Links / Resources Updated 2012

Publications

• The Caregiver, our Program’s newsletter

• Download our list of publications, with order form. (pdf format)

• Recommended Family Reading List (pdf format)

• Anger Tips
  A brochure of tips for when anger gets too much.

• Hit Pause: Helping Dementia Families Deal with Anger
  For professionals or aging staff working with Alzheimer's or dementia families:

• Holiday Visiting Tips: A Message for the Faith Community and Friends of Alzheimer's Families
  A collection of tips to make your visits with Alzheimer's families pleasant for all:

• The Household Employer's Tax Guide, IRS Publication 926(.pdf format)

Suggested Websites and Resources

• The Caregiver is a newsletter of the Duke Family Support Program. The Caregiver links families and professionals caring for persons with memory disorders and is the oldest continuously publishing family caregiver newsletter in the US. NC residents, call 800-646-2028 to request a free subscription. Out-of-state readers, send $10 (check payable to Duke Family Support Program) to Duke Family Support Program, DUMC 3600, Durham, NC 27710. Or read online at here.

• Perspectives is a quarterly newsletter written for people with dementia that addresses the concerns, reflections, and coping skills of individuals with Alzheimer's or a related memory disorder. Send requests for free email subscriptions to lsnyder@ucsd.edu. For surface mail, send $20 (check payable to UCSD ADRC) to Lisa Snyder, LCSW, UCSD Shiley-Marcos Alzheimer’s Research Center, 9500 Gilman Drive – 0948, La Jolla, CA 92093.

• 800-272-3900 The Alzheimer's Association 24/7 Helpline provides reliable information and support to people with memory loss, caregivers, health care professionals and the public. Consultations are provided by master's level clinicians; and translation services featuring over 140 languages and dialects are available.

• www.ahrq.gov/questions The resources on this website will help you to prepare for your medical appointments, ask questions, and talk with your doctor and health care team.

• http://www.healthinaging.org/resources/resource:all-topics This American Geriatrics Society site gives guidance and practical instructions for dealing with caregiving problems.

• www.caregiver.va.gov A new VA website designed specifically to support care partners of veterans that offers programs both in and out of the home.

• www.dhhs.state.nc.us/aging From the NC Division of Aging and Adult Services, an overview of and links to state-run services and programs that serve older adults (click on the links to “Alzheimer’s” and “Family Caregiver Support”).

• www.geri.duke.edu Duke University Center for the Study of Aging and Human Development, established in 1955, serves as a national resource for information about aging and as a training ground for future generations of researchers, teachers, practitioners and planners.

• www.law.wfu.edu/eclinic The Elder Law Clinic at the Wake Forest University School of Law in Winston Salem provides free, in-person legal assistance to moderate-income seniors.

• http://www.legalaidnc.org Legal Aid of NC Senior Law Project (SLP) serves clients 60 years of age or older. Special priority is given to those seniors with the greatest economic or social need. The SLP team members are located in various Legal Aid NC offices.

• www.lgbtagingcenter.org The National Resource Center on LGBT Aging provides training, technical assistance and educational resources to aging providers, LGBT organizations and LGBT older adults

• http://nihseniorhealth.gov Health and wellness information for older adults from the National Institutes of Health that is easily accessible and easy to understand.

• www.nlm.nih.gov/medlineplus MedlinePlus is an NIH health website for patients and their families and friends. Look up info on a drug or supplement, view medical videos, get links to medical topics, or find out about clinical trials on a disease or condition. For Alzheimer’s caregiving resources, go to www.nlm.nih.gov/medlineplus/alzheimerscaregivers.html

• www.thehartford.com/talkwitholderdrivers Addresses driving issues for older adults such as warning signs of poor driving, dementia and driving, and coping with driving cessation.

• www.agelessdesign.com Ageless Design, for caregivers and professionals, includes news about developments in Alzheimer’s and the Alzheimer’s Store (see www.alzstore.com below).

• www.alz.org The Alzheimer’s Association provides education and support for all those affected by Alzheimer’s and related dementias. Go to the website to find resources and your local chapter.

• www.alz.org/safetycenter/we_can_help_safety_medicalert_safereturn.asp MedicAlert® + Alzheimer's Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency.

• www.alzconnected.org ALZConnected connects people with an online community for Alzheimer’s support. Post questions, share opinions and join discussion groups.

• www.alz.org/carefinder The Alzheimer’s Association CareFinder is an online guide for people living with Alzheimer's and their caregivers to help with selecting a care provider.

• www.alz.org/norcal/in_my_community_14292.asp Click on the link to the booklet help and hope for persons diagnosed with alzheimer’s disease and related disorders. It provides practical summaries and brief messages for persons living with dementia.

• www.alznc.org Alzheimer’s NC provides education, support and services to patients, families and health care professionals in the eastern and piedmont areas of NC.

• www.alzheimersreadingroom.com Bob DeMarco has one of the best sources of shared experiential wisdom from families who care for and about persons with Alzheimer’s disease.

