= 1 a s a } U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Y Office of Human Development Services hds _ Administration on Aging % uman a aeunle ment ae } services f = oe ei ' - Volume II ec and Area Agency Ter Reni Cie ae ''PUBLIC HEALTH LIBRARY ''STATE AND AREA AGENCY INSTRUCTIONAL GUIDE FOR ALZHEIMER'S DISEASE FAMILY SUPPORT GROUPS Prepared for the Administration on Aging Under Grant No. 90-APO0003 Aging Health Policy Center University of California, San Francisco San Francisco, CA 94143 April 1984 U.S. DEPOSITORY AUG 2 1984 ''7] 70 | ie H+ 27 pe ''STATE AND AREA AGENCY p\ rT INSTRUCTIONAL GUIDE (UbL INTRODUCTION This document has been developed to serve as a guide for the training of Area Agency on Aging (AAA) staff and other aging personnel in regard to the Administration on Aging (AoA) initiative on the development of support groups for families of older persons with Alzheimer's disease. It is designed primarily for State Agency use in the conduct of training in how to develop family support groups; however, it may be adapted for use by other . professionals in the field of aging. The intent of this instructional guide is to provide a basic outline of the minimum information on Alzheimer's disease and family support groups which State Agencies on Aging need to present to Area Agency staff. The instructional guide does not stand alone, but is intended to be used in conjunction with the Alzheimer's Disease Handbook and the technical assistance manuals developed by the Long Term Care Gerontology Centers* to present an overview of the disease as well as the basic methodology for developing and sustaining Alzheimer's family support groups. It should be noted that these documents only provide the structure and content areas for a training program. A significant amount of additional preparation may be needed to develop the training sessions using the Instructional Guide and the Handbook. It is assumed that State and Area Agency staff will have their own training methods. This document is to be-used as a course outline for the basic content of the training sessions rather than limit the direction and scope of the training program. With this in mind, the instructional guide has been designed to be used as a foundation for the development of either a whole day training session, a half day training session, a series of workshops, or whatever format agency staff deem appropriate. State Agencies are responsible for taking the lead in developing the training format for their respective states. When State Agency staff are prepared to initiate this training effort, LTCGC staff can provide assistance in identifying appropriate resource persons and ogranizations who can aide in planning the training methodology. As Area Agencies prepare to launch a special initiative on the development of family support groups, the participants in the planning process may include representatives from the State or Area Agency Advisory Board, religious organizations, service providers, the health and mental health network, the social service network, the Alzheimer Disease and Related Disorders Association (ADRDA), and the American Association of Retired Persons (AARP). After the state training sessions have been completed, State Agencies need to follow up with each Area Agency to identify the progress of local training programs, identify specific needs of trainers, and provide additional assistance if necessary. This monitoring will also serve to identify successful methodologies and innovative training formats and will alert the state as to Area Agency progress in developing family support groups. ''PURPOSE OF THE AoA ALZHEIMER'S DISEASE INITIATIVE The purpose of the AoA Alzheimer's disease initiative is to increase the support and assistance available to families in coping with the problems associated with the disease. It is anticipated that this effort will improve the quality of life for persons with the disease and may, in a number of instances, avoid or delay institutionalization of these older persons. In those areas where support groups have already been established, caregiving family members are very involved in helping these groups become established and maintained. Professional assistance is needed to help more groups get organized and to provide back-up resources when needed. These groups provide members with mutual emotional support, the opportunity to exchange experiences in coping with the problems of Alzheimer's disease, information about the disease itself, and information about the resources available for assistance. Models of such groups currently exist and have been successfully implemented by several of the Long Term Care Gerontology Centers and other organizations. The Alzheimer's Disease and Related Disorders Association in particular has played a major role in promoting the establishment of support groups around the country. 