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Rural Caregiving

By  Liza Berger, Staff Writer 

 

Where to Turn for Help
 
Caregiving in rural America carries a unique set of challenges. Medical care and other health and social services are few and far between, and transportation is scarce.  Meanwhile, poverty and a lack of younger family members in these areas present still more impediments to securing necessary care for loved ones.

Despite these hardships, there are places that caregivers can turn to for help. The Rural Assistance Center (http://www.raconline.org), a product of the Department of Health and Human Services’ Rural Task Force, serves as a one-stop online site for information on rural issues. Programs such as The Eldercare Locator and The National Adult Day Care Services Association offer ways for caregivers to seek the help for their loved ones that the need.

Also, in recent years, a few unique programs have cropped up in rural areas to help the elderly. These include PACE (Programs of All-Inclusive Care for the Elderly) which is now serving 14 rural communities around the country as part of a demonstration project. (For more on PACE, go to http://www.cms.hhs.gov/PACE/. Other resources and Web sites for caregivers are listed below.)

Resource Shortage

Living in a rural area makes the already difficult task of caregiving even more of a struggle. One of the biggest problems facing caregivers in rural areas is a lack of medical and health services. There are fewer adult day care centers and in-home health services, such as respite care or meals on wheels, than in urban and suburban areas.

Some statistics: Twenty-two percent of rural caregivers report using an aide or nurse through an agency or service. That compares with 25 percent of urban and 24 percent of suburban caregivers. Also, only four percent of rural caregivers make use of respite services compared with five percent of their urban and suburban counterparts. And only three percent of rural caregivers make use of adult day centers, while eight percent of urban caregivers and six percent of suburban caregivers do. These numbers come from the 2006 report “Caregiving in Rural America,” from Easter Seals and the National Alliance for Caregiving.

Why the lack of services? Not only do rural areas struggle to attract and retain qualified professional medical and social service professionals, but also the government increasingly has been failing to provide adequate funding.  Compounding the problem of accessing needed health and social services is distance: “They are harder to utilize because they are just so geographically dispersed,” noted Shawn Bloom, CEO of PACE.

The government-funded PACE program, which has a total of 62 programs across the country, coordinates a spectrum of home- and community-based services to people over 55 who are eligible for nursing home care.  As a result of a lack of home- and community-based services, nursing homes tend to be the only option for seniors as they become unable to care for themselves. There are more nursing home beds per 1,000 people (66.7) in rural areas than in urban areas (51.9). That is according to “The 2004 Report to the Secretary: Rural Health and Human Service Issues.” The report comes from The National Advisory Committee on Rural Health and Human Services (NACRHHS).

Transportation Roadblock

Transportation represents another major hurdle for caregivers in rural areas.  A total of 40 percent of rural residents live in areas with no public transportation system, 80 percent of rural communities have no public bus service, and 57 percent of rural residents do not own a car, according to the NACRHHS report. Rural elderly, as a result, are dependent on family members, friends and neighbors for transportation.

Low population density also makes the caregiving situation more difficult. The rural elderly population is spread out over 80 percent of the country. The proportion of elderly in rural counties (14.7 percent) is higher than in urban areas (11 percent), the NACRHHS report found. This is largely due to younger people migrating to urban areas.

A consequence of this migration is there are fewer young family members available in the area to provide care. As is the case with transportation, many elderly must turn to friends, their church, and neighbors for informal services. Fewer young people coupled with a lack of transportation in these areas have made the elderly population more isolated generally across the country.

Still another issue plaguing rural areas is poverty. About 11 percent of rural caregivers report annual incomes under $15,000, according to the “Caregiving in Rural America” report. Rural elderly also are more likely to have poor health and certain chronic conditions. This could be because the rural elderly tend to be less educated and earn less.

Also concerning is that rural caregivers often face significant financial hardships. Rural caregivers (27 percent) report experiencing a moderate to high level of financial hardship. That compares with 23 percent of urban and 19 percent of suburban caregivers, the “Caregiving in Rural America” report said. Many have to make workplace accommodations, such as take time off and/or leave a job early.

One point to consider is that cultural habits also may prevent rural caregivers from taking advantage of available care. They may be more attached to their homes and, therefore, less willing to seek help outside them. Many also may be more self-reliant and, therefore, less open to the idea of receiving help.

