Present by Dr Phuong Leung Dr Vasiliki Orgeta Professor Martin Orrell. Division of Psychiatry University College London

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The effects of carer involvement in cognitionbased interventions (CBIs) for people with dementia on carer wellbeing: a systematic review and meta-analysis Present by Dr Phuong Leung Dr Vasiliki Orgeta Professor Martin Orrell Division of Psychiatry University College London

Overview of the presentation 1. Background 2. Aims 3. Methods 4. Results 5. Discussion 6. Conclusion

Background CBIs have been developed to improve cognition and enhance the quality of life (QoL) of people with dementia. CBIs provides an environment for carers to interact and understand the cognitive needs of the person with dementia. Carers may report increased depressive symptoms when they participate in CBIs alongside their relative. Dyadic interpersonal interactions play a major role in the dementia caregiving process.

A theoretical framework of carer involvement in CBIs for people with dementia

Systematic review Aims To investigate the effects of carer involvement in CBIs for people with dementia on carer wellbeing Methods Inclusion criteria Types of study Carers were involved in CBIs for the person with dementia. Randomised controlled trials (RCT) that provided results (i.e. means, standard deviations, t-test or F-test, p and n values). Ongoing trials were included if data were available

Types of participants Carers of people with dementia (e.g. people with dementia had a diagnosis of Alzheimer s disease (AD), vascular dementia (VaD) or mixed dementia. Any setting (e.g. community, day centre or care home). Types of intervention Cognitive Stimulation (CS) Cognitive rehabilitation (CR) Cognitive training (CT) Multicomponent-CBIs

Three types of CBI for people with dementia (Clare 2004) Intervention type Aim Intervention Cognitive Stimulation (CS) Cognitive Rehabilitation (CR) Enhancement of cognition & social function Enhance well-being & improve daily functioning Provides a range of general mentally stimulation activities and discussion, often in a social setting. Set goals to identify an individual s needs (i.e. associated with cognitive difficulty) and develop strategies to address these needs. Cognitive Training (CT) Maintain & enhance cognitive function Provides guided practice on standardised tasks of memory, attention, or executive function (i.e. problem solving)

Outcomes Primary outcomes: Carer well-being (including QoL, mood and physical and mental health) Secondary outcomes: Caregiving relationship and carer burden Search methods and identification of studies Medline, Embase, Pubmed, PsycINFO, CINAHL, Alois, The Cochrane Library, Clinical Trials Government,

Terms People with dementia, dementia, dementia*, Alzheimer*, Alzheimer s disease, cognitive impairment, cognitive stimulation, cognitive rehabilitation, cognitive training, cognitive support, reality orientation, rehabilitation training and cognitive psychostimulation, carer, caregiver*, randomised controlled trial or random*. Data extraction and management Two reviewers extracted data independently by using a standardised data extraction form. Differences in the quality ratings of the papers were resolved by the third reviewer to reach a consensus.

Analyses Effect size Hedges g of continuous data was calculated as the standardised mean difference with 95% confidence intervals (CIs) between the intervention and control groups. Quality assessment of included studies The Cochrane Risk of Bias Tool (Cochrane Handbook for Systematic Reviews of Interventions) (Higgins and Green, 2008).

Result Flow diagram Records identified through databases (=4721) Additional records identified through other sources (n=16) Records after duplicates removed (n=4030) Records after duplicates removed (n=3712) Excluded (n=3728) Records screened via abstracts & full text (n=302) Full text articles assessed for eligibility (n=45) Studies met inclusion criteria (n=9) Records excluded (n=36) - RCTs with no carer involvement - Not RCTs with carer involvement - RCTs with carer involvement, but carer outcomes were not examined - Ongoing trial no carer involvement Ongoing trial (n=1)

Included studies Carers delivered/led the CBI Quayhagen (2000) Individual cognitive training Onder (2005) Individual cognitive stimulation Orrell (2012) Individual cognitive stimulation Neely (2009) Individual cognitive training Therapists delivered the CBI plus carers attended some sessions Therapists delivered the CBI plus carers repeated some activities at home Clare (2010) Individual cognitive rehabilitation Kurz (2012) Group cognitive rehabilitation Bottino (2005) Group cognitive stimulation Onor (2007) Group cognitive stimulation

