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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