Current Women`s Health Reviews

Author(s): Lori Whitten*

DOI: 10.2174/1573404817666210208204400

Informal Caregiving for People with Dementia and Women’s Health: A Gender-based Assessment of Studies on Resilience

Article ID: e041021191232 Pages: 22

  • * (Excluding Mailing and Handling)

Abstract

Background: Most informal caregivers are females. Females experience greater caregiver burden than males, including negative health consequences. Some caregivers show resilience i.e., maintain physical and mental health and usual functioning-despite experiencing high burden. Examining the factors that contribute to resilience and the gender differences among caregivers of people with dementia are burgeoning areas of research with implications for women’s health research and practice.

Objective: To conduct a literature review about the resilience among caregivers of people with dementia (PWD), focusing on self-generated processes, and to assess the extent to which studies reported gender information.

Methods: The U.S. National Library of Medicine PubMed database was searched for empirical studies on resilience among informal caregivers of people with dementia published between January 1, 2017 and April 7, 2020 and the retrieved abstracts screened using predetermined criteria. Out of 209 unique records screened, 41 were assessed for eligibility and 27 were reviewed.

Results: All 27 studies reported participant gender distribution (average 71% female, 29% male). Most studies (n = 23) included both genders, and nine (39%) conducted a gender-based analysis of their results. Five categories of resilience-related processes emerged: (1) caregiver experiences, (2) coping strategies, (3) preserving the relationship with care recipients, (4) social support, and (5) specific individual processes with some gender differences.

Conclusion: Although the studies reviewed reported the gender distribution of participants and included men and women, many did not analyze the results by gender. When analyzed, some resilience- related processes differed by gender, pointing to areas for future research.

Keywords: Informal caregivers, dementia, adult resilience, gender-based assessment, women’s health, caregiving.

Graphical Abstract

[1]
National Academies of Sciences, Engineering, and Medicine. Families caring for an aging America. Washington, DC. U.S. The National Academies Press, Washington. 2016.
[http://dx.doi.org/10.17226/23606]
[2]
National Alliance for Caregiving and AARP Public Policy Institute. Caregiving in the US: 2015 report 2015. Available from: https://www.caregiving.org/caregiving2015/
[3]
Centers for disease control and prevention and national association of chronic disease directors. Caregiving for family and friends- a public health issue 2018. Available from: https://www.cdc.gov/aging/caregiving/caregiver-brief.html
[4]
The Free Dictionary, Medical Dictionary, Caregiver burden 2009. Available from: https://medical-dictionary.thefreedictionary.com/caregiver+burden
[5]
Riffin C, Van Ness PH, Wolff JL, Fried T. Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. J Am Geriatr Soc 2019; 67(2): 277-83.
[http://dx.doi.org/10.1111/jgs.15664] [PMID: 30452088]
[6]
Leslie M, Gray RP, Eales J, Fast J, Magnaye A, Khayatzadeh-Mahani A. The care capacity goals of family carers and the role of technology in achieving them. BMC Geriatr 2020; 20(1): 52.
[http://dx.doi.org/10.1186/s12877-020-1455-x] [PMID: 32102654]
[7]
Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med 2016; 176(3): 372-9.
[http://dx.doi.org/10.1001/jamainternmed.2015.7664] [PMID: 26882031]
[8]
Edwards VJ, Bouldin ED, Taylor CA, Olivari BS, McGuire LC. Characteristics and health status of informal unpaid caregivers - 44 States, District of Columbia, and Puerto Rico, 2015-2017. MMWR Morb Mortal Wkly Rep 2020; 69(7): 183-8.
[http://dx.doi.org/10.15585/mmwr.mm6907a2] [PMID: 32078592]
[9]
Zhao G, Okoro CA, Hsia J, Town M. Self-perceived poor/fair health, frequent mental distress, and health insurance status among working-aged US Adults. Prev Chronic Dis 2018; 15: E95.
[http://dx.doi.org/10.5888/pcd15.170523] [PMID: 30025217]
[10]
Vespa J. The U.S. joins other countries with large aging populations. US Census Bureau Press Release 2019.https://www.census.gov/library/stories/2018/03/graying-america.html
[11]
Johnson JL, Greaves L, Repta R. Better science with sex and gender: Facilitating the use of a sex and gender-based analysis in health research. Int J Equity Health 2009; 8: 14.