Still, of note is that one rural program for the elderly has not encountered cultural resistance. A PACE site in rural Kulpmont, Pennsylvania, has found that seniors are receptive to coming to its center, which provides recreational activities, as well as physical and occupational therapy, and a primary care clinic. Amy Minnich, director of the site, said that the program brings in seniors several days a week. “Typically, rural seniors are less likely to come and socialize,” she said. “But we bring people in three to five days a week.”

People in the community, who have learned about the site through word-of-mouth, have reacted positively to the program, which offers an interdisciplinary team of physicians, nutritionists, social workers and others, to cater to the participants, she noted.  “It’s a very feel-good program,” Minnich said. “We have families that are sharing the word ... on what it’s done for their loved ones.”

Rural Caregiver Support

Seventy-nine Fearless Caregiver conferences have been held across the nation since 1998 with nearly half of the events having been held in Florida. This year, Gary Barg, conference host and author of The Fearless Caregiver book, will hold 11 of the events in rural communities. According to Barg, “We are taking the events into rural areas because as a rural caregiver, you have all the usual responsibilities and stresses of caregiving, compounded by issues of time, distance and terrain. You’re less likely to receive the help, support, attention, and respite that you need.” 

Caregiver.com has created a special information channel dedicated to rural caregivers. The channel includes articles, interviews and information specific to those caring for their loved ones in rural America.   (http://www.caregiver.com/channels/rural)
The following are a few rural support organizations from the Rural Assistance Center (www.raconline.org). See the Web site for more.

Caregiving Across the States (http://www.caregiver.org): Information on publicly funded caregiver support programs in each of the 50 states and the District of Columbia.

The Eldercare Locator (http://www.eldercare.gov/Eldercare.NET/Public/Home.aspx): A service of the U.S. Administration on Aging. It finds local agencies in every U.S. community that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services. The phone number is (800) 677-1116.

Rural Caregivers

Ruralcare.info is designed to help bridge the information gap and create a web support community for rural caregivers.  It also offers caregiver resources by state and region. 

Meals on Wheels Association of America (http://www.mowaa.org): Provides meal services to people in need. It provides one hot meal per day to seniors. Has recently expanded into rural communities.

Rural Caregiving and Alzheimer’s

Geographic isolation and low population density make general caregiving a hurdle in rural areas of the country. Taking care of people with Alzheimer’s and other dementias has its own set of difficulties. Thankfully, in many regions, programs are available to help caregivers cope better.

Dealing with dementia is no small feat—even in urban and suburban areas of the country. The disease, which may afflict as many as 5.2 million Americans, currently has no cure and is characterized by a loss of or decline in memory and other cognitive abilities. The onset of Alzheimer’s-dementia typically begins with forgetfulness, apathy and depression. Later symptoms include impaired judgment, confusion, and changes in personality and behavior. The disease eventually results in the complete loss of functional, behavioral and cognitive functions.

Informal caregivers provide the majority of care for persons with Alzheimer’s disease around the country. Spouses and family members who assume this responsibility not only have to deal with the physical demands, but the emotional strain as well.

“There are challenges in dealing with a person who cannot direct their own day, to feed themselves, to dress themselves, and who might be engaged in unsafe behavior,” explained Katie Maslow, director of policy development for the Alzheimer’s Association.

Rural Challenges

One of the most glaring problems facing rural caregivers of people with Alzheimer’s is the shortage of caregiving professionals. These include primary care physicians, as well as mental and behavioral health specialists.

The shortage of mental health workforce professionals is among the most significant challenges rural communities face, according to “The 2004 Report to the Secretary: Rural Health and Human Service Issues.” The National Advisory Committee on Rural Health and Human Services published this report. In 2003, 74 percent of 1,196 federally designated Mental Health Professional Shortage Areas were located in rural counties.
 
Besides a lack of health professionals in rural areas, there are also fewer community resources, such as adult day care centers where people with Alzheimer’s can go during the day for care—and give their caregivers some respite. Many rural communities are limited in fiscal resources and infrastructure to develop their own community-based programs. And in recent years, federal and state governmental support has been scaled back. Caregivers themselves may find the cost of services is too expensive and reimbursement policies are too restrictive. 
 
Other obstacles caregivers face include a lack of transportation and access to information or help.
 
Meanwhile, the flight of young people from these communities leaves the burden to spouses, many of whom are old and suffering from health problems themselves.
 
