Résumés
Résumé
Cet article présente la première phase d’une recherche-action visant à soutenir les personnes conjointes aidantes dans le maintien de leur affectivité et de leur réciprocité avec leur partenaire atteint.e de la maladie d’Alzheimer par la conception d’une trousse d’activités sensorielles. L’objectif était double : identifier les besoins d’expression affective et de réciprocité des personnes conjointes aidantes et mieux comprendre l’histoire sensorielle de ces couples à travers leurs grandes réalisations. Par des entrevues individuelles, 15 personnes conjointes aidantes ont été interrogées. Les résultats montrent les défis du maintien de l’affectivité et de la réciprocité et détaillent les sens stimulés dans les réalisations identifiées.
Mots-clés :
- expression affective,
- réciprocité,
- maladie d’Alzheimer,
- proche aidant,
- conjoint,
- relation amoureuse
Abstract
This article presents the first phase of an action-research project aimed at supporting caregiving spouses in maintaining their affectivity and reciprocity with their partner suffering from Alzheimer's disease, through the design of a sensory activity kit. The aim was twofold: to identify the needs of caregivers for affective expression and reciprocity, and to better understand the sensory history of these couples through their major achievements. Through individual interviews, 15 caregiving spouses were interviewed. The results show the challenges of maintaining affectivity and reciprocity, and detail the senses stimulated in the achievements identified.
Keywords:
- affectivity,
- reciprocity,
- Alzheimer’s disease,
- caregiver,
- spouse,
- romantic relationship
Parties annexes
Bibliographie
- Ablitt, A., Jones, G. V., & Muers, J. (2009). Living with dementia: A systematic review of the influence of relationship factors. Aging & Mental Health, 13(4), 497−511. https://doi.org/10.1080/13607860902774436
- Achterberg, I., Kok, W., & Salentijn, C. (1997). ‘Snoezelen’: A new way of communicating with the severely demented elderly. Dans B. Meisen & G. Jones (Dirs.), Care-giving in dementia: Research and applications (1ere éd., vol. 2, p. 119–126). Routledge.
- Alzheimer’s Association Report. (2020). 2020 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 16(3), 391−460. https://doi.org/10.1002/alz.12068
- Appui. (2022, 27 septembre). Avec les pères proches aidants, les choses se passent beaucoup dans l’informel... https://www.lappui.org/fr/actualite/avec‑les‑peres‑proches-aidants-les-choses-se-passent-beaucoup-dans-linformel/
- Belleau, H., Lavallée, C., & Seery, A. (2017). Unions et désunions conjugales au Québec : rapport de recherche. Première partie: le couple, l’argent et le droit. INRS. https://espace.inrs.ca/id/eprint/5763/1/belleau-2017-unionsA.pdf
- Bielsten, T., & Hellström, I. (2019). A review of couple-centred interventions in dementia: Exploring the what and why – Part A. Dementia, 18(7−8), 24362449. https://doi.org/10.1177/1471301217737652
- Blanchet, S., McCormick, L., Belleville, S., Gély-Nargeot, M. C., & Joanette, Y. (2002). Les troubles cognitifs légers de la personne âgée: revue critique. Rev Neurol (Paris), 158(1), 29-39.
- Bramboeck, V., Moeller, K., Marksteiner, J., & Kaufmann, L. (2020). Loneliness and Burden Perceived by Family Caregivers of Patients with Alzheimer Disease. American Journal of Alzheimer’s Disease & Other Dementias, 35, 1−8. https://doi.org/10.1177/1533317520917788
- Carruth, A. K., Holland, C., & Larsen, L. (2000). Development and psychometric evaluation of the caregiver reciprocity scale II. Journal of Nursing Measurement, 8(2), 179−191.
- Cotelli, M., Manenti, R., & Zanetti, O. (2012). Reminiscence therapy in dementia: A review. Maturitas, 72(3), 203−205. https://doi.org/10.1016/j.maturitas.2012.04.008
- Couture, N. (2019). L’intervention psychosociale en art-thérapie : un outil de médiation du lien conjugal en contexte de maladie d’Alzheimer [thèse de doctorat]. Université Laval, Qc.
