Hospice Foundation of America E-Newsletter
January 2004
Hospice Foundation of America E-Newsletter
Volume 4, Issue 1
January 2004
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Message from David Abrams, President
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Happy New Year from all of us at HFA. This month our staff and teleconference panelists spent an entire weekend together exploring the content and structure of our National Bereavement Teleconference on Alzheimer's Disease. While many of you are familiar with the April broadcast (now in its 11th year) and the companion book, you most likely are not aware that we bring the panel of experts together about four months prior to the broadcast for an intense planning meeting. Some of them may know each other professionally; some may have never met before. From Friday evening through Sunday morning, we share ideas and insights, make each other aware of new research and resources, and even agree to disagree when necessary as we begin to shape the content for the teleconference. We never script the actual teleconference discussion; we use the information culled from this meeting as a structural guide. The intellectual depth presented by the panelists left us energized about the upcoming teleconference and the important issues that we will explore. This year's teleconference will significantly advance the dialogue on Alzheimer's Disease and Related Disorders. We hope you plan to join us in April!
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Focus on: Planning for "Living With Grief: Alzheimer's Disease"
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Kenneth Doka, Senior Consultant to HFA and Chair of the Teleconference Planning Committee, has developed a general agenda and learning objectives for the teleconference. Using these documents as a guide, the committee began to identify some critical points to explore and discuss, and clarify their own areas of interest and expertise. The issues outlined below are a brief encapsulation of an entire weekend of intense discussion. The topics are not inclusive, but will help to focus the subsequent planning and actual discussion on the teleconference itself. Throughout the program, interventive strategies and practical suggestions will support the discussion. As always, video clips from families and professionals will enhance the discussions.
Segment 1 -- Medical Overview: Alzheimer's Disease and Other Dementias. The committee emphasized the critical importance of diagnosis, especially early diagnosis. Many medical myths exist about Alzheimer's disease, which must be identified and dispelled. Current research and prevention efforts should be examined, as well as the issue of pain management in persons with Alzheimer's disease.
Segment 2 -- Programs and Services for Patients and Caregivers. The importance of diagnosis again underscored many of the discussions here, as well as the idea that the goals of each patient's care should guide the decisions made about that care. Patients and their families must be made aware of the resources in their communities. Particular issues include gaining access (for instance, in rural areas where resources may not be as plentiful), as well as increasing usage of these resources (especially by minority populations). Ongoing assessment for family caregivers is necessary, and professionals must provide tools to guide these caregivers through the difficult decision-making processes that often accompany this disease, particularly at the end of life.
Segment 3 -- Grief. Alzheimer's disease is an illness in which many losses-physical, spiritual, social, emotional-are associated with the experience. The grief experience of the caregiver after the patient's death, which can often be one that can be framed in a positive way, is another important component. A critical and often neglected issue is an awareness of the grief reactions of the person with Alzheimer's disease, especially in the situation where the spouse or other loved one dies. Loss also impacts the professional caregivers, many of whom are often neglected in their grief.
Segment 4A -- Alzheimer's Disease and the Challenge to Hospice. Detecting for people with dementia should be the standard of practice in hospice and end-of-life care. While hospices can offer great support and care to patients with Alzheimer's disease, the issue of patient autonomy, a bedrock of the hospice philosophy, may conflict with the realities of Alzheimer's disease. (See below for a link to an excellent article by Bruce Jennings about how the hospice model for Alzheimer's disease must be different than the traditional hospice model for cancer.) A need exists to dispel some common myths about pain and palliation in Alzheimer's, and to clarify the accessibility of hospice care in a nursing home setting. The importance of communicating about end-of-life wishes and advance directives must be stressed. Families and loved ones should also be made aware of ways to communicate with an Alzheimer's patient who is nearing the end of life. Underscoring the discussion is the recognition that the family caregivers are the experts on the patient, and that professionals must utilize the wealth of resources that the family caregivers can offer.
Segment 4B -- Public Policy Issues. The program will examine relevant public policy issues related to Alzheimer's disease. The National Institutes of Health (NIH) funding stream for basic scientific research plays a significant role. Other areas of discussion include the Medicare Hospice Benefit, both in clarifying eligibility for Alzheimer's patients and in examining the underutilization of the Benefit by this population. The need for respite care to help the growing army of family caregivers is also a critical one. Discussions of these issues should include examples from new and innovative model programs. Learn more about our distinguished panel.
