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Supporting carers of people with dementia: What is effective?

  • Graham A. Jackson and Debbie Browne
Extract

Carer stress is well documented, especially in those caring for individuals with dementia. A recommendation of all national dementia strategies is to provide excellent support and information to informal carers of people with dementia. NICE guidance suggests that a range of tailored interventions, including psychological input, psychoeducation and training courses, should be offered to reduce caregiver burden and stress, although good-quality outcome-based evidence is lacking. On the basis of a narrative review of the literature, we describe individual and multicomponent carer support packages and discuss their evidence base, reflecting on outcomes for carers. Multicomponent interventions have the best evidence for effectiveness.

Learning Objectives

• Consider the risks of both physical and psychological harm experienced by carers of people with dementia (often referred to as carer burden or caregiver burden)

• Be aware of the interventions available for the support of carers of people with dementia

• Consider the evidence for the effectiveness of these interventions and be aware of the limitations of the evidence

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Copyright
Corresponding author
Correspondence Professor Graham Jackson, University of the West of Scotland, Hamilton Campus, Hamilton ML3 0JB, UK. Email: graham.jackson@uws.ac.uk
Footnotes
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Declaration of Interest

None

Footnotes
References
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Acton, GJ, Jeonghee, K (2001) Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Research in Nursing and Health, 24: 349–60.
Bartfay, E, Bartfay, W (2013) Quality-of-life outcomes among Alzheimer's disease family caregivers following community-based intervention. Western Journal of Nursing Research, 35: 98116.
Belle, SH, Burgio, L, Burns, R, 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: 727–38.
Boots, LMM, de Vugt, ME, van Knippenberg, RJM, et al (2014) A systematic review of internet-based supportive interventions for caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 29: 331–44.
Carbonneau, H, Caron, CD, Desrosiers, J (2011) Effects of an adapted leisure education program as a means of support for caregivers of people with dementia. Archives of Gerontology and Geriatrics, 53: 31–9.
Charlesworth, G, Shepstone, L, Wilson, E, et al (2008) Befriending carers of people with dementia: randomised controlled trial. BMJ, 336: 1295–7.
Chien, WT, Lee, IYM (2008) A disease management program for families of persons in Hong Kong with dementia. Psychiatric Services, 59: 433–6.
Chien, WT, Lee, IYM (2011) Randomized controlled trial of a dementia care programme for families of home-resided older people with dementia. Journal of Advanced Nursing, 67: 774–87.
Connell, CM, Janevic, MR (2009) Effects of a telephone-based exercise intervention for dementia caregiving wives: a randomized controlled trial. Journal of Applied Gerontology, 28: 171–94.
Connor, KI, McNeese-Smith, DK, Vickrey, BG, et al (2008) Determining care management activities associated with mastery and relationship strain for dementia caregivers. Journal of the American Geriatrics Society, 56: 891–7.
Cooper, C, Balamurali, TB, Livingston, G (2007) A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia. International Psychogeriatrics, 19: 175–95.
Cooper, C, Mukadam, N, Katona, C, et al (2012) Systematic review of the effectiveness of non-pharmacological interventions to improve quality of life of people with dementia. International Psychogeriatrics, 24: 856–70.
de Rotrou, J, Cantegreil, I, Faucounau, V, 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: 833–42.
Dias, A, Dewey, ME, D'Souza, J, et al (2008) The effectiveness of a home care program for supporting caregivers of persons with dementia in developing countries: a randomised controlled trial from Goa, India. PLoS ONE, 3: e2333.