[http://dx.doi.org/10.1186/1475-9276-8-14] [PMID: 19419579]
[12]
Clayton JA, Tannenbaum C. Reporting sex, gender, or both in clinical research? JAMA 2016; 316(18): 1863-4.
[http://dx.doi.org/10.1001/jama.2016.16405] [PMID: 27802482]
[13]
National Institutes of Health, office of research on women's health. Advancing science for the health of women’s: the trans- NIH strategic plan for women’s health research 2019; 2019-23.https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH_Strategic_Plan_2019_02_21_19_V2_508C.pdf
[14]
Berg JA. The stress of caregiving in midlife women. Female Patient (Parsippany) 2011; 36: 33-6.
[15]
Berg J, Woods NF. Women’s health care in advanced practice nursing. New York: Springer Publishing Co. 2017; pp. 335-57.
[16]
Woods NF, Berg J, Mitchell ES. Women’s Health Care in Advanced Practice Nursing. New York: Springer Publishing Co. 2017; pp. 160-95.
[17]
Swinkels J, Tilburg TV, Verbakel E, Broese van Groenou M. Explaining the gender gap in the caregiving burden of partner caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 74(2): 309-17.
[http://dx.doi.org/10.1093/geronb/gbx036] [PMID: 28379560]
[18]
Cohen SA, Sabik NJ, Cook SK, Azzoli AB, Mendez-Luck CA. Differences within differences: gender inequalities in caregiving intensity vary by race and ethnicity in informal caregivers. J Cross Cult Gerontol 2019; 34(3): 245-63.
[http://dx.doi.org/10.1007/s10823-019-09381-9] [PMID: 31407137]
[19]
National Institute on Aging. What is dementia? Symptoms, types, and diagnosis. Available from: https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis
[20]
National Institute on Aging. What is Lewy Body Dementia? https://www.nia.nih.gov/health/what-lewy-body-dementia
[21]
Office of the assistant secretary for planning and evaluation, US department of health and human services: living arrangements of people with Alzheimer’s disease and related dementias: implications for services and supports: 2017. Available from: https://aspe.hhs.gov/system/files/pdf/257966/LivingArran.pdf
[22]
Alzheimer’s impact movement and Alzheimer’s association. Alzheimer’s disease caregivers 2019. Available from: https://act.alz.org/site/DocServer/caregivers_fact_sheet.pdf?docID=3022
[23]
National alliance for caregiving and Alzheimer’s association. Dementia caregiving in the US 2017. Available from: http://www.caregiving.org/wp-content/uploads/2017/02/DementiaCaregivingFINAL_WEB.pdf
[24]
Cheng ST. Dementia caregiver burden: A research update and critical analysis. Curr Psychiatry Rep 2017; 19(9): 64.
[http://dx.doi.org/10.1007/s11920-017-0818-2] [PMID: 28795386]
[25]
Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009; 11(2): 217-28.
[http://dx.doi.org/10.31887/DCNS.2009.11.2/hbrodaty] [PMID: 19585957]
[26]
Goren A, Montgomery W, Kahle-Wrobleski K, Nakamura T, Ueda K. Impact of caring for persons with Alzheimer’s disease or dementia on caregivers’ health outcomes: findings from a community based survey in Japan. BMC Geriatr 2016; 16: 122.
[http://dx.doi.org/10.1186/s12877-016-0298-y] [PMID: 27287238]
[27]
Joling KJ, van Marwijk HW, Veldhuijzen AE, et al. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry 2015; 23(3): 293-303.
[http://dx.doi.org/10.1016/j.jagp.2014.05.005] [PMID: 24935785]
[28]
Laks J, Goren A, Dueñas H, Novick D, Kahle-Wrobleski K. Caregiving for patients with Alzheimer’s disease or dementia and its association with psychiatric and clinical comorbidities and other health outcomes in Brazil. Int J Geriatr Psychiatry 2016; 31(2): 176-85.
