Footnotes and Annotated Reading List: "Living Longer, Often with Dementia"

In This Section:

Publications and Resources

by Susan H. McFadden and John T. McFadden

Footnotes

1Administration on Aging (2012). A Profile of Older Americans: 2011.

2 Vaupel, J. W. (2010). Biodemography of human ageing. Nature, 464, 536-542.

3Administration on Aging, op. cit.

4Alzheimer’s Association (2012). 2012 Alzheimer’s disease facts and figures.Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association, 8, 131-168.

5 Ibid.

6 Plassman, B. L., Langa, K. M., Fisher, G. G., Heeringa, S. G., Weir, D. R., Ofstedal, M. B...Wallace, R. B. (2007). Prevalence of dementia in the United States: The aging, demographics, and memory study. Neuroepidemiology, 29, 125-132.

7 Plassman, B. L., Langa, K. M., Fisher, G. G., Heeringa, S. G., Weir, D. R., Ofstedal, M. B…Wallace, R. B. (2008). Prevalence of cognitive impairment without dementia in the United States. Annals of Internal Medicine, 148, 427-434.

8 Alzheimer’s Association, op. cit.

9 World Health Organization (2012). Dementia: A public health priority.

10 Galvin, J. E., and Sadowsky, C. H. (2012). Practical guidelines for the recognition and diagnosis of dementia. Journal of the American Board of Family Medicine, 25, 367-382.

11 Desai, A. K., and Grossberg, G. T. (2010). Psychiatric consultation in long-term care: A guide for health care professionals. Baltimore, Md.: The Johns Hopkins University Press.

12 Sonnen, J. A., Santa Cruz, K., Hemmy, L. S., Woltjer, R., Leverenz, J. B., Montine, K. S...Montine, T. J. (2011). Ecology of the aging human brain. Archives of Neurology, 68, 1049-1056.

13 Leggett, A. M., Zarit, S., Taylor, A., and Galvin, J. E. (2010). Stress and burden among caregivers of patients with Lewy Body Dementia. The Gerontologist, 51, 76-85.

14 Sonnen et al., op. cit.

15 Bateman, R. J., Xiong, C., Benzinger, T. L. S., Fagan, A. M., Goate, A., Fox, N. C...Morris, J. C. (2012). Clinical and biomarker changes in dominantly inherited Alzheimer’s disease. The New England Journal of Medicine, 367, 795-804.

16 Dubois, B., Feldman, H. H., Jacova, C., Cummings, J. L., DeKosky, S. T., Barberger-Gateau, P...Scheltens, P. (2010). Revising the definition of Alzheimer’s disease: A new lexicon. Lancet Neurology, 9, 1118-1127.

17 Bateman et al., op. cit.

18 A specific allele of the apoliprotein E gene (APOEε4) may increase susceptibility to AD, especially if inherited from both parents (e.g., there are two copies of the gene) but its exact role in contributing to the more common, later onset AD is unclear.Huntington’s disease, another rare form of dementia that begins in the 30s and 40s, has been known for many years to be caused by a mutation of an autosomal dominant gene. The famous folksinger Woody Guthrie died of Huntington’s disease at age 55, having inherited it from his mother.

19 Dubois et al., op. cit.

20 Bateman et al., op cit.

21 Post, S. G. (1995).The moral challenge of Alzheimer disease.Baltimore, Md.: The Johns Hopkins University Press, 3.

22 MetLife Foundation (2011). What America thinks: MetLife Foundation Alzheimer’s Survey.

23 George, D. (2010). Overcoming the social death of dementia through language. The Lancet, 376, 586-587.

24 Batsch, N. L., and Mittelman, M. S. (Eds.). (2012). World Alzheimer report 2012: Overcoming the stigma of dementia.

25 Kross, E., Berman, M. G., Mischel, W., Smith, E. E., and Wager, T. (2011). Social rejection shares somatosensory representations with physical pain. Proceedings of the National Academy of Sciences, 108, 6270-6275.

26 Zhong, C-B, and Leonardelli, G. J.(2008). Cold and lonely: Does social exclusion literally feel cold? Psychological Science, 19, 838-842.

27 Cacioppo, J. T., Amaral, D. G., Blanchard, J. J., Cameron, J. L., Carter, C. S., Crews, D. ...Quinn, K. J. (2007).Social neuroscience: Progress and implications for mental health. Perspectives on Psychological Science, 2, 99-123.

28 Agrigoroaei, S., and Lachman, M. E. (2011).Cognitive functioning in midlife and old age: Combined effects of psychosocial and behavior factors.The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 66B, i130-i140.

