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January
1997 Executive Summary
Health Resources Services Administration
Bureau of Primary Health Care
Division of Special Populations
PROJECT OFFICER:
Carol Sherman, DDS (1991-1996)
Ivana Williams, M.P.H. (1996-1998)
PREPARED BY:
The Gerontology Center Research Team
University of Kansas
Rhonda J.V. Montgomery, Ph.D.
Tracy X. Karner, Ph.D.
Jay P. Schaefer, M.A.
Lisa Cox Hall, B.A.
with assistance from:
Karl D. Kosloski, Ph.D. University of Nebraska at Omaha
• Program
Description
• Evaluation
• Services
Provided Through The Demonstration
• Description
of Demonstration Clients
• Service
Use
• Respite
Client Satisfaction
• Significant
Impacts of The Demonstration Programs
• Legacies
of the Demonstration Project
• Recommendations
and Future Directions
The Alzheimer's Demonstration Grant to States Program was authorized through
Sections 398, 399 and 399A of the Public Health Service (PHS) Act, as amended
by Public Law 101-557 Home Health Care and Alzheimer's Disease Amendments of
1990. The goal of this legislation was to expand support services for persons
with Alzheimer's Disease and their caregivers. Special attention has been given
to reaching hard-to-serve and underserved populations.
The demonstration project was intended to assist grantees in planning, establishing,
and operating demonstration programs in the following areas:
(1) program development
(2) service delivery, and
(3) information dissemination.
Fifteen grantees were selected through two rounds of a competitive requests for
proposals. In September of 1992, eleven states (DC, CA, FL, ME, MD, MI, MT, OH,
OR, PR, SC) received a three year Alzheimer's Demonstration Project grant award
from the Health Resources and Services Administration (HRSA), Bureau of Primary
Health Care (BPHC) of the U.S. Department of Health & Human Services. In July
of 1993, four additional states (GA, HI, NC, WA) received a grant. The grant
was intended to develop a statewide system of support services for caregivers
and individuals with Alzheimer's Disease and related dementias.
A. Purpose
The primary purpose of the evaluation was to monitor and assess the implementation
and outcomes of the fifteen demonstration programs. A special focus has been
given to documenting efforts to reach and serve rural and minority populations.
This evaluation covers the first four years of operation for each demonstration
site.
B. Evaluation Design
Because this project was a demonstration in the true sense of the word, the research
design took into account the evolution and development of the state programs.
The data were evaluated in two phases. Phase I was considered the developmental
phase and included grant activities from October 1992 through September 1994
which were described in an earlier report. Phase II of the demonstration comprised
grant activities from October 1994 through December 1995 (June 1996 for second
group of grantees) which were more representative of established programs. This
report covers the project in its entirety with special attention to the Phase
II activities of the demonstration. It is believed that the data from the latter
two years provide a more accurate accounting of the activities and impact of
established programs serving hard-to-reach and underserved populations than do
the data from the earlier period.
C. Goals of the Evaluation
The evaluation design included both a descriptive component and an outcome component
that addressed three general questions.
1. What services were developed and how were they delivered?
2. Who was served and how satisfied were they?
3. What impact did the demonstration programs have on the existing service delivery
systems of the participating states or entities?
D. Data Collection
Data have been gathered from six primary sources: Client Records, Program/Employee
Records, Client Satisfaction Interviews, Site Visits, Review of Project Documents,
and Telephone Consultations.
The fifteen states provided three specific types of services through the Alzheimer's
Demonstration Project grant: Outreach, Support, and Respite.
A. Outreach efforts
Outreach efforts were considered "gateway services" to increase the awareness
of Alzheimer's Disease and the services available within the community.
Education programs provided information and training to family caregivers or
staff or volunteers of community programs and organizations.
Training efforts included inservice or other structured events for staff and
volunteers of the demonstration programs.
Outreach activities provided information about Alzheimer's Disease and demonstration
intervention and support programs within the community.
