The absolutely worst way to respond to the challenge of secularism is to adapt to secular standards in language, thought, and way of life. If members of a secularist society turn to religion at all, they do so because they are looking for something other than what the culture already provides. It is counterproductive to offer them religion in a secular mode that is carefully trimmed in order not to offend their secular sensibilities.
David Garland

Easing The Burden On Alzheimer

Easing The Burden On Alzheimer

EASING THE BURDEN ON ALZHEIMER’S FAMILIES

New York City Alzheimer’s Resource Center Offers Comprehensive Services To Caregivers
By Leane B. Cheek

Mrs. Kate Wiebert, 75, was referred by her daughter to the New York City Alzheimer’s Resource Center for counseling. Having spent her married life being cared for, Mrs. Wiebert had become increasingly angry and incapable of caring for her husband now suffering from Alzheimer’s disease. Although Jack Wiebert, 82, was still able to manage his daily activities, he had become depressed, confused and agitated. While medication had been prescribed by his physician, Mrs. Wiebert administered it haphazardly.

Counseling was initially conducted for both Mrs. Wiebert and her daughter. Mrs. Wiebert came to understand that she could benefit from counseling independently, one-on-one sessions were arranged which focused not only on reducing her anger but on reducing her stress. Home care services were provided to give her respite; an accountant was hired to take care of financial matters; and finally, through therapeutic role-playing, Mrs. Wiebert learned to modify her responses and to communicate with her husband in a more compassionate way. Kate Wiebert has since progressed from interventive counseling to a family support group where she reports she enjoys interaction with other caregivers.

Case histories like this one which reflect an emphasis on individual guidance as well as multi-service linkages for family members of Alzheimer’s disease patients characterize the efforts of the New York City Alzheimer’s Resource Center. Established as the first municipally supported agency of its kind in the nation, the Center directs 85 percent of its guidance and assistance activities to family caregivers.

As Janet S. Sainer, Commissioner of the New York City Department fo the Aging, which administers the Center, reported last July in testimony before the Subcommittee on Aging of the U.S. Senate Committee on Labor and Human Resources:

“The care of people with Alzheimer’s disease must include the care of people whose lives are affected by Alzheimer’s disease – namely, the families of Alzheimer’s victims. Families have taught us how desperately enmeshed they are in the dilemma of increasing demands and decreasing resources: financial, emotional and physical. We have seen first-hand how the progressive deterioration and unpredictability of the disease force the patient and family to adjust continuously to new and higher levels of impairment. With these everchanging levels come new and diverse needs that must be met.”

Working in collaboration with the New York City Chapter of the Alzheimer’s Disease and Related Disorders Association (ADRDA), the New York City Alzheimer’s Resource Center first opened its doors in March, 1984. It serves today as a central coordinating unit to link Alzheimer’s patients, their families and professional care providers with appropriate services and programs citywide. Funded by the City of New York under a special initiative of Mayor Edward I. Koch and the Brookdale Foundation, the Center offers guidance on such matters as referral to appropriate medical diagnostic centers, public benefits and entitlements, and other sources of support.

Because it is administered by the largest Area Agency on Aging in the country, which is also an arm of municipal government, the Center is able to rely on the Department’s 15 years of experience in linking families to community-based services – homecare, adult day care, respite, home-delivered meals, escort services, and friendly visiting. In the past four years, the Center has worked, as well, to identify service gaps and to ascertain how existing systems can be most effectively utilized to meet the specialized demands created by Alzheimer’s disease.

The Center recognized early on that Alzheimer’s families carry a staggering burden of conflicting emotions. It therefore began to provide free, confidential one-on-one counseling for short-term therapeutic intervention. Conscious, too, of the difficulties involved not only in coming to terms with the prospect of having to place an Alzheimer’s patient in a nursing home, but in making an appropriate placement selection, the Center provides expert guidance on these decisions, with post-placement follow-up where necessary.

With funding from the Administration on Aging, the Center recently implemented a legal and financial planning service for Alzheimer’s families who cannot otherwise afford private counsel. working in cooperation with the Hunter-Brookdale Institute on Law and Rights from Older Adults, the Center now provides a professionally trained and supervised core of law interns who offer assistance with power of attorney, estate planning, fair hearings, and negotiating procedures for securing benefits. the Center is now able to help families address numerous issues that pertain to long-term planning for Alzheimer’s patients.

Citywide Public Education

Public education has also been a main objective of the New York City Alzheimer’s Resource Center. Public understanding of Alzheimer’s disease was just beginning to take hold in 1984 through the efforts of the Alzheimer’s Disease and Related Disorders Association. Building on these efforts, the Center concentrated on dissemination of information about the disease itself and the Center’s availability to provide direct help – especially to family members. In addition to widespread distribution of a center brochure, media support, which included public service announcements and a special “car card” campaign in subways and buses, was instrumental in reaching Alzheimer’s families.