29 Seeman, T. E., Miller-Martinez, D. M., Merkin, S. S., Lachman, M. E., Tun, P. A., and Karlamangla, A. S. (2011). Histories of social engagement and adult cognition: Midlife in the U.S. Study.The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 66B, i141-i152.

30 Department of Health (2009). Living well with dementia: A national dementia strategy. London, U.K.

31Prince, M., Bryce, R., and Ferri, C. (Eds.). (2011). World Alzheimer’s report 2011: The benefits of early diagnosis and intervention.

32 Ibid.

33 Post, S. G. (2011). Five sources of hope for the deeply forgetful: Dementia in the 21st century.  Journal of Care Services Management, 5, 160-167.

34 Daviglus, M. L., Bell, C. C., Berrettini, W., Bowen, P. E., Connolly, E. S., Cox, N. J... Trevisan, M. (2010). National Institutes of Health State-of-the-Science Conference Statement: Preventing Alzheimer’s disease and cognitive decline. NIH Consensus State-of-the-Science Statements, 27(4), 1-30. Retrieved from http://consensus.nih.gov/2010/alzstatement.htm

35 Kitwood, T. (1997). Dementia reconsidered: The person comes first.Philadelphia, Pa.: Open University Press.

36 www.timeslips.org

37 Bahlke, L. A., Pericolosi, S., and Lewhman, M. E. (2010). Use of TimeSlips to improve communication in persons with moderate-late state dementia. Journal of Aging, Humanities, and the Arts, 4, 390-405.

38 Phillips, L. J., Reid-Arndt, S. A., and Pak, Y. (2010).  Effects of a creative expression intervention on emotions, communication, and quality of life in persons with dementia.  Nursing Research, 59, 417-425

39 Fritsch, T., Kwak, J., Grant, S., Lang, J., Montgomery, R. R., and Basting, A. D. (2009). Impact of TimeSlips, a creative expression intervention program, on nursing home residents with dementia and their caregivers.The Gerontologist, 49, 117-127.

40 Ibid.

41 George, D. R., Stuckey, H. L., Dillon, C. F., and Whitehead, M. M. (2011). Impact of participation in TimeSlips, a creative group-based storytelling program, on medical student attitudes toward persons with dementia: A qualitative study. The Gerontologist, 51, 699-703.

42 Bartlett, R., and O’Connor, D. (2010). Broadening the dementia debate: Towards social citizenship. Bristol, U.K.: Policy Press.

43 Phillips, L. J., Reid-Arndt, S. A., and Pak, Y. (2010). Effects of a creative expression intervention on emotions, communication, and quality of life in persons with dementia.Nursing Research, 59, 417-425.

44 Montine, T. J., Sonnen, J. A., Montine, K. S., Crane, P. K., and Larson, E. B. (2012). Adult changes in thought study: Dementia is an individually varying convergent syndrome with prevalent clinically silent diseases that may be modified by some commonly used therapeutics. Current Alzheimer Research, 9, 718-723.

45 Olazarán, J., Reisberg, B., Clare, L., Cruz, I., Peña-Casanova, J., del Ser, T. ...Muñiz, R. (2010). Nonpharmacological therapies in Alzheimer’s disease: A systematic review of efficacy. Dementia and Geriatric Cognitive Disorders, 30, 161-178.

46 Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L. ... Iliffe, S. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies.PLOS Medicine, 9(10), 1-12.

47 Most Memory Café programs in the U.S. are quite new. Recently, Carole Larkin, a Geriatric Care Manager, compiled a national list of Memory Cafés that she will update as she learns of more being started. She also collaborated on the development of a “tool kit” for persons interested in starting a Memory Café in their neighborhoods.http://www.thirdageservices.com/MemoryCafe.html.

48 In the U.K., Rotary Clubs formed an organization called RePOD: Rotarians Easing Problems of Dementia. They have been instrumental in promoting a variety of psychosocial programs. http://www.repod.org.uk

49 Dow, B., Haralambous, B., Hempton, C., Hunt, S., and Calleja, D. (2011). Evaluation of Alzheimer’s Australia Vic Memory Cane Cafés. International Psychogeriatrics, 23, 246-255.

50 Prince, M., and Jackson, J. (Eds.). (2009). Alzheimer’s Disease International: World Alzheimer report 2009.

51http://www.alzheimersreadingroom.com

52 http://www.dasninternational.org

53 Taylor, R. (2007). Alzheimer’s from the inside out. Baltimore, Md.: Health Professions Press. See also his blog, http://www.richardtaylorphd.com

54 Innovations in Dementia (2012). Developing dementia-friendly communities: Learning and guidance for local authorities. London: Local Government Association.

