National Resources
Click a topic below for a list of resources collected and cultivated to benefit patients and loved ones:
- ADVANCE DECISION-MAKING TOOLS
- ALZHEIMER’S RESOURCES
- BEREAVEMENT GROUPS
- BLOGS
- HEALTH AND MEDICAL RESOURCES
- HOSPICE AND PALLIATIVE CARE RESOURCES
- PUBLICATIONS
ADVANCE DECISION-MAKING TOOLS
The Coalition for Compassionate Care of California
Every Californian needs to think about the kind of care they would want if they became seriously ill or incapacitated. It is also important that you talk with your loved ones and doctors about your choices, and then write down your wishes in an advance directive document. The Coalition for Compassionate Care of California provides an array of resources, both for free and that you can purchase, to help you think about your choices, make decisions and communicate with your loved ones. Click on the following link to learn more about resources you can use: Coalition for Compassionate Care of California
The Conversation Project
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. We believe that the place to begin is at the kitchen table – not in the intensive care unit – with the people we love, before it’s too late. The Conversation Project began in 2010 when Ellen Goodman and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones. Over several months, a vision emerged for a grassroots, public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are know when the time comes. In order to make this vision a reality, The Conversation Project began its collaboration with the Institute for Healthcare Improvement (IHI) in September of 2011. IHI is a not-for-profit organization that helps lead improvement of health and health care throughout the world.
Aging With Dignity – The Five Wishes
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The life and work of Mother Teresa of Calcutta served as the inspirational foundation of Aging with Dignity. Aging with Dignity founder Jim Towey served as Mother Teresa’s friend and legal counsel for 12 years and was a full-time volunteer in her home for people with AIDS. Her tender care and concern for all a person’s needs – medical, emotional and spiritual – served as the inspiration for Five Wishes, America’s most popular living will.
Aging with Dignity introduced Five Wishes in Florida in 1997, and a year later, to the nation. Dubbed “the living will with a heart and soul,” Five Wishes today meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete. Five Wishes Online was introduced in 2011, allowing people to complete Five Wishes on screen and print out a personalized document immediately. The document is available in 26 languages and in Braille
National Healthcare Decisions Day
National Healthcare Decisions Day exists to inspire, educate & empower the public & providers about the importance of advance care planning. National Healthcare Decisions Day is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be. For more information, visit their website.
ALZHEIMER’S RESOURCES
Alzheimers.net: Up-to-date resources and advice from professionals with expertise about Alzheimer’s disease and related dementias.
Alzheimer’s Association: Advances research to end Alzheimer’s and dementia while enhancing care for those living with the disease
Alzheimer’s Foundation of America: Provides optimal care to individuals confronting dementia, and to their caregivers through member organizations dedicated to improving quality of life
Alzheimer Research Forum: Weekly newsletter about current research articles and studies.
The Alzheimer Spouse (blog): Coordinated by Joan Gershman, a caregiver whose husband has AD (and diabetes and Parkinson’s).
The National Institute on Aging’s Alzheimer’s Disease Education and Referral Center (ADEAR): Provides complete information on all AD clinical trials and all Alzheimer’s disease research centers.
New York University’s Fisher Center for Alzheimer’s Research Foundation: One of the largest scientific facilities in the world dedicated to Alzheimer’s disease that issues a monthly newsletter.
This Caring Home: Help caregivers prepare a safe home environment for someone with Alzheimer’s.
The University of California, San Diego Alzheimer’s Disease Cooperative Study.: A major initiative for Alzheimer’s Disease clinical studies in the Federal government, addressing treatments for both cognitive and behavioral symptoms.
