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Helping caregivers of persons with dementia: which interventions work and how large are their effects?
Open accessAbstract
BACKGROUND: In recent years, many different forms of interventions for caregivers of people with dementia have been developed. However, their results have been, in part, inconclusive. METHODS: Meta-analysis was used to integrate the results of 127 intervention studies with dementia caregivers published or presented between 1982 and 2005. RESULTS: Interventions had, on average, significant but small effects on burden, depression, subjective well-being, ability/knowledge and symptoms of care recipient. Only multicomponent interventions reduced the risk for institutionalization. Psychoeducational interventions that require active participation of caregivers had the broadest effects. Effects of cognitive-behavioral therapy, support, counseling, daycare, training of care recipient, and multicomponent interventions were domain specific. The effect sizes varied by study characteristics, such as caregiver gender and year of publication. CONCLUSIONS: Because most interventions have domain-specific outcomes, clinicians must tailor interventions according to the specific needs of the individual caregivers. Although more recent interventions showed stronger effects, there is room for further improvements in interventions.
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“Interventions that require active participation of caregivers have the greatest effect.15”
From Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial (2013) · cites this paper as [15]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“Multi-component psychotherapeutic interventions, such as cognitive-behavioral therapy (CBT), have proven moderately effective in targeting caregiver distress and adaptive coping [17, 18].”
From Feasibility and acceptability of an acceptance and commitment therapy intervention for caregivers of adults with Alzheimer’s disease and related dementias (2021) · cites this paper as [18]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“First, the existing research on dementia carers is still largely focused on treating depression and burden and this trend has not changed substantially since earlier systematic reviews (Gallagher-Thompson and Coon, 2007; Pinquart and Sörensen, 2006).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“This meta-analysis integrated the results of 127 carer intervention studies published between 1982 and 2005 and demonstrated that interventions had, on average, significant but small immediate effects on carer outcomes such as burden, depression, and QoL.”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“Second, QoL measures have been used more frequently in psychoeducation-skill building interventions compared to the early review (Pinquart and Sörensen, 2006).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
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“Third, the largest effect sizes were found for CBT based psychotherapeutic interventions, supporting previous findings (Elvish et al. , 2013; Pinquart and Sörensen, 2006).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“Thus, a limited number of sessions or lack of followup or booster sessions may be one of the principal causes for not finding positive outcomes after the treatment (Pinquart & Sörensen, 2006).”
From Pilot study of a psychotherapeutic intervention for reducing guilt feelings in highly distressed dementia family caregivers (Innovative practice). (2021) · cites this paper as Pinquart & Sörensen, 2006
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“Results demonstrated no significant effect on depression and QoL which contradict the findings from the previous review (Pinquart and Sörensen, 2006).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
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“The main limitation of this study was the inclusion of both randomised and non-randomised trials and the authors have concluded that nonrandomised studies may have overestimated the efficacy of interventions.”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Pinquart and Sörensen, 2006
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BackgroundResultDependence and Caregiver Burden in Alzheimer’s Disease and Mild Cognitive Impairment
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“Only multi-component interventions reduced the risk for nursing home placement (Pinquart and Sörensen, 2006).”
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“…the depression levels of both groups were significantly decreased immediately postintervention and at 1-month follow-up, and these results are consistent with previous studies (Brodaty et al., 2003; Pinquart & Sorensen, 2006; Sorensen, Pinquart, & Duberstein, 2002; Thompson et al., 2007).”
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Effects of psychosocial interventions on self‐efficacy of dementia caregivers: a literature review
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“In the dementia caregiving context, psychosocial interventions can improve selfefficacy and reduce burden and psychological distress, as well as other outcomes, for caregivers and their PWD (Schulz et al., 2002; Pinquart and Sörensen, 2006; Brodaty and Arasaratnam, 2012; van Mierlo et al., 2012).”
BackgroundInfluentialThree-Year Trajectories of Caregiver Burden in Alzheimer's Disease
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“These more detailed analyses should also lead to the design of interventions that, as noted by previous studies, are tailored to individual needs [53–55], call for the active participation of caregivers [56], and are linked to the context in which care is provided [57].”
BackgroundDementia case management and risk of long‐term care placement: a systematic review and meta‐analysis
Tam‐Tham, H., Cepoiu‐Martin, M., Ronksley, P. E., Maxwell, C. J., & Hemmelgarn, B. R. (2012) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.3906 · Cited by 74
“Two meta-analyses found a positive statistically significant effect (Pinquart and Sörensen, 2006; Spijker et al., 2008).”
