Resources

Mayo Clinic Guide to Alzheimer’s Disease and Other Dementias: A Guide for People with Dementia and Those Who Care for Them, 7th edition. By Jonathan Graff-Radford and Angela M. Lunde. An essential resource, this authoritative guide presents the latest neurological research, typical symptoms associated with dementia, treatment options, suggestions on preventative measures, information on the common causes of the disease, and tips for managing the day-to-day challenges of caring for someone with dementia.
https://www.simonandschuster.com/books/Mayo-Clinic-on-Alzheimers-Disease-and-Other Dementias/Jonathon-Graff-Radford/9781893005617

Self, Senility, and Alzheimer’s Disease in Modern America: A History by Jesse F. Ballenger. In clear prose, the author provides an overview of the science and history of aging and dementia. https://www.amazon.com/Senility-Alzheimers-Disease-Modern-America-ebook/dp/B0039SLS24

•  Dr. Ballenger also has a blog, Conquer Confusion: https://conquerconfusion.wordpress.com

The End of Memory: A Natural History of Aging and Alzheimer’s by Jay Ingram. Ingram, a science writer, provides a “biography” and “anatomy” of Alzheimer’s in an accessible style. This information-packed volume describes theories and research as to the cause(s) of Alzheimer’s and presents viewpoints that question those findings, as well. https://us.macmillan.com/books/9781466887916

Dementia Reconsidered Revisted: The Person Still Comes First by Tom Kitwood (2nd edition). This is an essential resource on the person-centered model of dementia care. Kitwood’s approach focuses on the “centrality of relationships, the uniqueness of persons . . . rather than emphasize the differences that dementia brings, we will first celebrate our common ground.” Updated (2019), with commentary. https://www.amazon.com/Dementia-Reconsidered-Revisited-person-still-dp-0335248020/dp/0335248020/ref=dp_ob_title_bk

The Alzheimer Conundrum: Entanglements of Dementia and Aging by Margaret Lock. A medical anthropologist, Dr. Lock explores what one reviewer describes as the “uncertain boundaries between aging and dementia.” Despite years of research, a cure for Alzheimer’s remains elusive. Lock argues that in addition to on-going research, a public health approach is needed to support those with dementia and their caregivers. https://press.princeton.edu/books/hardcover/9780691149783/the-alzheimer-conundrum

The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis by Peter J. Whitehouse. In his thought-provoking––and provocative––book, Dr .Whitehouse challenges conventional views of Alzheimer’s. He discusses normal brain aging and encourages a focus on brain fitness. https://us.macmillan.com/books/9781429920711

“The Disremembered” by Charles Leadbeater. How do we define identity? Given the changes a person with dementia undergoes, Leadbeater’s accessible discussion of this question was helpful to me. He concludes that “how we think of race, sexuality, gender and disability” has been shaped by identity politics, which asserts that “people deserve equal recognition.” This view also should apply to persons with dementia, for “they are not lesser people.” https://aeon.co/essays/if-your-memory-fails-are-you-still-the-same-person

 

“Intimations of the Great Unlearning” by Gisela Webb. An inspiring discussion of spirituality and dementia by a professor of comparative religion whose mother had Alzheimer’s. Webb explores what dementia’s decline might tell us “about the nature of the mind and personhood, the relationship between brain and consciousness, the relationship of mind, body, and soul/spirit.” She also considers what care partners can learn about themselves that may help them to “grow intellectually and spiritually through this process.” http://crosscurrents.org/webb.htm

Books for Care Partners

The first three readings were particularly helpful during my years of caregiving:

Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief by Pauline Boss. In accessible prose, Dr. Boss provides advice for managing stress and grief while caring for a person with dementia. Includes useful guidelines for care partners, such as finding meaning in our experience and accepting paradoxes––such as the person with dementia being both here and not here––which makes dementia such an ambiguous loss. https://www.amazon.com/Loving-Someone-Who-Has-Dementia/dp/1118002296