These events facilitated 1) referrals, 2) established relationships with prospective
client families, or 3) recruitment for client enrollment.
B. Support Services
These services included case management, client advocacy, support groups, ID
bracelets, diagnosis and assessment as well as providing an information center
in communities with limited dementia specific expertise. Support services also
included transportation, translation and interpretation services, companionship
to clients, and assistance and encouragement to participate in program activities.
C. Respite Services
Respite services provided through the demonstration included In-home, Adult Day
Care, and Residential/Institutional. Respite was developed as one of the two
main purposes of the grant and each area developed the programs that would be
most appropriate for their local communities.
The HRSA / BPHC Alzheimer's Demonstration has been an overwhelming success in
identifying how to serve hard-to-reach and underserved populations and, in fact,
serving them. Over the four year period, 6,938 families caring for a relative
with Alzheimer's Disease in the community have been served by the programs.
* 53.2% of these families lived in rural areas
* Nearly 50% of these families were ethnic minorities
Additionally, data revealed that clients had used few other support services
prior to enrollment in the demonstration. The sites did reach previously unserved
areas and communities.
* 43.6% of the clients had not used any formal services prior to intake
* An additional 44% of clients had only used one to two services before the demonstration
The demonstration successfully targeted Alzheimer's families and delivered needed
respite and support services.
* 68% of the clients had received a diagnosis of Alzheimer's Disease.
* The average elder age was quite high, 78.8 years.
Clients were very dependent upon their caregivers for performing very basic functions
of everyday living.
Virtually none of the elders could buy food or clothing, use transportation,
prepare meals, or manage money, without at least some assistance; and over three-fourths
of these elders could not perform these activities at all or could do so only
with a great deal of assistance. Similarly, over half of the elders required
assistance with such basic functions as bathing, using the toilet, dressing,
and oral care.
The majority of elders were female and most often lived with their primary caregivers.
* 41.9% lived with spouses; 30.8% lived with their children
* Most elders (68.4%) had incomes of less than $15,000 per year
The majority of caregivers were also female.
* 46% of Caregivers were adult children
* 34% of Caregivers were spouses
* 46.7% of Caregivers were employed outside the home
1,039,506 service units have been delivered through the HRSA/BPHC demonstration
project. Of this number of service units, 967,776 units were of in-home respite
and adult day care alone.
Client satisfaction was assessed through interviews with 1311 primary caregivers
for all demonstration clients receiving any form of respite services. The distribution
of demographic and background characteristics of survey respondents were consistent
with those of the total population clients actually served by the demonstration
project.
Overall, satisfaction with the demonstration services was extremely high.
Differences in satisfaction were observed between ethnic groups. Whites, Blacks
and Hispanics all had significantly lower mean levels of satisfaction than Asians,
with no differences among the former three groups. Overall, there was a tendency
for Whites and Asians to be somewhat more satisfied than Hispanics and Blacks
with the demonstration services. These differences, however, tended to be very
small. Findings suggest that differences among ethnic groups in satisfaction
are likely to be due to regional factors (e.g., program-specific factors such
as cost, service availability, etc.) that co-vary with ethnicity.
No differences in satisfaction were found to be associated with the relationship
of the caregiver to the elder.
The level of client satisfaction was found to be lowest among persons residing
in urban communities with populations greater than 50,000.
A. Changes in Service Environments
The demonstration served as a catalyst for permanent changes in service environments
as well as the development of new services and resources to support these new
services. Although there is considerable variation among the fifteen grantees
in the impact of the demonstration programs, significant changes have been noted
in each site.
Linking Agencies
The most consistent impact has been the development of new or stronger links
between organizations and/or service systems which had previously operated independent
of one another. These newly created partnerships and collaborations have resulted
in the better coordination of service delivery among service organization, significant
improvement in service infrastructures, and a greater capacity to serve ethnically
diverse populations. Two types of linkages have been particularly important.