7 While there is a great deal of material to cover in the course of training professionals about Alzheimer's disease, and each trainer has a different set of objectives, there are several specific points concerning the nature of family support groups and the role of the aging network in establishing and maintaining these groups -which should be emphasized in the course of the training program. It is clear that successful family support groups are built on the following: oO Family support groups need a core person with the appropriate skills to provide coordination and/or ongoing consultation to ensure appropriate and accurate educational support, emotional support, and guidance; ° Family support groups need to be affiliated with health or social service agencies to give them credibility and continuity; oO Family support groups need to be linked in some ongoing way with the formal health care system to help make needed medical and/or psychiatric interventions available to families and their patients; ° Although family support groups can be run by caregivers, it is generally better to have a professional organize, coordinate, and facilitate the group. The qualities of a good leader include having the ability and willingness to take responsibility for leadership of the group, knowing how to identify serious problems that cannot be handled in the group and to make appropriate referrals, and having the ability to separate one's personal situation from that of group members. leaders should also understand Alzheimer's disease and the aging process, have a knowledge of group behavior and leadership strategies, and possess basic clinical skills such as the ability to empathize. ° A significant effort may be required to identify, involve, and get the support of family support group leaders and resource persons. Family ''support group leaders may be drawn from the ranks of counselors, therapists, social workers, nurses, mental health workers, clergy, geriatric teams, psychologists, and specialists in aging. oO Family support groups are not self-perpetuating and cannot run themselves; they require periodic monitoring and possibly assistance in keeping them on track. ° Area Agencies on Aging need to develop or enhance specific staff expertise in the area of family support groups. It is important that Area Agencies on Aging clearly identify their own staff and appropriate provider staff that can serve in the capacity of assisting individuals in the establishment and/or maintenance of family support groups. ° Area Agency staff should encourage the development of appropriate community-based resources for Alzheimer's patients and their families, e.g-, respite care, adult day care, counseling services, financial counseling, legal assistance, etc. > Family support groups provide several direct benefits for Alzheimer's patients and caregivers: they assist in keeping people in their home and community as long as possible while delaying institutionalization, provide information and support to caregivers, prevent the burn-out of caregivers, and give hope and encouragement to caregivers. Family support groups may also help families of older persons with Alzheimer's disease by increasing access to available community-based services such as adult day care, respite care, and socialization activities; by increasing access to counseling and assistance to patients and their families in coping with the disease; and in obtaining assistance in determining the appropriate institutional placement when and if it becomes necessary. Family support groups will, in turn, provide significant benefits to the aging network as well. Family support groups will make better use of the current array of community-based services available for Alzheimer's patients. In doing so, family support groups will provide a relatively significant impact while requiring limited expenditures and resources. The linkage of State and Area Agencies with Alzheimer's family support groups will heighten staff awareness and understanding of the disease and its implications for service delivery systems. Given the ever increasing number of older persons that have Alzheimer's disease and its devastating consequences on the victim and the victim's family, State and Area Agencies must assume a leadership role in the creation of family support groups and coordinating the array of appropriate home and community-based services. For if State and Area Agencies do not get involved in this effort, it is likely that the needs of Alzheimer's disease patients and their families will be neglected. While there is no cure for Alzheimer's disease at the present time, creating family support groups will at least serve to reduce the tragic impact of this disease upon the