More than many illnesses, Alzheimer’s and other forms of dementia upend the lives of the people struggling with them — and the lives of the loved ones around them.
Daily lives, jobs, care of a home, personal health — all can end up suffering for both those with the disease and their caregivers, the loved ones who give up their time, money and homes to help.
But there are a host of organizations that will, either for free or for a price, help lighten the load.
What: Area Agency on Aging, which is advocates for seniors; plans and administers programs, coordinates and monitors available services
Where: 4080 Mundy Mill Road, Oakwood
More info: 770-538-2650 or www.legacylink.org
The Guest House
What: Daytime care facility in Gainesville that can serve up to 25 who need medical supervision
Where: 360 Oak St., Suite A, Gainesville
More info: 770-535-1487 or theguesthouse.org
Memories lost, moments cherished
A series exploring dementia, how it affects our community and the resources available to those affected. Read other stories in the series.
A diagnosis, and first steps
After a diagnosis, the first stop should be to Legacy Link, the umbrella nonprofit that serves as Northeast Georgia’s Area Agency on Aging, designated by the Department of Human Services.
As the regional AAA, Legacy Link delivers millions of dollars in grant funding each year to elder care groups like The Guest House, which provides day care services, and Georgia Legal Services. It also employs a staff of case managers, social workers and even nurses who help families and individuals handle the trials of aging.
Services range from intensive, like case management, to casual phone calls.
“The majority of people that we do case management for — that means nurses who go in the home and do assessments, social workers who put the care plan together — those people are basically low income,” Freeman said. “We have about 1,000 families that we work with.”
But one need not require a case manager to get patient-specific help from Legacy Link.
Legacy Link maintains a database of more than 24,000 businesses, groups and other service providers in the memory care world in Georgia.
The database runs the gamut: Service providers include everything from maid services to round-the-clock, at-home nursing businesses to nursing homes and assisted living facilities.
Freeman’s group employs liaisons who can recommend a host of resources for people at all stages of dementia and their caregivers.
Among the first steps after a diagnosis, unfortunately, should be legal work. The three documents that every family should have squared away early are a will, power of attorney and a medical directive, according to Bre Simmons, an elder care coordinator at Kimbrough Law in Gainesville.
Simmons is one of two such coordinators at Kimbrough Law, which specializes in elder care, life care planning and the legal issues around aging.
One of the first steps for the law firm’s elder care coordination is going out to do an assessment and look at available resources.
“It really just depends on the family and their hope, their plan for their loved one,” Simmons said. “Do you want to stay at home? Do you want to move to a community? What would you like to see? What are your goals?”
For those with limited incomes, Georgia Legal Services on Washington Street can also prepare wills, powers of attorney and medical directors.
“There are a lot of decisions people need to work on — especially if they’re early onset,” Freeman said. “They may not have had a will developed and the medical papers signed, but there are a lot of things they need to deal with while they’re still able — otherwise someone is going to do it for you.”
Growing needs of caregiving
Of all caregivers of older adults in the United States, half are looking after spouses, parents or siblings who have Alzheimer’s or another dementia, according to the Chicago-based Alzheimer’s Association. Most of these caregivers want to keep their families intact or their loved one out of a nursing home or assisted living facility.
While this care at home can represent the simplest tasks — helping with getting in and out of bed, dressing, bathing, feeding and getting to the bathroom — the demands of caring for a loved one losing their memory build over time and can outpace one person’s ability to meet them, especially if a caregiver is on his or her own.
As a result, the fastest-growing need in the memory care field is for respite services — a chance for a break for caregivers who have put their lives second, or on hold, to care for a loved one.
Dana Chapman ran The Guest House for seven years and is now the director of ITN Lanier, a transportation service for elders in the Hall County area.
In her time with The Guest House, Chapman saw more caregivers who needed its services not just as a chance to let their loved one socialize or get some light therapy — but so that the caregivers could keep their lives together.
“The demand that families were under to me, in my opinion, changed over the years to: I cannot keep my job if I don’t find a safe place for her,” Chapman said. “I can’t leave her in the house by herself anymore, I’ve tried that. She walks down the street, she’s out in the yard, she’s wandering away. I can’t keep her safe.”
And so they come to The Guest House, a daytime care facility on Oak Street in Gainesville that is equipped to handle the care of elders who need medical supervision. It can accommodate 25 clients each day and charges on a sliding scale based on income.
“We served a lot of people who were married and the spouse is trying to be the sole caregiver, and they’re overwhelmed with trying to provide care for someone who needs a lot of support,” Chapman said.
More and more often, she saw younger caregivers on the ragged edge of panic and anxiety after the demands of caring for their loved one outgrew their ability to manage it.
It’s at this point when respite becomes critical for caregivers and why respite services are an ever-growing need in memory care.
As the percent of the population struggling with dementia increases and the out-of-pocket costs of long-term care continue to grow, more working adults are faced with the demands of paying the bills and offering care at home.
“When you can no longer be away from that person, you hear people say, “How do I go to the post office to mail a package? How do I go to the grocery store?” Freeman said.
The nonprofit is the only one of its kind in Gainesville and employs nurses and staff to handle social services and activities. Because of the nature of the work, intake at The Guest House includes a deep dive into an elder’s medical history.
“If you spend eight hours with someone, you’ve got full responsibility for their medical care. Each time an assessment was done, we were building a medical chart on each person,” Chapman said. “You have to know their medication, their history if they have a pacemaker … everything.”
Legacy Link and other elder care planning organizations can help direct caregivers to services and resources, and that includes Chapman’s new project: ITN Lanier.
The program is a volunteer-based, not-for-profit driving service that relies on members of the community using their own vehicles to drive seniors to appointments, the grocery store or wherever they need to go in the greater Hall County area.
Volunteers are screened through an application process, which includes a driving record check.
It starts with a membership: The program costs $50 each year for an individual, and each ride costs $4 plus a $1-per-mile fee based on GPS. There’s no cash and no tipping for drivers, Chapman said. The average trip costs about $12, and the range includes Hall County and some additional areas.
The aim of the program is to keep seniors independent, even if they’re living under the care of family. Rides must be scheduled in advance.
When home isn’t an option
With a dementia diagnosis, acting early is essential. For subsidized care, waiting lists exist for a number of services, and getting a Medicaid waiver for a limited-income family or patient takes time.
“There are a lot of resources, but many of them are tied to your income. Being able to get on a publicly paid service sometimes means a waiting list. We have case managers that work in 35 counties and we try to take down those waiting lists,” Freeman said. “If you have the money and you can pay for the service directly, of course that’s faster. And we help people locate the services they need.”
Being proactive, even before a diagnosis, can also affect long-term quality of care and peace of mind not just for seniors, but their families.
Insurers offer long-term health plans for those approaching Medicare eligibility, which can help cover the cost of long-term care in later age.
“If you can stay ahead of a problem, your options are much greater. Your choices are greater,” said Kimbrough Law’s Simmons. “I hate when a family really has no options or option A or option B. By staying ahead, you can look at a whole host of options.”
And for those considering an assisted-living facility in Gainesville, Legacy Link employs ombudsmen who investigate complaints in assisted living facilities and perform regular inspections of long-term care facilities through the Georgia Long-Term Care Ombudsman Program.
Information about prospective assisted living facilities can be found by contacting Legacy Link at 770-538-2650.