Statewide Resources
Other Services & Resources
Education & Training Resources Veterans Resources
COVID-19 Resources
Other Services & Resources
For your convenience, we have provided a number of links to valuable services, resources and helpful information.
ON-LINE SERVICES & RESOURCES
A 2019 Guide to Alzheimers and Dementia
This guide gives a great overview of the types of dementia as well as risk factors for developing dementia.
www.toprehabs.com/alzheimers-dementia/
Aging in the Know
This website offers up-to-date information on health and aging as well as useful links to other resources.
Phone: 800-563-4916
www.healthinaging.org
Aging With Dignity
Purchasing directions for "Five Wishes," a simple document to put your "wishes" in writing should you become seriously ill and unable to speak for yourself.
Phone: 850-681-2010
www.agingwithdignity.org
American Brain Tumor Association
Founded in 1973, the American Brain Tumor Association (ABTA) was the first and is the only national advocacy organization committed to funding brain tumor research and providing information and education on all tumor types and all age groups..
www.abta.org
Americans for Better Care of the Dying
A non-profit organization dedicated to social, professional, and policy reform to improve care for persons with serious illness and their families. Includes Agitator's Guide: 12 Steps to Get Your Community Talking about Dying.
www.abcd-caring.org
American Pain Foundation - PainAid
An on-line forum to help people with pain, called PainAid, contains pain specific message boards, chat rooms, guest speakers and an 'Ask the Expert' section.
www.painfoundation.org
Alcohol and Grief
People who suffer a loss will experience grief in many ways. While some can come to terms relatively quickly, others will look for external ways to cope. Alcohol has become an all-too-common means of dealing with that grief.
www.alcoholrehabguide.org
Assisted Living Benefits for Veterans
The Assisted Living Research Institute provides information on topics like, available care options, financial support, and free resources for veterans and those living with disabilities.
www.assistedliving.org
Boston Cancer Support
Providing patient resources throughout the state of Massachusetts and beyond.
www.bostoncancersupport.org
Caregiving Resources - Caring.com
Caring.com is for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Find valuable information and resources from a wide range of topics to help you better navigate caregiving.
www.caring.com/caregivers
Caregiving Resources - Caregiving.com
Information about health and wellness of the family caregiver, featuring the blogs of family caregivers, weekly words of comforts, daily chats, podcasts and free webinars.
www.caregiving.com
Caregiving Tips
Family members, especially ones serving in a primary caregiver role, will feel alone at times. But despite the challenges, it's rewarding. Here are some tips to make the tasks easier.
www.homehealthcareagencies.com/resources/caregiving-tips/
Caring for Patients With Dementia and Alzheimer’s
This guide provides information to start learning more about these conditions and being better equipped to provide high-quality care to current and future patients.
www.incrediblehealth.com/blog/dementia-alzheimers-caregiver-guide
Consumer Affairs: Elder Care Planning Guide
Information about senior living options, home improvements for seniors, independent living, and end of life care planning.
www.consumeraffairs.com/elder-care-planning/
Cost of Aging
This three-part series looks at the economic ramifications of the growth of the older population in the U.S. In the first installment, we look at the numbers behind this growth, the increase in national health costs, and the cost of health care for aging Americans. The second covesr the costs associated with Medicare and Social Security. Third will explore long-term care options and costs, as well as the financial costs for family caregivers.
www.publichealthonline.gwu.edu/cost-of-aging-healthcare
Fiscal Tiger:Alzheimer’s and Dementia: Financial and Legal Planning for Patients and Families
This guide covers topics ranging from healthcare costs to medical terms and long term planning resources to legal planning tips.
www.fiscaltiger.com/alzheimers/dementia
Home Safety Checklist for Wheelchair Users
For those with healthy conditions that may affect their ability to walk, wheelchairs can be a helpful option. Learn how to preare your home to be safe and comfortable for wheelchair users.
uk.rs-online.com/home-safety-checklist-wheelchair-users
Hospice & Palliative Care Federation of MA
For a consumer guide, Massachusetts hospice directory, and general information about end of life concerns.
