Abstract
To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers’ views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.
Key words: Caregivers, aged, dementia, spouse, decision making, decision support technique
Résumé
Les initiatives visant à améliorer les soins aux personnes âgées atteintes de démence ciblent généralement une meilleure identification et un meilleur traitement du patient. Notre sondage montre toutefois que nous devrions nous concentrer davantage sur les besoins des aidants naturels qui s’occupent de cette population en première ligne. Ce sondage Delphi en trois rondes a permis de recueillir les opinions des soignants sur les décisions les plus fréquentes et les plus difficiles auxquelles sont confrontés les aînés atteints de démence, leurs aidants naturels et les professionnels de la santé et des services sociaux œuvrant en première ligne au Québec. Les répondants comprenaient 31 professionnels de la santé et des services sociaux, des aidants naturels, des gestionnaires, des représentants d’organismes communautaires dédiés à ces aînés et des chercheurs-cliniciens impliqués dans l’organisation de soins ou de services aux personnes âgées atteintes de démence. Nous avons demandé aux répondants de classer 27 décisions fréquentes, et difficiles en raison des avantages et des inconvénients qu’elles comportent. La majorité (83 %) a priorisé la décision de choisir une option pour réduire le fardeau des aidants naturels parmi les cinq décisions les plus importantes. Le choix d’un traitement pour gérer l’agitation, l’agressivité ou les symptômes psychotiques a suivi de près, avec 79 % des répondants l’ayant choisi comme l’une des cinq décisions les plus importantes. Nos résultats soulignent l’importance de répondre aux besoins des aidants naturels et d’améliorer la gestion des symptômes comportementaux et psychologiques de la démence.
Mots clés: proches aidant, vieillissement, démence, troubles cognitifs, prise de décision, outils d’aide à la décision
Footnotes
Acknowledgements: This work was supported by the Ministre de l’Économie, de l’Innovation et des Exportations du Québec, SOVAR, Laval University’s Department of Family Medicine and Emergency Medicine, and by the Research Chair in Aging at Laval University. We wish to acknowledge the significant contribution made by the experts in this study, as well as the support provided by the Collaboration and Patient Partnership Unit of the University of Montreal in identifying informal caregiver representatives. We also wish to thank Selma Chipenda Dansoko and Katherine Hastings for their writing assistance.
Conflict of Interest: None to declare.
References
- 1.Prince M, Wimo A, Guerchet M, Ali G-C, Wu Y-T, Prina M. World Alzheimer Report 2015. The Global Impact of Dementia. An Analysis of Prevalence, Incidence, Cost & Trends. London, UK: Alzheimer’s Disease International; 2015. [Google Scholar]
- 2.Dudgeon S. Rising Tide: The Impact of Dementia on Canadian Society: A Study. Toronto, ON: Alzheimer Society of Canada; 2010. [Google Scholar]
- 3.Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM. Unmet needs of communityHresiding persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. J Am GeriatrSoc. 2013;61(12):2087–95. doi: 10.1111/jgs.12549. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: A review of patient and family carer involvement. Dementia (London) 2016;15(5):1141–57. doi: 10.1177/1471301214555542. [DOI] [PubMed] [Google Scholar]
- 5.McCurry SM, Logsdon RG, Teri L, Vitiello MV. Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications. Sleep Med Rev. 2007;11(2):143–53. doi: 10.1016/j.smrv.2006.09.002. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. J Soc Work Educ. 2008;44(Suppl3):105–13. doi: 10.5175/JSWE.2008.773247702. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: A meta-analysis. J Gerontol Ser B. 2007;62(2):P126–37. doi: 10.1093/geronb/62.2.P126. [DOI] [PubMed] [Google Scholar]
- 8.Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychol Aging. 2003;18(2):250–67. doi: 10.1037/0882-7974.18.2.250. [DOI] [PubMed] [Google Scholar]
- 9.Menne HL, Tucke SS, Whitlatch CJ, Feinberg LF. Decision-making involvement scale for individuals with dementia and family caregivers. Am J Alzheimers Dis OtherDemen. 2008;23(1):23–29. doi: 10.1177/1533317507308312. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Morlett Paredes A, Perrin PB, Peralta SV, Stolfi ME, Morelli E, Arango-Lasprilla JC. Structural equation model linking dementia cognitive functioning, caregiver mental health, burden, and quality of informal care in Argentina. Dementia (London) 2015;16(6):766–79. doi: 10.1177/1471301215617080. [DOI] [PubMed] [Google Scholar]
- 11.Lethin C, Renom-Guiteras A, Zwakhalen S, Soto-Martin M, Saks K, Zabalegui A, et al. Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging Ment Health. 2016;21(11):1138–46. doi: 10.1080/13607863.2016.1211621. [DOI] [PubMed] [Google Scholar]
- 12.World Health Organization. Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organization; 2012. [Google Scholar]
- 13.Amieva H, Rullier L, Bouisson J, Dartigues JF, Dubois O, Salamon R. [Needs and expectations of Alzheimer’s disease family caregivers] Rev Epidemiol Sante Publique. 2012;60(3):231–38. doi: 10.1016/j.respe.2011.12.136. [DOI] [PubMed] [Google Scholar]
- 14.Jensen CJ, Inker J. Strengthening the dementia care triad: Identifying knowledge gaps and linking to resources. Am J Alzheimers Dis Other Demen. 2015;30(3):268–75. doi: 10.1177/1533317514545476. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Chenoweth L, King MT, Jeon YH, Brodaty H, Stein-Parbury J, Norman R, et al. Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial. Lancet Neurol. 2009;8(4):317–25. doi: 10.1016/S1474-4422(09)70045-6. [DOI] [PubMed] [Google Scholar]
- 16.Edvardsson D, Winblad B, Sandman PO. Person-centred care of people with severe Alzheimer’s disease: Current status and ways forward. Lancet Neurol. 2008;7(4):362–67. doi: 10.1016/S1474-4422(08)70063-2. [DOI] [PubMed] [Google Scholar]
- 17.Mariani E, Vernooij-Dassen M, Koopmans R, Engels Y, Chattat R. Shared decision-making in dementia care planning: Barriers and facilitators in two European countries. Aging Ment Health. 2017;21(1):31–39. doi: 10.1080/13607863.2016.1255715. [DOI] [PubMed] [Google Scholar]
- 18.Blanco-Silvente L, Castells X, Saez M, Barceló MA, Garre-Olmo J, Vilalta-Franch J, et al. Discontinuation, efficacy, and safety of cholinesterase inhibitors for Alzheimer’s disease: A meta-analysis and meta-regression of 43 randomized clinical trials enrolling 16 106 patients. Int J Neuropsychopharmacol. 2017;20(7):519–28. doi: 10.1093/ijnp/pyx012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.McCabe M, You E, Tatangelo G. Hearing their voice: A systematic review of dementia family caregivers’ needs. Gerontologist. 2016;56(5):e70–88. doi: 10.1093/geront/gnw078. [DOI] [PubMed] [Google Scholar]
- 20.van der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, van Hout HP, et al. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. Int Psychogeriatr. 2009;21(5):949–65. doi: 10.1017/S1041610209990147. [DOI] [PubMed] [Google Scholar]