Hostname: page-component-8448b6f56d-gtxcr Total loading time: 0 Render date: 2024-04-18T18:05:03.000Z Has data issue: false hasContentIssue false
  • English
  • Français

Adjusting to Mealtime Change within the Context of Dementia

Published online by Cambridge University Press:  16 May 2012

M. Rebecca Genoe ,
Heather H. Keller ,
Lori Schindel Martin ,
Sherry L. Dupuis ,
Holly Reimer ,
Carly Cassolato  and
Gayle Edward
M. Rebecca Genoe*
Affiliation:
University of Regina
Heather H. Keller
Affiliation:
University of Waterloo
Lori Schindel Martin
Affiliation:
Ryerson University
Sherry L. Dupuis
Affiliation:
University of Waterloo
Holly Reimer
Affiliation:
University of Guelph
Carly Cassolato
Affiliation:
University of Guelph
Gayle Edward
Affiliation:
University of Guelph
*
*Correspondence and requests for offprints should be sent to / La correspondance et les demandes de tirés-à-part doivent être adressées à: M. Rebecca Genoe, Ph.D. Faculty of Kinesiology and Health Studies University of Regina 3737 Wascana Parkway Regina, SK S4S 0A2 (rebecca.genoe@uregina.ca)
Get access Rights & Permissions [Opens in a new window]

Abstract

Little is known about how persons with dementia and their care partners respond to mealtime changes that occur throughout the dementia journey. By interviewing 27 persons living with dementia and their 28 care partners, we explored the meaning and experience of change surrounding mealtimes. Participants adjusted to mealtime change by adapting to an evolving life, as a result of a dynamic process of becoming aware of change, attaching meaning to change, and responding to change. Seminal events compounded by a sense of things being different triggered awareness of mealtime changes. Meaning was attached to mealtime changes, observed through emotions experienced and diverse strategies developed to support mealtime values. Responding to change ranged from resisting, to being in a holding pattern, to transforming and adapting. Understanding how individuals and families adjust to mealtime changes, and the strategies they develop, provides critical insights for supporting families throughout the dementia journey.

Résumé

On sait peu de ce qui concerne la façon dont les personnes atteintes de démence et leurs partenaires en soins réagissent aux changements qui se produisent au moment des repas tout au long du passage à travers la démence. En interrogeant 27 personnes atteintes de démence, ainsi que leurs 28 partenaires en soins, nous avons exploré la signification et l’expérience de changements qu’impliquent les repas. Les participants se sont adaptés aux changements de repas en s’adaptant à une vie en évolution, comme résultat d’un processus dynamique de prise de conscience du changement, en attachant un sens au changement, et réagissant aux changements. Les évènements séminals, aggravés par une perception des changements, ont déclenché la sensibilisation de changements au moment des repas. On a attaché une certaine signification aux changements à l’heure des repas observés à travers des émotions éprouvées et des stratégies diverses que l’on a développées pour soutenir les valeurs associées aux repas. La réponse au changement est une question de stades, allant d’y résister, à d’être dans un circuit d’attente, à la transformation et à l’adaptation. Comprendre comment les individus et les familles s’adaptent aux changements au moment des repas, et les stratégies qu’ils qui en résultent pour en venir à bout, fournit des aperçus cruciaux pour soutenir les familles tout au long du voyage à travers la démence.

