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* Hospice and Home Care
How We Die: Reflections on Life's Final Chapter [icon]
By Sherwin B. Nuland. An award-winning account by a noted surgeon describing in frank yet compassionate detail just what the death process is really like. Chapters cover different types of death and the signs of dying, making clear the processes and choices that go along with each one. It addresses both medical and emotional realities of common conditions such as cancer, heart disease, AIDS, Alzheimer's, severe trauma, and just plain wearing out. Available in hard and soft covers, as well as in an audio casette version.


* Palliative Medicine
Oxford Textbook Of Palliative Medicine (Second Edition) [icon]
Edited by Derek Doyle, Geoffrey Hanke, and Neil MacDonald. The second edition of "the Bible of palliative care" is a comprehensive medical textbook and reference volume covering most practical aspects of hospice comfort care for the terminally ill. Covers quality of life assessment, pain and symptom management, pediatric issues, nutrition, psychiatric issues, special roles of members of the caregiving team such as nurses, occupational therapists, and social workers, plus many other topics. Now available in paperback. Published April, 1999.

Hospice and Palliative Care [icon]
By Virginia F. Sendor and Patrice M. O'Connor. In an accessible question and answer format, the authors explain what hospice and palliative care is, describe the services offered to both patient and family (including children), discuss admission requirements, Medicare coverage, reimbursement issues, the resources available to patient and family, and how to locate these resources in the United States. Written with the patient and the patient's family in mind, this book is also a valuable resource for social workers, medical and nursing students, and health care professionals. Includes special sections on AIDS, Alzheimer's disease, advance directives, bereavement, the role of the physician, the role of volunteers, the concept of informed consent, and euthanasia. Published July 1997.

Toolkit of Instruments to Measure End of Life Care [icon]
Joan Teno, of the Center for Gerontology and Health Care Research at Brown University, and faculty and staff at the Center to Improve Care of the Dying, have assembled a comprehensive annotated bibliography of instruments to measure factors important to quality of care at the end of life. Instruments cover general quality of life, functional status, pain and physical symptoms, depression and other emotional states, survival time, appropriateness of aggressive care, cognitive status, advance care planning, spiritual well-being, system performance for end-of-life care, caregiver burden, grief, family satisfaction with care, and other factors. You can search the Growth House database from this site.

Hospice Care for Patients With Advanced Progressive Dementia [icon]
By Ladislav Volicer (Editor), Ann Hurley (Editor). An outstanding technical reference with contributions from twenty-seven specialists who cover a range of issues in care of patients with severe and terminal dementia. There is no cure for the progressive dementias and the afflicted person can live for from two to twenty years (average is eight).

Coma and Impaired Consciousness: A Clinical Perspective [icon]
By G. Bryan Young (Editor), Allan H. Ropper (Editor), Charles Bolton (Editor). This comprehensive text examines every aspect of coma, including related anatomy, physiology, neurochemistry, pharmacology, new diagnostic and therapeutic approaches, prognostic factors, and decision algorithms for clinical management. Throughout, the emphasis is on practical approaches to monitoring and management of coma and the special needs of comatose patients. Published April, 1998.


* General Bereavement
Living With Grief: When Illness Is Prolonged [icon]
Chronic illness and prolonged dying create special tensions that can be a terrible burden both for the person who is ill and those affected by the illness. Changes in role relationships have psychological and practical ripple effects throughout the extended family. Here's a compilation of resource materials provided by the Hospice Foundation of America, edited by Kenneth Doka. Articles cover disease-specific situations such as Alzheimer's, AIDS, and cognitive dementia. Published April 1997.


* Health Care Directories
Coping With Mild Traumatic Brain Injury [icon]
By Diane Roberts Stoler, Ed.D. A practical guide for professionals, families and individuals coping with acquired and traumatic brain injury. Neurological problems can complicate caregiving. The book covers many different aspects of brain trauma, including concussion, stroke and brain tumor. Published January, 1998.

The Brain Tumor Society [icon]
Supports research, education, and support for those affected by brain tumors. Web site includes FAQs, information on grants and funding opportunities, basic facts for patients and families, clinical trials, and links to related resources.


