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Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions

Published online by Cambridge University Press:  18 July 2018

Naoko Kishita ,
Laura Hammond ,
Celina M. Dietrich  and
Eneida Mioshi
Naoko Kishita*
Affiliation:
School of Health Sciences, University of East Anglia, Norwich, Norfolk, UK
Laura Hammond
Affiliation:
Research Development Programme, Norfolk and Suffolk NHS Foundation Trust, Norwich, Norwich, UK
Celina M. Dietrich
Affiliation:
Norwich Medical School, University of East Anglia, Norwich, Norfolk, UK
Eneida Mioshi
Affiliation:
School of Health Sciences, University of East Anglia, Norwich, Norfolk, UK
*
Correspondence should be addressed to: Dr. Naoko Kishita, School of Health Sciences, University of East Anglia, Norwich, Norfolk NR4 7TJ, UK. Phone: +44-1603-593599. Email: N.Kishita@uea.ac.uk.
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Abstract

Objective:

The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life).

Methods:

A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials.

Results:

The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety.

Conclusions:

Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

Keywords

caregiverdementiaAlzheimer's diseasepsychological interventionscognitive behavioral therapymeta-analysis
Type
Review Article
Information
International Psychogeriatrics , Volume 30 , Special Issue 11: Social Aspects of Dementia and Dementia Practice , November 2018 , pp. 1679 - 1696
Copyright
Copyright © International Psychogeriatric Association 2018 