In a short time, the Center began to offer seminars and workshops aimed at specific target audiences – particularly those who are in frequent contact with Alzheimer’s patients but do not have enough information about symptoms or where to obtain help. The target groups have included clergymen, housing project staff and precinct police personnel.

From the beginning, the Center has held an Annual Mayoral Conference to raise public awareness and to provide an arena in which family caregivers and professionals can pose questions and make recommendations on how Alzheimer’s-related needs can be addressed. These conferences have annually drawn over 1,000 participants from across the city.

Each year’s mayor conference has provided not only a morning plenary session offering expert speakers but 10 concurrent afternoon workshops led by specialists in their fields and focusing on concrete caregiver problems. These have ranged from understanding the medical diagnostic measures that evaluate Alzheimer’s patients and financial planning for incapacity to communication with the cognitively impaired and use of the self-help network for caregivers.

3 Books Get Wide Attention

Publications are essential to providing help for those whose lives are affected by Alzheimer’s disease. The Center’s first book, ‘Alzheimer’s Disease: Where To Go For Help In New York City’, is a directory of current programs and services available to families and professional care providers, and is now in its third edition.

A second publication ‘Caring: A Family Guide To Managing The Alzheimer’s Patient At Home’, presently in use nationwide, is a 109-page, illustrated step-by-step approach to caring fo the Alzheimer’s patient in the home. The book includes up-to-date information and techniques recommended by medical experts and professional caregivers. Chapter topics include the principles of caregiving and resources for caregivers, creating a safe and manageable home and environment, applicable exercises and movement, and activities to help keep the patient alert. ‘Caring’ has been extremely well received by family members and professional care providers.

Over the years, the New York City Alzheimer’s Resource Center has received many inquires from across the country about replication or adaptation of its service components and publications. The Center continues to respond to inquiries regarding technical assistance in developing special initiatives or services for Alzheimer’s programs.

The Center’s newest publication. ‘Agendas for Action: The Aging Network Responds To Alzheimer’s Disease’, is, in part, a response to such inquiries. ‘Agendas for Action’ is a comprehensive, 164-page directory and summary of current services offered by State and Area Agencies on Aging in 46 states to Alzheimer’s disease patients and their families. Also highlighted are state efforts, with emphasis on task forces and study commissions created to investigate the impact of Alzheimer’s disease and to recommend appropriate policy and legislative action. In addition, the directory includes an extensive listing of the wide range of Area Agency on Aging activities. A special section is dedicated to the Administration on Aging’s 12 demonstration projects now being funded through its Alzheimer’s Disease Initiative.

As Carol Fraser Fisk, Commissioner of the Administration on Aging, observed in the introductory section of ‘Agendas for Action’:

“The nation’s State and Area Agencies on Aging have earned the heartfelt thanks of many thousands of people for their actions to develop and expand systems of family and community-based care for the victims of Alzheimer’s disease. ‘Agendas for Action: The Aging Network Responds to Alzheimer’s Disease’ documents not only what we have achieved but also instructs us, through its many examples of innovative programs, that much more can be done.”

It is currently estimated that there are from 2.5 to 3 million elderly across the nation who are victims of the disease. With the continuing dramatic increase in the very old, it is expected that the incidence of Alzheimer’s disease will also increase.

Role of the Aging Network

Research indicates that most Alzheimer’s families keep their relatives at home for 5 to 7 years after the diagnosis has been made. These caregivers need increasing help in managing the patient in the home and in coping with the rigors of what has been so accurately called the “36- hour day.” A sadly distinguishing feature of Alzheimer’s is that it follows a lengthy course of decline and that its continuum is staggering both in the intensity of care needs and the toll it takes on the family caregiver.

The New York City Alzheimer’s Resource Center holds the view that the aging network is in a unique position to respond to the multiple needs of Alzheimer’s patients and their families. With 56 State Units and 672 Area Agencies on Aging, the network administers a variety of community- based services, has expertise in entitlements, and has the capacity and ability to link those in need to local community resources and various service systems. It also has an administrative structure in place which can be built upon in a very cost-effective fashion to meet the needs of the Alzheimer’s family population.

For more information about the Center, contact Randi Goldstein, Director, New York City Alzheimer’s Resource Center, 280 Broadway, New York, N.Y. 10007 (212) 577-7564.

About The Author:

Leane Cheek is Associate Director of Public Affairs for the New York City Department for the Aging.

The names used in the case history in this article are fictitious.