Keywords

maladie d’Alzheimerdémencethéorie fondéeheures du repasfamilleAlzheimer’s diseasedementiagrounded theorymealtimesfamily
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 31 , Issue 2 , June 2012 , pp. 173 - 194
Copyright
Copyright © Canadian Association on Gerontology 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Amella, E.J. (2002). Resistance at mealtimes for persons with dementia. Journal of Nutrition, Health and Aging, 6(2), 117–122.Google Scholar
Andersson, I., & Sidenvall, B. (2001). Case studies in food shopping, cooking and eating habits in older women with Parkinsons. Journal of Advanced Nursing, 35(1), 69–78.Google Scholar
Andrieu, S., Reynish, W., Nourhashemi, F., Ousset, P.J., Grandjean, H., Grand, A., et al. . (2001). Nutritional risk factors institutional placement in Alzheimer’s disease after one year follow-up. Journal of Nutrition Health & Aging, 5(2), 113–117.Google ScholarPubMed
Atta-Konadu, E., Keller, H.H., & Daly, K. (2011). The food related role shift experiences of spousal male care partners and their wives with dementia. Journal of Aging Studies, 25, 305–315.CrossRefGoogle Scholar
Bassett, R., & Graham, J. (2007). Memorabilities: Enduring relationships, memories, and abilities in dementia. Aging & Society, 27, 533–554.CrossRefGoogle Scholar
Beardsworth, A., & Keil, T. (1997). Sociology on the menu: An invitation to the study of food and society. New York: Routledge.Google Scholar
Beattie, A., Daker-White, G., & Gilliard, J. (2004). ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12(4), 359–368.CrossRefGoogle Scholar
Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard University Press.Google Scholar
Braun, M., Scholz, U., Bailey, B., Perren, S., Hornumg, R., & Martin, M. (2009). Dementia caregiving in spousal relationships: A dyadic perspective. Aging and Mental Health, 13(3), 426–436. doi:10.1080/13607860902879441.CrossRefGoogle ScholarPubMed
Brown, J.W., & Alligood, M.R. (2004). Realizing wrongness: Stories of older wife caregivers. Journal of Applied Gerontology, 23(2), 104–119.Google Scholar
Brown, J.W., Chen, S.-L., Mitchell, M., & Province, A. (2007). Help seeking by older husbands caring for wives with dementia. Journal of Advanced Nursing, 59(4), 352–360.Google Scholar
Burgoyne, J., & Clarke, D. (1983). You are what you eat: Food and family reconstitution. In Murcott, A. (Ed.), The sociology of food and eating (pp.152–163). Aldershot, UK: JFB Printing Ltd.Google Scholar
Calasanti, T., & Bowen, M. (2006). Spousal caregiving and crossing gender boundaries: Maintaining gendered identities. Journal of Aging Studies, 20(3), 253–263.CrossRefGoogle Scholar
Charles, N., & Kerr, M. (1988). Women, food and families. Manchester, UK: Manchester University Press.Google Scholar
Charmaz, K. (2006). Constructing ground theory: A practical guide through qualitative analysis. Thousand Oaks, CA: Sage Publications.Google Scholar
Chung, P., Ellis-Hill, C., & Coleman, P. (2008). Carers perspectives on the activity patterns of people with dementia. Dementia, 7, 359–381.CrossRefGoogle Scholar
Clare, L. (2002). We’ll fight as long as we can: Coping with the onset of Alzheimer’s disease. Aging and Mental Health, 6(2), 139–148.CrossRefGoogle Scholar
Daly, K. (2007). Qualitative methods for family studies and human development. Thousand Oaks, CA: Sage.Google Scholar
Dempsey, M., & Baago, S. (1998). Latent grief: The unique and hidden grief of carers of loved ones with dementia. American Journal of Alzheimer’s Disease, 13(2), 84–91.CrossRefGoogle Scholar
Derouesne, C., Thibault, S., Lozeron, P., Raudouin-Madec, V., Piquard, A., & Lacomblez, L. (2002). [perturbations of activities of daily living in Alzheimer’s disease study of 172 patients using a questionnaire completed by caregivers.] Revue Neurologique, 158(6–7), 684–700. Cited in Adams, K.B. (2006). The transition to caregiving: The experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47(3/4), 3–29.Google Scholar
Dupuis, S.L. (2002). Understanding ambiguous loss in the context of dementia care: Adult children’s perspectives. The Journal of Gerontological Social Work, 37(2), 93–115.CrossRefGoogle Scholar
Ekberg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., & Ortega, P. (2002). Social and psychological burden of dysphagia: Its impact on diagnosis and treatment. Dysphagia, 17, 139–146.Google Scholar
Fiese, B.H., & Marjinsky, K.A.T. (1999). Dinnertime stories: Connecting family practices with relationship beliefs and child adjustment. The Stories that Families Tell. Monographs of the Society for Research in Child Development, 64(2), 52–68.Google ScholarPubMed