Phone: 800-962-2973
www.hospicefed.org
Hospice DreamCatcher Foundation, Inc ("DreamCatchers")
DreamCatchers is an organization dedicated to fulfilling end-of-life Dreams for hospice and palliative care patients, through student-run chapters. We are intergenerational in nature, connecting young people in high school and college with typically-elderly patients nearing the end of their lives through the Dream fulfillment experience.
www.dreamcatchers1.org
Hospice Foundation of America
Resources, hospice locator guide, education opportunities, and general hospice information.
Phone: 305-538-9272
hospicefoundation.org
INELDA
The International End of Life Doula Association (INELDA) is a nonprofit organization dedicated to advancing the end of life (EOL) doula approach to serve people in a way that achieves deeper meaning and offers greater comfort.
inelda.org
Inheritance of Hope
Inheritance of Hope serves families with children 18 and under in which a parent has a terminal illness. Serving the entire family--diagnosed parent, caregiver and children through relationships and resources that understand their unique circumstances. With onsite, online, and ongoing offerings.
www.inheritanceofhope.org
InHomeCare.com
Elder Care resources for caregivers, agencies, and families.
https://www.inhomecare.com/resource-guide/
Making Every Moment Count
A video that profiles five children with advanced illness, ranging from newborns to teenagers, as well as the families and health professionals who support them in hospitals, hospice programs and at home. 40 minutes. National Film Board of Canada, 2003.
making_every_moment_count
Massachusetts Gerontology Association
A professional membership organization who's mission is to convene researchers, practitioners, and public policy makers in Massachusetts to create dialogue on critical issues related to aging and to facilitate the transfer of knowledge from academic research to day-to-day practice.
www.massgeron.org
Massachusetts Medical Society
A professional membership organization providing a web site on healthcare proxy, advance directives, discussion guides, and links to other resources.
www.massmed.org/healthcareproxy
Massachusetts Pain Initiative
The Massachsetts Pain Initiative (MassPI) is a multidisciplinary team of healthcare professionals and consumers that work to disseminate accurate pain management information, educate healthcare professionals, raise public and patient awareness of the pain problem, promote practice change, and advocate for the removal of regulatory and legislative barriers to pain management.
masspaininitiative.org
Means To a Better End: A Report on Dying in
America Today
The first-ever state-by-state analysis of end of life care funded by The Robert Wood Johnson Foundation and released on November 18, 2002. For more information about the report. The full 108 page report is available online at:
www.giaging.org/meansbetterend.pdf
Medical News Today: Alzheimer's/Dementia News
This resource offers a host of materials and articles presenting a wide variety of information related to Alzheimer's and Dementia.
www.medicalnewstoday.com
Mesothelioma Hub: What Does It Mean to be a Caregiver?
While this guide is geared toward caregivers for those with Mesothelioma, much of the information and resources are applicable to all types of caregivers supporting those at the end of life.
mesotheliomahub.com
My Audio Sound: Music Therapy Renefits
An informative article that discusses the impacts of music therapy on the elderly, specifically those with Alzheimer's and dementia.
www.myaudiosound.co.uk/music-therapy-benefits/
National Brain Tumor Society
The Brain Tumor Society iscommitted to improving the lives of all those affected by brain tumors.
www.braintumor.org
National Council on Aging: Fall Prevention
The National Council on Aging offers tips for preventing falls. Through their map of partners and programs, you can find a community-based fall prevention program in your area.
www.ncoa.org/healthy-aging/falls-prevention
National Council on Aging: Understanding Wandering Risks With Older Adults
Wandering is common among older adults who have cognitive decline. The National Council on Aging has created a guide to help caregivers understand wandering to help keep care recipients safe.