55 McFadden, S. H., and McFadden, J. T. (2011). Aging together: Dementia, friendship, and flourishing communities.Baltimore, Md.: The Johns Hopkins University Press.

Recommended Reading about Dementia

By Susan H. McFadden and John T. McFadden

Books

Ballenger, J. F. (2006). Self, Senility, and Alzheimer’s Disease in Modern America: A History. Baltimore, Md.: The Johns Hopkins University Press.

In this fascinating and scholarly account of the convergence in the 19th century of changing cultural attitudes about health and medicine with changing views of selfhood, Ballenger describes how the “health politics of anguish” developed in the 20th century as the Alzheimer’s disease movement grew.

Bartlett, R., and O’Connor, D. (2010). Broadening the Dementia Debate: Towards Social Citizenship. Bristol, U.K.: The Policy Press.

The authors lead the effort to introduce the idea of “social citizenship” into the international conversation about dementia. They show why it helps to think differently about people living with dementia and they apply this new thinking to social and healthcare practices and research practices. The book does a very good job of combining theory and practice in an accessible way.

Basting, A. D. (2009). Forget Memory: Creating Better Lives for People with Dementia.Baltimore, Md.: The Johns Hopkins University Press.

Basting is in the vanguard of promoting creative engagement for persons with memory loss. In this book she describes the ways popular culture reinforces stigma about dementia. She argues for a new story and describes a number of arts programs that are helping to tell that new story, one about how people can retain a meaningful social role (as creators) despite progressive forgetfulness. She calls this the “cultural cure.” For more information about her work, go online to www.ageandcommunity.org.

Cole, T. R. (1992). The Journey of Life: A Cultural History of Aging in America. New York: Cambridge University Press.

This book addresses historical sources of current perspectives on aging, including the conceptualization of memory loss. Drawing upon scholarship in philosophy, theology, art, and history, Cole weaves together a fascinating study that helps readers understand the origins of current postmodern images of aging.

Desai, A. K., and Grossberg, G. T. (2010). Psychiatric Consultation in Long-term Care: A Guide for Health Care Professionals. Baltimore, Md.: The Johns Hopkins University Press.

This book provides useful information for any clinical psychologist working with older adults, not just persons living in long-term care. The authors take a holistic approach to aging and mental-health problems and provide many good case examples. Topics include dementia, delirium, mood disorders, psychotic disorders, anxiety disorders, and personality disorders.

Hughes, J. C., Louw, S. J., and Sabat, S. R. (Eds.). (2006). Dementia: Mind, Meaning and the Person. New York: Oxford University Press.

This collection of papers takes a holistic approach to dementia, critically addresses many common assumptions about dementia, and presents philosophical, ethical, and spiritual insights into how we think about identity, personhood, and dementia.

Kitwood, T. (1998). Dementia Reconsidered: The Person Comes First. Philadelphia: Open University Press.

The book that launched the culture change movement in long-term care, this work is indispensable to anyone committed to supporting the personhood of people with dementia.

Lewis, T., Amini, R., and Lannon, R. (2000). A General Theory of Love. New York: Vintage Books.

A well-written, accessible book about the neuropsychology of love and social relationships.

McFadden, S. H., and McFadden, J. T. (2011). Aging Together: Dementia, Friendship, and Flourishing Communities. Baltimore, Md.: The Johns Hopkins University Press.

Our book about nurturing relationships with friends journeying into progressive forgetfulness argues that faith communities have many resources to support these relationships, not the least of which are the beliefs that bind them together.

Post, S. G. (2000). The Moral Challenge of Alzheimer Disease (2nd ed.). Baltimore, Md.: The Johns Hopkins University Press.

Now something of a classic, this book succinctly lays out the ethical issues raised in the care for persons with dementia.

Online Sources about Dementia, Friendship, and Community

George, D. (2010). “Overcoming the Social Death of Dementia through Language.” The Lancet, 376, 586-587.

This two-page article presents a powerful indictment of the ways most people talk about dementia and the persons who live with it.

“I’ll Get by with a Little Help from My Friends: Information for Friends of People with Dementia.” www.alzscot.org/pages/info/friends.htm

This helpful, practical guide is published by Alzheimer Scotland.

Innovations in Dementia (February 2011). “Dementia Capable Communities: The Views of People with Dementia and Their Supporters.”

A report on research conducted in England in which persons with dementia were interviewed about the kinds of support services and social networks they want from their communities.