* Eldercare
ALZwell Caregivers Site [icon]
An excellent resource for caregivers of the frail elderly, the memory impaired, and those with Alzheimer's, memory impairment, or dementia. Has good links to many related eldercare and dementia resources. This site has a touching personal feel that captures the heartache of supporting a loved one who is gradually slipping away. You can search the Growth House database from this site.

Alzheimer's Disease Society [icon]
Fact sheets, news and other materials from the UK care and research charity for people with Alzheimer's Disease and dementia.

Dancing on Quicksand [icon]
By Marilyn Mitchell. Here's a realistic memoir of what it's like to care for someone with progressive dementia, told from the point of view of a caretaker with no prior experience of this sort. The book tells how Mitchell cared for an elderly man increasingly afflicted by dementia. Gradual onset and worsening of dementia is a perplexing and common reality, and it is pictured well here. The Growth House book review includes audio excerpts read by the author.

Keeping Busy: A Handbook Of Activities For Persons With Dementia [icon]
By James R. Dowling. A book of occupational therapy ideas for use with persons with Alzheimer's Disease, AIDS dementia, and other forms of dementia. Most of the ideas are intended for use in group settings. Professionals working in such institutions, such as long-term care facilities and nursing homes, are the book's primary audience. Caregivers who have a family member at home may not find this book helpful since it assumes that care is being delivered in an institutional environment.

Reminiscence Reviewed [icon]
Joanna Bornat (Editor). The use of reminiscence and recall has become common in work with older people. This collection of professional essays examines the use of reminiscence therapy and life review in a variety of settings. Includes chapters on the use of reminiscience with persons suffering cognitive deficits such as dementia and Alzheimer's Disease. Published January, 1994.

California Registry's Retirement Housing, Assisted Living and Nursing Home Guide [icon]
Database and free referral service for all licensed retirement residences, assisted living , Alzheimer's care and residential care homes in the state of California.


* San Francisco Bay Area Resources
Family Caregiver Alliance [icon]
Provides support to caregivers of brain-impaired adults, including Alzheimer's disease, stroke, non-specific dementia, AIDS dementia, Parkinson's disease, traumatic brain injury and other disorders. Provides services to Californians statewide.


* Miscellaneous Resources
Traumatic Brain Injury Support Group List and Gopher [icon]
The ABI/TBI Information Project offers the TBI-SPRT E-Mail List and the Sasquatch ABI/TBI Gopher to provide information and caregiver support related to brain injuries. Some content is relevant to management of organic dementias.

Because We Care [icon]
The U.S. Administration on Aging offers this site to assist family caregivers in the United States. Content deals with the day-to-day challenges of caregiving for an older person or adult child with disabilities. Includes tips on housing options, home care, long-term care, Alzheimer's Disease, and related topics.

California Advocates for Nursing Home Reform [icon]
Advocacy organization looking out for the rights of long-term care residents in California. Web site has good consumer information about how to choose a nursing home, how to evaluate Residential Care for the Elderly (RCFE) agreements, tips on how to evaluate facility quality, special issues for dementia, and other helpful information.

Music Therapy In Dementia Care [icon]
By David Aldridge (Editor). This comprehensive guide reviews the use of music therapy with the elderly and people with dementia. The compilation draws on the diverse research and considerable personal experience of music therapists from around the world. The authors cite improvements in memory, health, and identity in those suffering from dementia, particularly Alzheimer's Disease. An essential resource for music therapists working with this population, and an interesting read for anyone working with dementia sufferers in a therapeutic context. Published 2000.

What If It's Not Alzheimer's? A Caregiver's Guide To Dementia [icon]
Edited by Lisa Radin and Gary Radin; Foreword by Murray Grossman, M.D., Ed.D. Although today the public all too often associates dementia symptoms with Alzheimer's disease, the medical profession can now distinguish various types of "other" dementias that also undermine cognitive abilities, often with onset at a younger age. This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer's dementias.

A Place For Mom [icon]
Free referral service helping families find nursing homes, assisted living, Alzheimer's, retirement communities, and home care. Web site includes an online form you can use to help assess what type of assisting support needs you may have.


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