elderly and their families. ''CONTENT OF THE INSTRUCTIONAL GUIDE The instructional guide provides an outline of the material to be presented in regional training programs. It is divided into five sections: chapters one through four identify objectives, session content, and supplementary reading materials as they relate to the four respective chapters in the Alzheimer's Disease Handbook; and the fifth section is a handout of selected bibliographic references and additional Alzheimer's disease experts. The following chapters are to be used in conjunction with the Alzheimer's Disease Handbook and the two technical assistance manuals* prepared by the Long Term Care Gerontology Centers in preparing a training program. Chapter 1 The Scope and Nature of Alzheimer's Disease Page 5 Chapter 2 The Psychosocial Aspect of Alzheimer's Disease Page 7 Chapter 3 Resources for Helping Families to Cope With Alzheimer's Disease Page 9 Chapter 4 Family Support Groups Page 11 Selected Bibliography Page 13 Additional Resource Persons Page 15 *Lindeman, David A. Alzheimer's Disease Handbook. San Francisco, CA: Aging Health Policy Center, U.C. San Francisco, 1984. Middleton, Lillian. Alzheimer's Family Support Groups: A Manual for Group Facilitators. Tampa, FL: Sunccast Gerontology Center, University of South Florida Medical Center, 1984. Zarit, Steven H., Nancy K. Orr, and Judy M. Zarit. Working with Families of Dementia Victims: A Treatment Manual. Los Angeles, CA: Andrus Older Adult Center, Andrus Gerontology Center, University of Southern California, 1983. ''I. II. Objectives: CHAPTER 1 THE SCOPE AND NATURE OF ALZHEIMER'S DISEASE Through this session and the reading materials, participants should develop an ability to: A. Describe what Alzheimer's disease is, it's possible causes, and its impact on changes in behavior. B. Identify common diagnostic procedures used in detecting Alzheimer's disease. C. Identify and explain the common treatments associated with Alzheimer's disease, and the lack of a cure. Session Content and Activities Time Required - Approximately 1-2 hours A. Nature, symptoms, and diagnosis of Alzheimer's disease. 1. Topics to be covered (20-30 minutes) oo°0o°0 o°o Definition of Alzheimer's disease Incidence of the disease Extend and cost of institutionalization Other causes of dementia -- multi-infarct dementia, alcohol toxic reactions, etc. The physical and psychological symptoms of the disease The stages of Alzheimer's disease The need for differential diagnosis -- a comprehensive evaluation which includes blood tests, a CAT scan, psychological testing, etc. No clinical tests can definitely diagnose Alzheimer's disease -- only an autopsy can confirm Alzheimer's disease Discussion and clarification of facts and "myths" (10-15 minutes) ''III. B. Causes and treatment of Alzheimer's disease 1. Topics to be covered (20-30 minutes) ° Possible causes of Alzheimer's disease -- biochemical, trace metals, viruses, immune system, heredity, psychosocial ° No specific cause has been identified o . There is no available treatment to cure, reverse, or stop the disease oO Treatment modalities are used to assist the afflicted individual through the course of this disorder in comfort and dignity Qe Discussion of current trends and future directions in identifying the cause of the disease; discussion of treatment modalities C. Optional Audio Visual - Films (20-30 minutes) 1. "The Silent Epidemic: Alzheimer's Disease" 2. "Dementia in the Middle and Later Years" Related Reading Materials: NIH - Q&A: Alzheimer's Disease NIMH - Fact Sheet: Senile Dementia Select Committee on Aging - Senility: The Last Stereotype Burke Manual - Managing the Person with Intellectual Loss at Home Mace and Rabins - The 36-Hour Day Time - "Slow, Steady and Heartbreaking" (Appendix D) Hayter - "Patients Who Have Alzheimer's Disease" (Appendix E) Eisdorfer and Cohen - "Diagnostic Criteria for Primary Neuronal Degeneration of the Alzheimer's Type" (Appendix F) Eisdorfer and Cohen - "Phases of Change in the Patient with Alzheimer's Dementia" (Appendix G) NIH - The Dementias (Appendix I) Newsweek - “A New Clue in Alzheimer's" (Appendix J) Glenner - "Alzheimer's Disease: A Research Update” (Appendix K) Generations (Appendix 0, pp. 6, 8, 14, 19, 24) ''CHAPTER 2 THE PSYCHOSOCIAL ASPECT OF ALZHEIMER'S DISEASE Ls Objectives: Through this session and the readings, those participating should be able to: A. Understand the family context of the patient, including the patient's role as a family member, the role of his family in providing care, the stresses upon the family and the family's needs. Be Understand the medical, financial and legal implications of Alzheimer's disease for the patient and his family. II. Session Content and Activities Time Required - Approximately 1-2 hours A. Social and psychological impact