BackgroundMethodInfluentialWhen Dementia is in the House: Needs Assessment Survey for Young Caregivers
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“…(PED) interventions (Acton & Kang, 2001; Brodaty, Green, & Koschera, 2003; Cooke, McNally, Mulligan, Harrison, & Newman, 2001; Gallagher-Thompson & Coon, 2007; Pinquart & Sorensen, 2006; Schulz et al., 2002; Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007; Yin, Zhou, & Bashford, 2002.”
Consistency of dementia caregiver intervention classification: an evidence-based synthesis
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“Prior classifications of dementia caregiver interventions Syntheses of the dementia caregiver intervention literature suggest that an ad hoc classification approach is utilized that is based largely on the general function of interventions (Pinquart and Sörensen, 2006).”
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“In a review of 127 interventions for caregivers, Pinquart and Sorensen ( 2006 ) found that most interventions have domain-specific outcomes, and interventions should be tailored to the specific needs of the individual caregiver.”
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“including 127 interventions showed a significant but small effects on burden, depression, subjective well-being, and knowledge and/or coping abilities of the caregiver [34].”
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“Furthermore, while prior meta-analyses have shown a small effect of CBT on caregiving stress (Pinquart and Sorensen, 2006; Singer et al., 2007), this study found a medium effect size for CBT for caregiving stress for Chinese clients.”
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“Similar to other studies (15, 17), the intervention did not appear to affect caregiver depression, QOL, work hours missed, self-rated stress, self-rated difficulty caring for the CR, and self-rated overall health.”
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“These patients need caregivers, and those caregivers have a higher risk for depression and dementia than non-caregivers (5).”
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“The meta-analysis with 127 intervention studies by Pinquart and Sorensen (2006b) found that, in the case of gender, more women than men showed improvements in depression as well as knowledge and ability.”
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“Various psychosocial interventions have been developed for family carers of people with dementia (Acton 2001; Peacock 2003; Pinquart 2006; Selwood 2007; Sörensen 2002).”
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“…also including duration of the caring role, hours of caregiving and number of care tasks, interference with work, financial strain, family conflict, social isolation, reduced quality of relationship and decreased leisure, are importand components of caregiver burden (Pinquart and Sörensen, 2006a).”
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“Effective components of face-to-face interventions that have been found to reduce psychological distress of family caregivers of people with dementia are: cognitive behavioral therapy (CBT), interactive psycho-education, management of behavioral problems, and coping, social support and problem-solving techniques (Pinq…”
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“Different kinds of interventions have been developed for caregivers of people with dementia [4-7].”
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Gillovic, B., McIntosh, A. J., Cockburn‐Wootten, C., & Darcy, S. (2021) · Journal of Hospitality and Tourism Management · doi:10.1016/j.jhtm.2021.06.003 · Cited by 58
Safety and Health Support for Home Care Workers: The COMPASS Randomized Controlled Trial
Olson, R., Thompson, S. V., Elliot, D. L., Hess, J. A., Rhoten, K. L., Parker, K. N., Wright, R. R., Wipfli, B., Bettencourt, K. M., Buckmaster, A. M., et al. (2016) · American Journal of Public Health · doi:10.2105/ajph.2016.303327 · Cited by 58
Advance care planning: Beyond the living will
Messinger‐Rapport, B. J., Baum, E. E., & Smith, M. L. (2009) · Cleveland Clinic Journal of Medicine · doi:10.3949/ccjm.76a.07002 · Cited by 66
Restraint use in older adults in home care: A systematic review
Scheepmans, K., de Casterlé, B. D., Paquay, L., & Milisen, K. (2017) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2017.11.008 · Cited by 57
Die Belastung pflegender Angehöriger bei Demenz
Kurz, A., & Wilz, G. (2010) · Der Nervenarzt · doi:10.1007/s00115-010-3108-3 · Cited by 56
Gitlin, L. N., Winter, L., Dennis, M. P., & Hauck, W. W. (2008) · The Journals of Gerontology Series A · doi:10.1093/gerona/63.7.745 · Cited by 55
“The differences found between men and women are consistent with intervention studies of other clinical populations (6,30).”
ResultBeyond hedonia: A theoretical reframing of caregiver well-being.
Marino, V. R., Haley, W. E., & Roth, D. L. (2017) · Translational Issues in Psychological Science · doi:10.1037/tps0000134 · Cited by 57
Reczek, C., & Umberson, D. (2016) · Journal of Marriage and the Family · doi:10.1111/jomf.12318 · Cited by 54
“Research on social networks more broadly demonstrates that intergenerational caregivers receive social support from network members (Thompson, Futterman, Gallagher-Thompson, Rose, & Lovett, 1993; Pinquart & Sörensen, 2006, 2007).”