Creative Expression Programs: Examples of Psychosocial Interventions

Alzheimer’s Poetry Project - Founded by poet Gary Glazner, this program is becoming well-known in the U.S. and Europe. Online training is available. www.alzpoetry.com

The Dancing Heart - Artistic expression through dance. Groups can include five to 15 persons, sometimes more. Through dance movements, elders convey stories and feel joy in the moment from connecting with others and moving with music. Kairos Dance Theatre, an intergenerational dance company, founded The Dancing Heart. www.kairosdance.org.

Memories in the Making™ -  An interactive art program to help people with dementia express feelings through painting. Go online to www.alzheimersartspeaks.com.

Songwriting Works - If you can keep time with a tambourine, you can lead a Songwriting Works program. If you can strum a guitar, that works, too! In groups, people with dementia offer ideas for words and melodies and create songs to sing together. www.songwritingworks.org

TimeSlips - This creative storytelling program is used widely and has received attention from researchers who have shown its positive effects on people with dementia and their caregivers. Online training is available. www.timeslips.org

Learning from People with Dementia

Henderson, C. S. (1998). Partial View: An Alzheimer’s Journal. Dallas: Southern Methodist University Press.

History professor Cary Henderson is one of the few people with a definitive diagnosis of Alzheimer’s since he had brain tissue biopsied because of another problem. This book, illustrated with photographs of Henderson and his family, offers his reflections on the experience of Alzheimer’s.

Snyder, L. (2009). Speaking Our Minds: What It’s Like to Have Alzheimer’s (Rev. ed.).Baltimore, Md.: Health Professions Press.

A collection of interviews with seven remarkable people diagnosed with Alzheimer’s disease and insightful reflections from Lisa Snyder, a social worker, who helped them organize one of the first support groups for people with dementia.

Taylor, R. (2007). Alzheimer’s from the Inside Out. Baltimore, Md.: Health Professions Press.

Richard Taylor, a clinical psychologist diagnosed with Alzheimer’s disease, has become a major spokesperson for people with the diagnosis. In this book, he describes what it feels like to have progressive memory loss. Taylor gives lectures all over the world, encouraging persons with dementia to “speak up and speak out” about their experiences. He posts blog entries at www.richardtaylorphd.com.

Learning from Those Who Care for People with Dementia

Kessler, L. (2007). Dancing with Rose: Finding Life in the Land of Alzheimer’s. New York: Viking.

Lauren Kessler was an English professor whose mother died of Alzheimer’s. Kessler felt she didn’t give adequate care to her mom, and so after her death, she underwent training as a certified nursing assistant (CNA). This book describes her CNA experiences in a nursing home, working with many people with advanced dementia, people who she describes as forming a “quirky community.”

Learning from Care Partners

Whitman, L. (Ed.). (2010). Telling Tales about Dementia: Experiences of Caring. Philadelphia: Jessica Kingsley Publishers.

This book collects short first-person accounts by people caring for a loved one with dementia: husbands, wives, adult children, and partners. Their stories will be recognized by anyone who has also given such caring.

Other Informative Websites

Alzheimer’s Disease International (2011). “World Alzheimer Report 2011: The Benefits of Early Diagnosis and Intervention.” www.alz.co.uk/research/world-report-2011

Alzheimer’s Disease International releases a major report on a different topic every year. The report in 2010 addresses worldwide economic impact and this one describes the need for early diagnosis and the reasons it’s not happening around the world.

Alzheimer’s Society (2010). My Name Is Not Dementia: People with Dementia Discuss Quality of Life Indicators. www.alzheimers.org.uk/site/scripts/download_info.php?fileID=876

Alzheimer’s Society (2010). My Name Is Not Dementia: Literature Review. www.alzheimers.org.uk/site/scripts/download_info.php?fileID=877

These two reports were part of a national campaign in the U.K. to combat the stigma of dementia.

Living Well with Dementia: A National Dementia Strategy (Accessible Summary).”

This booklet explains the U.K. National Dementia Strategy for a lay audience. There are a number of other publications on this topic available from www.dh.gov.uk. See p. 20 of this document for the nine statements that every person with dementia in the U.K. and their carers should be able to say by 2014.

National Institutes of Health (2010, April 26-28). “National Institutes of Health State-of-the-Science Conference Statement: Preventing Alzheimer’s Disease and Cognitive Decline.” consensus.nih.gov/2010/alzstatement.htm

A report on the best science known at the time about prevention of Alzheimer’s disease, this document reveals that so far, not much is known.

U.S. Department of Health and Human Services (2012). “National Plan to Address Alzheimer’s Disease.”

The major goal of this plan is to “prevent and effectively treat Alzheimer’s disease by 2025.”It is interesting to compare it to the National Dementia Strategy of the U.K. (see above). 

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