“The specific problems are the same for rural caregivers of people with Alzheimer’s and other dementias, and other rural caregivers: great distances that are involved, and the lack of services,” Maslow said. “It’s difficult to get services to a person in a rural area. The service provider has to travel a long time or the caregiver has to travel. Some of the services that we rely on in suburban and urban areas aren’t available and can’t be used. In addition, rural areas are generally lower income and [there are] fewer young people so [there is] more difficulty for caregivers. There’s a lack of healthcare, medical care and the kinds of community services people might need.”
 
 
Cultural Barriers

Even if primary care doctors and community services are available, rural caregivers may not seek out this assistance.

A 2001 study, which appeared in the “Journal of Behavioral Health Services and Research,” found that just a third of older rural residents with memory problems associated with Alzheimer’s asked their primary-care health provider for help. That compared with half of their urban counterparts.

“The finding that rural inhabitants with memory impairments were less likely to use a primary-care provider for their memory problems is a public health concern, and we certainly need to understand those barriers, which may include stigma, lack of available transportation and denial,” according to Brenda Booth, a University of Arkansas researcher and one of the article’s co-authors.

Indeed, social, behavioral, and attitudinal norms in rural communities may prevent people who need care from receiving it. Many caregivers in remote areas feel they should be self-reliant. There is a sense of individual responsibility involved in caring for a sick loved one—even if it may prove to be too overwhelming.

This reluctance to seek help as well as a lack of community resources, outlets and support in rural communities may compound the problem of isolation—a universal issue for caregivers.

“Some stories about rural caregivers are very sad in terms of a caregiver, usually the spouse of the person with   Alzheimer’s, who’s alone and feels that he or she can’t leave the person at all and that there are no options,” Maslow noted.

It can be dangerous anywhere in the country to have a person with Alzheimer’s living at home. Wandering is a common symptom among those with the disease. But the presence of guns in many rural homes is especially worrisome in cases of people with Alzheimer’s who may be living there, according to Maslow.
 
 
Federal Assistance

As many challenges as there are in caring for a loved one with Alzheimer’s in a rural community, state and federal resources are available. The Alzheimer’s Association, in partnership with the Administration on Aging (AoA), has a helpline that provides round-the-clock information and referral sources. Such indirect services, rather than direct in-home services provided by paid direct care workers, are often the only support available to family caregivers.

Meanwhile, the AoA’s Alzheimer’s Disease Supportive Services Program helps caregivers around the country. It provides competitive awards to states to expand the availability of community-level supportive services for people with Alzheimer’s and related disorders and their caregivers. The Public Health Service Act created ADSSP in 1992.

There are several ADSSP programs that directly affect rural caregivers, explained Shannon Skowronski, a health policy analyst with the Alzheimer’s Disease Supportive Services Program National Resource Center.

One of the most notable is Savvy Caregiver, which is in place in 43 counties in Michigan. It is designed to increase caregiver skills and confidence, create reliable and accessible networks of support for caregivers, and increase access to supportive services, according to Skowronski. The program consists of approximately 12 hours of sessions that involve helping caregivers to acknowledge the disease, develop emotional tolerance, and take control. It also provides them with a caregiver manual and educational CD-ROM.

Michigan has Savvy Caregiver trainings in several locations within rural communities convenient for rural caregivers. The program provides respite care (either in-home or out of home) so caregivers can attend Savvy Caregiver. It also offers training DVDs for caregivers who are not able to make it to in-person Savvy Caregiver sessions.

Nevada also has a unique ADSSP project that applies to rural caregivers. The purpose is to help caregivers provide care for their loved ones in their homes through the use of telemedicine technology. The state has developed an established network of dementia telehealth care that works to provide diagnostic and treatment services for Alzheimer’s disease in rural areas, as well as provide supportive services for dementia caregivers.

“By statute, the ADSSP has always had an explicit focus on reaching isolated populations impacted by Alzheimer’s disease, including rural caregivers,” Skowronski said.

In recent years, ADSSP projects have worked to reach rural caregivers through in various ways: remote communication methods—such as telemedicine, the Internet, university extension services, existing statewide high-speed broadband videoconferencing systems, telephone-based support groups, videotapes, and CDs; using and supporting existing community resources—such as local Alzheimer’s Association chapters or home service providers to help rural caregivers; and training and support of rural outreach workers to identify and assist caregivers of persons with dementia, she said.

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