Writers with Dementia: the Interplay among Reading, Writing, and Personhood



People with dementia have eloquently described their experiences with written language. Most professional discussions of Alzheimer’s disease and related dementias mention losses in reading and writing skills, while simultaneously commenting that maintaining these activities is good exercise for the brain. In this chapter, we consider how people with dementia make use of reading and writing activities to enhance memory, satisfaction, self-esteem, and interpersonal communication. Then we review empirical findings and lived experiences concerning declines in reading and writing abilities during the progression of Alzheimer’s disease and other related dementias. Strategies for coping with these losses are featured next. We conclude by emphasizing the learning, courage, and creativity involved in maintaining one’s sense of self in dementia and the role of reading and writing in that process.


Exception Word Large Print Grammatical Complexity Sound Correspondence Handwriting Movement 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. Bayles, K.A. & Kaszniak, A.W. (1987) Communication and Cognition in Normal Aging and Dementia. Boston: Little, Brown.Google Scholar
  2. Binetti, G., Cappa, S.F., Magni, E., Padovani, A., Bianchetti, A., & Trabucchi, M. (1998) “Visual and spatial perception in the early phase of Alzheimer’s disease.” Neuropsychology, 12: 29–33.CrossRefGoogle Scholar
  3. Boden, C. (1998) Who Will I Be When I Die? Australia: HarperCollins.Google Scholar
  4. Bourgeois, M.S. (2001) “Matching Activity Modifications to the Progression of Functional Changes”, in E. Eisner (ed.), “Can Do” Communication and Activity for Adults with Alzheimer’s Disease: Strength-based Assessment and Activities (pp. 101–7). Austin, Texas: Pro-Ed.Google Scholar
  5. Croisile, B., Brabant, M.J., Carmol, T., Lepage, Y., Aimard, G., & Trillet, M. (1996) “Comparison between oral and written spelling in Alzheimer’s disease.” Brain and Language, 54: 361–87.CrossRefGoogle Scholar
  6. Davis, R. (1989) My Journey into Alzheimer’s Disease. Wheaton, IL: Tyndale House.Google Scholar
  7. Dawson, P., Wells, D.L., & Kline, K. (1993) Enhancing the Abilities of Persons with Alzheimer’s and Related Dementias: A Nursing Perspective. NY: Springer.Google Scholar
  8. DeBaggio, T. (2002) Losing My Mind: An Intimate Look at Life with Alzheimer’s. NY: Free Press.Google Scholar
  9. Dienstag, A. (2003) “Lessons from the Lifelines Writing Group for People in the Early Stages of Alzheimer’s Disease: Forgetting that We Don’t Remember”, in J.L. Ronch & J.A. Goldfield (eds.), Mental Wellness in Aging: Strengths-based Approaches (pp. 343–52). Baltimore: Health Professions Press.Google Scholar
  10. Duchek, J.M., Balota, D.A., & Thessing, V.C. (1998) “Inhibition of visual and conceptual information during reading in healthy aging and Alzheimer’s disease”. Aging, Neuropsychology, and Cognition, 5(3): 169–81.CrossRefGoogle Scholar
  11. Glosser, G., Baker, K.M., de Vries, J.J., Alavi, A., Grossman, M., & Clark, C.M. (2002) “Disturbed visual processing contributes to impaired reading in Alzheimer’s disease”. Neuropsychologia, 40: 902–9.CrossRefGoogle Scholar
  12. Hagens, C., Beaman, A., & Ryan, E.B. (2003) “Reminiscing, poetry writing, and remembering boxes: personhood-centered communication with cognitively impaired older adults”. Activities, Adaptation, and Aging, 27 (3/4): 97–112.CrossRefGoogle Scholar
  13. Harris, P.B. (ed.) (2002) The Person with Alzheimer’s Disease: Pathways to Understanding the Experience. Baltimore: Johns Hopkins University Press.Google Scholar