BackgroundKor, P. P. K., Chien, W. T., Liu, J. Y. W., & Lai, C. K. Y. (2017) · Mindfulness · doi:10.1007/s12671-017-0751-9 · Cited by 57
“…with support group intervention (pooled effect sizes Hedge’s g 0.49; Chien et al. 2011) and various psychosocial interventions (Cohen’s d of 0.10–0.17; Pinquart and Sörensen 2006), there is no strong evidence supporting the MBI has better sustainable effects than the other psychosocial…”
InfluentialMeaning and measurement of caregiver outcomes
Brodaty, H. (2007) · International Psychogeriatrics · doi:10.1017/s1041610207005182 · Cited by 54
“Interventions designed primarily for caregivers are demonstrably effective (Sorensen et al., 2002; Brodaty et al., 2003; Pinquart and Sorensen, 2006a; Pinquart and Sorensen, 2006b; Selwood et al., 2006).”
BackgroundSchaller, S., Marinova-Schmidt, V., Setzer, M., Kondylakis, H., Griebel, L., Sedlmayr, M., Graessel, E., Maler, J. M., Kirn, S., & Kolominsky‐Rabas, P. L. (2016) · JMIR Research Protocols · doi:10.2196/resprot.4354 · Cited by 53
“The importance of tailoring information to informal caregivers’ needs was highlighted in previous studies [21,23,33,52,53].”
Soilemezi, D., Drahota, A., Crossland, J., & Stores, R. (2017) · Dementia · doi:10.1177/1471301217692130 · Cited by 54
Márquez-González, M., Romero-Moreno, R., Cabrera, I., Olmos, R., Pérez-Miguel, A., & Losada, A. (2020) · Psychology and Aging · doi:10.1037/pag0000412 · Cited by 49
Samia, L. W., Hepburn, K. W., & Nichols, L. (2012) · Research in Nursing & Health · doi:10.1002/nur.21504 · Cited by 52
Aboulafia-Brakha, T., Suchecki, D., Gouveia-Paulino, F., Nitríni, R., & Ptak, R. (2014) · Aging & Mental Health · doi:10.1080/13607863.2014.880406 · Cited by 51
“Several reviews and meta-analyses noted the effects of interventions in caregiver’s psychological well-being (Pinquart & Sorensen, 2006; Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007; Thompson et al., 2007; Van Mierlo, Meiland, Van der Roest, & Droes, 2012).”
BackgroundMethodInfluentialChung, P., Ellis‐Hill, C., & Coleman, P. G. (2017) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.1080/17482631.2016.1267316 · Cited by 51
“…al., 2012), information (Thompson et al., 2007; Wald, Fahy, Walker, & Livingston, 2003) and psychosocial support/interventions (Brodaty, Thomson, Thompson, & Fine, 2005; Moniz-Cook et al., 2008; Pinquart & Sörensen, 2006; Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007; Smits et al., 2007).”
Jansen, L., Forbes, D. A., Markle‐Reid, M., Hawranik, P. G., Kingston, D. E., Peacock, S., Henderson, S. R., & Leipert, B. D. (2009) · Home Health Care Services Quarterly · doi:10.1080/01621420802700952 · Cited by 50
“Pinquart and Sorenson (2006) reported on a meta-analysis of 125 studies of dementia care counseling, case management, and education interventions that provided significant reductions in family caregiver burden and depressive symptoms, and increased caregiver knowledge, abilities, and access to dementia care.”
BackgroundBrodaty, H., Mittelman, M. S., Gibson, L., Seeher, K. M., & Burns, A. S. (2009) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e3181a65187 · Cited by 50
Improving caregiving competence, stress coping, and mental well-being in informal dementia carers
Chiu, M. (2013) · World Journal of Psychiatry · doi:10.5498/wjp.v3.i3.65 · Cited by 50
Ducharme, F., Beaudet, L., Legault, A., Kergoat, M., Lévesque, L., & Caron, C. D. (2009) · Clinical Nursing Research · doi:10.1177/1054773808330093 · Cited by 50
“Despite this observation, meta-analyses and critical systematic reviews (Acton & Kang, 2001; Brodaty, Franzep, green, & Koschera, 2003; Pinquart & Sörensen, 2006; Pusey & Richards, 2001; Yin, Zhou, & Bashford, 2002) indicate that intervention programs have been designed primarily for persons with a…”
MethodCaregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving
Corcoran, M. (2011) · The Gerontologist · doi:10.1093/geront/gnr002 · Cited by 50
“D ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/51/4/463/596325 by guest on 20 M arch 2019 The Gerontologist466 The final step of analysis involved categorizing caregivers according to a particular caregiving style.”