[http://dx.doi.org/10.1002/gps.4309] [PMID: 26011093]
[29]
Alzheimer’s Association. 2020 Alzheimer’s disease facts and figures. Alzheimers Dement 2020; 16: 391-400.
[http://dx.doi.org/10.1002/alz.12068] [PMID: 32157811]
[30]
Leggett AN, Sonnega AJ, Lohman MC. Till death do us part: intersecting health and spousal dementia caregiving on caregiver mortality. J Aging Health 2020; 32(7-9): 871-9.
[http://dx.doi.org/10.1177/0898264319860975] [PMID: 31272269]
[31]
Windle G. What is resilience? A review and concept analysis. Rev Clin Gerontol 2011; 21: 152-69.
[http://dx.doi.org/10.1017/S0959259810000420]
[32]
Sisto A, Vicinanza F, Campanozzi LL, Ricci G, Tartaglini D, Tambone V. Towards a transversal definition of psychological resilience: A literature review. Medicina (Kaunas) 2019; 55(11): E745.
[http://dx.doi.org/10.3390/medicina55110745] [PMID: 31744109]
[33]
Ungar M. The social ecology of resilience: addressing contextual and cultural ambiguity of a nascent construct. Am J Orthopsychiatry 2011; 81(1): 1-17.
[http://dx.doi.org/10.1111/j.1939-0025.2010.01067.x] [PMID: 21219271]
[34]
Windle G. The contribution of resilience to healthy ageing. Perspect Public Health 2012; 132(4): 159-60.
[http://dx.doi.org/10.1177/1757913912449572] [PMID: 22729003]
[35]
Bennett KM, Windle G. The importance of not only individual, but also community and society factors in resilience in later life. Behav Brain Sci 2015; 38: e94.
[http://dx.doi.org/10.1017/S0140525X14001459] [PMID: 26787240]
[36]
Kalisch R, Müller MB, Tüscher O. A conceptual framework for the neurobiological study of resilience. Behav Brain Sci 2015; 38: e92.
[http://dx.doi.org/10.1017/S0140525X1400082X] [PMID: 25158686]
[37]
Srivastava K. Positive mental health and its relationship with resilience. Ind Psychiatry J 2011; 20(2): 75-6.
[http://dx.doi.org/10.4103/0972-6748.102469] [PMID: 23271858]
[38]
Schultze-Lutter F, Schimmelmann BG, Schmidt SJ. Resilience, risk, mental health and well-being: associations and conceptual differences. Eur Child Adolesc Psychiatry 2016; 25(5): 459-66.
[http://dx.doi.org/10.1007/s00787-016-0851-4] [PMID: 27105994]
[39]
Bennett KM. Emotional and personal resilience through life: Review commissioned by Foresight Future of an Ageing Population Project. United Kingdom: Government Office of Science 2015. Available from: https://assets.publishing.servicov.uk/government/uploads/system/uploads/attachment_data/file/456126/gs-15-19-future-ageing-emotional-personal-resilience-er04.pdf
[40]
Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ 2011; 343: d4163.
[http://dx.doi.org/10.1136/bmj.d4163] [PMID: 21791490]
[41]
Wiles JL, Wild K, Kerse N, Allen RES. Resilience from the point of view of older people: There’s still life beyond a funny knee. Soc Sci Med 2012; 74(3): 416-24.
[http://dx.doi.org/10.1016/j.socscimed.2011.11.005] [PMID: 22204841]
[42]
Fallon IP, Tanner MK, Greenwood BN, Baratta MV. Sex differences in resilience: experiential factors and their mechanisms. Eur J Neurosci 2019; 52(1): 2530-47.
[http://dx.doi.org/10.1111/ejn.14639] [PMID: 31800125]
[43]
Hirani S, Lasiuk G, Hegadoren K. The intersection of gender and resilience. J Psychiatr Ment Health Nurs 2016; 23(6-7): 455-67.
[http://dx.doi.org/10.1111/jpm.12313] [PMID: 27593204]
[44]
Rincón-Cortés M, Herman JP, Lupien S, Maguire J, Shansky RM. Stress: Influence of sex, reproductive status and gender. Neurobiol Stress 2019; 10: 100155.
