StoryCorps’ Memory Loss Initiative: Enhancing personhood for storytellers with memory loss

Abstract

StoryCorps’ Memory Loss Initiative was designed to gather oral histories of people with memory loss. This study investigated the StoryCorps interview experience for storytellers who self identify with early stage memory loss and the persons who interviewed them. StoryCorps interviews took place in Milwaukee, Chicago, and New York. Follow-up interviews were conducted with 42 persons with memory loss, along with 27 family members who participated in the StoryCorps interviews. Results revealed that the StoryCorps experience was a meaningful activity that allowed participants to acknowledge the beauty of the present moment, to reflect and engage in meaningful conversations, to re-affirm both the selfhood of individuals with memory loss and their relationships with family members, and to and be a part of national history while leaving a legacy for future generations within families. The findings are discussed within the context of personhood enhancing strategies for persons with memory loss.

Keywords

communication family relationships memory loss oral history personhood

Get full access to this article

View all access options for this article.

References

Christiansen, C.H. ( 1999). Defining lives: Occupation as identity: An essay on competence, coherence, and the creation of meaning. American Journal of Occupational Therapy, 53, 547-558.

Elder, G.H. Jr. , & Kirkpatrick Johnson, M. (2002). The life course and aging: Challenges, lessons, and new directions. In R. A. J. Settersten (Ed.), Invitation to the life course: Toward new understandings of later life, Part II (pp. 49-81). Amityville, NY: Baywood.

Harris, P.B. , & Keady, J. ( 2006). Editorial. Dementia: The International Journal of Social Research and Practice, 5(1), 5-9.

Hellström, I. , Nolan, M. , & Lundh, U. ( 2005). ‘We do things better together’: A case study of ‘couplehood’ in dementia. Dementia: The International Journal of Social Research and Practice, 4(1), 7-22.

Kensinger, E.A. , Anderson, A. , Growdon, J.H. , & Corkin, S. ( 2004). Effects of Alzheimer disease on memory for verbal emotional information. Neuropsychologia, 42, 791-800.

Kitwood, T. ( 1997). Dementia reconsidered: the person comes first. Berkshire, UK: Open University Press.

MacRae, H. ( 2008). Making the best you can of it: Living with early-stage Alzheimer’s disease. Sociology of Health & Illness , 30(3), 396-412.

O’Connor, D. , Phinney, A. , Smith, A. , Small, J. , Purves, B. , Perry, J. , et al. (2007). Personhood in dementia care: Developing a research agenda for broadening the vision. Dementia, 6(1), 121-142.

Orange, J.B. , Ryan, E.B. , Meredith, S.D. , & MacLean, M.J. ( 1995). Application of the Communication Enhancement Model for longterm care residents with Alzheimer’s Disease. Topics in Language Disorders, 15(2), 20-35.

10.

Orange, J.B. , Van Gennep, K. , Miler, L. , & Johnson, A. ( 1998). Resolution of communication breakdown in dementia of the Alzheimer’s type: A longitudinal study. Journal of Applied Communication Research, 26(1), 120-138.

11.

Perry, J. , & O’ Connor, D. (2002). Preserving personhood: (Re)membering the spouse with dementia. Family Relations, 51(1), 55-62.

12.

Phinney, A. , Chaudhury, H. , & O’ Connor, D.L. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging & Mental Health, 11(4), 384-393.

13.

Ryan, E.B. , Meredith, S.D. , MacLean, M.J. , & Orange, J.B. ( 1995). Changing the way we talk with elders: Promoting health using the communication enhancement model. International Journal of Aging and Human Development, 41, 89-107.

14.

Sabat, S.R. ( 1998). Voices of Alzheimer’s disease sufferers: A call for treatment based on personhood. The Journal of Clinical Ethics, 9(1), 38-51.

15.

Savundranayagam, M.Y. , Ryan, E.B. , Anas, A.P. , & Orange, J.B. ( 2007). Communication and dementia: Staff perceptions of conversational strategies. Clinical Gerontologist, 31(2), 47-63.

16.

Shenk, D. ( 2005). There was an old woman: Maintenance of identity by people with Alzheimer’s dementia. In B. Davis (ed.), Alzheimer talk, text and context: enhancing communication. New York: Palgrave-MacMillan . pp. 3-17.

17.

Small, J.A. , Gutman, G. , Makela, S. , & Hillhouse, B. ( 2003). Effectiveness of communication strategies used by caregivers of persons with Alzheimer’s disease during activities of daily living . Journal of Speech, Language, and Hearing Research, 46(2), 353-367.

18.

Small, J.A. , & Perry, J. ( 2005). Do you remember? How caregivers question their spouses who have Alzheimer’s disease and the impact on communication. Journal of Speech, Language, and Hearing Research, 48(1), 125-136.

19.

Strauss, A.L. , & Corbin, J. ( 1990). Basics of qualitative research. Newbury Park, CA: Sage.

20.

Tappen, R.M. , Williams-Burgess, C. , Edelstein, J. , Touhy, T. , & Fishman, S. ( 1997). Communicating with individuals with Alzheimer’s disease: Examination of recommended strategies. Archives of Psychiatric Nursing, 11(5), 249-256.