Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: secondary analysis of a cluster randomized trial

Alexandrine Boucher, Julie Haesebaert, Adriana Freitas, Rhéda Adekpedjou, Marjolaine Landry, Henriette Bourassa, Dawn Stacey, Jordie Croteau, Painchaud-Guérard Geneviève, France Légaré, Alexandrine Boucher, Julie Haesebaert, Adriana Freitas, Rhéda Adekpedjou, Marjolaine Landry, Henriette Bourassa, Dawn Stacey, Jordie Croteau, Painchaud-Guérard Geneviève, France Légaré

Abstract

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person.

Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling.

Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden).

Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care.

Trial registration: NCT02244359 . Date of registration: September 18, 2014.

Keywords: Burden of care; Caregiver; Cognitively impaired older persons; Housing decisions; Secondary analysis; Shared decision making.

Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. United Nations . World Population Prospects. Key Findings and Advanced Tables. The 2017 Revision. New York: ESA/P/WP. 248; 2017.
    1. Abramsson M, Andersson EK. Residential mobility patterns of elderly—leaving the house for an apartment. Hous Stud. 2012;27(5):582–604. doi: 10.1080/02673037.2012.697553.
    1. Jungers CM. Leaving home: an examination of late-life relocation among older adults. J Couns Dev. 2010;88(4):416–423. doi: 10.1002/j.1556-6678.2010.tb00041.x.
    1. Lofqvist C, Granbom M, Himmelsbach I, Iwarsson S, Oswald F, Haak M. Voices on relocation and aging in place in very old age–a complex and ambivalent matter. Gerontologist. 2013;53(6):919–927. doi: 10.1093/geront/gnt034.
    1. Oswald F, Wahl H-W. Creating and sustaining homelike places in residential environments. In G D Rowles & M Bernard (Eds.) Environmental gerontology: Making meaningful places in old age. New York: Springer Publishing. 2013:53–77.
    1. Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62(3):340–350. doi: 10.1111/inr.12194.
    1. Yin T, Zhou Q, Bashford C. Burden on family members: caring for frail elderly: a meta-analysis of interventions. Nurs Res. 2002;51(3):199–208. doi: 10.1097/00006199-200205000-00009.
    1. Wackerbarth S. Modeling a dynamic decision process: supporting the decisions of caregivers of family members with dementia. Qual Health Res. 1999;9(3):294–314. doi: 10.1177/104973299129121875.
    1. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–346. doi: 10.7326/0003-4819-154-5-201103010-00008.
    1. Zarit S, Orr NK, Zarit JM. The hidden victims of Alzheimer's disease: families under stress: NYU press. 1985.
    1. Ducharme F, Couture M, Lamontagne J. Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Serv Q. 2012;31(3):197–218. doi: 10.1080/01621424.2012.681572.
    1. Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: a review of patient and family carer involvement. Dementia. 2016;15(5):1141–1157. doi: 10.1177/1471301214555542.
    1. Caron CD, Ducharme F, Griffith J. Deciding on institutionalization for a relative with dementia: the Most difficult decision for caregivers. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2006;25(02):193. doi: 10.1353/cja.2006.0033.
    1. Lord K, Livingston G, Cooper C. A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. Int Psychogeriatr. 2015;27(8):1301–1312. doi: 10.1017/S1041610215000411.
    1. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–1060. doi: 10.1001/jama.2014.304.
    1. Wittenberg E, Prosser LA. Health as a family affair. N Engl J Med. 2016;374(19):1804–1806. doi: 10.1056/NEJMp1604456.
    1. Sansoni J, Anderson KH, Varona L, Varela G. Caregivers of Alzheimer’s patients and factors influencing institutionalization of loved ones: some considerations on existing literature. Ann Ig. 2013;25(3):235–246.
    1. Stall NM, Kim SJ, Hardacre KA, Shah PS, Straus SE, Bronskill SE, et al. Association of Informal Caregiver Distress with health outcomes of community-dwelling dementia care recipients: a systematic review. J Am Geriatr Soc. 2018:67(3):609-617.
    1. Garvelink MM, Ngangue PA, Adekpedjou R, Diouf NT, Goh L, Blair L, et al. A synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones. Health Aff. 2016;35(4):619–626. doi: 10.1377/hlthaff.2015.1375.
    1. Pallett PJ. A conceptual framework for studying family caregiver burden in Alzheimer's-type dementia. Image J Nurs Sch. 1990;22(1):52–58. doi: 10.1111/j.1547-5069.1990.tb00169.x.
    1. Butcher HK, Holkup PA, Park M, Maas M. Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Res Nurs Health. 2001;24(6):470–480. doi: 10.1002/nur.10005.
    1. Légaré F, Brière N, Stacey D, Bourassa H, Desroches S, Dumont S, et al. Improving decision making on location of care with the frail elderly and their caregivers (the DOLCE study): study protocol for a cluster randomized controlled trial. Trials. 2015;16(1):50. doi: 10.1186/s13063-015-0567-7.
    1. Garvelink MM, Emond J, Menear M, Briere N, Freitas A, Boland L, et al. Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design. Res Involv Engagem. 2016;2:26. doi: 10.1186/s40900-016-0040-0.
    1. Garvelink MM, Freitas A, Menear M, Brière N, Stacey D, Légaré F. In for a penny, in for a pound: the effect of pre-engaging healthcare organizations on their subsequent participation in trials. BMC Res Notes. 2015;8(1):751. doi: 10.1186/s13104-015-1743-2.