[http://dx.doi.org/10.1016/j.ynstr.2019.100155] [PMID: 30949564]
[45]
Baratta MV, Gruene TM, Dolzani SD, Chun LE, Maier SF, Shansky RM. Controllable stress elicits circuit-specific patterns of prefrontal plasticity in males, but not females. Brain Struct Funct 2019; 224(5): 1831-43.
[http://dx.doi.org/10.1007/s00429-019-01875-z] [PMID: 31028464]
[46]
Lau SYZ, Guerra RO, Barbosa JFS, Phillips SP. Impact of resilience on health in older adults: A cross-sectional analysis from the international mobility in aging study (IMIAS). BMJ Open 2018; 8(11): e023779.
[http://dx.doi.org/10.1136/bmjopen-2018-023779] [PMID: 30498045]
[47]
Phillips SP, Auais M, Belanger E, Alvarado B, Zunzunegui MV. Life-course social and economic circumstances, gender, and resilience in older adults: The longitudinal international mobility in aging study (IMIAS). SSM Popul Health 2016; 2: 708-17.
[http://dx.doi.org/10.1016/j.ssmph.2016.09.007] [PMID: 29349182]
[48]
Lakomý M, Petrová Kafková M. Resilience as a factor of longevity and gender differences in its effects. Czech Sociol Rev 2017; 53: 369-92.
[http://dx.doi.org/10.13060/00380288.2017.53.3.336]
[49]
Windle G, Bennett KM. The social ecology of resilience: A handbook of theory and practice. Berlin: Springer Science + Business Media, LLC 2012; pp. 219-31.
[50]
Gaugler JE, Bain LJ, Mitchell L, Finlay J, Fazio S, Jutkowitz E. Reconsidering frameworks of Alzheimer’s dementia when assessing psychosocial outcomes. Alzheimers Dement (N Y) 2019; 5: 388-97.
[http://dx.doi.org/10.1016/j.trci.2019.02.008] [PMID: 31463361]
[51]
Yu DSF, Cheng ST, Wang J. Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int J Nurs Stud 2018; 79: 1-26.
[http://dx.doi.org/10.1016/j.ijnurstu.2017.10.008] [PMID: 29128685]
[52]
Olivari BS, French ME, McGuire LC. The public health road map to respond to the growing dementia crisis. Innov Aging 2020; 4(1): igz043.
[http://dx.doi.org/10.1093/geroni/igz043] [PMID: 32405541]
[53]
Office of the assistant secretary for planning and evaluation, US department of health and human services: national research summit on care, services, and supports for persons with dementia and their caregivers: report to the national advisory council on Alzheimer’s research, care, and services: 2018. Available from: https://aspe.hhs.gov/basic-report/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers-final-summit-report
[54]
Erol R, Brooker D, Peel E. The impact of dementia on women internationally: An integrative review. Health Care Women Int 2016; 37(12): 1320-41.
[http://dx.doi.org/10.1080/07399332.2016.1219357] [PMID: 27485476]
[55]
Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019; 15: 321-87.
[http://dx.doi.org/10.1016/j.jalz.2019.01.010]
[56]
Monteiro AMF, Santos RL, Kimura N, Baptista MAT, Dourado MCN. Coping strategies among caregivers of people with Alzheimer disease: A systematic review. Trends Psychiatry Psychother 2018; 40(3): 258-68.
[http://dx.doi.org/10.1590/2237-6089-2017-0065] [PMID: 30304119]
[57]
Dias R, Santos RL, Sousa MF, et al. Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants. Trends Psychiatry Psychother 2015; 37(1): 12-9.
[http://dx.doi.org/10.1590/2237-6089-2014-0032] [PMID: 25860562]
[58]
Farina N, Page TE, Daley S, et al. Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimers Dement 2017; 13(5): 572-81.
[http://dx.doi.org/10.1016/j.jalz.2016.12.010] [PMID: 28167069]
[59]
Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health 2018; 33(11): 1321-42.
[http://dx.doi.org/10.1080/08870446.2018.1496250] [PMID: 30260239]
[60]
Joling KJ, Windle G, Dröes RM, et al. Factors of resilience in informal caregivers of people with dementia from integrative international data analysis. Dement Geriatr Cogn Disord 2016; 42(3-4): 198-214.