Strong working relationships have been established between traditional network
agencies serving the elderly and local chapters of the Alzheimer's Association
as well as between traditional service networks and ethnic community organizations.
Increased Awareness
Repeatedly, the grantee programs have documented that the first essential step
toward improving care for persons with Alzheimer's Disease has been to increase
awareness of the general public about Alzheimer's Disease and the support needs
of caregivers. This increased awareness has been a major legacy of the demonstration
in all of the states, but has been especially important in the rural areas and
ethnic communities.
B. Service Use Changes
Reaching New Populations
Support services have been successfully developed and delivered in several communities
where services did not exist previous to this project. Support services have
been established in rural communities in Florida, Georgia, Hawaii, Maine, Michigan,
North Carolina, South Carolina, and Oregon. The District of Columbia has successfully
developed a program to serve Alzheimer's persons who live alone and are without
family support. New service programs have been developed for: Latino populations
in Florida, California, and Washington; Native Americans in Washington and Montana;
Korean and Chinese communities in Washington and Asian Pacific groups in Hawaii.
Providing New Services
In addition to establishing support services in underserved areas, the demonstration
has also led to the development of new services and new models of service delivery.
Notable examples include the Mobile Day Care program in Georgia, the Safe Return
program in Montana, and the Legal Aid program in California.
A. Lessons in Program development
The cumulative experience of the fifteen grantee programs generated several important
insights that will be useful to any future endeavor to create or expand support
services for an ethnically diverse population of families dealing with Alzheimer's
Disease.
Flexibility is essential
The flexibility allowed by the funding agency in the design and implementation
of the various state programs was consistently reported by state program administrators
to be invaluable in the success of their programs.
Rural communities have special needs
A need for more transportation and a lack of trained workers created special
challenges for development of programs in rural areas.
Local community commitment is essential
Greater success was observed among programs that had engendered the commitment
of their local communities.
Need for ongoing technical support for outreach, training, and education
Technical support efforts were found to be particularly critical for success
of programs in remote rural areas that tend to be isolated from educational opportunities
and resources. There is a need for assistance with education of the general public
and development of culturally appropriate materials and effective outreach techniques.
Building trust is the first step of program development in ethnic communities
Experiences of the project staff have reinforced commonly held beliefs that within
minority ethnic communities acceptance of new services rests upon gaining acceptance,
trust, and support from respected members of the community.
Need for sufficient time for program development
An important finding of the HRSA projects as a whole concerns the intensity of
time and effort required in both outreach and one-to-one advocacy with ethnic
minority clientele before respite care utilization can begin. In communities
with limited knowledge and awareness of Alzheimer's Disease, it is first necessary
to place considerable emphasis on community awareness and education activities
conducted in appropriate languages. Significant effort must also be invested
in developing services which will respond sensitively to cultural issues related
to Alzheimer's Disease and service use (i.e.; cultural meaning of Alzheimer's
Disease, shame, social stigma, need for privacy).
No single model of respite is appropriate for all communities or all persons
Many of the project personnel identified limitations of volunteer or "paid" volunteer
programs. Together the cumulative experiences of the 15 grantees underscored
the need for a diversity in respite programs to match the diversity of the target
population and local staffing issues.
B. New directions for the development of respite programs
Through flexibility and innovation, the fifteen grantees have identified new
means of better providing the needed services to Alzheimer's families.
Early interventions
By offering outreach, case consultation, caregiver information / education services
and introducing their program through other trusted 'helpers' already known to
the families encourages the pursuit of respite services in a more timely manner.
The development of discrete programming for persons in earlier stages of dementia
may also help combat the frequent lament that families tend to seek respite services
too late in the disease process.
Mobile Respite Care
The difficulties of creating Adult Day Care programs in rural settings can be
addressed through the creation of satellite programming which could be introduced
in conjunction with (or in lieu of) centralized programs.