    1. Adekpedjou R, Stacey D, Briere N, Freitas A, Garvelink MM, Turcotte S, et al. “Please listen to me”: A cross-sectional study of experiences of seniors and their caregivers making housing decisions. PLoS One. 2018;13(8):e0202975. doi: 10.1371/journal.pone.0202975.
    1. Hébert R, Bravo G, Girouard D. Fidélité de la traduction française de trois instruments d'évaluation des aidants naturels de malades déments. Canadian Journal on Aging/La revue canadienne du vieillissement. 1993;12(03):324–337. doi: 10.1017/S0714980800013726.
    1. Hébert R, Leclerc G, Bravo G, Girouard D, Lefrançois R. Efficacy of a support group programme for care-givers of demented patients in the community: a randomized controlled trial. Arch Gerontol Geriatr. 1994;18(1):1–14. doi: 10.1016/0167-4943(94)90043-4.
    1. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655. doi: 10.1093/geront/20.6.649.
    1. Seng B, Luo N, Ng W, Lim J, Chionh HL, Goh J, et al. Validity and reliability of the Zarit burden interview in assessing caregiving burden. Ann Acad Med Singap. 2010;39(10):758–763.
    1. Brehaut JC, O'Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, et al. Validation of a decision regret scale. Med Decis Mak. 2003;23(4):281–292. doi: 10.1177/0272989X03256005.
    1. Becerra Perez MM, Menear M, Brehaut JC, Legare F. Extent and predictors of decision regret about health care decisions: a systematic review. Med Decis Mak. 2016;36(6):777–790. doi: 10.1177/0272989X16636113.
    1. O'Connor AM. Validation of a decisional conflict scale. Med Decis Mak. 1995;15(1):25–30. doi: 10.1177/0272989X9501500105.
    1. Ferron Parayre A, Labrecque M, Rousseau M, Turcotte S, Legare F. Validation of SURE, a four-item clinical checklist for detecting decisional conflict in patients. Med Decis Mak. 2014;34(1):54–62. doi: 10.1177/0272989X13491463.
    1. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA. 1984;252(21):2990–2994. doi: 10.1001/jama.1984.03350210038026.
    1. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992;45(9):941–950. doi: 10.1016/0895-4356(92)90110-9.
    1. Melbourne E, Sinclair K, Durand M-A, Légaré F, Elwyn G. Developing a dyadic OPTION scale to measure perceptions of shared decision making. Patient Educ Couns. 2010;78(2):177–183. doi: 10.1016/j.pec.2009.07.009.
    1. Melbourne E, Roberts S, Durand M-A, Newcombe R, Légaré F, Dyadic EG, OPTION Measuring perceptions of shared decision-making in practice. Patient Educ Couns. 2011;83(1):55–57. doi: 10.1016/j.pec.2010.04.019.
    1. Kriston L, Scholl I, Hölzel L, Simon D, Loh A, Härter M. The 9-item shared decision making questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns. 2010;80(1):94–99. doi: 10.1016/j.pec.2009.09.034.
    1. Shrive FM, Stuart H, Quan H, Ghali WA. Dealing with missing data in a multi-question depression scale: a comparison of imputation methods. BMC Med Res Methodol. 2006;6:57. doi: 10.1186/1471-2288-6-57.
    1. Thompson-Leduc P, Turcotte S, Labrecque M, Legare F. Prevalence of clinically significant decisional conflict: an analysis of five studies on decision-making in primary care. BMJ Open. 2016;6(6):e011490. doi: 10.1136/bmjopen-2016-011490.
    1. Gallagher D, Ni Mhaolain A, Crosby L, Ryan D, Lacey L, Coen RF, et al. Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers. Aging Ment Health. 2011;15(6):663–670. doi: 10.1080/13607863.2011.562179.
    1. Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18(10):917–927. doi: 10.1097/JGP.0b013e3181d5745d.
    1. Yeager CA, Hyer LA, Hobbs B, Coyne AC. Alzheimer's disease and vascular dementia: the complex relationship between diagnosis and caregiver burden. Issues Ment Health Nurs. 2010;31(6):376–384. doi: 10.3109/01612840903434589.
    1. Zawadzki L, Mondon K, Peru N, Hommet C, Constans T, Gaillard P, et al. Attitudes towards Alzheimer's disease as a risk factor for caregiver burden. Int Psychogeriatr. 2011;23(9):1451–1461. doi: 10.1017/S1041610211000640.
    1. Davis JD, Tremont G. Impact of frontal systems behavioral functioning in dementia on caregiver burden. J Neuropsychiatr Clin Neurosci. 2007;19(1):43–49. doi: 10.1176/jnp.2007.19.1.43.
    1. Collins C, Jones R. Emotional distress and morbidity in dementia carers: a matched comparison of husbands and wives. Int J Geriatr Psychiatry. 1997;12(12):1168–1173. doi: 10.1002/(SICI)1099-1166(199712)12:12<1168::AID-GPS711>;2-F.
    1. Bedard M, Kuzik R, Chambers L, Molloy DW, Dubois S, Lever JA. Understanding burden differences between men and women caregivers: the contribution of care-recipient problem behaviors. Int Psychogeriatr. 2005;17(1):99–118. doi: 10.1017/S1041610204000857.
    1. Elwyn G, Frosch DL, Kobrin S. Implementing shared decision-making: consider all the consequences. Implement Sci. 2016;11(1):114. doi: 10.1186/s13012-016-0480-9.
    1. Winter L, Moss MS, Hoffman C. Affective forecasting and advance care planning: anticipating quality of life in future health statuses. J Health Psychol. 2009;14(3):447–456. doi: 10.1177/1359105309102201.
    1. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango) Soc Sci Med. 1997;44(5):681–692. doi: 10.1016/S0277-9536(96)00221-3.

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