[http://dx.doi.org/10.1159/000449131] [PMID: 27669054]
[61]
Cherry MG, Salmon P, Dickson M, Powell D, Sikdar S, Ablett J. Factors influencing the resilience of carers of individuals with dementia. Rev Clin Gerontol 2013; 23: 251-66.
[http://dx.doi.org/10.1017/S0959259813000130]
[62]
Teahan Á, Lafferty A, McAuliffe E, et al. Resilience in family caregiving for people with dementia: A systematic review. Int J Geriatr Psychiatry 2018; 33(12): 1582-95.
[http://dx.doi.org/10.1002/gps.4972] [PMID: 30230018]
[63]
Parkinson M, Carr SM, Rushmer R, Abley C. Investigating what works to support family carers of people with dementia: A rapid realist review. J Public Health (Oxf) 2017; 39(4): e290-301.
[http://dx.doi.org/10.1093/pubmed/fdw100] [PMID: 27679663]
[64]
Petriwskyj A, Parker D, O’Dwyer S, Moyle W, Nucifora N. Interventions to build resilience in family caregivers of people living with dementia: A comprehensive systematic review. JBI Database Syst Rev Implement Reports 2016; 14(6): 238-73.
[http://dx.doi.org/10.11124/JBISRIR-2016-002555] [PMID: 27532659]
[65]
Joling KJ, Windle G, Dröes RM, Huisman M, Hertogh CMPM, Woods RT. What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination. Aging Ment Health 2017; 21(5): 509-17.
[http://dx.doi.org/10.1080/13607863.2015.1124836] [PMID: 26689489]
[66]
Bott NT, Sheckter CC, Milstein AS. Dementia care, women’s health, and gender equity: the value of well-timed caregiver support. JAMA Neurol 2017; 74(7): 757-8.
[http://dx.doi.org/10.1001/jamaneurol.2017.0403] [PMID: 28492832]
[67]
Bartlett R, Gjernes T, Lotherington AT, Obstefelder A. Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research. Health Soc Care Commun 2018; 26(1): 14-26.
[http://dx.doi.org/10.1111/hsc.12340] [PMID: 26990695]
[68]
Hong SC, Coogle CL. Spousal caregiving for partners with dementia: A deductive literature review testing Calasanti’s gendered view of care work. J Appl Gerontol 2016; 35(7): 759-87.
[http://dx.doi.org/10.1177/0733464814542246] [PMID: 25037154]
[69]
Glauber R. Gender differences in spousal care across the later life course. Res Aging 2017; 39(8): 934-59.
[http://dx.doi.org/10.1177/0164027516644503] [PMID: 27193046]
[70]
Greenwood N, Smith R. Barriers and facilitators for male carers in accessing formal and informal support: A systematic review. Maturitas 2015; 82(2): 162-9.
[http://dx.doi.org/10.1016/j.maturitas.2015.07.013] [PMID: 26271710]
[71]
Arbel I, Bingham KS, Dawson DR. A scoping review of literature on sex and gender differences among dementia spousal caregivers. Gerontologist 2019; 59(6): e802-15.
[http://dx.doi.org/10.1093/geront/gny177] [PMID: 30689840]
[72]
Macdonald M, Martin-Misener R, Weeks L, Helwig M, Moody E, MacLean H. Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: A qualitative systematic review. In: JBI Database System Rev Implement Rep. 2019; 12: pp. 14-20.
[http://dx.doi.org/10.11124/JBISRIR-2017-003774]
[73]
National Institutes of Health. NIH Policy and Guidelines on The Inclusion of Female and Minorities as Subjects in Clinical Research. Available from: https://grants.nih.gov/policy/inclusion/women-and-minorities/guidelines.htm
[74]
Day S, Mason R, Lagosky S, Rochon PA. Integrating and evaluating sex and gender in health research. Health Res Policy Syst 2016; 14(1): 75.
[http://dx.doi.org/10.1186/s12961-016-0147-7] [PMID: 27724961]
[75]
Gahagan J, Gray K, Whynacht A. Sex and gender matter in health research: Addressing health inequities in health research reporting. Int J Equity Health 2015; 14: 12.