BackgroundInfluentialInterventions to build resilience in family caregivers of people living with dementia
Petriwskyj, A. M., Parker, D., O’Dwyer, S., Moyle, W., & Nucifora, N. (2016) · The JBI Database of Systematic Reviews and Implementation Reports · doi:10.11124/jbisrir-2016-002555 · Cited by 50
“meditation, telephone groups).(34,35) A meta-analysis conducted by Pinquart and Sörensen(34) analyzed 127 interventions with family caregivers of people with dementia and found significant positive effects for subjective burden, depression, subjective wellbeing, ability/knowledge (including coping and self-efficacy) a…”
BackgroundMethodReducing Burden for Caregivers of Older Adults With Mild Cognitive Impairment: A Systematic Review
Domingues, N. S., Verreault, P., & Hudon, C. (2018) · American Journal of Alzheimer s Disease & Other Dementias® · doi:10.1177/1533317518788151 · Cited by 53
Simon, C., Kumar, S., & Kendrick, T. (2009) · Social Science & Medicine · doi:10.1016/j.socscimed.2009.04.007 · Cited by 49
Care to Plan: An Online Tool That Offers Tailored Support to Dementia Caregivers
Gaugler, J. E., Reese, M., & Tanler, R. (2015) · The Gerontologist · doi:10.1093/geront/gnv150 · Cited by 49
“…were broadly aligned with attempts to categorize dementia caregiver interventions in various reviews and meta-analyses (Gitlin & Hodgson, 2015; Pinquart & Sörensen, 2006) and included psychoeducation, case management/counseling, support groups, respite, training of the person with dementia…”
BackgroundMethodAt the intersection of culture: Ethnically diverse dementia caregivers’ service use
Richardson, V., Fields, N. L., Won, S., Bradley, E. L., Gibson, A., Rivera, G. L., & Holmes, S. (2017) · Dementia · doi:10.1177/1471301217721304 · Cited by 49
Brewster, G. S., Epps, F. R., Dye, C., Hepburn, K. W., Higgins, M. K., & Parker, M. L. (2019) · Journal of Applied Gerontology · doi:10.1177/0733464819874574 · Cited by 50
“Psychoeducation programs have produced some of the best effects (GallagherThompson & Coon, 2007; Pinquart & Sorensen, 2006).”
BackgroundMacNeil Vroomen, J., Bosmans, J. E., Eekhout, I., Joling, K. J., van Mierlo, L. D., Meiland, F. J. M., van Hout, H. P. J., & de Rooij, S. E. (2016) · PLOS ONE · doi:10.1371/journal.pone.0160908 · Cited by 48
Tailored e-Health services for the dementia care setting: a pilot study of ‘eHealthMonitor’
Schaller, S., Marinova-Schmidt, V., Gobin, J., Criegee‐Rieck, M., Griebel, L., Engel, S., Stein, V., Graessel, E., & Kolominsky‐Rabas, P. L. (2015) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-015-0182-2 · Cited by 49
“Based on the identified user needs, a result of a carefully and comprehensively determining the necessary requirements capture (which has been emphasized in previous studies [10, 12, 18–21]), the eHM Dementia Portal (eHM-DP) was developed for the home-based dementia care setting [22].”
BackgroundNikzad-Terhune, K. A., Anderson, K. A., Newcomer, R. J., & Gaugler, J. E. (2010) · Social Work in Health Care · doi:10.1080/00981381003635296 · Cited by 48
“However, past research on adult day services and other such interventions has yet to definitively determine whether they are effective in reducing burden or delaying NHP (Pinquart & Sorensen, 2006; Torti, Gwyther, Reed, Friedman, & Schulman, 2004).”
InfluentialCristancho‐Lacroix, V., Moulin, F., Wrobel, J., Batrancourt, B. M., Plichart, M., de Rotrou, J., Cantegreil, I., & Rigaud, A. (2014) · JMIR Research Protocols · doi:10.2196/resprot.3607 · Cited by 48
“Background Psycho-educational interventions have shown benefit in relieving the burden of caregivers of people with Alzheimer’s disease (PWAD), and associated manifestations of caregivers’ distress [1,2].”
