Rural healthcare models for assisting Alzheimer's Disease patients are profiled in this report on the impact of the disease on America’s rural health population.
November is National Alzheimer’s Disease Awareness and Caregivers Month, and given that Americans annually commit about 18.2 billion hours of unpaid assistance to dementia and Alzheimer’s patients, it is clear and compelling that this is an unstoppable disease. More research, training, compassion, and funding is needed to find a cure.
An estimated total of 5.3 million Americans suffer from Alzheimer’s. Two-thirds of those diagnosed are women, primarily but not exclusively due to longer life expectancy among women (and a woman in her 60s is now more than twice as likely to develop Alzheimer’s as breast cancer during her lifetime).
By 2050, an estimated 13.8 million Americans will be diagnosed. Among those 65 and older it’s the fifth-leading cause of death, with only heart disease, cancer, COPD, and stroke ahead of it.
An Unstoppable Price
The cost of formal aid for dementia patients is estimated at $259 billion per year in the U.S. Alzheimer’s is one of the costliest chronic diseases, ranking third overall (cancer and heart disease rank first and second, respectively). Additionally, research shows that hospital stays for patients with dementia cost 3.2 times as much as those for patients without dementia. When it comes to Centers for Medicare & Medicaid Services (CMS) dollars, every year Medicare spends an estimated $22,000 per person with the disease, versus $1,100 on the same expenses for people without dementia. And nearly 1 in 5 Medicare dollars is spent on those diagnosed with Alzheimer’s and/or dementia.
In 2050, it is estimated that 1 out of every 3 Medicare dollars will be spent on the disease. Because Alzheimer’s disease tends to eat away at the brain slowly, patients often live an average of nine years, and in many cases, much longer.
A Rural Impact
No state has gone unscathed in this epidemic, and each is grappling to address care and interventions. Washington State has the highest rate of Alzheimer’s in the nation, with an average annual cost of $55,000 for assisted living and $97,000 for nursing home care.
West Virginia is the second-oldest state in the country, and 17.8 percent (or 36,000 people) of those over 65 there are living with Alzheimer’s disease. In North Dakota, where a third of the population lives in rural areas, research has found that caregiver intervention programs hold the key to cost savings, with an estimated savings of $12 million per year.
New York has dedicated nearly $63 million over the next five years to help caregivers with services. In addition to North Dakota, Minnesota and North Carolina are making strides in managing state-funded programs.
The Gift of Caregivers
For those in rural areas (where there are rising numbers of older residents) diagnosed with Alzheimer’s disease and other forms of dementia, they often suffer from other chronic diseases, and their ability to carry out and participate in daily living activities requires assistance.
Other contributing stresses include lack of financial resources and transportation, which in turn creates even more strain on caregivers who themselves are at greater risk for depression, stress, anxiety, cognitive disorders, and irritation due to 24/7 caregiving. An estimated 15 million people across the nation are informal caregivers and dedicate 18.2 billion hours of unofficial assistance annually, which equates to $400 billion of unpaid time.
Rural America Innovation Models
A compelling need has been explained, but rural healthcare isn’t sitting back waiting for things to change in policy; instead they have been creating bold innovative solutions that are showing positive results and can be duplicated:
Model No. 1: Project C.A.R.E. (Caregiver Alternatives to Running Empty) was created to meet rural caregiver needs in North Carolina. The program provides free dementia support to caregivers. It received its first demonstration grant in 1993 via the Alzheimer’s Disease Demonstration Grants to States, which then led to the launch of Project C.A.R.E in 2001. Services include caregiver assessments, counseling, care consultation, home safety inspection, connections to social support networks, care vouchers available to caregivers with financial need, dementia-specific information, individual care, action plans, and caregiver education.
Another resource also funded in part and used by Project C.A.R.E. is the Information & Assistance Toolkit: Working With Family Caregivers of People With Memory Disorders. This program focuses on the basics of memory disorders, including characteristics and symptoms of mild, moderate, and severe Alzheimer’s disease, plus information and assistance for staff and family caregivers of people with memory disorders.
Model No. 2: Rural West Virginia has developed a series of invaluable programs. The Savvy Caregiver Program consists of a six-section course that can be completed at the user’s own pace, along with “Alzheimer Caregiving Strategies” in the form of a CD-ROM or video promoting improved competence, sense of self, and global measure of distress in the caregivers who used the program. Respite care is used by physicians as a gauge managing the health of the caregiver.
Model No. 3: Also in West Virginia is the Lighthouse Program and Family Alzheimer’s In-Home Respite (FAIR). These are two programs that offer respite care to patients age 60 and over who meet the functional qualifications after an evaluation by a registered nurse. The program provides assistance in mobility, nutrition, household care, and personal care. It is open to West Virginia residents for a fee based on each patient’s income. The FAIR program is available to unpaid caregivers of those diagnosed patients in West Virginia.
Model No. 4: Veterans Affairs Medical Centers (VAMCs) provide support to eligible caregivers of veterans, including home assistance and other services. This program also provides palliative and hospice care at home or within a VAMC facility.
Model No. 5: The Medicaid Aged and Disabled Waiver (ADW) Program and the Legislative Initiative for the Elderly (LIFE) Program are two other helpful initiatives. The ADW program provides community services, including long-term direct care and support services, as well as in-home services that allow patients to stay at home rather than receive care at a long-term care facility. To qualify, applicants must be financially and medically eligible via an assessment conducted by the U.S. Department of Health and Human Services (HHS) and a medical professional. The LIFE program provides transportation assistance, managing medication services, caregiver support services, cleaning, yard services, and home-delivered meals. Check out www.seniorservices.gov for more information.
Model No. 6: SD eResidential Facilities Healthcare Services Access Project provides health services via telehealth/telemedicine for rural elderly populations in long-term care throughout a four-state region. The focus is to avoid transfers by utilizing technology, keeping patients in comfortable surroundings, and allowing them to access of care to their respective primary care providers.
To further eliminate transfers causing disorientation and to meet specific needs, there is Avera Sacred Heart Hospital, along with four Avera affiliates and two identified consortium collaborators, which developed the SD eResidential Facilities Healthcare Services Access Project.
Using practice models and studies of eLongTerm Care (eLTC), endorsed by the ATA (American Telemedicine Association), this program is designed to assist rural long-term care facilities with better access around the clock. The eLTC program provides urgent care support, education staff training, and other geriatric services. Avera and its partners have implemented services at 20 sites located in Nebraska, Iowa, Minnesota, and South Dakota, which were identified using metrics such as their access to healthcare, rural status, nursing support needs, and identified urgent care needs. The consortium partners of the SD eResidential Facilities Healthcare Services Access Project include Avera Marshall Regional Medical Services, Avera St. Luke’s Hospital, Golden Living Corporation, Evangelical Lutheran Good Samaritan Society, Avera Health, and the Avera Queen of Peace Hospital. The program received support from a Federal Office of Rural Health Policy Rural Health Care Services Outreach grant.
While there aren’t any grants open now, in 2018 rural healthcare providers and caregivers should review the Alzheimer's Disease and Related Dementia Group Respite and Early Memory Loss Grants; Phyllis and Milton Berg Family Respite Care Grant; The Brookdale Foundation Group; and Alzheimer's Foundation of America for opportunities.
On a final note, federal support of the Alzheimer’s Caregiver Support Act within the Public Health Services Act is critical to continue and advance caregiver support services. Furthermore, a sustained commitment to federal funding for Alzheimer’s research is necessary to discover treatments and a cure, because everyone knows someone who has dementia and/or Alzheimer’s.