[http://dx.doi.org/10.1186/s12939-015-0144-4] [PMID: 25637131]
[76]
Heidari S, Babor TF, De Castro P, Tort S, Curno M. Sex and Gender Equity in Research: rationale for the SAGER guidelines and recommended use. Res Integr Peer Rev 2016; 1: 2.
[http://dx.doi.org/10.1186/s41073-016-0007-6] [PMID: 29451543]
[77]
Johnson SM, Karvonen CA, Phelps CL, Nader S, Sanborn BM. Assessment of analysis by gender in the Cochrane reviews as related to treatment of cardiovascular disease. J Womens Health (Larchmt) 2003; 12(5): 449-57.
[http://dx.doi.org/10.1089/154099903766651577] [PMID: 12869292]
[78]
Geller SE, Koch AR, Roesch P, Filut A, Hallgren E, Carnes M. The more things change, the more they stay the same: A study to evaluate compliance with inclusion and assessment of women and minorities in randomized controlled trials. Acad Med 2018; 93(4): 630-5.
[http://dx.doi.org/10.1097/ACM.0000000000002027] [PMID: 29053489]
[79]
Gilmore-Bykovskyi A, Johnson R, Walljasper L, Block L, Werner N. Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions. Am J Alzheimers Dis Other Demen 2018; 33(3): 145-52.
[http://dx.doi.org/10.1177/1533317517749465] [PMID: 29281895]
[80]
Xiong C, Mansfield E, Colantonio A. Assessment of sex analysis in studies of technology-based interventions to alleviate caregiver burden among caregivers of persons with dementia. J Rehabil Assist Technol Eng 2018; 5: 2055668318775313.
[http://dx.doi.org/10.1177/2055668318775313] [PMID: 31191939]
[81]
Xiong C, Biscardi M, Astell A, et al. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review. PLoS One 2020; 15(4): e0231848.
[http://dx.doi.org/10.1371/journal.pone.0231848] [PMID: 32310969]
[82]
Bekhet AK, Avery JS. Resilience from the perspectives of caregivers of persons with dementia. Arch Psychiatr Nurs 2018; 32(1): 19-23.
[http://dx.doi.org/10.1016/j.apnu.2017.09.008] [PMID: 29413066]
[83]
Clare L, Wu YT, Quinn C, et al. IDEAL Study Team. A comprehensive model of factors associated with capability to “live well” for family caregivers of people living with mild-to-moderate dementia: findings from the IDEAL Study. Alzheimer Dis Assoc Disord 2019; 33(1): 29-35.
[http://dx.doi.org/10.1097/WAD.0000000000000285] [PMID: 30802226]
[84]
Donnellan WJ, Bennett KM, Soulsby LK. How does carer resilience change over time and care status? A qualitative longitudinal study. Aging Ment Health 2019; 23(11): 1510-6.
[http://dx.doi.org/10.1080/13607863.2018.1503998] [PMID: 30449140]
[85]
Hellström I, Håkanson C, Eriksson H, Sandberg J. Development of older men’s caregiving roles for wives with dementia. Scand J Caring Sci 2017; 31(4): 957-64.
[http://dx.doi.org/10.1111/scs.12419] [PMID: 28124456]
[86]
Jones SM, Mioshi E, Killett A. Coping but not allowing the coping to be everything: Resilience in informal dementia care. Health Soc Care Community 2019; 27(4): e289-97.
[http://dx.doi.org/10.1111/hsc.12732] [PMID: 30844124]
[87]
O’Dwyer ST, Moyle W, Taylor T, Creese J, Zimmer-Gembeck M. In their own words: how family carers of people with dementia understand resilience. Behav Sci (Basel) 2017; 7(3): E57.
[http://dx.doi.org/10.3390/bs7030057] [PMID: 28825686]
[88]
van Wijngaarden E, van der Wedden H, Henning Z, Komen R, The AM. Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. PLoS One 2018; 13(6): e0198034.
[http://dx.doi.org/10.1371/journal.pone.0198034] [PMID: 29897922]
[89]
Wang CL, Kuo LM, Chiu YC, et al. Protective preparation: a process central to family caregivers of persons with mild cognitive impairment. Int Psychogeriatr 2018; 30(3): 375-84.