  14. Hughes, J.C., Graham, N., Patterson, K., & Hodges, J.R. (1997) “Dysgraphia in mild dementia of Alzheimer’s type”. Neuropsychologia, 35: 533–45.CrossRefGoogle Scholar
  15. Kemper, S. & Mitzner, T.L. (2001) “Language Production and Comprehension.” In J.E. Birren & K.W. Schaie (eds.) Handbook of the Psychology of Aging (5th Edition) (pp. 378–93). San Diego: Academic Press.Google Scholar
  16. Kemper, S., Thompson, M., & Marquis, J. (2001) “Longitudinal change in language production: effects of aging and dementia on grammatical complexity and propositional content”. Psychology and Aging, 16: 600–14.CrossRefGoogle Scholar
  17. Killick, J. (2003) “Memorializing dementia”. Alzheimer’s Care Quarterly, 4(1): 18–25.Google Scholar
  18. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Philadelphia: Open University Press.Google Scholar
  19. Kitwood T. & Bredin K. (1992) “Towards a theory of dementia care: personhood and well-being”. Aging and Society, 12: 269–87.CrossRefGoogle Scholar
  20. Lueck, K.L., Mendez, M.F., & Perryman, K.M. (2000) “Eye movement abnormalities during reading in patients with Alzheimer’s disease”. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 13(2): 77–82.Google Scholar
  21. Luzzatti, C., Laiacona, M., & Agazzi, D. (2003) “Multiple patterns of writing disorders in dementia of the Alzheimer type and their evolution”. Neuropsychologia, 41: 759–72.CrossRefGoogle Scholar
  22. McGowin, D.F. (1993) Living in the Labyrinth: A Personal Journey through the Maze of Alzheimer’s. NY: Delacorte Press.Google Scholar
  23. Ronch, J.L. & Goldfield, J. (eds.) (2003) Mental Wellness in Aging: Strengths-based Approaches. Baltimore: Health Professions Press.Google Scholar
  24. Santo-Pietro, M.J. & Ostuni, E. (2003) Successful Communication with Persons with Alzheimer’s Disease, An In-service Manual. (2nd Edition) St. Louis, MO: Butterworth-Heinemann.Google Scholar
  25. Schmand, B. Geerlings, M.I., Jonker, C., & Lindeboom, J. (1998) “Reading ability as an estimator of premorbid intelligence: does it remain stable in emergent dementia?”. Journal of Clinical and Experimental Neuropsychology, 20(1): 42–51.CrossRefGoogle Scholar
  26. Slavin, M.J., Phillips, J.G., Bradshaw, J.L., Hall, K.A., & Presnell, I. (1999) “Consistency of handwriting movements in dementia of the Alzheimer’s type: a comparison with Huntington’s and Parkinson’s diseases. Journal of the International Neuropsychological Society, 5(1): 20–5.CrossRefGoogle Scholar
  27. Snyder, L. (1999) Speaking Our Minds: Personal Reflections from Individuals with Alzheimer’s. San Francisco: W.H. Freeman.Google Scholar
  28. Souren, L. & Franssen, E. (1993) Broken Connections: Alzheimer’s Disease, Part II -Practical Guidelines for Caring for the Alzheimer Patient. Berwyn, PA: Swets and Zeitlinger.Google Scholar
  29. Stevens, A.B., King, C.A., & Camp, C.J. (1993) “Improving prose memory and social interaction using question asking reading with adult day care clients”. Educational Gerontology, 19: 651–62.CrossRefGoogle Scholar
  30. Strain, E., Patterson, K., Graham, N., & Hodges, J.R. (1998) “Word reading in Alzheimer’s disease: cross-sectional and longitudinal analyses of response time and accuracy data”. Neuropsychologia, 36: 155–71.CrossRefGoogle Scholar
  31. Truscott, M. (2003) “Life in the slow lane”. Alzheimer’s Care Quarterly, 4(1): 11–17.Google Scholar
  32. Weinstein, C.S. & Sachs, W. (2000) “Memory 101: a psychotherapist’s guide to understanding and teaching memory strategies to patients and significant others”. Journal of Geriatric Psychiatry, 33: 5–26.Google Scholar

Copyright information

© Ellen Bouchard Ryan, Hendrika Spykerman, and Ann P. Anas 2005

Authors and Affiliations

There are no affiliations available

Personalised recommendations