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References

Abdollahpour, I., Nedjat, S., Salimi, Y., Noroozian, M. and Majdzadeh, R. (2015). Which variable is the strongest adjusted predictor of quality of life in caregivers of patients with dementia? Psychogeriatrics, 15, 51–57.Google Scholar
Al-Janabi, H., Coast, J. and Flynn, T. N. (2008). What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up. Social Science & Medicine, 67, 111–121.Google Scholar
Au, A. et al. (2010). The coping with caregiving group program for Chinese caregivers of patients with Alzheimer's disease in Hong Kong. Patient Education & Counseling, 78, 256–260.Google Scholar
Beck, A. T. (1967). Depression, Clinical, Experimental and Theoretical Aspects. New York, United States: Harper & Row, Hoeber Medical Division.Google Scholar
Beck, A. T. (1979). Cognitive Therapy of Depression. New York, United States: Guilford.Google Scholar
Belle, S. H. et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Annals of Internal Medicine, 145, 727–738.Google Scholar
Blom, M. M., Zarit, S. H., Groot Zwaaftink, R. B. M., Cuijpers, P. and Pot, A. M. (2015). Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial. PLoS One, 10, e0116622–e0116622.Google Scholar
Brouwer, W. B. F., van Exel, N. J. A., van Gorp, B. and Redekop, W. K. (2006). The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15, 1005–1021.Google Scholar
Chen, H.-M., Huang, M.-F., Yeh, Y.-C., Huang, W.-H. and Chen, C.-S. (2015). Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia. Psychogeriatrics: The Official Journal of The Japanese Psychogeriatric Society, 15, 20–25.Google Scholar
Chien, L.-Y. et al. (2011). Caregiver support groups in patients with dementia: a meta-analysis. International Journal of Geriatric Psychiatry, 26, 1089–1098.Google Scholar
Chien, W. T. and Lee, I. Y. M. (2011). Randomized controlled trial of a dementia care programme for families of home-resided older people with dementia. Journal of Advanced Nursing, 67, 774–787.Google Scholar
Chu, H. et al. (2011). The effects of a support group on dementia caregivers' burden and depression. Journal of Aging and Health, 23, 228–241.Google Scholar
Collins, R. N. and Kishita, N. (2018). The effectiveness of mindfulness- and acceptance-based interventions for informal caregivers of people with dementia: a meta-analysis. The Gerontologist. Epublished ahead of print, doi:10.1093/geront/gny024.Google Scholar
Connell, C. M. and Janevic, M. R. (2009). Effects of a telephone-based exercise intervention for dementia caregiving wives: a randomized controlled trial. Journal of Applied Gerontology: The Official Journal of The Southern Gerontological Society, 28, 171–194.Google Scholar
Cooper, C., Balamurali, T. B. S. and Livingston, G. (2007). A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia. International Psychogeriatrics, 19, 175–195.Google Scholar
Cristancho-Lacroix, V., Wrobel, J., Cantegreil-Kallen, I., Dub, T., Rouquette, A. and Rigaud, A.-S. (2015). A web-based psychoeducational program for informal caregivers of patients with Alzheimer's disease: a pilot randomized controlled trial. Journal of Medical Internet Research, 17, e117–e117.Google Scholar
Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: a systematic review. Aging & Mental Health, 9, 325–330.Google Scholar
Danucalov, M. A. D. et al. (2013). A yoga and compassion meditation program reduces stress in familial caregivers of Alzheimer's disease patients. Evidence-Based Complementary and Alternative Medicine: Ecam, 2013, 513149–513149.Google Scholar
de Rotrou, J. et al. (2011). Do patients diagnosed with Alzheimer's disease benefit from a psycho-educational programme for family caregivers? A randomised controlled study. International Journal of Geriatric Psychiatry, 26, 833–842.Google Scholar
Dindo, L., Liew, J. and Arch, J. (2017). Acceptance and commitment therapy: a transdiagnostic behavioral intervention for mental health and medical conditions. Neurotherapeutics, 14, 546–555.Google Scholar
Elvish, R., Lever, S.-J., Johnstone, J., Cawley, R. and Keady, J. (2013). Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence. Counselling & Psychotherapy Research, 13, 106–125.Google Scholar
Finkel, S., Czaja, S. J., Schulz, R., Martinovich, Z., Harris, C. and Pezzuto, D. (2007). E-care: a telecommunications technology intervention for family caregivers of dementia patients. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 15, 443—448.Google Scholar
Gallagher-Thompson, D. and Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22, 37–51.Google Scholar
Gallagher-Thompson, D., Gray, H. L., Dupart, T., Jimenez, D. and Thompson, L. W. (2008). Effectiveness of cognitive/behavioral small group intervention for reduction of depression and stress in non-hispanic white and hispanic/latino women dementia family caregivers: outcomes and mediators of change. Journal of Rational-Emotive and Cognitive-Behavior Therapy: RET, 26, 286–303.Google Scholar
Gallagher-Thompson, D. et al. (2010). Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: results of a preliminary study. Aging & Mental Health, 14, 263–273.Google Scholar
Gaugler, J. E., Reese, M. and Sauld, J. (2015). A pilot evaluation of psychosocial support for family caregivers of relatives with dementia in long-term care: the residential care transition module. Research in Gerontological Nursing, 8, 161–172.Google Scholar