•  Dr. Boss also has a website: https://www.ambiguousloss.com

Deeper into the Soul: Beyond Dementia and Alzheimer’s Toward Forgetfulness Care by Nader Robert Shabahangi and Bogna Szymkiewicz. In clear prose, the authors explain the types and phases of dementia. They address the emotional and spiritual experience of persons with forgetfulness and their care partners. https://www.amazon.com/Deeper-Into-Soul-Alzheimers-Forgetfulness/dp/0975874497

Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease. Ed. Holly J. Hughes. Some days you only have time to read a poem or short prose piece. This compilation collects works about dementia written by family members and health care workers. Poet Tess Gallagher says of living with her mother’s dementia, “We moved beyond forgetting . . . to discovering, for both of us, the best way to carry each hour, each day, each season.” http://www.beyondforgettingbook.com/preface.html

I’m Still Here: A New Philosophy of Alzheimer’s Care by John Zeisel. Provides practical ways to communicate and connect with person who have dementia, with a focus on using the arts as a means to do so. https://www.penguinrandomhouse.com/books/303485/im-still-here-by-john-zeisel/

Memoirs

Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s by Olivia Ames Hoblitzelle. I treasure this memoir, which contains wise counsel for caregivers. Hoblitzelle’s account includes her husband’s observations as they strive to live through his dementia guided by the spiritual traditions they’d studied. https://www.amazon.com/Ten-Thousand-Joys-Sorrows-Alzheimers/dp/1585428272

• Also see: “The Blessing of Alzheimer’s.” Interview with Olivia Ames Hoblitzelle by Christina Barber-Just. https://alumnae.smith.edu/spotlight/the-blessing-of-alzheimer’s/

Elegy for Iris by John Bayley. The Iris of the title is the noted English novelist Iris Murdoch, who had Alzheimer’s. She was married to John Bayley, who writes of the love and humor they continued to share, along with moments of despair and frustration. He states that “the unique individuality of one’s spouse has not been lost in the common symptoms” of dementia. https://us.macmillan.com/books/9780312253820

The Iceberg by Marion Coutts. Although it’s not about dementia, this is one of the best memoirs I’ve read about love and loss. Coutts recounts the two years that led up to the death of her husband, a writer, from a brain tumor––including his loss of language. It’s both raw and beautiful. https://www.amazon.com/Iceberg-Memoir-Marion-Coutts/dp/0802124607

I Remain in Darkness by Annie Ernaux. In restrained, unsentimental prose, Ernaux explores her bond with her mother and bears witness to her mother’s decline and death from Alzheimer’s. https://www.sevenstories.com/books/3209-i-remain-in-darkness

Scar Tissue by Michael Ignatieff.  Although this powerful, thought-provoking book is listed as a novel, the author’s mother had Alzheimer’s. Ignatieff chose a fictionalized, philosophical portrayal in which he deals with the resultant fear and anxiety in his life and in the family. https://www.amazon.com/Scar-Tissue-Michael-Ignatieff/dp/0140179720

Stammered Songbook: A Mother’s Book of Hours by Erwin Mortier. In a series of beautifully rendered, brief observations, Mortier details his mother’s dementia. It’s a meditation on love, language, memory, and mortality. https://www.amazon.com/Stammered-Songbook-Mothers-Book-Hours/dp/1782270213

Online Resources

General Information about Alzheimer’s and Other Dementias

Alzheimer’s Association. Seeks to end Alzheimer’s and all other dementia by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Provides links to research and resources, as well as to local chapters. www.alz.org

Alzheimer’s Foundation of America. Provides support, services, and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias. www.alzfdn.org

• Offers caregiving resources, as well as memory screening. https://alzfdn.org/about-afas-national-memory-screening-program/

Alzheimer Research Forum. A news and information site developed for medical researchers that reports the latest scientific findings in Alzheimer’s research. Designed for scientists, rather than the general public. www.alzforum.org