of the disease on the patient, family, and caregiver 1. Topics to be covered (20-30 minutes) — Emotional and psychological response of caregivers Social isolation of caregivers Impact on the family The emotional and psychological needs of caregivers The behavior changes and physical needs of the Alzheimer's patient -- memory disturbance, communication difficulties, personal care, inappropriate behaviors, etc. ° The need for safety precautions ° The need for ongoing, appropriate medical attention oooo0o9o 2. Discussion of the need to emphathize with patients and families (10-15 minutes) ''B. The financial and legal needs and burdens of families: 1. Topics to be covered (20-30 minutes) ° The type, scope, and limitations of public and private financial assistance -- loss of income, costs of care, cost of institutionalization, lack of public programs oO The need for an early family financial strategy oO The type and scope of legal problems = conservatorship, power of attorney, wills, driver's license, estate concerns oO The need for individualistic and early attention to legal issues o The role of AAAs in providing assistance and referrals 2's Discussion of the need for legal and financial services and the role of AAAs C. Optional Audio Visual - Films (20-30 minutes) Te "Peege" 2s "The Glass Curtain, A Poem in Prose” III. Related Reading Materials: Lezak - "Living with the Characterologically-Altered, Brain-Impaired Patient" (Appendix L) Generations (Appendix 0, p. 41) Rabins, et al. - "The Impact of Dementia on the Family” (Appendix M) Mace and Rabins - The 36-Hour Day McDowell - "Managing the Person with Intellectual Loss at Home" Family Survival Project - Learning to Survive Bosshart, et al. - Family Survival Handbook -8- ''able II. CHAPTER 3 RESOURCES FOR HELPING FAMILIES TO COPE WITH ALZHEIMER'S DISEASE Objectives: As a result of this session and the readings, participants should be to: A. Identify ways to help the family, including referral to other resources and services. B. Identify the specific types of resources available to assist families. C. Identify the role of the aging network in coordination and referral of these resources. D. Clarify the role of the LTCGC as a primary resource for AoA Regional Offices, SUAs, and AAAs. Session Content and Activities Time Required - Approximately 1-2 hours A. Type and scope of resources available to Alzheimer's patients and their families 1. Topics to be covered (20-30 minutes) ° ° The array of home and community-based services available to patients, families, and caregivers -- home health care, adult day care, respite care, counseling, meals, transportation, homemaker/chore, etc. The limitations and barriers to obtaining home and community-based services The benefits of and preference for home and community-based services The need for institutional care in the course of the disease The emotional impact of institutionalizing a relative The difficulties of obtaining an adequate nursing home The role of Area Agencies in identifying and supporting services as well as providing referrals Discussion of the role of the aging network in assisting patients and families in obtaining in-home, community-based, and institutional care (10-15 minutes) ''Till. B. Organizations that deal specifically with Alzheimer's disease and the role of LTCGC's as a resource Vie Topics to be covered (30-40 minutes) ° The roles and services of ADRDA and the Family Survival Project The way Area Agencies can work with the ADRDA and the Family Survival Project organization The LTCGC activities in the area of Alzheimer's disease The resource capacity of the LTCGC, and the LTCGC staff contact person Discussion of the role of the LTCGCs in assisting State and Area Agencies in training and developing family support groups (20-30 minutes) C. Handouts and supplemental information (10-15 minutes) 1. 2. 36 4. Attached selected bibliography Attached list of additional contact persons Identify the ADRDA and FSP organizational brochures Identify the availability of newsletters Related Reading Materials: Generations (Appendix 0, pp. 22, 28, 46, 47) Bosshart, et al. - Family Survival Handbook Cohen and Eisdorfer - Family Handbook on Alzheimer's Disease McDowell - Choosing a Nursing Home for Appendix N) ADRDA brochure (Appendix A) Family Survival Project brochure (Appendix A) Newsletters (Appendix B) Audio Visual Aids (Appendix C) -10- the Person with Intellectual Loss ''CHAPTER 4 FAMILY SUPPORT GROUPS ds Objectives: As a result of this session and the readings, participants should be able to: A. Identify the role family support groups play in assisting Alzheimer's patients, their families, and caregivers. B. Identify the principal aspects of family support groups. Cs Identify the role of State and Area Agencies on Aging in the establishment and maintenance