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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]
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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
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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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Citations
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Entender e envolver: avaliando dois objetivos de um programa para cuidadores de idosos com Alzheimer
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“Nesse sentido, as intervenções psicoeducativas vêm contribuindo para permitir reduções na percepção de sobrecarga por parte do cuidador e, por esse motivo, são ferramentas importantes para suprir essa demanda (Marim, Silva, Taminato, & Barbosa, 2013; Pinquart & Sörensen, 2006).”
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“…caregivers, several individual and broad-spectrum, multicomponent interventions are available, ranging from respite care and psychoeducation to telephone support and community support groups (Belle et al. 2006; Chien et al. 2011; Pinquart and S€orensen 2006; Salfi, Ploeg, and Black 2005).”
BackgroundA mixed-methods evaluation of a supporting app for informal caregivers of people with dementia
Rettinger, L., Zeuner, L., Werner, K., Ritschl, V., Mosor, E., Stamm, T., Haslinger‐Baumann, E., & Werner, F. (2020) · International Conference on PErvasive Technologies Related to Assistive Environments (PETRA) · doi:10.1145/3389189.3397981 · Cited by 11
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“There is evidence that these effects can be maintained for up to 11 months post-intervention (Pinquart and Sörensen 2006).”
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“Finally, because there is a higher percentage of female among care-givers (Bednarek et al., 2016; Pinquart & Sörensen, 2006), we investigated whether gender is a factor associated with burden.”
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“…through caregiver interventions; though, caregiver burden outcomes vary consistently between studies (Acton & Kang, 2001; Brodaty et al., 2003; Cheng et al., 2020; Chien et al., 2011; Chu et al., 2011; Parker et al., 2008; Pinquart & Sorensen, 2006; Schulz et al., 2002; Walter & Pinquart, 2019).”
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“In addition, the magnitude of effects for most available treatments is small, which highlights the need for both improved quality of treatment interventions for caregivers (Pinquart & Sörensen, 2006) and the development of effective preventive strategies.”
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Caring for a Dying Partner: The Male Experience
Judd, R. G., Guy, H., & Howard, R. A. (2018) · Journal of Palliative Care · doi:10.1177/0825859718774679 · Cited by 13
Admiral Nurse Case Management: A Model of Caregiver Support for Families Affected by Dementia
Dening, K. H., & Aldridge, Z. (2019) · OBM Geriatrics · doi:10.21926/obm.geriatr.1902053 · Cited by 10
Fernández, E., Blake, C. M., Mackey, L. M., Silva, P. A., Power, D., O’Shea, D., & Caulfield, B. M. (2020) · JMIR Aging · doi:10.2196/15600 · Cited by 10
“This wide variety of interventions leads to difficulties in comparing the different types of studies [36].”
BackgroundInfluentialMcAuliffe, L. P., Wright, B. J., & Kinsella, G. (2020) · The International Journal of Aging and Human Development · doi:10.1177/0091415020933244 · Cited by 12
“…an active skill- building component have been shown to achieve the greatest effects (Clare & Woods, 2004; Kishita et al., 2018; Parker et al., 2008; Pinquart & Sörensen, 2006); although, the psychological mechanism underlying this finding is unclear, with few intervention studies underpinned by an…”
BackgroundChua, J., & Pachana, N. A. (2015) · Clinical Gerontologist · doi:10.1080/07317115.2015.1101634 · Cited by 10
“…to the subjective experience of caregiver burden; d) combination of education and training that promote active participation of caregivers; and e) involvement of both caregivers and their care recipients (Brodaty et al., 2003; Pinquart & Sörensen, 2006; Selwood et al., 2007; Zarit & Femia, 2008).”