[http://dx.doi.org/10.1017/S1041610217001764] [PMID: 28946933]
[90]
Balbim GM, Marques IG, Cortez C, Magallanes M, Rocha J, Marquez DX. Coping strategies utilized by middle-aged and older Latino caregivers of loved ones with Alzheimer’s disease and related dementia. J Cross Cult Gerontol 2019; 34(4): 355-71.
[http://dx.doi.org/10.1007/s10823-019-09390-8] [PMID: 31705279]
[91]
van Knippenberg RJM, de Vugt ME, Ponds RW, Verhey FRJ, Myin-Germeys I. Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study. PLoS One 2018; 13(4): e0194118.
[http://dx.doi.org/10.1371/journal.pone.0194118] [PMID: 29617373]
[92]
Wawrziczny E, Pasquier F, Ducharme F, Kergoat MJ, Antoine P. Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study. Arch Gerontol Geriatr 2017; 69: 162-8.
[http://dx.doi.org/10.1016/j.archger.2016.12.002] [PMID: 27978492]
[93]
Hickman H, Clarke C, Wolverson E. A qualitative study of the shared experience of humour between people living with dementia and their partners. Dementia 2020; 19(6): 1794-810.
[http://dx.doi.org/10.1177/1471301218805895] [PMID: 30335524]
[94]
Riley GA, Evans L, Oyebode JR. Relationship continuity and emotional well-being in spouses of people with dementia. Aging Ment Health 2018; 22(3): 299-305.
[http://dx.doi.org/10.1080/13607863.2016.1248896] [PMID: 27809565]
[95]
Vatter S, McDonald KR, Stanmore E, Clare L, McCormick SA, Leroi I. A qualitative study of female caregiving spouses’ experiences of intimate relationships as cognition declines in Parkinson’s disease. Age Ageing 2018; 47(4): 604-10.
[http://dx.doi.org/10.1093/ageing/afy049] [PMID: 29617933]
[96]
Anderson JG, Hundt E, Dean M, Keim-Malpass J, Lopez RP. The church of online support: examining the use of blogs among family caregivers of persons with dementia. J Fam Nurs 2017; 23(1): 34-54.
[http://dx.doi.org/10.1177/1074840716681289] [PMID: 27920340]
[97]
Donnellan WJ, Bennett KM, Soulsby LK. Family close but friends closer: exploring social support and resilience in older spousal dementia carers. Aging Ment Health 2017; 21(11): 1222-8.
[http://dx.doi.org/10.1080/13607863.2016.1209734] [PMID: 27438380]
[98]
Jones SM, Killett A, Mioshi E. What factors predict family caregivers’ attendance at dementia cafés? J Alzheimers Dis 2018; 64(4): 1337-45.
[http://dx.doi.org/10.3233/JAD-180377] [PMID: 29991136]
[99]
Jones SM, Woodward M, Mioshi E. Social support and high resilient coping in carers of people with dementia. Geriatr Nurs 2019; 40(6): 584-9.
[http://dx.doi.org/10.1016/j.gerinurse.2019.05.011] [PMID: 31178232]
[100]
Anderson JG, Hundt E, Dean M, Rose KM. “A fine line that we walk every day”: self-care approaches used by family caregivers of persons with dementia. Issues Ment Health Nurs 2019; 40(3): 252-9.
[http://dx.doi.org/10.1080/01612840.2018.1499156] [PMID: 30422041]
[101]
Grover S, Nehra R, Malhotra R, Kate N. Positive aspects of caregiving experience among caregivers of patients with dementia. East Asian Arch Psychiatry 2017; 27(2): 71-8.
[PMID: 28652500]
[102]
Jeong JS, Kim Y, Chon MG. Who Is caring for the caregiver? the role of cybercoping for dementia caregivers. Health Commun 2018; 33(1): 5-13.
[http://dx.doi.org/10.1080/10410236.2016.1242030] [PMID: 27901347]
[103]
Lau BH, Cheng C. Gratitude and coping among familial caregivers of persons with dementia. Aging Ment Health 2017; 21(4): 445-53.
