Resources/Links

Part 1: Information on Dementia and Related Diseases

  • Alzheimer’s Association: www.alz.org : information on Alzheimer’s disease, resources, research advances, publications, and events.
  • Lewy Body Dementia Association: www.lbda.org : dedicated to raising awareness of Lewy body dementia includes resources and online communities.
  • LewyNet: www.nottingham.ac.uk/pathology/lewy/lewyhome.html : information on dementia with Lewy bodies.
  • Mayo Clinic: www.mayoclinic.com/ : highly reliable resource that includes current medical research news, information about diseases and conditions, a symptom index, a first aid guide and prescription drug information.
  • MedlinePlus: www.nlm.nih.gov/medlineplus/ : information and resources on diseases and health topics, including Alzheimer’s, and Parkinson’s, and Lewy Body Dementia.
  • Michael J. Fox Foundation for Parkinson’s Research: www.michaeljfox.org/ : up-to-date information on Parkinson’s research.
  • National Parkinson Foundation: www.parkinson.org/ : Information and resources re Parkinson’s disease.
  • Physician’s Desk Reference: www.pdr.net.
  • Medical Alert Advice: www.medicalalertadvice.com/articles/brain-games-to-fight-dementia/ : Keeping your mind engaged (thanks to Sarah and Melissa).

Part 2: Nursing Homes & CNA Training

Part 3: Home Health Agencies

Part 4: Elder Care

  • AARP (American Association of Retired Persons): www.aarp.org : information on Social Security and Medicare, including comparison of Medigap insurance policies.
  • Centers for Medicare & Medicaid Services: www.cms.gov/medicaideligibility/ : overview of Medicaid eligibility and list of further resources and tools.
  • Medicare.gov: www.medicare.gov : information re health and drug plans, facilities and doctors, including explanation of different parts of Medicare benefit.
  • National Academy of Elder Law Attorneys: www.naela.org : defines scope of elder law and gives latest news about legal issues affecting the elderly, including a bibliography and resources for the public.
  • National Hospice & Palliative Care Organization: www.nhpco.org/templates/1/homepage.cfm : includes consumer information resources for hospice and palliative care.
  • National Hospice Foundation: www.nhwg.org/ : information regarding questions to help evaluate and select a hospice program.

Part 5: Books / DVDs

  • Bach, Richard, Illusions: The Adventures of a Reluctant Messiah (Dell, 1989).
  • Chopra, Deepak, The Seven Spiritual Laws of Success (Amber-Allen, 1993).
  • Dalai Lama, His Holiness The, The Path to Tranquility (Penguin Compass, 1998).
  • Dass, Ram, Still There (Riverhead Books, 2000).
  • Graboys, Thomas, MD, Life in the Balance ( Union square, 2009).
  • Kabat-Zinn, Jon, Full Catastrophe Living (Delta Book, 2005).
  • Kabat-Zinn, Jon, Wherever You Go There You Are (Hyperion, 1994).
  • Kingston, Karen, Clear Your Clutter with Feng Shui (Broadway, 1999).
  • Kushner, Harold, When Bad Things Happen to Good People (Schocken Books, 1989). Also published in Spanish (Cuando a la gente Buena le pasan cosas malas).
  • Lewis, C.S., A Grief Observed (Harper, 1961).
  • Mace, Nancy and Peter Rabins, The 36-Hour Day: a family guide to care for people with Alzheimer’s disease, other dementias, and memory loss in later life (Johns Hopkins University Press, 2006). Covers Alzheimer’s disease, senile dementia, patients, and home care.
  • Mehl-Madrona, Lewis, MD, PhD, Narrative Medicine (Bear & Company, Rochester, VT, 2007).
  • Nuland, Sherwin, How We Die: Reflections of Life’s Final Chapter (Vintage, 1995).
  • Sogyal Rimpoche, The Tibetan Book of the Living and Dying (Harper, 1993)
  • Whitworth, Helen and Jim, A Caregiver’s Guide to Lewy Body Dementia ( Demos Health, 2010).

Read any author who will help distract or divert you from the current circumstances. David Baldacci, Ken Bruen, Michael Connolly, Ken Follett, John Grisham, Robert Parker and James Patterson all worked for me, but Danielle Steele or Tami Hoag or Sara Paretsky may work for you. In other words, you need to find a way to change the subject for a little while. Read The Bible, Five People I Met in Heaven … whatever works.

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The organisations listed above nearly all are national US bodies. Please feel free to share your own local resources, within or outside the US, through the Comments facility below.

1 thought on “Resources/Links”

  1. Michael Kelly said:

    Hi,
    Congratulations on creating such a strong public voice and educational resource for people caring for people with dementia.
    I’m doing so with my mom, and I’m thinking ahead to what’s called end-of-life decision making. I’m trying to put together a workshop for my Alz/dementia support group on this topic, and am looking for what’s out there on how an ordinary person, armed with just an health care directive can come to the point of assert to the medical team what the HCD says about stopping further treatment.
    Do you know of any good resources along these lines?
    Would you be willing to share your own experience about this with me for my workshop?
    Thanks,
    Michael