Dementia Care in Nebraska: A Caregiver's Guide (2026)

An estimated 35,100 Nebraskans age 65 and older had Alzheimer's dementia in 2020, and in 2025 about 42,000 Nebraska caregivers were looking after someone with Alzheimer's or another dementia.1

Dementia caregiving is its own kind of hard: the long arc, the behavioral changes, the safety worries, the grief that starts before any loss. This guide maps the Nebraska-specific help available in 2026, from the free 24/7 helpline to Medicaid respite to the programs that can pay you for the care you already provide.

You do not have to navigate this alone, and you do not have to fund all of it from your savings.

Dementia Care in Nebraska, by the Numbers

The Alzheimer's Association estimates that 35,100 Nebraskans age 65 and older, 11.0 percent of that age group, had Alzheimer's dementia in 2020. For 2025, the Association counts about 42,000 Nebraska caregivers of people with Alzheimer's or other dementias, providing 63 million hours of unpaid care valued at roughly $1.6 billion.1

If the work feels overwhelming, that is not a personal failing.

Where to Start

When a diagnosis lands, or when caregiving starts to outpace what you can manage alone, two contacts are a sensible first call in Nebraska:

1. The Alzheimer's Association 24/7 Helpline: 1-800-272-3900. A live person answers around the clock, 365 days a year, in more than 200 languages, with information, local resources, crisis assistance, and emotional support. The call is free and confidential.2
2. Your nearest Area Agency on Aging. Nebraska DHHS's Alzheimer's and dementia page tells a caregiver who isn't sure where to start to contact their nearest Area Agency on Aging or the Alzheimer's Association's Nebraska chapter.2 Area Agencies on Aging, or providers they contract with, deliver the federal caregiver support program's information, counseling, and training, and its respite when the person cared for is a frail older individual.3

Nebraska's Dementia Support Infrastructure

Nebraska's front door is the State Unit on Aging at the Department of Health and Human Services, reachable at (402) 471-2307. In March 2025, Nebraska's newly formed Alzheimer's Disease and Other Dementia Advisory Council presented the State Alzheimer's Plan to the Legislature and the Governor.2 The federally funded National Family Caregiver Support Program pays for information, help getting services, counseling, support groups, caregiver training, respite, and limited supplemental services, provided by Area Agencies on Aging or providers they contract with; respite and supplemental services are only for caregivers of a frail older individual.3 Outside Medicaid, Nebraska DHHS runs the Lifespan Respite program, which pays up to $125 a month for planned respite for an unpaid primary family caregiver, and only for people who aren't getting or eligible for respite from another government program.5

Who Pays for Dementia Care in Nebraska

Nebraska Medicaid (Aged and Disabled Waiver)

The Aged and Disabled (AD) Waiver, administered by the Department of Health and Human Services, pays for home and community-based services for a person who already receives Nebraska Medicaid, has a disability or is over 65, meets Nursing Facility Level of Care, and needs waiver services. Its services include adult day health, chore, companion, home-delivered meals, a personal emergency response system, personal care, LRI Personal Care, and respite, and a Service Coordinator must find each one needed. DHHS says a participant may have a choice of Service Coordination provider depending on age: DHHS Local Offices serve all ages, and a participant 65 or older can use their local Area Agency on Aging, unless they already have a DHHS service coordinator and want to keep them. DHHS lists both the Area Agencies on Aging and DHHS as service coordination offices to contact.2,5

There is no dementia-specific pathway, but cognitive impairment counts toward particular services: Adult Day Health for a participant with physical, emotional, or cognitive impairments, and home-delivered meals when physical, cognitive, or safety limits keep someone from preparing their own. Waiver respite is capped at 360 hours in the participant's annual eligibility period, relieves the usual unpaid caregiver who lives with the participant, and can't be used to cover the caregiver's paid job.2

Getting Paid to Care for a Loved One With Dementia

Some Nebraska dementia caregivers can be paid for the care they provide, through Nebraska Medicaid or, for veterans' families, VA programs. Under Personal Assistance Services, a family member may be a paid provider as long as that family member is not legally responsible for the person, so a spouse cannot. On the Aged and Disabled waiver, a relative may be paid for Personal Care, Respite and Chore, and a spouse only through LRI Personal Care.5 LRI Personal Care can be authorized only when the person cared for meets Nebraska's Extraordinary Care test, for up to 40 hours a week; the spouse must be employed by an agency except in limited circumstances, and the service may not be self-directed. A relative who lives with the person is paid only for support clearly above and beyond the normal household routine.6 The pathways, who can be hired, and the pay are covered in the Nebraska paid family caregiver guide.