• www.alzstore.com The Alzheimer's Store showcases unique products and information for those caring for someone with Alzheimer's disease and related disorders.

• http://adrc.mc.duke.edu Duke’s Bryan ADRC is a clinical and basic science center currently focused on diagnosis and prevention of Alzheimer's disease.

• www.caring.com The “Alzheimer’s Solution Center” (under “Health A-Z” > “Alzheimer’s disease”), provides links to learning more about different aspects of Alzheimer’s, including guides to care separated out by disease stage.

• www.nia.nih.gov/alzheimers or 800-438-4380 The ADEAR Center is a resource for information on Alzheimer’s, on locating Alzheimer’s disease research centers and clinical trials, and for credible, free and current National Institute on Aging publications on Alzheimer’s, caregiving, and other aging-related challenges

• www.timeslips.org TimeSlips is an improvisational storytelling method for people with dementia and their caregivers to read, write and share stories with family and friends.

• www.aarp.org/families/caregiving The AARP caregiving website includes articles, tools, work sheets and tips on how to plan, prepare and succeed as a caregiver.

• www.aoa.gov Find news, resources, programs, and statistics related to aging. The links to Alzheimer’s Resources, National Family Caregiver Support Program, and legal assistance (all found under “AoA Programs”), are especially helpful for dementia families.

• www.caring.com/articles/how-to-find-a-private-caregiver? An excellent overview article, How to Find & Hire a Private Caregiver, guides readers through the process of hiring a private caregiver for help at home or in a facility.

• www.caregiver.org Family Caregiver Alliance, a pioneer caregiver organization, offers information and advice for caregivers, including fact sheets (e.g., “Caregiver’s Guide to Understanding Dementia Behaviors”).

• www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2488 This new fact sheet from the Family Caregiving alliance, “Caregiving with Your Siblings” provides tips and useful references for this complex dynamic adult children face when caring for their parents.

• www.dementiacarecentral.com/videos These video clips for families and care staff are from the professional training DVD "Accepting the Challenge," produced by the Alzheimer’s North Carolina, Inc. with Teepa Snow and Melanie Bunn.

• www.ec-online.net ElderCare Online provides info, access to resources, and an active online community forum for people caring for aging relatives.

• www.eldercare.gov Eldercare Locator, a service of the U.S. Administration on Aging, is a nationwide service that connects older Americans and their caregivers with information on senior services.

• http://www.forltc.org/cms Friends of Residents in Long Term Care is a resource for NC families looking for long term care or seeking help with an unresolved issue. Friends of Residents also works to influence public policy on behalf of residents and personal care aides.

• www.lotsahelpinghands.com A free service to assist in coordinating care among family and friends.

• http://newoldage.blogs.nytimes.com A regular feature of the New York Times, this is an outstanding blog and news-source on elder care.

• www.videocaregiving.org A unique resource for in-home caregivers that tells the stories and shows coping strategies through video clips of persons with Alzheimer’s and their families.

• www.benefitscheckup.org BenefitsCheckUp is free service of the National Council on Aging. BenefitsCheckUp asks a series of questions to help identify eligibility for programs that help with everyday expenses including medications, health care, food, utilities, and legal expenses.

• www.medicare.gov/quality-care-finder Designed by the Centers for Medicare & Medicaid Services, the site offers a broad range of health, Medicare and resource information as well as a tool to make “apples-to-apples” comparisons of long-term-care facilities, physicians and services.

• www.medicarerights.org The Medicare Rights Center works to ensure access to affordable health care for older adults and people with disabilities and provides consumers with information on navigating Medicare benefits and Medicare appeals.

• http://www.ncdoi.com/SHIIP/Default.aspx The NC website for the Senior Health Insurance Information Program (SHIIP). SHIIP counsels Medicare beneficiaries and caregivers about Medicare, Medicare supplements, Medicare Advantage, Medicare Part D, and long-term care insurance. Counselors offer free info on a toll-free line. There is a SHIIP program in every state.

• www.theaftd.org The Association for Frontotemporal Degeneration explains FTD diagnoses, navigating health care, caregiving challenges, planning for the future, and finding support.

• www.gerontology.vt.edu/docs/Gerontology_MCI_final.pdf Mild Cognitive Impairment (MCI), What Do We Do Now? Is a free pamphlet from Virginia Tech based on interviews with 99 people with MCI and their families. It includes practical information and useful coping strategies.

• www.lewybodydementia.org This Lewy Body Dementia Association website provides info, support and connection to an online community for LBD families and professionals.

• www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_health_care_advance_planning.html A step-by-step toolkit for advance care planning by the American Bar Association’s Commission on Law and Aging.

• www.caringinfo.org or 800-662-8859. This National Hospice and Palliative Care Org. site offers info on living with an illness, caregiving, grieving, finding a hospice, and free advance directives for every state.

• www.getpalliativecare.org Site explains palliative care (vs. hospice) and offers an interactive questionnaire to assist people in determining whether palliative care is appropriate.