Integrating service systems
To maximize the long term success of programs, new programs should be integrated
into existing service systems rather than identified solely with the program
staff.
A continuum of respite services
Optimally a continuum of respite services should be offered. When a full range
of respite options is not available, families experience a "gap" in services
when the condition of the impaired person changes. Additionally, under this condition,
families are more likely to use available services inappropriately (i.e.; too
late, or too soon) to fill the "gap".
C. Resource Development
The continuation of many of the demonstration services has been fostered in two
specific ways. In some states, demonstration services have been integrated into
existing service systems and will continue under these state or local programs.
This mechanism has been used in North Carolina to continue respite care, in Oregon
to continue training of Case Managers, and in Florida to continue the Group Respite
programs. In other states, the coalitions of service agencies that emerged through
the HRSA demonstration have worked to locate and develop new resources to support
the continuance of demonstration services. Particularly successful resource development
has taken place in Michigan, Oregon, South Carolina, and California.
D. Primary Care Initiative
During year four of the demonstration, ten of the original grantees were awarded
additional funds through competitive requests: District of Columbia, Florida,
Georgia, Maine, Michigan, Montana, North Carolina, Ohio, Oregon, and South Carolina.
These funds were specifically set aside to develop partnerships between established
demonstration programs and local primary care organizations.
E. Brookdale and HRSA Collaboration
In 1995, The Brookdale Foundation formed a partnership with the HRSA/BPHC Alzheimer's
Demonstration program to establish networks of BNGRP sites in states with demonstration
grants. This collaborative effort has been funded in eight of the fifteen demonstration
states: California, Florida, Georgia, Maine, Michigan, North Carolina, South
Carolina, and Washington.
The Alzheimer's Demonstration Project has been an overwhelming success in identifying
and serving hard-to-reach and underserved populations. The insights and the legacies
of the demonstration have provided benefits that will continue far beyond the
actual families served. The knowledge of how to develop appropriate services
for various cultural groups, how to integrate new services into existing networks,
and how to address local community needs are indeed applicable to addressing
the needs of Alzheimer's families, but moreover to other service populations
and health care programs. Certainly, the outcomes from the demonstration evaluation
can be used to effectively replicate successful service programs in other communities.
Four overall themes are presented as recommendations for future program development:
• Appropriate Outreach
• Agency Credibility
• Linking to Existing Service Systems
• Linking to Health Care Systems
A. Outreach
Significant community outreach and education are required to successfully serve
hard-to-reach populations. The demonstration repeatedly revealed that both elders
and professionals in underserved communities had limited knowledge and understanding
of Alzheimer's Disease and its symptoms.
B. Credibility
To effectively reach minority communities, service agencies must work closely
with, and through, individuals and/or agencies that have credibility within the
specific community. Several strategies for working with local community organizations
have emerged from the demonstration efforts and have been essential in successfully
serving various cultural groups.
C. Linking to Existing Service Systems
The demonstration clearly illustrated the benefits of allowing state and local
community agencies latitude to create programs that capitalize on existing resources
and enhance cooperation among community organizations that had previously worked
independently. Additionally, the project demonstrated the advantages of centralizing
some resources. Specifically, technical assistance, outreach strategies, marketing
approaches, and educational programs could facilitate the development of similar
programs in other areas. Centralized resources would substantially reduce the
start-up costs of new programs and facilitate supportive networking among existing
programs.
D. Linking to Health Care Systems
Often providers of medical services are unfamiliar with the support services
and how to obtain them. Moreover, the non-medical needs of families dealing with
Alzheimer's Disease also go unrecognized by many physicians. Physicians, who
often serve as authority figures or advisors to these families, provide an opportunity
to reach families earlier. The current trends in medical cost savings, necessitate
developing new mechanisms for directly linking the health care systems and networks
of social support systems for these families.
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Dept. of Health & Human Services