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Alzheimer's Disease in the News
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PBS will air a special documentary, 'The Forgetting: A Portrait of Alzheimer's,' on Wednesday, January 21 at 9:00 pm ET. 'The Forgetting' is a 90-minute documentary that explores Alzheimer's disease, the human toll it takes on patients and caregivers, and the latest research. 'Alzheimer's: The Help You Need,' a half-hour follow-up special hosted by actor David Hyde Pierce, will bring together a panel of experts to provide authoritative answers to commonly-asked questions and direct viewers to organizations and resources that can offer help and support. Lisa Gwyther, one of the panelists for HFA's April teleconference, will participate in this half-hour program. For more information, visit http://www.pbs.org/theforgetting
William E. Haley, PhD, one of the panelists for the upcoming teleconference, recently co-authored an article in the New England Journal of Medicine entitled "End-of-Life Care and the Effects of Bereavement on Family Caregivers of Persons with Dementia" (NEJM, 349;20, November 12, 2003). In it, the authors describe the experience of family caregivers who provided end-of-life care to patients with dementia. During the year before the patient's death, many caregivers reported feeling that they were "on duty" 24 hours a day and had symptoms of depression. These symptoms often resolved after the death of the patient, and 72 percent of caregivers reported that the death was a relief for them. These findings highlight the demanding and stressful nature of end-of-life care provided by family members to patients with dementia.
Read an abstract from the article or to order the full text.
The Alzheimer's Association, one of the co-sponsors of our upcoming teleconference, has an excellent resource for young people to learn more about the medical and emotional issues of Alzheimer's disease. (This link is no longer available.)
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What's New@HFA
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Register and Win! Be sure to register your organization as a downlink site for HFA's 11th Annual National Bereavement Teleconference, "Living With Grief: Alzheimer's Disease," to be broadcast April 28. Sites registered by February 20, 2004 will be automatically entered in a drawing to win one free box of companion books for this year's broadcast, a $240 value. The winner will be posted to the HFA Web site on March 1, 2004. You can register online by clicking the link below:
Each year, HFA publishes a book in conjunction with the annual National Bereavement Teleconference. The book is an excellent stand-alone resource, with contributions on a wide range of topics by experts in the field as well as from family caregivers. Call us at 800-854-3402 for ordering information.
Read sample chapters from "Living With Grief: Alzheimer's Disease"
Grief and Dementia by Kenneth J. Doka. (PDF)
Alzheimer's Disease and the Quality of Life by Bruce Jennings. (PDF)
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Site Coordinator's Corner
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The Site Coordinator's Manual has been mailed out to registered sites; don't forget that the full set of documents are also available online at the password-protected section of our website, http://www.hospicefoundation.org
For those who are considering hosting a site but are having trouble locating a satellite to pull down the broadcast, Adventist Communication Network (ACN) will be carrying the teleconference live over their network of 1,300 satellite locations across the country. Most ACN facilities are willing to open their doors to local community groups who wish to host the teleconference. For more information about ACN, contact them directly at 800-226-1119. HFA staff can also answer questions and help connect you with a facility; just call us at 800-854-3402. If you have questions or concerns about your registration, please send an email to telecon@hospicefoundation.org .
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F.Y.I.
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The Rosalynn Carter Institute (RCI) is inaugurating a new award, the "Rosalynn Carter Institute Caring & Competent Caregiver Award," which will be presented annually to professional caregivers who demonstrate extensive knowledge, skill, and dedication in their chosen fields and also show genuine interest, empathy, and a sense of caring in their interactions with persons they serve. The award will recognize caregivers in four categories: Licensed Practical Nurse (LPN), Certified Nursing Assistant (CNA), Nurse's Aide/Patient Care Technician, and Home Health Aide.
Nominations for the RCI Caring & Competent Caregiver Award may be made by completing an official nomination form and submitting it to the Rosalynn Carter Institute no later than Feb. 13, 2004. For more information read the full press release at http://rci.gsw.edu/PR_03-13.htm or call (229) 928-1234.
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This newsletter is published by Hospice Foundation
of America
1621 Connecticut Ave., NW
Suite 300
Washington, DC 20009
Jack D. Gordon, Chairman
David Abrams, President
http://www.hospicefoundation.org
© Hospice Foundation of America 2004
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