Furlong, K., & Wuest, J. (2008). Self-behaviors of spouses caring for significant others with Alzheimer’s disease: The emergence of self-care worthiness as a salient condition. Qualitiative Health Research, 18(12), 1662–1672.Google Scholar
Gasson, S. (2004). Rigor in grounded theory research: An interpretive perspective on generating theory from qualitative field studies. In Whitman, M.E. & Woszczynski, A.B. (Eds.), The handbook of information systems research (pp. 79–102). Hershey, PA: Idea Group Publishing.CrossRefGoogle Scholar
Genoe, M.R. (2009). Living with hope in the midst of change: The meaning of leisure within the context of dementia (doctoral dissertation). Retrieved fromhttp://hdl.handle.net/10012/4500Google Scholar
Genoe, M.R., & Dupuis, S.L. (in press). The role of leisure within the dementia context. Dementia.Google Scholar
Genoe, R., Dupuis, S.L., Keller, H.H., Schindel Martin, L., Cassolato, C., & Edward, H.G. (2010). Honouring identity through mealtimes within the context of dementia. Journal of Aging Studies, 24, 184–193.CrossRefGoogle Scholar
Gillies, B. (2000). A memory like clockwork: Accounts of living through dementia. Aging and Mental Health, 4(4), 366–374.CrossRefGoogle Scholar
Gillies, B., & Johnston, G. (2004). Identity loss and maintenance: Commonality of experience in cancer and dementia. European Journal of Cancer Care, 13, 436–442.CrossRefGoogle ScholarPubMed
Graham, J.E., & Bassett, R. (2006). Reciprocal relations: The recognition and co-construction of caring with Alzheimer ’s disease. Journal of Aging Studies, 20, 335–349.Google Scholar
Gustaffson, K., Andersson, I., Andersson, J., Fjellström, C., & Sidenvall, B. (2003). Older women’s perceptions of independence versus dependence in food-related work. Public Health Nursing, 20(3), 237–247.CrossRefGoogle Scholar
Guyonnet, S., Nourhashemi, F., Andrieu, S., Ousset, P.J., Gray, L.K., Fitten, L.J., et al. . (1998). A prospective study of changes in the nutritional status of Alzheimer’s patients. Archives of Gerontology and Geriatrics, (Suppl 6), 255–262.CrossRefGoogle Scholar
Harman, G., & Clare, L. (2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16(4), 484–502.Google Scholar
Harris, P.B., & Durkin, C. (2002). Building resilience through adapting and coping. In Harris, P.B. (Ed.), The person with Alzheimer’s disease: Pathways to understanding the experience (pp. 165–184). Baltimore, MD: Johns Hopkins University Press.Google Scholar
Hellström, I., Nolan, M., & Lundh, U. (2005). We do things together: A case study of “couplehood” in dementia. Dementia, 4(1), 7–22.Google Scholar
Hellström, I., Nolan, M., & Lundh, U. (2007). Sustaining ‘couplehood’: Spouses’ strategies for living positively with dementia. Dementia, 6, 383–407.CrossRefGoogle Scholar
Kayser-Jones, J. (1997). Inadequate staffing at mealtimes. Journal of Gerontological Nursing, 23(8), 14–21.Google Scholar
Keady, J., & Gilliard, J. (1999). The early experience of Alzheimer’s disease: Implications for partnership and practice. In Adams, T. & Clarke, C. (Eds.), Dementia care: Developing partnerships in practice (pp. 227–256), London: Balliere Tindall.Google Scholar
Kellaher, L. (2000). A choice well made: ‘Mutuality’ as a governing principle in residential care. London: Centre for Policy on Ageing.Google Scholar
Keller, H.H., Edward, H.G., & Cook, C. (2006). Mealtime experiences of families with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 21(6), 431–438.CrossRefGoogle ScholarPubMed
Keller, H., Schindel Martin, L., Dupuis, S., Genoe, R., Edward, G., & Casolatto, C. (2010). Mealtimes and being connected in the community-based dementia context. Dementia, 9(2), 191–213.Google Scholar
Larson, R.W., Branscomb, K.R., & Wiley, A.R. (2006). Forms and functions of family mealtimes: Multidisciplinary perspectives. New Directions for Child and Adolescent Development, 111, 1–15.CrossRefGoogle Scholar
MAREP. (2006). Memory work out: A “By us for us” Guide [Brochure]. Waterloo, Ontario, Canada: MAREP.Google Scholar
MAREP. (2007a). Managing triggers: A “By us for us” Guide [Brochure]. Waterloo, Ontario, Canada: MAREP.Google Scholar
MAREP. (2007b). Enhancing communication: A “By us for us” Guide [Brochure]. Waterloo, Ontario, Canada: MAREP.Google Scholar
MAREP. (2008). Tips and strategies: A “By us for us” Guide. [Brochure]. Waterloo, Ontario, Canada: MAREP.Google Scholar
MAREP. (2009). By Us For Us Guide: Living and Transforming with Grief and Loss. Waterloo, Ontario, Canada: MAREP.Google Scholar
Menne, H., Kinney, J., & Morhardt, D. (2002). ‘Trying to do as much as they can do’: Theoretical insights regarding continuity and meaning making in the face of dementia. Dementia, 1(3), 367–382.Google Scholar