BEREAVEMENT GROUPS
Bereaved Parents of the USA: Support for those dealing with the death of a child
Empty Cradle: Support for families who have experienced the loss of a baby
GriefNet.org: Comprehensive grief resource site
Guild for Infant Survival: Support for suicide survivors
KIDSAID: For children who are grieving
Mitchell Thorp Foundation: Supporting families whose children suffer from life-threatening illnesses, diseases and disorders
Survivors of Suicide Loss (National site but it has meetings in San Diego. Local too??): Support for suicide survivors
Survivors of Violent Loss: Online support services for anyone who has suffered from, and/or works with violent death loss
The Widdahood: Peer support website dedicated to anyone who has lost a significant other, regardless of age, gender, religious beliefs, or gender preference
WidowNet: Support for widows and widowers
The Compassionate Friends: Support foe those dealing with the death of a child
BLOGS
Judith Redwing Keyssar
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Helen McNeal |
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Barbara Coombs Lee
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The Reverend Sue Wintz
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HEALTH AND MEDICAL RESOURCES
CDC: CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S.
Consumer Health Choices: Supports consumers in identifying and choosing high quality products and services, and optimizing their health and wellness
John Hopkins: One of the leading health care systems in the United States
Mayo Clinic: A nonprofit worldwide leader in medical care, research and education
Medical News Today: Market leader for medical news, providing concise and accurate information
Medicare Answers: Get your Medicare questions answered
Medicare.gov: The official U.S. Government Site for Medicare
My Healthy Today: Up-to-date information from national health resources that are personalized to your needs and interests.
ScienceDaily.com: A comprehensive site for all science topics.
WebMD: Provides valuable health information, tools, and support.
World Health Organization (WHO): WHO is the directing and coordinating authority for health within the United Nations system
ZocDoc Search: Geriatric Care Physicians: Find a Doctor and book appointments online instantly. Read verified doctor reviews and ratings by real patients.
HOSPICE AND PALLIATIVE CARE RESOURCES
Canadian Virtual Hospice: Information and support on palliative and end-of-life care, loss and grief
GetPalliativeCare: What is palliative care?
Palliative Doctors: Patient site of the American Academy of Hospice and Palliative Medicine (AAHPM)
Uneven Terrain: Mapping Palliative Care Need and Supply in California – CHCF.org: Palliative care resources from California HealthCare Foundation.
PUBLICATIONS
Alzheimer’s Association: Brain Health: There are lifestyle habits that you can adopt to maintain or potentially improve your health as you age
AMRI: The Guide to Overcoming Holiday Depression for the Elderly and Their Caretakers: Resource guide for the elderly, their caregivers and their family members with advice on how to beat holiday depression
Backyard Ocean: Benefits of Swimming for Seniors: A dip in the pool also has many health benefits – especially for seniors
Senior Health Risk Calculators for Healthy Aging: These calculators are a starting point for becoming an advocate for healthy aging
Centers for Disease Control and Prevention: Depression is Not a Normal Part of Growing Older: Depression is a true and treatable medical condition, not a normal part of aging.
Caregiving Support and Help: These tips can help you get the support you need while caring for someone you love.
Depression Treatment: Therapy, Medication and Lifestyle Changes: The best way to treat depression is to become as informed as possible about the treatment options, and then tailor them to meet your needs.
Exercise and Fitness as You Age: Regular exercise can help boost energy, maintain your independence, and manage symptoms of illness or pain
Home Advisor: Disability Accommodation Cost Guides: There are many ways to change you home or business to accommodate for disabilities.
MelinePlus: Exercise for Seniors: Exercise and physical activity are good for just about everyone, including older adults.
Mortgage Calculator: Seniors’ Guide to Aging at Home Safely and with Dignity: To age in place safely and with dignity, seniors must educate themselves
New Beginnings: Guide to Addiction Prevention for Seniors: This guide contains more than 50 valuable resources devoted to substance abuse and addiction awareness and treatment.
NIH Senior Health: Planning Your Doctor Visit: Creating a basic plan before you go to the doctor can help you make the most of your visit.
Pancreatic Cancer Network: Meals to Heal: Healthy eating and good nutrition are an important part of the overall management of cancer
A Place for Mom: Elderly Depression and Care for the Elderly: Sudden changes in mood and interest can signal more than just old age
WebMD Alzheimer’s Disease Newsletter: News related to Alzheimer’s Disease
WHO Model Lists of Essential Medicines: The WHO Model Lists of Essential Medicines has been updated every two years since 1977.