Dröes, RM, Meiland, FJM, Schmitz, MJ, et al (2006) Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study. Aging and Mental Health, 10: 112–24.
Ducharme, FC, Levesque, LL, Lachance, LM, et al (2011) Learning to become a family caregiver; efficacy of an intervention program for caregivers following diagnosis of dementia in a relative. Gerontologist, 51: 484–94.
Eloniemi-Sulkava, U, Saarenheimo, M, Laakkonen, M-L, et al (2009) Family care as collaboration: effectiveness of a multicomponent support program for elderly couples with dementia. Randomized controlled intervention study. Journal of the American Geriatrics Society, 57: 2200–8.
Finkel, S, Czaja, SJ, Schulz, R, et al (2007) E-care: a telecommunications technology intervention for family caregivers of dementia patients. American Journal of Geriatric Psychiatry, 15: 443–8.
Fortinsky, RH, Kulldorff, M, Kleppinger, A, et al (2009) Dementia care consultation for family caregivers: collaborative model linking an Alzheimer's Association chapter with primary care physicians. Aging and Mental Health, 13: 162–70.
Gallagher-Thompson, D, Dupart, H, Jimenez, T, et al (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, 26: 286303.
Gallagher-Thompson, D, Wang, P, Liu, W, 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 and Mental Health, 14: 263–73.
Gant, JR, Steffen, AM, Lauderdale, SA (2007) Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia. American Journal of Alzheimer's Disease and Other Dementias, 22: 120–8.
Gitlin, LN, Winter, L, Dennis, MP, et al (2010) Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention. Journal of the American Geriatrics Society, 58: 1465–74.
Gitlin, LN, Marx, K, Stanley, IH, et al (2015) Translating evidence-based dementia caregiving interventions into practice: state-of-the-science and next steps. Gerontologist, 55: 210–26.
Glueckauf, RL, Davis, WS, Willis, F, et al (2012) Telephone-based, cognitive-behavioral therapy for African American dementia caregivers with depression: initial findings. Rehabilitation Psychology, 57: 124–39.
Hepburn, K, Lewis, M, Tornatore, J, et al (2007) The Savvy Caregiver program: the demonstrated effectiveness of a transportable dementia caregiver psychoeducation program. Journal of Gerontological Nursing, 33(3): 30–6.
Hirano, A, Suzuki, Y, Kuzuya, M (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: e15863.
Holland, JM, Currier, JM, Gallagher-Thompson, D (2009) Outcomes from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) program for bereaved caregivers. Psychology and Aging, 24: 190202.
Joling, KJ, van Marwijk, HW, van der Horst, HE (2012) Effectiveness of family meetings for family caregivers on delaying time to nursing home placement of dementia patients: a randomized trial. PLoS ONE, 7: e42145.
Kidd, LI, Zauszniewski, JA, Morris, DL (2011) Benefits of a poetry writing intervention for family caregivers of elders with dementia. Issues in Mental Health Nursing, 32: 598604.
Kurz, A, Wagenpfeil, S, Hallauer, J, et al (2010) Evaluation of a brief educational program for dementia carers: the AENEAS study. International Journal of Geriatric Psychiatry, 25: 861–9.
Lam, LCW, Lee, JSW, Chung, JCC, et al (2010) A randomized controlled trial to examine the effectiveness of case management model for community dwelling older persons with mild dementia in Hong Kong. International Journal of Geriatric Psychiatry, 25: 395402.
Lewis, SL, Miner-Williams, D, Novian, A, et al (2009) A stress-busting program for family caregivers. Rehabilitation Nursing Journal, 34: 151–9.
Liddle, J, Smith-Conway, ER, Baker, R, et al (2012) Memory and communication support strategies in dementia: effect of a training program for informal caregivers. International Psychogeriatrics, 24: 1927–42.
Livingston, G, Barber, J, Rapaport, P, 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, 347: f6276.
Livingston, G, Barber, J, Rapaport, P, et al (2014) Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: a single-blind, randomised, controlled trial. Lancet Psychiatry, 1: 485576.