Gavrilova, S. I., Ferri, C. P., Mikhaylova, N., Sokolova, O., Banerjee, S. and Prince, M. (2009). Helping carers to care–the 10/66 dementia research group's randomized control trial of a caregiver intervention in Russia. International Journal of Geriatric Psychiatry, 24, 347–354.Google Scholar
Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N. and Hauck, W. W. (2010). Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention. Journal of the American Geriatrics Society, 58, 1465–1474.Google Scholar
Glueckauf, R. L. et al. (2007). Telephone-based cognitive-behavioral intervention for distressed rural dementia caregivers: initial findings. Clinical Gerontologist, 31, 21–41.Google Scholar
Gonzalez, E. W., Polansky, M., Lippa, C. F., Gitlin, L. N. and Zauszniewski, J. A. (2014). Enhancing resourcefulness to improve outcomes in family caregivers and persons with Alzheimer's disease: a pilot randomized trial. International Journal of Alzheimer's Disease, 2014, 323478–323478.Google Scholar
Gorno-Tempini, M. L. et al. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76, 1006–1014.Google Scholar
Guerra, M., Ferri, C. P., Fonseca, M., Banerjee, S. and Prince, M. (2011). Helping carers to care: the 10/66 dementia research group's randomized control trial of a caregiver intervention in Peru. Revista Brasileira De Psiquiatria (Sao Paulo, Brazil: 1999), 33, 47–54.Google Scholar
Hayes, S. C., Follette, V. M. and Linehan, M. M. (2004). Mindfulness and Acceptance: Expanding the Cognitive-Behavioral Tradition. New York, NY, USA: Guilford Press.Google Scholar
Hayes, S. C., Strosahl, K. D. and Wilson, K. G. (1999). Acceptance and Commitment Therapy: An Experiential Approach to Behavior Change. New York, NY, USA: Guilford Press.Google Scholar
Hirano, A., Suzuki, Y., Kuzuya, M., Onishi, J., Ban, N. and Umegaki, H. (2011). Influence of regular exercise on subjective sense of burden and physical symptoms in community-dwelling caregivers of dementia patients: a randomized controlled trial. Archives of Gerontology and Geriatrics, 53, e158–e163.Google Scholar
Jensen, M., Agbata, I. N., Canavan, M. and McCarthy, G. (2015). Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: systematic review and meta-analysis of randomised controlled trials. International Journal of Geriatric Psychiatry, 30, 130–143.Google Scholar
Joling, K. J., O'Dwyer, S. T., Hertogh, C. M. P. M. and van Hout, H. P. J. (2017). The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years. International Journal of Geriatric Psychiatry.Google Scholar
Joling, K. J. et al. (2012). Does a family meetings intervention prevent depression and anxiety in family caregivers of dementia patients? A randomized trial. PLoS One, 7, e30936–e30936.Google Scholar
Jones, C., Edwards, R. T. and Hounsome, B. (2012). Health economics research into supporting carers of people with dementia: a systematic review of outcome measures. Health and Quality of Life Outcomes, 10, 142–142.Google Scholar
Karlsson, P. and Bergmark, A. (2015). Compared with what? An analysis of control-group types in cochrane and campbell reviews of psychosocial treatment efficacy with substance use disorders. Addiction, 110, 420–428.Google Scholar
Kurz, A., Wagenpfeil, S., Hallauer, J., Schneider-Schelte, H. and Jansen, S. (2010). Evaluation of a brief educational program for dementia carers: the AENEAS study. International Journal of Geriatric Psychiatry, 25, 861–869.Google Scholar
Kwok, T., Wong, B., Ip, I., Chui, K., Young, D. and Ho, F. (2013). Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial. Clinical Interventions in Aging, 8, 1191–1197.Google Scholar
Leach, M. J., Francis, A. and Ziaian, T. (2015). Transcendental Meditation for the improvement of health and wellbeing in community-dwelling dementia caregivers [TRANSCENDENT]: a randomised wait-list controlled trial. BMC Complementary and Alternative Medicine, 15, 145–145.Google Scholar
Liddle, J. et al. (2012). Memory and communication support strategies in dementia: effect of a training program for informal caregivers. International Psychogeriatrics, 24, 1927–1942.Google Scholar
Lins, S. et al. (2014). Efficacy and experiences of telephone counselling for informal carers of people with dementia. The Cochrane Database of Systematic Reviews, CD009126. doi:10.1002/14651858.CD009126.pub2.Google Scholar
Livingston, G. et al. (2013). 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. BMJ (Clinical Research Ed.), 347, f6276–f6276.Google Scholar
Losada, A., Márquez-González, M. and Romero-Moreno, R. (2011). Mechanisms of action of a psychological intervention for dementia caregivers: effects of behavioral activation and modification of dysfunctional thoughts. International Journal of Geriatric Psychiatry, 26, 1119–1127.Google Scholar
Losada, A. et al. (2015). Cognitive–behavioral therapy (CBT) versus acceptance and commitment therapy (ACT) for dementia family caregivers with significant depressive symptoms: results of a randomized clinical trial. Journal of Consulting and Clinical Psychology, 83, 760–772.Google Scholar
Losada, A. et al. (2006). Cross-cultural study comparing the association of familism with burden and depressive symptoms in two samples of Hispanic dementia caregivers. Aging & Mental Health, 10, 69–76.Google Scholar
Mahoney, R., Regan, C., Katona, C. and Livingston, G. (2005). Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. The American Journal of Geriatric Psychiatry, 13, 795–801.Google Scholar
Márquez-González, M., Losada, A., Izal, M., Pérez-Rojo, G. and Montorio, I. (2007). Modification of dysfunctional thoughts about caregiving in dementia family caregivers: description and outcomes of an intervention programme. Aging & Mental Health, 11, 616–625.Google Scholar