BackgroundFamilia cuidadora y enfermedad de Alzheimer: una revisión bibliográfica
Esandi, N., & Canga, A. (2011) · Gerokomos · doi:10.4321/s1134-928x2011000200002 · Cited by 10
Lukas, A., Kilian, R., Hay, B., Muche, R., Arnim, C. A. F. V., Otto, M., Riepe, M. W., Jamour, M., Denkinger, M. D., & Nikolaus, T. (2012) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-012-0337-z · Cited by 10
Das subjektive Wohlbefinden von pflegenden Angehörigen nach einer Trainings- und Erholungswoche
Hetzel, C., Opfermann-Kersten, M., & Holzer, M. S. (2016) · Zeitschrift für Gesundheitspsychologie · doi:10.1026/0943-8149/a000155 · Cited by 10
Bunn, F., Pinkney, E., Drennan, V. M., & Goodman, C. M. (2013) · University of Hertfordshire Research Archive (University of Hertfordshire) · Cited by 10
Barrero-Mejias, M. A., Martínez, S. G., González-Moreno, J., Rueda-Extremera, M., Izquierdo-Sotorrío, E., & Cantero-García, M. (2024) · Frontiers in Medicine · doi:10.3389/fmed.2024.1394640 · Cited by 13
Maximizing a Nurturing Care Style for Persons with Dementia: A Person-Centered Analysis
Hong, S.-I., Luo, N., & Yap, P. L. K. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2013.01.034 · Cited by 9
Anxiety and Related Symptoms in Older Persons With Dementia: Directions for Practice
McClive-Reed, K. P., & Gellis, Z. D. (2010) · Journal of Gerontological Social Work · doi:10.1080/01634372.2010.524284 · Cited by 10
“CBT to address anxiety has historically been used to treat caregivers rather than persons with dementia ( Pinquart & Sorensen, 2006 ; Selwood et al, 2007 ).”
Parra, N. S. L., Molina, I. Q. C., Díaz, M. F. L., Torres, L. L., & Rojas, J. C. B. (2015) · Revista de la Facultad de Medicina · doi:10.15446/revfacmed.v63n3sup.47818 · Cited by 9
“Finalmente, se confirma que los programas de formación para cuidadores, en los cuales se brinda capacitación en temas que puedan ser aplicados en sus labores cotidianas y que ayuden a cualificar la tarea del cuidado, contribuyen a mejorar la calidad de vida y disminuir los problemas emocionales (29).”
BackgroundEfficacy of Cognitive Behavior Therapy among Caregivers of Dementia: An Outcome Study
Ali, S. A., & Bokharey, I. Z. (2015) · Pakistan Journal of Psychological Research · Cited by 9
Toward a Family-Sensitive Practice in Dementia
Gonçalves‐Pereira, M. (2016) · Neuropsychiatric symptoms of neurological disease · doi:10.1007/978-3-319-39138-0_16 · Cited by 9
Association between burden and depression in caregivers of dementia patients
Kršíková, T., & Zeleníková, R. (2018) · Central European Journal of Nursing and Midwifery · doi:10.15452/cejnm.2018.09.0017 · Cited by 10
Gesundheitsvorstellungen und Gesundheitshandeln pflegender Angehöriger von Menschen mit Demenz
Hampel, S. (2019) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-019-01665-6 · Cited by 9
Evde Sağlık Hizmeti Alan Hastaların Bakım Verenlerinde Bakım Yükü
Dağdeviren, T. S., Demir, N., Adahan, D., Dağdeviren, M., & Tekin, O. (2020) · Turkish Journal of Family Medicine & Primary Care · doi:10.21763/tjfmpc.730172 · Cited by 9
Hall, S., & Holtslander, L. F. (2022) · Canadian Geriatrics Journal · doi:10.5770/cgj.25.604 · Cited by 11
“In fact, many of the recommendations offered by participants have already been validated as interventions for caregivers.(28-30) A previous study identified that caregivers prioritized wanting to learn first aid for orientation to the caregiving role.”