- Couture, N., Villeneuve, P., & Éthier, S. (2021). Five functions of art therapy supporting couples affected by Alzheimer’s disease. Art Therapy, 38(2), 69−77. https://doi.org/10.1080/07421656.2020.1726707
- Daley, R. T., O'Connor, M. K., Shirk, S. D., & Beard, R. L. (2017). ‘In this together’ or ‘Going it alone’: Spousal dyad approaches to Alzheimer's. Journal of Aging Studies, 40, 57−63. https://doi.org/10.1016/j.jaging.2017.01.003
- Dow, B., & Malta, S. (2017). People with Alzheimer’s disease and their spouse-caregivers: differences in perceptions of sexual satisfaction? International Psychogeniatrics, 29(2), 181−183. https://doi.org/10.1017/S1041610216002301
- Duffy, L. M. (1995) Sexual behavior and marital intimacy in Alzheimer's couples: a family theory perspective. Sexuality & Disability, 13(3), 239254. https://doi.org/10.1007/BF02590070
- Goldsen, K. F. (2018). Shifting social context in the lives of LGBTQ older adult. The Public Policy and Aging Report, 28(1), 24−28. https://doi.org/10.1093/ppar/pry003
- Habra, O., Heintze, A., De La Harpe, R., Neftel, C., & Sahiti, S. (2013). Maladie d’Alzheimer : le conjoint au centre de la prise en charge. https://www.unisante.ch/sites/default/files/upload/imco/dumsc-imco2012-abstract-g17.pdf
- Harris, S. M., Adams, M. S., Zubatsky, M., & White, M. (2011). A caregiver perspective of how Alzheimer's disease and related disorders affect couple intimacy. Aging & Mental Health, 15(8), 950−960. https://doi.org/10.1080/13607863.2011.583629
- Institut national de santé publique du Québec. (2022). Population âgée de 65 ans et plus, la situation au Québec. https://www.inspq.qc.ca/santescope/syntheses/population-agee-65-ans-plus
- Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, working separately, or working alone. Dans M. R. Nolan, U. Lundh, G. Grant, & J. Keady (Dirs.), Partnerships in family care: Understanding the caregiving career (p. 15−32). Open University Press.
- Kwok, H., To, Y., & Sung, H. (2003). The application of a multisensory Snoezelen room for people with learning disabilities − Hong Kong experience. Hong Kong Medical Journal, 9, 122−126.
- Labarre, K. (2017, août 16-17). Les symptomes comportementaux et psychologiques de la démence (SCPD) : faire la difference par l’approche [Communication orale]. Université de Moncton. https://www.umoncton.ca/umcs‑epv/files/umcs‑epv/wf/wf/pdf/karine_labarre_scpd_prof_faire_la_difference_par_lapproche.pdf
- La Société Alzheimer de Québec. (2021, 21 décembre). La maladie d’Alzheimer en chiffres. https://societealzheimerdequebec.com/statistiques
- Lorusso, L. N., & Bosch, S. J. (2018). Impact of multisensory environments on behavior for people with dementia: A systematic literature review. Gerontologist, 58(3), e168−e179. https://doi.org/10.1093/geront/gnw168
- Martin, P., & Adrien, J-L. (2005). Une revue de la recherche clinique internationale sur l’approche Snoezelen en santé mentale. Revue francophone de la déficience intellectuelle, 16(1), 97−109. https://rfdi.org/index.php/1/article/view/200
- Miller, L. M., Kaye, J. A., Lyons, K. S., Lee, C. S., Whitlatch, C. J., & Caserta, M. S. (2019). Well-being in dementia: A cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners. International Psychogeriatrics, 31(5), 617−626. https://doi.org/10.1017/S104161021800203X
- Molyneaux, V., Butchard, S., Simpson, J., & Murray, C. (2012). The co-construction of couplehood in dementia. Dementia, 11(4), 483−520. https://doi.org/10.1177/1471301211421070
