A resource guide for Alzheimer's caregivers: Tips for home care and nursing homes
Do you know the difference between Medicare and Medicaid? How about, in a pinch, how to find a nursing home and research which ones in your area might be good and others less so?
Life invariably gets harder when a loved-one is diagnosed with Alzheimer's disease, dementia or any other condition likely to require continuous at-home care giving or placement in a nursing home. Rarely are any of the choices one is forced to make easy—emotionally, let alone financially.
"Families will say that the day they put someone in a facility—I've head them say—"It's the worst day of my life,'" said Michelle Niedens, director of the Cognitive Care Network, part of the Alzheimer's Disease Research Center at the University of Kansas Medical Center. It is one of 33 such research centers designated by the National Institute on Aging.
"People feel like to place someone is, "I'm giving up on them. I've failed in some respects,'" Niedens said. "But if you think through what is actually needed, sometimes a facility is the best place for them, and everyone."
Whatever decisions are made, Niedens said, the most fruitless act is to berate oneself for either caring for a loved-one at home or seeking placement in a nursing facility
"I tell people all the time," she said, "if there is love in the room, we're headed in the right direction. Any decision made out of love is the right one."
What follows is a list of resources and foundational information to help guide your choices.
Getting started
▪ The Alzheimer's Association: A great place to start for anyone with a loved one suspected of having Alzheimer's or dementia. The national group, at www.alz.org, runs a 24/7 hotline at 800-272-3900.
▪ Area Agencies on Aging: Nearly every county in the U.S. is served by an Area Agency on Aging. Set up under the Department of Health and Human Services, their focus is to provide resources to help older Americans stay at home and live independently with dignity through community services. They offer a wide range of services, including help with Medicare or Medicaid, finding legal services, home-delivered meals to people who are homebound, caregiving support and other resources. To find find an agency near you go to the eldercare locator at eldercare.acl.gov.
Caregivers' on-line support group
AARP Family Caregivers Discussion Group: A Facebook group for family caregivers for individuals with Alzheimer's, dementia or any other difficulty.
Medicare and Medicaid
▪ Medicare is the government national health insurance for people age 65 and older or with certain disabilities. It covers care inside a skilled nursing facility and certain home health services, if those services are short-term and part of other skilled nursing services or therapies.
But it does not cover 24-hour care in a nursing home, or meal delivery, home services like shopping or cleaning or laundry or any custodial or personal care that has to do with bathing, dressing or using the bathroom or other activities of daily living, if that is the only care one needs. Medicare also does not cover assisted living, long-term care in a nursing home or memory unit.
▪ Medicaid: Funded jointly by each state and the federal government, Medicaid is health coverage for about 80 million low-income individuals: adults, children, pregnant women, families with children, elderly, adults and children with disabilities.
Medicaid pays for long-term residential care in nursing homes or memory units, but one must be found eligible based on one's income and assets. The income thresholds differ by state, but are quite low, typically close to the federal poverty level.
However, even though an individual's income is higher than Medicaid's general thresholds, one may still quality for care in a nursing facility if the income is less than what Medicaid would pay monthly for care in a nursing facility. For example, if one receives $3,000 a month in income from Social Security and a pension, but care in a nursing facility costs $6,000 per month, that individual would likely quality for care in that facility if it takes Medicaid.
Through Medicaid, individuals can also receive a range of home and community-based services (HCBS), such as help dressing or bathing, meals, caregiving training, respite care, transportation and many others.
Veterans benefits
VA Aid & Attendance Benefits: The U.S. Department of Veterans Affairs provides wartime veterans and qualified survivors, age 65 and older, a monthly benefit to offset cost of long-term care, if they are housebound, or need care with activities of daily living, such as bathing, dressing, eating, toileting. Current monthly benefit is about $2,000 for a single veteran without any dependents.
Nursing home check list
Before choosing a nursing home, download and use the checklist. It includes questions related to the most basic information—from does the nursing home provide its fees on request (required by law) to questions on safety, staffing and activities.
Rating home health care companies
Home Health Care Compare, run by Medicare.gov., gives zero to five star ratings to home health companies and organizations.
Alzheimer's Disease Research Centers
▪ The consortium of 33 centers, designated by the National Institute on Aging, are home to some of the most up-to-date research on Alzheimer's disease and other dementias. They help diagnose the disease and educate on the latest therapies and studies and clinical trials of hopeful medications and other interventions.
2022 The Kansas City Star.
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