Martín-Carrasco, M., Domínguez-Panchón, A. I., González-Fraile, E., Muñoz-Hermoso, P. and Ballesteros, J. (2014). Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: the EDUCA-II randomized trial. Alzheimer Disease and Associated Disorders, 28, 79–87.Google Scholar
Martín-Carrasco, M. et al. (2009). Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers. International Journal of Geriatric Psychiatry, 24, 489–499.Google Scholar
Martindale-Adams, J., Nichols, L. O., Burns, R., Graney, M. J. and Zuber, J. (2013). A trial of dementia caregiver telephone support. The Canadian Journal Of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmieres, 45, 30–48.Google Scholar
Mioshi, E., Bristow, M., Cook, R. and Hodges, J. R. (2009). Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 27, 76–81.Google Scholar
Montoro-Rodriguez, J. and Gallagher-Thompson, D. (2009). The role of resources and appraisals in predicting burden among Latina and non-Hispanic white female caregivers: a test of an expanded socio-cultural model of stress and coping. Aging & Mental Health, 13, 648–658.Google Scholar
Nunnemann, S., Kurz, A., Leucht, S. and Diehl-Schmid, J. (2012). Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions. International Psychogeriatrics, 24, 1368–1386.Google Scholar
O'Dwyer, S. T., Moyle, W., Zimmer-Gembeck, M. and De Leo, D. (2016). Suicidal ideation in family carers of people with dementia. Aging & Mental Health, 20, 222–230.Google Scholar
Ostojic, D., Vidovic, D., Bacekovic, A., Brecic, P. and Jukic, V. (2014). Prevalence of anxiety and depression in caregivers of Alzeheimer's dementia patients. Acta Clinica Croatica, 53, 17–21.Google Scholar
Pahlavanzadeh, S., Heidari, F. G., Maghsudi, J., Ghazavi, Z. and Samandari, S. (2010). The effects of family education program on the caregiver burden of families of elderly with dementia disorders. Iranian Journal of Nursing and Midwifery Research, 15, 102–108.Google Scholar
Pinquart, M. and Sörensen, S. (2006). Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics, 18, 577–595.Google Scholar
Radloff, L. (1977). The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.Google Scholar
Rascovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain: A Journal of Neurology, 134, 2456–2477.Google Scholar
Reed, C. et al. (2017). How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer's disease? Health and Quality of Life Outcomes, 15, 16–16.Google Scholar
Scott, J. L. et al. (2016). Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers. Aging & Mental Health, 20, 793–803.Google Scholar
Sepe-Monti, M., Vanacore, N., Bartorelli, L., Tognetti, A. and Giubilei, F. (2016). The savvy caregiver program: a probe multicenter randomized controlled pilot trial in caregivers of patients affected by Alzheimer's disease. Journal of Alzheimer's Disease: JAD, 54, 1235–1246.Google Scholar
Skevington, S. M., Lotfy, M., O'Connell, K. A. and Group, W. (2004). The world health organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13, 299–310.Google Scholar
Stansfeld, J., Stoner, C. R., Wenborn, J., Vernooij-Dassen, M., Moniz-Cook, E. and Orrell, M. (2017). Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review. International Psychogeriatrics, 29, 1281–1296.Google Scholar
Stirling, C. et al. (2012). Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Medical Informatics and Decision Making, 12, 21–21.Google Scholar
Tremont, G., Davis, J. D., Bishop, D. S. and Fortinsky, R. H. (2008). Telephone-delivered psychosocial intervention reduces burden in dementia caregivers. Dementia (London, England), 7, 503–520.Google Scholar
Vernooij-Dassen, M., Draskovic, I., McCleery, J. and Downs, M. (2011). Cognitive reframing for carers of people with dementia. The Cochrane Database of Systematic Reviews, CD005318. doi:10.1002/14651858.CD005318.pub2.Google Scholar
Wallace, B. C., Dahabreh, I. J., Trikalinos, T. A., Lau, J., Trow, P. and Schmid, C. H. (2012). Closing the gap between methodologists and end-users: r as a computational back-end. Journal of Statistical Software, 1, 1–15.Google Scholar
Wang, L.-Q. and Chien, W.-T. (2011). Randomised controlled trial of a family-led mutual support programme for people with dementia. Journal of Clinical Nursing, 20, 2362–2366.Google Scholar
Wang, L.-Q., Chien, W.-T. and Lee, I. Y. M. (2012). An experimental study on the effectiveness of a mutual support group for family caregivers of a relative with dementia in mainland China. Contemporary Nurse, 40, 210–224.Google Scholar
Ware, J. Jr., Kosinski, M. and Keller, S. D. (1996). A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34, 220–233.Google Scholar
Winter, L. and Gitlin, L. N. (2006). Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia. American Journal of Alzheimer's Disease and Other Dementias, 21, 391–397.Google Scholar
Xiao, L. D., De Bellis, A., Kyriazopoulos, H., Draper, B. and Ullah, S. (2016). The effect of a personalized dementia care intervention for caregivers from Australian minority groups. American Journal of Alzheimer's Disease and Other Dementias, 31, 57–67.Google Scholar
Yon, A. and Scogin, F. (2007). Procedures for identifying evidence-based psychological treatments for older adults. Psychology and Aging, 22, 4–7.Google Scholar
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649–655.Google Scholar
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