Mayo Clinic Dementia Program Guide. An overview of Mayo Clinic’s programs, including a guide to memory loss for persons diagnosed with dementia. Information on the Habit Healthy Action program for those with Mild Cognitive Impairment and the Mindfulness program for care partners. Virtual offerings include a support group for dementia caregivers and Lewy Body information and support. https://mcforms.mayo.edu/mc7900-mc7999/mc7963-01.pdf

Making Sense of Alzheimers. A beautiful site that includes sections on the art and the science of the mind, as well as individuals’ stories, in “The One I Know.” https://makingsenseofalzheimers.org

• Here’s a link to their resources page. https://makingsenseofalzheimers.org/resources/

Alzheimer’s and Dementia Weekly. Regularly updated, an excellent resource with numerous videos and articles on Alzheimer’s and dementia. http://www.alzheimersweekly.com

National Institute on Aging. A layperson’s guide to the neuroscience of Alzheimer’s, including a link to Brain Health resources. https://www.nia.nih.gov/health/what-happens-brain-alzheimers-disease

People Helping People with Alzheimer’s. Resources from the Administration for Community Living on Alzheimer’s disease and other forms of dementia. Alzheimers.gov

Association for Frontotemporal Degeneration (FTD). Offers information, education and support to persons diagnosed with an FTD disorder, and for their families and caregivers. www.theaftd.org

Lewy Body Dementia Association. Raises awareness of Lewy body dementias (LBD), promotes scientific advances, and supports people with LBD, their families, and caregivers. LBD is complex and can present a range of physical, cognitive, and behavioral symptoms. www.lbda.org

Specifically for Care Partners

AlzConnected. Free online community for everyone affected by Alzheimer’s or other dementias with message boards for persons with dementia, caregivers, family, and friends. www.alzconnected.org

Family Caregiver Alliance. Addresses the needs of families and friends providing long-term care at home. Provides caregiver resources, such as “Caring for Another” and “Caring for Yourself.”  Also has links to available services by state. www.caregiver.org

Mayo Clinic Dementia Education and Wellness Programs. Information on programs and workshops offered by the Mayo Clinic that are designed for family care partners of people with dementia, including mindfulness training. Additional offerings focus specifically on Lewy Body dementia. https://www.mayo.edu/research/centers-programs/alzheimers-disease-research-center/community-outreach/dementia-education-and-wellness-programs

National Family Caregivers Association. This website is for caregivers in general but has a section for dementia caregivers, including informative videos. www.nfcacares.org

National Alliance for Caregiving. A site for caregivers in general. Has a link to a Brain Health Conversation Guide for family caregivers to assist them in starting conversations with a loved one about memory changes. https://www.caregiving.org

Caregiver Action Network. General resources for caregivers, including a Peer Forum, a Story Sharing platform, and the Family Caregiver Tool Box. http://www.caregiveraction.org/

Blogs

Inside Dementia. Martha Stettinius, author of a book about her mother’s dementia, offers posts about many topics, such as agitation, reluctant caregivers, and driving and dementia.  http://www.insidedementia.com/blog

ALZ Blog. Created by the Alzheimer’s Assn., this blog allows caregivers and those with Alzheimer’s to share their stories. It also provides updates on research and on dementia-related articles, books, and films. https://www.alz.org/blog/

The Caregivers Voice. Founded by Brenda Avadian, this informative blog serves family caregivers and professionals who work with adults with cognitive impairment or dementia. https://thecaregiversvoice.com/blog/

Suddenly Mad. Beautiful blog with writing and artwork by a woman who has early onset dementia. Offers insights for persons in the early stages of dementia as well for family and friends living with and witnessing a loved one’s decline. https://suddenlymad.com/

The Lewy Body Roller Coaster. A blog by Helen and James Whitworth, caregivers who share information on Lewy Body Dementia for educational purposes. http://lewybodydementia.blogspot.com/