- Murray, J., Schneider, J., Bannerjee, S., & Mann, A. (1999). Eurocare: A cross-national study of co-resident spouse carers for people with alzheimer’s disease: II − A qualitative analysis of the experience of caregiving. International Journal of Geriatric Psychiatry, 14(8), 662−667. https://doi.org/10.1002/(sici)1099‑1166(199908)14:8<662::aid-gps993>3.0.co;2-4
- Nogueira, M. M. L., Neto, J. P. S., Sousa, M. F. B., Santos, R. L., Lacerda, I. B., Baptista, M. A. T., & Dourado, M. C. N. (2017). Perception of change in sexual activity in Alzheimer's disease: Views of people with dementia and their spouse-caregivers. International Psychogeriatrics, 29(2), 185193. https://doi.org/10.1017/S1041610216001642
- Padilla, R. (2011). Effectiveness of environment-based interventions for people with Alzheimer’s disease and related dementias. The American Journal of Occupational Therapy, 65(5), 514−522. https://doi.org/10.5014/ajot.2011.002600
- Paillé, P., & Mucchielli, A. (2021). L'analyse qualitative en sciences humaines et sociales (5e éd). Armand Colin.
- Powell, G. N., Greenhaus, J. H., Allen, T. D., & Johnson, R. E. (2019). Advancing and expanding work-life theory from multiple perspectives. Academy of Management Review, 44(1), 54−71. https://doi.org/10.5465/amr.2018.0310
- Quentin, O., Godderidge, B., & d’Arfeuille, P. (2016). Snoezelen : un monde de sens ( 2e éd.). Pétrarque.
- Salman, S. (2017). Snoezelen, une thérapie par les sens. Pétrarque
- Spanier, G. (1976). Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. Journal of Marriage and Family, 38(1), 15−28. https://doi.org/10.2307/350547
- Société d’Alzheimer. (2024). Qu’est-ce que la maladie d’Alzheimer? https://alzheimer.ca/fr/au-sujet-des-troubles-neurocognitifs/quest-ce-que-la-maladie-dalzheimer
- Thomas, P., & Hazif-Thomas, C. (2020). Sexuality in older adults: Clinical and psychosocial dilemmas. Journal of Geriatry and Mental Health, 3(2), 131−139. https://doi.org/10.1016/j.sger.2020.06.003
- Van’T Leven, N., Prick, A., Groenewoud, J., Roelofs, P., de Lange, J., & Pot, A. (2013). Dyadic interventions for community-dwelling people with dementia and their family caregivers: A systematic review. International Psychogeriatrics, 25(10), 1581−1603. https://doi.org/10.1017/S1041610213000860
- Ward, P. J., Lundberg, N. R., Zabriskie, R. B., & Berrett, K. (2009). Measuring marital satisfaction: A comparison of the revised dyadic adjustment scale and the satisfaction with married life scale. Marriage & Family Review, 45(4), 412−429. https://doi.org/10.1080/01494920902828219
- Williams, C. L., Newman, D., & Hammar, L. M. (2018). Preliminary study of a communication intervention for family caregivers and spouses with dementia. International Journal of Geriatric Psychiatry, 33(2), e343–e349. https://doi.org/10.1002/gps.4816
- Woods, B., O'Philbin, L., Farrell, E. M., Spector, A. E., & Orrell, M. (2018). Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, 1(3), Article CD001120. https://doi.org/10.1002/14651858.CD001120.pub3
- Woodward, M. (2013). Aspects of communication in Alzheimer's disease: Clinical features and treatment options. International Psychogeriatrics, 25(6), 877−885. https://doi.org/10.1017/S1041610213000318
- Wright, K. L. (1998). Affection and sexuality in the presence of Alzheimer’s disease: A longitudinal study. Sexuality and Disability, 16(3), 167−179. https://doi.org/10.1023/A:1023042924997