FARGO, N.D. – As North Dakotans gather to celebrate Thanksgiving, there are some who could use a little extra gratitude.
About 68,000 North Dakotans are family caregivers, including Mary Beth Simmer of Fargo. She quit her job to provide care for her sister, who has passed away, but Simmer knows well that caregiving truly is a labor of love - and also a major challenge.
"Many caregivers have loved ones who absolutely need somebody there to help them 24/7 and they can't be left alone," she said. "You can get very depressed: 'I can't do this, this is too much, I need a break.' "
November is National Family Caregivers Month, and Josh Askvig, state director of AARP North Dakota, said a new report shows that caregivers in the state provide about 57 million hours of care each year free of charge - with an economic value of $980 million.
"It really goes to show that those uncompensated caregivers are that backbone of the long-term care continuum," he said.
Nationally, the report said, 41 million family caregivers provide care totaling $470 billion a year. The report also revealed the complex responsibilities of caregiving, which also may include such medical tasks as wound care and medication management. Knowing she'd become her sister's full-time caregiver, Simmer became a Certified Nurse Assistant. However, she noted, most people don't have that sort of training when they are thrust into the caregiving role.
"On top of immediately learning that a loved one is ill and needs care often comes the fact that, 'I don't know how to do that. What if I hurt 'em? What if I don't do it right?' There's so many questions," she said.
In an effort to address the challenges caregivers face, Askvig said AARP helped get the CARE Act passed this year, which provides support for caregivers upon a loved one's release from the hospital.
"We also worked with the North Dakota Department of Human Services to look at how do we get people more breaks across the lifespan of what they call respite care," he said, "and helping them find support for those caregivers to get a planned, or sometimes emergency, break."
Askvig said a growing aging population will only increase the demand for caregivers in the years to come.
The report is online at aarp.org.
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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."
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Senior and older-adult groups are frustrated by cuts to services in New York's budget proposal. This includes cuts to home-care programs and the Long-Term Care Ombudsman program.
It comes a year after Gov. Kathy Hochul announced the state's Master Plan for Aging, a legislative framework to help New York seniors age in place.
Rebecca Preve, executive director of the Association on Aging in New York, feels this lack of funding undercuts the state's dedication to helping seniors. She described how service providers are dealing with already low funding.
"And what that means is, if you go to your locality to ask for a home-delivered meal or a personal care aide to assist you in your home, because of the funding issue, a lot of people are being placed on waiting lists for those services," Preve explained. "In the state, currently, we have about 18,000 service lines that are waitlisted."
She added that doesn't begin to capture the numbers of people at a crisis point who are reaching out to their local Office for the Aging. The pandemic increased service demands for local Offices for the Aging. But the difference now is, there aren't any federal stimulus dollars going out to fund these programs -- and yet the need for services remains.
According to Preve, if the state doesn't boost this funding, seniors will either leave the state or possibly die from a lack of necessary services.
Without proper caregiving services, this responsibility falls to family members. An AARP report shows family caregivers in New York provided $39 billion in unpaid care in 2021 -- a $7 billion increase from 2019.
Preve noted without a fully funded support system to help them, things just get harder for these caregivers.
"We know that working caregivers are missing time at work. They're either leaving the job market entirely for their caregiving duties, or they're cutting down the number of hours that they're able to work," she stressed. "We know that the mental-health impact on caregivers is incredibly significant."
Considering the ongoing challenge, Preve isn't certain what lies ahead. She noted some people rely on skilled nursing facilities or Medicaid instead of Office for the Aging services. But some might make too much to qualify for Medicaid, making them ineligible.
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It's International Women's Day, and AARP is highlighting the important role older women will play in this year's election.
The organization recently conducted a survey on the priorities of women voters age 50 and older in the 2024 election. The rising cost of living topped the list for this group, along with concerns about caregiving.
"Women have varied life experiences," said AARP Oregon state director Bandana Shrestha. "They're not a monolith, but there are certain things that really stand out - related to financial security, related to family caregiving. They also feel like their voices are not heard and that they want elected officials to really pay attention to the issues that matter to them most."
Women in this age group are split nearly evenly when it comes to a choice between Joe Biden and Donald Trump in the 2024 presidential race. However, among women age 50 to 64, 15% are undecided, making this a large group that could swing either way.
People age 50 and older comprised nearly 60% of voters in Oregon's 2022 election, with more than half of them women. Shrestha said that's important in the upcoming election.
"They're a large voting bloc," she said. "They care about the issues, they are caring for their loved ones and often, especially those women in the middle, they're a sandwich generation. They're caring for the younger loved ones but they're also caring for their parents. So they're juggling a lot."
Shrestha said politicians should take note of women age 50 and older.
"There is a lot of stuff that can be done through policymaking and through prioritizing what is important to the real people, and this is a great year to do that," she said. "Women's History Month and International Women's Day is a great day to lift up the voices of women, especially women 50-plus."
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