SPECIALIZED ALZHEIMER’S CARING PROGRAM
PAHOKEE, FLORIDA

Contact Person: Babette Grzyboski, Director of Patient & Family Services
Alzheimer’s Community Care Association of Palm Beach and Martin Counties
801 North Point Parkway
West Palm Beach, FL 33409
Phone: (561) 683-2700

COMMUNITY DESCRIPTION

Pahokee, Florida (population 7,000) is located 40 miles west of Palm Beach. Lake Okeechobee to the west and the Everglades to the south serve to isolate the community and the additional 20,000 persons who live in the surrounding area. More than 60% of the area residents are elderly, minority (primarily Hispanic or African-American), or poor.

BACKGROUD HISTORY

Alzheimer’s Disease (AD) is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking, and behavior. It affects men and women equally, across every social, racial, and ethnic group. Data show that more than 7 of 10 individuals with this disease live at home, where nearly 75% of the caregivers are family or friends. Hired caregivers, the remaining 25%, are paid almost exclusively out-of-pocket at an average cost of $12,500 per year. Caring for persons with this disease is a time consuming task in urban areas, where social and health services are usually available; in rural areas without support services, it can be truly devastating for the family.

The Palm Beach Area chapter of the Alzheimer’s Association (AA) developed a proposal for a community based outreach project. The project would enable Pahokee and its surrounding area to participate in a joint federal/state demonstration project for rural areas with a large percentage of low income, minority, and/or elderly. In 1992, the Florida Department of Elder Affairs approved their participation in the demonstration program entitled FAVOR (Florida Alzheimer’s Volunteers Offering Respite).

PROJECT INITIATIVE

The AA chapter’s mission is to provide services to an underserved area that would help families and caregivers cope with the stress of caring for someone with Alzheimer’s Disease. The program meets its goals by offering adult day health care, in home respite, care management, support groups, information and referral, and educational sessions.

The Good Shepherd Church of God agreed to serve as the meeting place for the project, which operates five days a week from 8 AM to 5 PM. The daily routine at the adult day care center may include therapeutic activities, rehabilitation therapy, medical screening, personal care, and a nutritious meal. The program’s day care component has a paid program manager, nurse, and assistant. The center strives to preserve the dignity and enhance the quality of life for the client, thus preventing premature insitutionalization. Senior companions and community volunteers help to obtain a 1:3 staff to client ratio. They play an important role by socializing with the clients in singing, arts and crafts, and other activities. There are ten regularly scheduled volunteers and many others who contribute their time according to the planned activities and their personal schedules.

The In-Home Respite component is for homebound persons or those who do not have transportation to the center. Senior Companions provide services such as cooking, light housekeeping, transportation for appointments, and companionship for up to 20 hours per week. This time with the client frees the primary caregiver to take care of personal needs while providing peace of mind that the client is in good hands. The Senior Companions, who are 60+ years of age and of limited income, are trained by the Family Consultant to provide care for home-bound patients or to work in the Center. Those who qualify receive a stipend of $2.45 per hour.

A local Licensed Practical Nurse serves as the Family Consultant, insuring that needed services are provided. The Family Consultant holds the program together by providing counseling, information, training, and coordination of services. The clients are not charged for her services. The AA chapter collaborates with local churches, schools, the Rural Health Network, the state Human Resources Service office, and the county health department’s Med Mobile van to provide routine health services to individuals in the area.

As the program became established and the community became aware of its importance, the city offered space in what would be Pahokee’s civic center. Members of the community renovated the high school’s old dilapidated cafeteria and helped move to the new site in the spring of 1996.

FUNDING

This is a five year demonstration project funded by the US Department of Health and Human Services, Health Resources Service Administration, in conjunction with the Florida Department of Elder Affairs. The initial grant was for $125,000, followed by $110,00 the second year and $80,000 the following years. Currently in its fifth year, the program also receives funds from the local AD chapter. Community support in the form of transportation and meals from Senior Services, rent free meeting space, art and other supplies from businesses and individuals, and the time and effort of the many volunteers are all vital to the Center’s success.

CHALLENGES

Residents of this small, close knit community have a strong extended family bond. It has been a challenge for some residents to allow a stranger to care for their family member. The infrastructure in rural areas is less complex and has fewer services than in more populated areas. The pool of able and willing volunteers is small, and the distance from the main office to the center necessitates that staff be monitored by telephone and frequent trips to the area.

CURRENT STATUS

The program has received funding for a sixth year of operation. Services provided to persons with Alzheimer’s Disease continue unchanged, but are currently provided by the Alzheimer’s Community Care Association. Since its inception, the program has served 350-400 families. Four trained Senior Companions are serving 12 individuals in the In-Home Respite component of the program. Ten local elders act as Senior Companions at the Pahokee Center, serving 30 participants daily. The center has become an established community presence, both well regarded and well supported by members of the community. Community support via contributions, resources, and volunteer time will continue to be vital to the continuing success of this program. This community outreach program has been successful in providing support for Alzheimer patients and their caregivers, thereby allowing individuals to remain within the community and out of long-term care facilities.