VA Benefits (for Veterans)

If the person you care for is a veteran enrolled in VA health care, the VA's Program of Comprehensive Assistance for Family Caregivers (PCAFC) pays a monthly stipend to an approved Primary Family Caregiver, who can be a spouse. VA's first screen is four conditions the veteran must all meet: a VA disability rating of 70% or higher, discharge from the U.S. military or a date of medical discharge, a need for at least six months of continuous, in-person personal care, and enrollment in VA health care. Those four are not the whole test: you and the veteran apply together, and the regulation adds further conditions VA assesses during that process. The stipend is calculated from the federal pay scale for the veteran's local area, so the dollar amount varies by where you live. Separately, Aid and Attendance adds monthly payments to a VA pension for qualified veterans and survivors: someone who gets that pension may be eligible if they meet at least one of VA's listed requirements, such as needing another person's help with daily activities like bathing, feeding, and dressing.7 The Veterans Pension requires wartime service, among other conditions.8 Call the VA Caregiver Support Line at 1-855-260-3274.9

Medicare

When signs of cognitive impairment show up at a routine or yearly Wellness visit, Medicare Part B covers a separate visit to assess cognitive function and write a care plan (billed under CPT code 99483, with the Part B deductible and 20% coinsurance applying). Medicare also covers home health services when the person is homebound and needs part-time or intermittent skilled care, and hospice when doctors certify a life expectancy of six months or less and the person chooses comfort care. It does not pay for long-term custodial care, the everyday help with bathing, dressing, and using the bathroom, when that is the only care a person needs.10

The Guiding an Improved Dementia Experience (GUIDE) Model, a voluntary CMS program that began July 1, 2024, adds dementia care navigation, a 24/7 support line, caregiver training, and respite, but only for patients aligned to a participating provider. To be aligned, a patient must have dementia confirmed by a participant's clinician, be enrolled in Medicare Parts A and B with Medicare as primary payer, not be in Medicare Advantage or another Medicare health plan (including PACE), not be in hospice, and not be a long-term nursing home resident. Since the performance year that began July 1, 2026, the patient must also live in a private residence or in a residential care community CMS has approved as a partner, and someone living in a memory care unit can't be aligned. For that performance year, GUIDE respite is capped at $2,625 per eligible patient, and CMS pays the participating provider, not the family. GUIDE respite is open only to aligned patients with moderate or severe dementia whose primary caregiver is a relative or an unpaid nonrelative, and not to aligned patients living in assisted living or another residential care community. Not every provider participates, so ask the person's doctor whether they take part in GUIDE.10

Respite for Dementia Caregivers

Respite is what makes the long haul survivable. In Nebraska it can come from the AD waiver for Medicaid members who qualify, from the National Family Caregiver Support Program when the person cared for is a frail older individual, and, for a person not on a waiver, from Nebraska's Lifespan Respite program.3 A person can receive respite from only one funding source.2 For the full picture, see Respite Care in Nebraska.

An adult day program can also give you reliable hours back. On the AD waiver, Adult Day Health is open to participants with physical, emotional, or cognitive impairments, though waiver respite can't be scheduled for the same hours.2

Safety, Behavior, and Planning

Dementia raises issues other caregiving does not: wandering, driving, sundowning, and the legal and financial planning that needs to happen while your loved one can still participate. The Alzheimer's Association 24/7 Helpline (1-800-272-3900) offers information, local resources, crisis assistance, and emotional support when these come up. Legal planning, such as a durable power of attorney and advance directives, is easier while your loved one can still take part, and for legal matters Nebraska DHHS points caregivers to Nebraska-specific legal documents and the ElderAccess Line at (800) 527-7249.2

Learn More

Find personalized help caring for a loved one with dementia in Nebraska at brevy.com.

The information on Brevy.com is for educational purposes only and is not a substitute for professional legal, financial, or medical advice. Rules vary by state and program and change frequently. Always verify with the relevant agency or a qualified professional. Brevy is not a law firm, financial advisor, or healthcare provider.