BackgroundGraessel, E., Römer, H., & Donath, C. (2009) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-009-0034-8 · Cited by 9
Evaluating a Multicomponent Caregiver Intervention
Huynh-Hohnbaum, A.-L. T., Villa, V. M., Aranda, M., & Lambrinos, J. (2008) · Home Health Care Services Quarterly · doi:10.1080/01621420802589777 · Cited by 9
“Caregiver knowledge is most beneficial, however, if the caregiver plays a more active role in knowledge acquisition (eg, application of information through role-playing and/or homework; Pinquart & Sorenson, 2006 ).”
BackgroundMackenzie, C. S., Wiprzycka, U. J., Khatri, N., & Cheng, J. (2013) · Journal of Gerontological Social Work · doi:10.1080/01634372.2013.834857 · Cited by 9
“Pinquart and Sorensen (2006) examined the percentage of caregiver versus control participants who experienced above average improvements in caregiver burden, depression, subjective wellbeing, ability/knowledge, and care recipient neuropsychiatric symptoms.”
BackgroundLeven, N. V., de Lange, J., van der Ploeg, E., & Pot, A. M. (2018) · Clinical Interventions in Aging · doi:10.2147/cia.s160363 · Cited by 9
Rice, D. B., Cañedo-Ayala, M., Carboni-Jiménez, A., Carrier, M., Cumin, J., Malcarne, V. L., Hagedoorn, M., Thombs, B. D., & Scleroderma Caregiver Advisory Team (2019) · Disability and Rehabilitation · doi:10.1080/09638288.2018.1557268 · Cited by 9
Teles, S., Ferreira, A., & Paúl, C. (2020) · Health & Social Care in the Community · doi:10.1111/hsc.13227 · Cited by 9
Aakhus, E., Engedal, K., Aspelund, T., & Selbæk, G. (2008) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.2102 · Cited by 9
“Other interventions toward family caregivers, such as Cognitive-Behavioural Therapy and respite care have been described (for a review, see Pinquart and Sörensen, 2006) Case management aimed at caregivers of people with Alzheimer’s disease has been shown to reduce hospital admission of caregivers…”
MethodMindfulness-Based Intervention for Caregivers of Frail Older Chinese Adults: A Study Protocol
Lo, H. H. M., Au, A., Cho, W. V., Lau, E. N. S., Wong, J. Y. H., Wong, S. Y. S., & Yeung, J. W. K. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph19095447 · Cited by 8
“Psychoeducation interventions were often based on the assumption that caregivers would benefit from structured knowledge about caregiving and should apply them into their caregiving problems based on positive values of problem-focused coping [30].”
BackgroundMartínez-Melero, I., Ruiz-García, M., Ruíz-Merino, G., & García-Rubio, A. (2025) · Geriatric Nursing · doi:10.1016/j.gerinurse.2025.103513 · Cited by 10
Saylor, M. A., Pavlovic, N., DeGroot, L. G., Jajodia, A., Hladek, M. D., Perrin, N., Wolff, J. L., Davidson, P. M., & Szanton, S. L. (2022) · Contemporary Clinical Trials Communications · doi:10.1016/j.conctc.2022.100917 · Cited by 9
Risch, A. K., Mund, M., & Wilz, G. (2022) · Clinical Gerontologist · doi:10.1080/07317115.2022.2153775 · Cited by 8
“…that family caregivers of people with dementia have increased rates of depressive symptoms and anxiety (Collins & Kishita, 2019; Kaddour & Kishita, 2019), lower quality of life (Alzheimer’s Disease International, 2019; Kurz & Wilz, 2011), and higher rates of morbidity (Pinquart & Sörensen, 2006).”
BackgroundDemenzservicestellen der M.A.S Alzheimerhilfe Österreich
Auer, S., Span, E., Donabauer, Y., Reitner, M., & Helm, G. (2007) · Zeitschrift für Gerontopsychologie & -psychiatrie · doi:10.1024/1011-6877.20.4.257 · Cited by 8
Trabajo Social y cuidadores informales: análisis de la situación actual y propuesta de intervención
Fernández, M. C. F., & Gutiérrez, L. M. (2014) · Trabajo Social Hoy · doi:10.12960/tsh.2014.0002 · Cited by 8
The dement in the community: Social work practice with people with dementia revisited
Manthorpe, J. (2014) · Dementia · doi:10.1177/1471301214554810 · Cited by 8
“Interestingly, this case work approach in dementia services continues today around people’s difficulties in holding on to valued social roles but there is also current interest in the efficacy of group and peer support (Pinquart & Sorensen, 2006).”