www.ncoa.org/adviser/medical-alert-systems/dementia-wandering/
Neptune Society
The Neptune Society's pre-planning guide includes useful information for having difficult yet essential conversations with family members.
www.neptunesociety.com
Nursing Home Abuse Center
The Nursing Home Abuse Center is a dedicated resource for nursing home abuse victims and their families.
www.nursinghomeabusecenter.com
Retail Me Not: Adaptive Equipment and Assistive Technology
This article serves as a guide on how to save on adaptive equipment as you care for disabled or senior loved ones.
www.retailmenot.com/blog
Retirement Living Information Center
Find the best retirement communities, senior housing, assisted living facilities, and more.
https://www.retirementliving.com/
Understanding, Recognizing, and Preventing Elder Abuse
This guide for caregivers offers information in regards to elder abuse and how to prevent it.
https://online.maryville.edu/blog/understanding-recognizing-and-preventing-elder-abuse/
US Living Will Registry
The Registry electronically stores advance directives and makes them available directly to hospitals across the country through an automated system. This storage service is free and confidential.
www.uslivingwillregistry.com
What Matters Now
Create a free personal website to keep loved ones updated, reflect, connect, share and get support when facing a life-changing illness.
www.whatmattersnow.org
SUGGESTED BOOKS AND READINGS
Being Mortal: Medicine and What Matters in the End. Atul Gawande: Metropolitan Books, 2014
In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending.
Matters of Life and Death: Finding the Words to Say Goodbye. Carol Wogrin: Broadway Books, Inc., 2001.
A practical guide discussing the importance of communicating with the terminally ill, offering suggestions on what to say and do to offer comfort, and to make the most of the final opportunities with loved ones.
Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with a Life-Challenging Condition. David S. Landay: St. Martin's, 1998.
An attorney's guide to the practical concerns created
by life threatening illness.
Dying Well: The Prospect for Growth at the End of Life. Ira Byock, MD: Riverhead Books, 1997.
Illustrated with stories by dying patients, a hopeful view of dying is offered as well as some conditions important for dying well.
Handbook for Mortals: Guidance for People Facing Serious Illness. Joanne Lynn, MD and Joan Harrold, MD: Oxford University Press, 1999.
A practical guide for choices, symptoms, and emotional and spiritual issues around death and dying.
Tuesdays With Morrie. Mitch Albom: Doubleday, 1997.
A former student connects with his college professor who is dying from ALS. Fourteen "classes with Morrie" are recounted.
The Good Death: the New American Search to Reshape the End of Life. Marilyn Webb: Bantam, 1997.
A journalist's well-researched effort to describe dying in the US, review current law, and offer recommendations for ensuring "good deaths."
www.uslivingwillregistry.com
What if...Workbook. Gwen Morgan, 2015.
A comprehensive, easy to use guide for end-of-life planning.
RECOMMENDED REFERENCES for PROFESSIONALS PROVIDING END OF LIFE and BEREAVEMENT CARE
A Physicians' Guide to Pain and Symptom Management in the Cancer Patient'. Abrahm, Janet L.: Johns Hopkins University Press, 2000.
Living with Dying: A Comprehensive Resource for End-of-Life Healthcare Practitioners. Berzhoff, J. and Silverman, P. Eds: Columbia University Press, 2004.
The Spirit Catches You and You Fall Down. Fadimin, A.: The Noonday Press, 1997.
Oxford Textbook of Palliative Nursing. Ferrell, B., and Coyle, N., Eds: Oxford Press, 2003.
Palliative Care Perspectives. Hallenbeck, James L.: Oxford University, 2003.
Gerontologic Palliative Care Nursing. Matzo, M., and Sherman, D. Eds.: C.V. Mosby, 2004.
Handbook of Bereavement Research: Consequences, Coping and Care. Stroebe, M., Hansson, R., Stroebe, W., & Schut, H.: American Psychological Association, 2001