of family support groups. II. Session Content and Activities Time Required - approximately 1-2 hours A. Goals and activities of support groups in general and Alzheimer's family support groups in particular 1. Topics to be covered (20-30 minutes) ° The basic roles of self-help groups and family support groups ° The basic roles, structure, and activities of Alzheimer's family support groups oO The benefits of Alzheimer's family support groups for members and the aging network 2. Discussion of the specific activities, goals, and benefits of Alzheimer's family support groups (10-20 minutes) B. The establishment of an Alzheimer's family support groups and the role of AAAs in this process 1. Topics to be covered (30-40 minutes) o Obtaining a group coordinator and sponsorship Enlisting support of community health and social service agencies and a medical ally Developing support group membership Organizational structure Place, time, and frequency of meetings Meeting agendas Publicity and information dissemination ° ooo0°0 -11- ''° Affiliation of local family support groups with a larger organization or coalition ° The availability of the two LTCGC technical assistance manuals which address the development of Alzheimer's family support groups 2. Discussion of the specific role Area agencies can play in the establishment and maintenance of alzheimer's family support groups (20-30 minutes) oO Encourage the development of family support groups through 1) the provision of technical assistance, 2) facilitating and sponsoring groups, 3) disseminating information, and 4) identifying resource persons III. Related Reading Materials: Middleton - Alzheimer's Family Support Groups: A Manual for Group Facilitators (Suncoast LTCGC) Zarit, Orr, and Zarit - Working with Families of Dementia Victims: A Treatment Manual (Andrus Older Adult Center) Generations (Appendix 0, pp. 44-45) -12- ''SELECTED BIBLIOGRAPHY JOURNALS, ARTICLES AND PAPERS Burnside, I. M. “Health Care of the Confused Elderly at Home.” Nursing Clinics of North America, June 1980, Vol. 15, No. 2. Cohen, D., G. Kennedy, and C. Eisdorfer. "Phases of Change in the Patient with Alzheimer's Dementia: Conceptual Dimension for Defining Health Care Management." Journal of the American Geriatrics Society, Vol. 32, No. 1, January 1984, 11-15. Eisdorfer, C. and D. Cohen. "Management of the Patient and Family Coping With Dementing Illness." The Journal of Family Practice, 1981, Vol. 12, No. 5, pp. 831-837. Horowitz, A. "Sons and Daughters as Caregivers to Older Parents: Differences in Role Performance and Consequences.” Paper presented at 34th Annual Scientific Meeting, Gerontological Society of America, Toronto, November 1981. Lazarus, L. et al. "A Pilot Study of an Alzheimer Patients’ Relatives Discussion Group." The Gerontologist, 1981, Vol. 21, No. 4. Linge, F. "What Does it Feel Like to be Brain-Damaged?" Canada's Mental Health, Sept. 1980, pp. 4-7. Rabins, P. "The Impact of Dementia on the Family,” Journal of the American Medical Association, July 16, 1982, Vol. 248, No. 3, pp. 333-335. Refler, B. and C. Eisdorfer. "Clinic for the Impaired Elderly and Their Families.” American Journal of Psychiatry, 137, 11, November 1980. Reisberg, B. "Office Management and Treatment of Primary Degenerative Dementia." Psychiatric Annals, 12, 6, 1982, pp. 631-637. Western Gerontological Society. "Alzheimer's Disease and Related Disorders." Generations, Fall 1982, Vol. 7, No. 1. BOOKS Liekerman, M. A., and L. D. Boman. Self-Help Groups for Coping with Crises. San Francisco: Jossey-Bass, 1979. Mace, N., and P. Rabins. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Baltimore, MD: The Johns Hopkins University Press, 1981. McDowell, F. H., (Ed.). Managing the Person With Intellectual Loss at Home. -{%- ''New York: The Burke Rehabilitation Center, 1980. Middleton, L. Alzheimer's Family Support Groups: A Manual for Group Facilitators. Tampa, FL: Suncoast Gerontology Center, University of South Florida Medical Center, 1984. Poe, W. and D. Holloway. Drugs and the Aged. New York: McGraw-Hill, 1980. Watt, J., and A. Calder. I Love You But You Drive Me Crazy. Vancouver, Canada: Florberg Publications, 1981. Zarit, S., N. Orr, and J. Zarit. Working with Families of Dementia Victims: A Treatment Manual. Los Angeles, CA: Andrus Older Adult Center, 1983. PAMPHLETS Boring, M. L., and L. Adler-McKinney. Facilitating Support Groups: An Instructional Guide. Pacific Medical Center, San Francisco, CA, 1979. McDowell, F. J. Choosing a Nursing Home for the Person with Intellectual Loss. The Burke Rehabilitation Center, 785 Mamaroneck Avenue, White Plains, New York 10605, 1980. Mellor, Rzetelny, Hudis. “Self-Help Groups for Caregivers of the Aged." Community Service Society of New York, 105 E. 22nd St., N.Y., NY 10010. National Self-Help Clearinghouse. The