Losada, AM-G, Márquez-González, M, 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: 1119–27.
Márquez-González, M, Losada, A, Izal, M, et al (2007) Modification of dysfunctional thoughts about caregiving in dementia family caregivers: description and outcomes of an intervention programme. Aging and Mental Health, 11: 616–25.
Meeuwsen, EJ, Melis, RJ, Van Der Aa, GC, et al (2012) Effectiveness of dementia follow-up care by memory clinics or general practitioners: randomised controlled trial. BMJ, 344: e3086.
Mittelman, MS, Roth, DL, Clay, OJ, et al (2007) Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry, 15: 780–9.
Mittelman, MS, Brodaty, H, Wallen, AS, et al (2008) A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with Alzheimer disease: effects on caregiver depression. American Journal of Geriatric Psychiatry, 16: 893904.
National Institute for Health and Care Excellence (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care (Updated 2016) (Clinical Guideline CG42). NICE.
Nichols, LO, Martindale-Adams, J, Burns, R, et al (2011) Translation of a dementia caregiver support program in a health care system – REACH VA. Archives of Internal Medicine, 171: 353–9.
Onor, ML, Trevisiol, M, Negro, C, et al (2007) Impact of a multimodal rehabilitative intervention on demented patients and their caregivers. American Journal of Alzheimer's Disease and Other Dementias, 22: 261–72.
Pinquart, M, Sorensen, S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging, 18: 250–67.
Simpson, R, Wakefield, P, Spiers, N, et al (2006) Carer-held records for dementia: a controlled trial. International Psychogeriatrics, 18: 259–68.
Spijker, A, Wollersheim, H, Teerenstra, S, et al (2011) Systematic care for caregivers of patients with dementia: a multicenter, cluster-randomized, controlled trial. American Journal of Geriatric Psychiatry, 19: 521–31.
Stella, F, Canonici, AP, Gobbi, S, et al (2011) Attenuation of neuropsychiatric symptoms and caregiver burden in Alzheimer's disease by motor intervention: a controlled trial. Clinics, 66: 1353–60.
Tanner, JA, Black, BS, Johnston, D (2015) A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes. American Journal of Geriatric Psychiatry, 23: 391402.
Tremont, G, Davis, JD, Bishop, DS (2008) Telephone-delivered psychosocial intervention reduces burden in dementia caregivers. Dementia, 7: 503–20.
Tremont, G, Davis, JD, Papandonatos, GD, et al (2015) Psychosocial telephone intervention for dementia caregivers: a randomized, controlled trial. Alzheimer's & Dementia, 11: 541–8.
Ulstein, I, Sandvik, L, Wyller, T, et al (2007) A one-year randomized controlled psychosocial intervention study among family carers of dementia patients: effects on patients and carers. Dementia and Geriatric Cognitive Disorders, 24: 469–75.
van Mierlo, LD, Meiland, FJ, Dröes, RM (2012) Dementelcoach: effect of telephone coaching on carers of community-dwelling people with dementia. International Psychogeriatrics, 24: 212–22.
Villareal-Reyna, M, Salazar-Gonzalez, BC, Cruz-Quevedo, JE, et al (2012) Outcomes of interventions for Alzheimer's family caregivers in Mexico. Western Journal of Nursing Research, 34: 973–90.
Waldorff, FB, Buss, DV, Eckermann, A, et al (2012) Efficacy of psychosocial intervention in patients with mild Alzheimer's disease: the multicentre, rater blinded, randomised Danish Alzheimer Intervention Study (DAISY). BMJ, 345: e4693.
Wang, LQ (2011) Randomised controlled trial of a family-led mutual support programme for people with dementia. Journal of Clinical Nursing, 20: 2362–6.
Winter, L, Gitlin, LN (2007) 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: 391–7.
Zhu, CW, Scarmeas, N, Ornstein, K, et al (2015) Health-care use and cost in dementia caregivers: longitudinal results from the Predictors Caregiver Study. Alzheimer's & Dementia, 11: 444–54.
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Supporting carers of people with dementia: What is effective?

  • Graham A. Jackson and Debbie Browne
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