[http://dx.doi.org/10.1080/13607863.2015.1114588] [PMID: 26613417]
[104]
Lloyd J, Muers J, Patterson TG, Marczak M. Self-compassion, coping strategies, and caregiver burden in caregivers of people with dementia. Clin Gerontol 2019; 42(1): 47-59.
[http://dx.doi.org/10.1080/07317115.2018.1461162] [PMID: 29723129]
[105]
Polenick CA, Sherman CW, Birditt KS, Zarit SH, Kales HC. Purpose in life among family care partners managing dementia: links to caregiving gains. Gerontologist 2019; 59(5): e424-32.
[http://dx.doi.org/10.1093/geront/gny063] [PMID: 29873736]
[106]
Roberto KA, Mccann BR, Blieszner R, Savla J. A long and winding road: Dementia caregiving with grit and grace. Innov Aging 2019; 3(3): 21.
[http://dx.doi.org/10.1093/geroni/igz021] [PMID: 31528711]
[107]
Duckworth AL. Grit: The power of passion and perseverance. New York: Scribner 2016.
[108]
Tranvåg O, Nåden D, Gallagher A. Dignity work of older women caring for a husband with dementia at home. Health Care Women Int 2019; 40(10): 1047-69.
[http://dx.doi.org/10.1080/07399332.2019.1578780] [PMID: 30913004]
[109]
Yoon KH, Moon YS, Lee Y, et al. CARE (Caregivers of Alzheimer’s Disease Research) Investigators. The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia. Aging Ment Health 2018; 22(1): 141-7.
[http://dx.doi.org/10.1080/13607863.2016.1232366] [PMID: 27661263]
[110]
Blandin K, Pepin R. Dementia grief: A theoretical model of a unique grief experience. Dementia 2017; 16(1): 67-78.
[http://dx.doi.org/10.1177/1471301215581081] [PMID: 25883036]
[111]
National Institute on Aging and National Institute of Neurological Disorders and Stroke: Lewy Body Dementia: Information for Patients, Families, and Professionals 2018.
[112]
National Institute on Aging Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging 2019. [cited 2021 Oct 31]. Available from: https://order.nia.nih.gov/publication/caring-for-a-person-with-alzheimers-disease-your-easy-to-use-guide
[113]
Rodríguez-Madrid MN, Del Río-Lozano M, Fernandez-Peña R, et al. Gender differences in social support received by informal caregivers: A personal network analysis approach. Int J Environ Res Public Health 2018; 16(1): 91.
[http://dx.doi.org/10.3390/ijerph16010091] [PMID: 30602656]
[114]
McKenzie SK, Collings S, Jenkin G, River J. Masculinity, social connectedness, and mental health: men’s diverse patterns of practice. Am J Men Health 2018; 12(5): 1247-61.
[http://dx.doi.org/10.1177/1557988318772732] [PMID: 29708008]
[115]
Honda A, Abe Y, Date Y, Honda S. The impact of multiple roles on psychological distress among Japanese workers. Saf Health Work 2015; 6(2): 114-9.
[http://dx.doi.org/10.1016/j.shaw.2014.12.004] [PMID: 26106510]
[116]
Sumra MK, Schillaci MA. Stress and the multiple-role woman: taking a closer look at the “superwoman”. PLoS One 2015; 10(3): e0120952.
[http://dx.doi.org/10.1371/journal.pone.0120952] [PMID: 25816317]
[117]
Robinson CA, Bottorff JL, Pesut B, Oliffe JL, Tomlinson J. The male face of caregiving: A scoping review of men caring for a person with dementia. Am J Men Health 2014; 8(5): 409-26.
[http://dx.doi.org/10.1177/1557988313519671] [PMID: 24414033]
[118]
Prochaska JO, DiClemente CC. Handbook of psychotherapy integration Oxford series in clinical psychology. 2nd ed. Oxford, New York: Oxford University Press 2005; pp. 147-71.
[http://dx.doi.org/10.1093/med:psych/9780195165791.003.0007]
[119]
Substance abuse and mental health services administration. Peers. https://www.samhsa.gov/brss-tacs/recovery-support-tools/peers