Gaugler, J. E., Potter, T., & Pruinelli, L. (2014) · Clinics in Geriatric Medicine · doi:10.1016/j.cger.2014.04.003 · Cited by 50
Bunn, F., Goodman, C. M., Pinkney, E., & Drennan, V. M. (2015) · Health & Social Care in the Community · doi:10.1111/hsc.12189 · Cited by 48
Lee, M., Ryoo, J. H., Chung, M., Anderson, J. G., Rose, K. M., & Williams, I. C. (2019) · Dementia · doi:10.1177/1471301218822640 · Cited by 48
Impact of Nutritional Status on Caregiver Burden of Elderly Outpatients. A Cross-Sectional Study
Tana, C., Lauretani, F., Ticinesi, A., Gionti, L., Nouvenne, A., Prati, B., Meschi, T., & Maggio, M. G. (2019) · Nutrients · doi:10.3390/nu11020281 · Cited by 50
Effective Caring: a synthesis of the international evidence on carer needs and interventions
Eagar, K., Owen, A., Williams, K. E., Westera, A., Marosszeky, N., England, R., & Morris, D. (2007) · Figshare · Cited by 48
Chen, C., Thunell, J., & Zissimopoulos, J. (2020) · Alzheimer's & Dementia: Translational Research & Clinical Interventions · doi:10.1002/trc2.12082 · Cited by 45
Ayalon, L. (2007) · International Psychogeriatrics · doi:10.1017/s1041610207006175 · Cited by 47
“Whereas the literature on informal caregivers’ interventions has expanded dramatically in recent years (Pinquart and Sorensen, 2006), research on LTC staff interventions has been quite limited.”
BackgroundLiving with mild cognitive impairment: the patient's and carer's experience
Dean, K., & Wilcock, G. (2012) · International Psychogeriatrics · doi:10.1017/s104161021100264x · Cited by 47
“A meta-analysis of 127 controlled intervention studies in dementia carers identified small but significant effects on burden, depression, subjective well-being, ability and knowledge ratings following carer interventions (Pinquart and Sorensen, 2006).”
BackgroundImpact of Neuropsychiatric Symptoms On Caregiver Burden in Patients With Alzheimer’s Disease
Fischer, C. E., Ismail, Z., & Schweizer, T. A. (2012) · Neurodegenerative Disease Management · doi:10.2217/nmt.12.19 · Cited by 46
Cheng, S., Mak, E. P. M., Kwok, T. C. Y., Fung, H. H.-L., & LAM, L. C. W. (2019) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbz118 · Cited by 51
Attentes et besoins des aidants de personnes souffrant de maladie d’Alzheimer
Amieva, H., Rullier, L., Bouisson, J., Dartigues, J., Dubois, O., & Salamon, R. (2012) · Revue d Épidémiologie et de Santé Publique · doi:10.1016/j.respe.2011.12.136 · Cited by 59
Saito, T., Kondo, N., Shiba, K., Murata, C., & Kondo, K. (2018) · PLoS ONE · doi:10.1371/journal.pone.0194919 · Cited by 46
Metadata
- Authors
- Pinquart, M., & Sorensen, S.
- Affiliations
- Friedrich Schiller University Jena (DE)
- ORCID
- Pinquart, Martin
- Venue
- International Psychogeriatrics
- Publisher
- Elsevier BV
- Published
- 2006-12
- Volume
- 18
- Issue
- 4
- Pages
- 577-595
- ISSN
- 1041-6102 (ISSN-L)
- OpenAlex
- W2156427212
- Semantic Scholar
- dc598aa805fe13c96759fc70022c5cc76107f5b3
- Cited by
- 827
- References
- 26
- Citations by year
- 2026: 9 · 2025: 19 · 2024: 33 · 2023: 34 · 2022: 40 · 2021: 29 · 2020: 62 · 2019: 58 · 2018: 54 · 2017: 62 · 2016: 76 · 2015: 55 · 2014: 62 · 2013: 46 · 2012: 38
- FWCI
- 16.61
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Psychogeriatrics (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Funders
- National Institute on Aging (K01AG022072)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- dementia caregivers, caregiver interventions, caregiver burden, caregiver depression, subjective well-being, multicomponent intervention, psychoeducational intervention, cognitive behavioral therapy, institutionalization risk, caregiver education, caregiver support
- MeSH terms
- Aged, Aged, 80 and over, Alzheimer Disease, Combined Modality Therapy, Counseling, Depression, Female, Humans, Institutionalization, Male, Middle Aged, Outcome and Process Assessment, Health Care, Quality of Life, Respite Care, Social Support, Cognitive Behavioral Therapy, Caregivers, Cost of Illness, Case Management
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