Self-Help Reporter. Graduate School and University Center/CUNY, 33 W. 42nd St., Rm. 1227, N.Y., NY 10036. State Bar of California. Do I Need Estate Planning? State Bar Pamphlets, Communications Division, 555 Franklin Street, San Francisco, CA 94102. U.S. Department of Health and Human Services. National Institutes of Health. Alzheimer's Disease: A Scientific Guide for Health Practitioners. NIH Publication No. 81-2251, Office of Scientific and Health Reports, National Institute of Neurological and Communicative Disorders and Stroke, NIH, Bethesda, MD, 20205, 1980. U.S. Department of Health and Human Services. National Institutes of Health. The Dementias: Hope Through Research. NIH Publication No. 81-2252, Office of Scientific and Health Reports, National Institute of Neurological and Communicative Disorders and Stroke, NIH, Bethesda, MD 20205, 1981. U.S. Department of Health and Human Services. National Institutes of Health. Questions and Answers: Alzheimer's Disease. NIH Publication No. 80-1646, June 1981. U.S. Department of Health, Education and Welfare. National Institute of Mental Health. Fact Sheet: Senile Dementia (Alzheimer's Disease). DHEW Publication No. (ADM) 80-929, 1980. ~14- ''ADDITIONAL RESOURCE PERSONS There are numerous experts who are providing clinical and social services, training providers and caregivers, and conducting basic research on Alzheimer's disease. The following list of experts has been compiled by the National Policy Center on Health. These individuals have indicated their availability as resource persons to the aging network. oO Clinical and Social Services: Miriam Aronson, Ed.D. Director, Teaching Nursing Home Project Asst. Professor of Neurology & Psychiatry Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx, N.Y. 10461 Phone: (212) 430-3575 Robert N. Butler, M.D. Brookdale Professor of Geriatrics & Adult Development Department of Geriatrics Mt. Sinai Hospital 100th Street & 5th Avenue New York, N.Y. 10029 Donna Cohen, Ph.D. Associate Professor of Psychiatry and Neuroscience Head, Division of Aging and Geriatric Psychiatry Montefiore Medical Center and Albert Binstein College of Medicine 111 E. 210th Street Bronx, NY 10467 Phone: (212) 920-5828 Gene Cohen, M.D., Ph.D. Director, Programs on Aging National Institute of Mental Health 5600 Fishers Lane Rockville, MD 20857 Carl BEisdorfer, Ph.D., M.D. President Montefiore Medical Center Professor or Psychiatry and Neuroscience Albert Einstein College of Medicine 111 BE. 210th Street Bronx, NY 10467 Phone: (212) 920-6701 a 5a ''Lissy F. Jarvik, M.D., Ph.D. V.A. Medical Center West Los Angeles Wilshire and Sawtelle Boulevards Los Angeles, CA 90073 Robert Katzman, M.D. Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx, N.Y. 10461 Muriel D. Lezak, Ph.D. Department of Neuropsychology V.A. Medical Center 3710 Southwest U.S. Veteran's Hospital Road P.O. Box 1034 Portland, OR 97207 Phone: (503) 222-9221 ext. 2516 Leopold Liss, M.D. Department of Psychology & Neuropathology Ohio State University Columbus, OH 43210 Phone: (614) 421-8254 Nancy Mace, M.A. Department of Psychiatry & Behavioral Sciences The Johns Hopkins University School of Medicine 600 N. Wolfe Street Baltimore, MD 21205 Phone: (301) 955-3902 Peter V. Rabins, M.D. Department of Psychiatry & Behavioral Sciences The Johns Hopkins University School of Medicine 600 N. Wolfe Street Baltimore, MD 21205 Burton V. Riefler, M.D., M.P.H. Director of Geriatric Services Department of Psychiatry and Behavioral Sciences, RP-10 University of Washington Seattle, WA- 98195 Steve Zarit, Ph.D. Andrus Older Adult Center Seaton Hall, 3rd Floor 262 South Lake Street, Room 333 Los Angeles, CA 90057 Phone: (818) 570-6596 (213) 743-4767 -16- ''Basic Research: George G. Glenner, M.D. Director, Alzheimer's Disease Brain Bank & Research Department of Pathology (M-012) University of California, San Diego La Jolla, CA 92093 Phone: (619) 452-6858 Stanley B. Prusiner, M.D. Professor, School of Medicine Department of Neurology, M-794 University of California, San Francisco San Francisco, CA 94110 Phone: (415) 666-4483 F. Marott Sinex, Ph.D. Massachusetts Society Against Dementia Department of Biochemistry Boston University Medical Center 80 E. Concord Boston, MA 02118 Phone: (617) 247-6087 (617) 247-6088 Wallace W. Tourtellotte, M.D. Chief, Neurology Service & Director, National Neurological Research Bank V.A. Wadsworth Medical Center Wilshire & Sawtelle Boulevards Los Angeles, CA 90073 Phone: (213) 824-4307 -17- ''''Rec'd in Public Health Libra: JAN 2.8 1985 ''U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Washington, D.C. 20201 Postage and Fees Paid U.S. DEPARTMENT OF H.H.S. ———— HHS-393 OFFICIAL BUSINESS Special Fourth-class Rate PENALTY FOR PRIVATE USE, $300 DHHS Publication No. (OHDS) 84-20814 ''U.C. BERKELEY LIBRARIES COe223b71L44 ''''