Dementia Care Resources

There are, of course, many paths you can take to gain information, knowledge, insight and inspiration when facing into a diagnosis of Alzheimer’s or a related dementia. I am constantly accumulating resources – hard copy and on-line – pertaining both to dementia and cognitive impairment, as well as to relevant and related topics which might be of interest to dementia caregivers and their families.

ONLINE CONNECTIONS:

» Specialized Services

Old Friends Club –  Serving the Carnation and Kirkland areas in the State of Washington, “Old Friends Club” is an organization dedicated to providing daytime memory care for those with a dementia diagnosis, and respite and support for family caregivers.

With a Little Help, Inc.“With a Little Help” is a Licensed Home Care Agency. It provides in-home care to seniors, serving the greater Seattle and Bellevue areas in the State of Washington.

Speaking of Dying: End of Life Planning – Trudy James is a long-time interfaith chaplain, whose desire for people to become more aware of end of life resources and choices led her to produce the film, Speaking of Dying. Information on film screenings, as well as End of Life Planning Workshops registration, is available through her site.

End of Life Washington (formerly Compassion & Choices of Washington) – This non-profit organization provides a myriad of services, guidance, support and resources relating to end-of-life planning.

» Articles and Videos

How Do You Live Knowing You Might Have an Alzheimer’s Gene? by Gina Kolata (New York Times Magazine – June 7, 2012) – An article looking at the role of genetics in the development of Alzheimer’s disease. 

How My Mother Disappeared: My Mother’s Struggle With Dementia, by Alex Witchel (New York Times Magazine – September 9, 2012) – a daughter’s story of ambiguous loss as she faces into her mother’s decline from stroke related dementia. 

Alzheimer’s Cafe video – KOMO News – This Video and accompanying article describe “Alzheimer’s Cafe’s” and the benefits of social engagement for those with dementia and their families. 

» Alzheimer’s Association – National & Washington State

Main Website

Washington State Chapter

Alzheimer’s and Dementia Caregiver Center

ALZConnected® – A free on-line community dedicated to supporting all those impacted by Alzheimer’s or related dementia.

2017 Alzheimer’s Disease Facts & Figures (Azheimer’s Association) – Download the pdf brochure – for free! – from this link.

Generation Alzheimer’s: The Defining Disease of the Baby Boomers  – There is a “get the report” link that allows you to be sent a pdf brochure – again, for free!

» U.S. Government

» Special Topics

Elder and Family Mediation Services, by Arlene Kardasis & Blair Trippe – A comprehensive look on the role of mediation and facilitated dialogue as tools in helping families make decisions around elder care.

Caring With Confidence, by Holy Redeemer Hospice Experts – A look at support for end of life caregivers created by “Healthlink”, a website that provides current health information to support wellness.

» Blogs

Living: the ultimate team sport – A team of Baby Boomers and More,  by Irene Olson. The focus of this blog – which delves into a variety of topics and life experiences –  is on how in good times and bad, people are always stronger together. 

 

BOOKS:

» Dementia Caregiving

Boss, Pauline, PH.D., Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief (Jossey-Bass, 2011) – Caring for a loved one with dementia is often described as “the long goodbye”. Pauline Boss delves into the importance of self-care and stress relief in the midst of experiencing the ambiguous loss associated with caring for a loved one with dementia. 

Boss, Pauline, PH.D., Ambiguous Loss: Learning To Live With Unresolved Grief (Harvard University Press, 1999) – Dr. Boss discusses the challenges of grieving when one loses a loved one in a manner clouded in uncertainty and ambiguity.

Carnarius, Megan, RN, NHA, LMT, A Deeper Perspective On Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights (Findhorn Press, 2015) – A unique perspective on the graces and blessings of person-centered dementia care, written with a deep compassion for both the caregivers and the recipients of their care.  

Mace, Nancy L, MA & Rabins, Peter V., M.D., The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss, (Grand Central Life & Style, 2012 ) – The 5th edition of a resource for individuals and families facing a loved one’s diagnosis of Alzheimer’s or related dementias. 

Manteau-Rao, Marguerite, LCSW, Caring for a Loved One with Dementia: A Mindfulness-Based Guide for Reducing Stress and Making the Best of Your Journey Together, (New Harbinger Publications, Inc., 2016) – A look at the use of mindfulness and “being present” as effective tools for dementia caregivers. 

Power, G. Allen, M.D., Dementia Beyond Drugs: Changing The Culture of Care, (HPP: Health Professions Press, 2010) – Dr. Power examines dementia care practices in residential care settings, and introduces the “experiential” model of care.

Zeisel, John, PH.D., I’m Still Here: A New Philosophy of Alzheimer’s Care (Avery Trade, 2009) – This work speaks to the value of engaging with those with dementia in the here and now, which can lead to an appreciation of their vibrancy and aliveness, and the creation of relationships enriched in new beginnings. 

» Palliative & Hospice Care/End of Life Planning

Egan, Kerry, On Living  (Riverhead Books, 2016) – An insightful, inspiring and transparent look at the experiences and challenges of being a hospice chaplain.

Gawande, Atul, M.D., Being Mortal: Medicine and What Matters in the End  (Metropolitan Books, Henry Holt and Company New York, 2014) – How do we prepare to die? In this seminal and engrossing book, Dr. Gawande stresses the importance of being conscious and aware of end-of-life planning and the role of the medical professionals during their patients’ end-of- life journey.

Kalanithi, Paul, M.D., When Breath Becomes Air (Random House, 2016) – A personal and moving account of a doctor’s end-of-life journey, as he transitions from being a neurosurgeon with an unlimited future, to being diagnosed with cancer and thus becoming a patient preparing to die.

Newland, Guy, A Buddhist Grief Observed J (Wisdom Publications, 2016) – Using as a backdrop his own challenging experiences of pain and sorrow following the death of his wife from cancer, Mr. Newland brings a very sensitive and enlightened Buddhist perspective to the grief journey. 

Volandes, Angelo E., M.D., The Conversation: A Revolutionary Plan For End-of-Life Care (Bloomsbury, 2015) – Dr. Volandes – as the title to his book intimates – discusses the importance of patients and their physicians discussing how they want to live during their end-of-life transition. 

» Novels & Biographical Works

Genova, Lisa, Still Alice (Gallery Books, 2007 & 2009) – Written by a neuroscientist, this is a novel about early-onset dementia and its impact on a family. Thoughtfully written and compelling – and in my opinion the movie was a great adaptation as well!

Olson, Irene Frances, Requiem for the Status Quo (Black Rose writing, 2017) – Described by the author as “A novel written by a caregiver for caregivers”  this auspicious debut work explores the unique challenges associated with caring for a loved one with Alzheimer’s disease. The writing of this novel was inspired by Ms. Olson’s experiences as her father’s caregiver during his journey with Alzheimer’s. Additional information on this book, and the author, can be found here.

Petersen, Barry, Jan’s Story: Love lost to the long goodbye of Alzheimer’s (Behler Publications, 2010) – A personal memoir of Barry Petersen’s journey caring for his wife with early-onset dementia. 

 

 

Disclaimer of Endorsement and Liability

Don Desonier does not endorse or recommend any commercial products, information, processes, websites or services set forth,  mentioned or cited in the resources set forth on this page. Therefore, mention of any commercial products, information, processes, websites, or services, whether on this page, or anywhere on the website transitionsindementiacare.com, cannot be construed as an endorsement or recommendation.

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