Mitchell, G., Jonas-Simpson, C., & Dupuis, S. (2006). I’m still here: A teaching and learning guide to understanding living with dementia through the medium of the arts. Waterloo, Ontario, Canada: MAREP.Google Scholar
Netto, N., Goh, J., & Yap, P. (2009). Growing and gaining through caring for a loved one with dementia. Dementia, 8(2), 245–261.CrossRefGoogle Scholar
Noonan, A., Tennstedt, S., & Rebelsky, F. (1996). Making the best of it: Themes of meaning among informal caregivers to the elderly. Journal of Aging Studies, 10, 313–327.Google Scholar
Ochs, E., & Shohet, M. (2006). The cultural structuring of mealtime socialization. New Direction for child and Adolescent Development, 111, 35–49.CrossRefGoogle Scholar
O’Connor, D., Phinney, A., Smith, A., Small, A., Purves, B., Perry, J., et al. . (2007). Personhood in dementia care: Developing a research agenda for broadening the vision. Dementia, 6(1), 121–143. doi: 10.1177/1471301207075648.Google Scholar
Parsons-Suhl, K., Johnson, M., McCann, J., & Solbert, S. (2008). Losing one’s memory in early Alzheimer’s disease. Qualitative Health Research, 18(1), 31–42.CrossRefGoogle ScholarPubMed
Patterson, J.M. (1988). Chronic illness in children and the impact on families. In Chilman, C.S., Nunnally, E.W., & Cox, F.M. (Eds.), Chronic illness and disability (pp. 69–107). Newbury Park, CA: Sage.Google Scholar
Pearce, A., Clare, L., & Pistrang, N. (2002). Managing sense of self: Coping with the early stages of Alzheimer’s disease. Dementia, 1, 173–192.Google Scholar
Phinney, A. (1998). Living with dementia from the patient’s perspective. Journal of Gerontological Nursing, 24(6), 8–15.Google Scholar
Phinney, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia. Journal of Family Nursing, 12(1), 80–101. doi:10.1177/1074840705285382Google Scholar
Phinney, A., Chaudhury, H., & O’Connor, D. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging and Mental Health, 11(4), 384–393.CrossRefGoogle Scholar
Preston, L., Marshall, A., & Bucks, R. (2007). Investigating the ways that older people cope with dementia: A qualitative study. Aging and Mental Health, 11(2), 131–143.CrossRefGoogle ScholarPubMed
Rivière, S., Gillette-Guyonnet, S., Andrieu, S., Nourhashemi, F., Lauque, S., Cantet, C., et al. . (2002). Cognitive function and caregiver burden: Predictive factors for eating behaviour disorders in Alzheimer’s disease. International Journal of Geriatric Psychiatry, 17(10), 950–955.CrossRefGoogle ScholarPubMed
Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24, 653–659.Google Scholar
Russell, R. (2007). Men doing “women’s work”: Elderly men caregivers and the gendered construction of care work. The Journal of Men’s Studies, 15(1), 1.CrossRefGoogle Scholar
Seymour, D. (1983). The social functions of the meal. International Journal of Hospitality Management, 2(1), 3–7.Google Scholar
Sidenvall, B., Nydahl, M., & Fjellstrom, C. (2000). The meal as a gift – The meaning of cooking among retired women. Journal of Applied Gerontology, 19(4), 405–423.CrossRefGoogle Scholar
Silva-Smith, A. (2007). Restructuring life: Preparing for and beginning a new caregiving role. Journal of Family Nursing, 13(1), 99–116.CrossRefGoogle ScholarPubMed
Snyder, L. (2001). The lived experience of Alzheimer’s: Understanding the feelings and subjective accounts of persons with the disease. Alzheimer’s Care Quarterly, 2(2), 8–22.Google Scholar
Sorensen, L., Waldorff, F., & Waldemar, G. (2008). Coping with mild Alzheimer’s disease. Dementia, 7(3), 287–299.Google Scholar
Stamm, T., Lovelock, L., Nell, V., Smolen, J., Sadlo, G., & Machold, K. (2008). I have mastered the challenge of living with a chronic disease: Life stories of people living with rheumatoid arthritis. Qualitative Health Research, 18(5), 658–669.Google Scholar
Steeman, E., Godderis, J., Grypdonck, M., de Bal, N., & de Casterlè, B. (2007). Living with dementia from the perspective of older people: Is it a positive story? Aging and Mental Health, 11(2), 119–130.Google Scholar
Tarlow, B.J., Wisniewski, S.R., Belle, S.H., Rubert, M., Ory, M.G., & Gallagher-Thompson, D. (2004). Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26(4), 429–453. doi:10.1177/0164027504264493.Google Scholar
Truscott, M. (2003). Life in the slow lane. Alzheimer’s Care Quarterly, 4(1), 11–17.Google Scholar
Valentine, G. (1999). Eating in: Home, consumption and identity. The Sociological Review, 47(3), 491–524.CrossRefGoogle Scholar
Van Dijkhuizen, M., Clare, L., & Pearce, A. (2006). Striving for connection: Appraisal and coping among women with early-stage Alzheimer’s disease. Dementia, 5(1), 73–94.CrossRefGoogle Scholar
Vikström, S., Josephsson, S., Stigstodder-Neely, A., & Nygård, L. (2008). Engagement in activities: Experiences of persons with dementia and their spouses. Dementia, 7(2), 251–270.Google Scholar