BackgroundVázquez, F. L., Torres, Á., Fernández, O. D., Páramo, M., Otero, P., Blanco, V., & López, L. (2018) · Trials · doi:10.1186/s13063-018-2793-2 · Cited by 8
“Depressive symptoms as a secondary outcome will be evaluated with CES-D, which is the most widely used instrument for assessing depressive symptoms in the caregiver population [45].”
MethodRisk Factors of High Burden Caregivers of Dementia Patients Institutionalized at Day-Care Centres
Maseda, A., González‐Abraldes, I., de Labra, C., López, J. M. M., Sánchez, A., & Millán-Calentí, J. C. (2014) · Community Mental Health Journal · doi:10.1007/s10597-014-9795-7 · Cited by 8
Les aidants familiaux, le chronic care model et la dignité de la dépendance
Hazif‐Thomas, C., Tritschler-LeMaître, M.-H., & Thomas, P. (2012) · NPG. Neurologie, psychiatrie, gériatrie/NPG · doi:10.1016/j.npg.2012.03.003 · Cited by 8
Qualls, S. H., & Anderson, L. N. (2009) · Psychiatric Annals · doi:10.3928/00485713-20090821-07 · Cited by 9
Garriga, O. T., Costa, S. F., Terré, A. P., & Amat, P. B. (2018) · Revista Española de Geriatría y Gerontología · doi:10.1016/j.regg.2017.12.002 · Cited by 10
Lebensqualität älterer pflegender Angehöriger von Demenzerkrankten
Conrad, I., Alltag, S., Matschinger, H., Kilian, R., & Riedel-Heller, S. G. (2018) · Der Nervenarzt · doi:10.1007/s00115-018-0510-8 · Cited by 8
“Jedochscheint gerade die LQ der pA einen wichtigen Aspekt darzustellen, um dem Wunsch vieler Pflegebedürftiger nachzukommen [10], so lange wie möglich im häuslichen Umfeld zu verbleiben und dort gepflegt zu werden [2].”
LIFE: International Journal of Health and Life-Sciences
Ghedadba, N., Hambaba, L., Fercha, N., Bousselsela, H., Abdessemed, S., Mokhtar, S. M. O., & Unité de Biodiversité et Valorisation des Ressources Végétales (BVRV) – Faculté des Sciences et Techniques (FST)- Université des Sciences, D. T. E. D. M. (. N. (2016) · LIFE International Journal of Health and Life-Sciences · doi:10.20319/lijhls.2016.s21.253258 · Cited by 8
Chiu, M. (2008) · TSpace (University of Toronto) · Cited by 8
Thomas, C. (2012) · TSpace (University of Toronto) · Cited by 8
Rumiación y fusión cognitiva en el cuidado familiar de personas con demencia
Romero-Moreno, R., Márquez-González, M., Losada, A., Fernández-Fernández, V., & Nogales-González, C. (2015) · Revista Espanola de Geriatria y Gerontologia · doi:10.1016/j.regg.2015.02.007 · Cited by 7
Woodford, J., Farrand, P., Richards, D., & Llewellyn, D. J. (2013) · Systematic Reviews · doi:10.1186/2046-4053-2-9 · Cited by 7
“Where this focus has been included within the meta-analysis as treatment moderators, psychological treatments mostly consistent with elements of cognitive behavioural therapy (CBT) have been identified to have a small effect on caregiver depression [24,28].”
Vázquez, F. L., Torres, Á., Díaz, O., Otero, P., Blanco, V., & Hermida, E. (2015) · BMC Psychiatry · doi:10.1186/s12888-015-0682-8 · Cited by 7
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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