿Te darias el tiempo para revisar esta herramienta conmigo? Porque me ayudara a saber que estoy demostrando amor por ti, exactamente como tu quieres que te lo muestre."

Varias investigaciones demuestran que Nueva York es una de las diez jurisdicciones de los Estados Unidos con mayor índice del mal de Alzheimer.


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Nursing homes across South Dakota will soon receive a boost in support, as part of the most recent legislative session.

Facilities caring for Medicaid recipients are reimbursed by the state for some of the cost. Reimbursement rates have been calculated based on patient needs, occupancy and funds available in the state budget. Last year, the South Dakota Legislature increased the rate from about 75% to 100%.

House Bill 1167 now allows the Medicaid reimbursement rate to be adjusted annually, to keep up with inflation and other changes.

Erik Nelson, advocacy director for AARP South Dakota, is glad lawmakers are giving nursing homes attention.

"We have seen a number of nursing homes close in recent years," Nelson pointed out. "Financial considerations were a factor in that, along with workforce and some other issues."

Since 2019, 15 nursing homes have closed across the state, with six of the remaining 98 on a federal list of facilities not meeting basic standards of care. In addition to a lack of funding, the average staff turnover rate is 54%.

State lawmakers also approved the use of $5 million in American Rescue Plan Act funding toward expanding telehealth services in facilities including nursing homes, allowing patients to receive some health care services remotely.

Nelson noted telehealth is one way to supply needed support.

"For not only the residents, but the family caregivers that are supporting their loved ones in the nursing homes," Nelson emphasized. "And of course, the staff of the nursing home that's in the community."

Census data show South Dakota's population is aging and by 2030, one-fifth of residents will be older than 65.

Meals on Wheels programs could be a powerful tool for addressing the needs of people living with dementia, according to a study from Ohio State University researchers.

The community-based program delivers weekly meals to food-insecure seniors.

Lisa Juckett, assistant professor of occupational therapy at Ohio State University, conducted interviews with caregivers, people living with dementia, and the staff of LifeCare Alliance, the largest Meals on Wheels provider in the state. She said the findings revealed delivery drivers are often a critical source of social interaction and an "extra set of eyes" on homebound individuals.

"That Meals on Wheels driver is then able to perform very brief but important wellness checks and safety checks," Juckett explained. "To make sure that meal is actually being delivered, the door is being answered."

According to Meals on Wheels America, last year more than 90,000 Ohio seniors received over eight million home-delivered meals through the program. More than 80% of people with dementia in the U.S. live at home, and an estimated 60% are unable to eat or prepare food on their own.

States rely on a combination of federal funding, private donations and fundraising agencies to keep local Meals on Wheels programs operating. Juckett added the findings come on the heels of Congress deciding to cut funding for the Older Americans Act, which allocates money to Meals on Wheels programs nationwide.

"Meals on Wheels programs are always on the chopping block, when it comes to federal budgets being adjusted every year," Juckett pointed out. "We need more advocacy efforts to validate or justify the importance of these programs."

According to the group Alzheimer's disease International, more than 55 million people around the world live with dementia, a number expected to double over the next two decades.

Advocates for people age 65 and older urged Colorado lawmakers to fully fund a program helping people remain in their homes and avoid placement in assisted living facilities.

Jayla Sanchez-Warren, director of the Area Agency on Aging for the Denver Regional Council of Governments, said home-based services cost under $2,000 dollars per year, on average, compared to $74,000 for nursing homes. Since most people cannot afford the nursing home charges, state and federal taxpayers have to pick up the bill after their savings are gone.

"It saves money for individuals, it saves money for the state, and it keeps people where they want to be; living in their own homes," Sanchez-Warren emphasized. "Someone who needs help with preparing meals and maybe showering should not have to go to a nursing home."

Sanchez-Warren noted adequately funding home-delivered meals, transportation, in-home assistance and similar services would cost the state $20 million. The number of people age 65 and older is projected to rise from 928,000 to 1.3 million by 2035, according to Colorado State Demography office data, outnumbering people 18 and under over the next three decades.

Federal support for community based services has dropped, and state-based funding is stuck at 2019 levels.

Sara Schueneman, state director of AARP Colorado, said demand has risen dramatically. Nearly eight in 10 Coloradans say they want to age in place in their communities.

"There is a growing population of older adults in the state of Colorado, and there is growing demand," Schueneman pointed out. "We are trying to support more people with less money because there is so much need."

Advocates urged lawmakers to increase funding by at least $5 million in the state's annual budget, and increase the amount year over year to ensure people can access services.

Sanchez-Warren added right now, their largest transportation provider has a 700 person waiting list. If someone needs to get to a doctor's appointment or a dialysis treatment, they have to wait at least two months for a ride.

"You can't get a home delivered meal right now," Sanchez-Warren stressed. "It used to be where you would come out of the hospital, and maybe your doctor said you should get home-delivered meals. And within a couple of days we could get you into a program and there would be a meal at your door. Not anymore, it's on a waiting list."