Carer outcome measures Primary outcome measures Carer quality of life. Short Form Health Survey Questionnaire-12 items (SF-12) (Ware et al., 1996) Life Satisfaction Philadelphia Geriatric Center Morale Scales (PGCMS) (Lawton et al., 1982). Carer anxiety/depression The subscales of the Brief Symptom Inventory (Derogatis and Melisaratos, 1983) Hamilton Rating Scale to measure anxiety (Hamilton, 1959) and depressive symptoms (Hamilton, 1967)

Secondary outcome measures The carer/person with dementia relationship. Marital Needs Satisfaction Scale (Stinnett et al., 1970) Carer Patient Relationship Scale (Spruytte et al., 2002) Carer burden/relative stress Caregiver Burden Inventory (Novak and Guest, 1989) Zarit Burden Interview (Zarit et al., 1980) Relative s Stress Scale (Greene et al., 1982)

Results Effects of carer involvement in CBIs for people with dementia Seven included studies with 803 dyads were included in the metaanalysis. A study of Neely (2009) was not included in this metaanalysis due to data not being available. Carer involvement in CBIs for people with dementia had a beneficial effect on carers wellbeing with effect size Hedges g = 0.22 and p = 0.03.

Carers depression levels were reduced in the intervention group with effect size Hedges g = 0.17 and p = 0.03.

No significant differences were observed in levels of anxiety symptoms, caregiving relationship and carer burden in the intervention group compared to those in the control group Discussion Carer involvement in CBIs improves carer quality of life and reduces carers depressive symptoms. There remains a lack of quality, consistency of results and small sample size in some studies.

A combination of different interventions, various types of carer involvement and duration, intensity and follow-up of the intervention makes results difficult to interpret. The findings should be interpreted with caution. Conclusion CBIs are designed to deliver benefit for people with dementia, the collateral benefits for carers have potential implications for developing interventions to support people with dementia and their carers. Future research should examine the effects of carer involvement where people with dementia in the control group also receive CBIs.

References: Bottino, C. M., Carvalho, I. A., Alvarez, A. M., Avila, R., Zukauskas, P. R., Bustamante, S. E.,Camargo, C. H. (2005). Cognitive rehabilitation combined with drug treatment in Alzheimer's disease patients: a pilot study. Clinical Rehabilitation, 19(8), 861-869. Cartwright, J. C., Archbold, P. G., Stewart, B. J., & Limandri, B. (1994). Enrichment processes in family caregiving to frail elders. ANS Adv Nurs Sci, 17(1), 31-43. Cavanaugh, J. C., Dunn, N. J., Mowery, D., Feller, C., Niederehe, G., Fruge, E., & Volpendesta, D. (1989). problem-solving strategies in dementia patien-caregiver dyads. Gerontologist, 29(2), 156-158. Clare, L., Linden, D. E., Woods, R. T., Whitaker, R., Evans, S. J., Parkinson, C. H., Rugg, M. D. (2010). Goal-oriented cognitive rehabilitation for people with early-stage Alzheimer disease: a single-blind randomized controlled trial of clinical efficacy. American Journal of Geriatric Psychiatry, 18(10), 928-939. Clare, L., & Woods, R. T. (2004). Cognitive training and cognitive rehabilitation for people with earlystage Alzheimer's disease: A review. Neuropsychological Rehabilitation, 14(4), 385-401. Hedges LV, Vevea JL. 1998. Fixed-and random-effects models in meta-analysis. Psychol Methods 3(4): 486. Higgins JP, Green S (Eds). 2008. Cochrane Handbook for Systematic Reviews of Interventions. 5. Chichester: Wiley-Blackwell.

Kurz, A., Thone-Otto, A., Cramer, B., Egert, S., Frolich, L., Gertz, H. J., Werheid, K. (2012). CORDIAL: cognitive rehabilitation and cognitive-behavioral treatment for early dementia in Alzheimer disease: a multicenter, randomized, controlled trial. Alzheimer Disease & Associated Disorders, 26(3), 246-253. Neely, A. S., Vikstrom, S., & Josephsson, S. (2009). Collaborative memory intervention in de-mentia: caregiver participation matters. Neuropsychological Rehabilitation, 19(5), 696-715. Onder, G., Zanetti, O., Giacobini, E., Frisoni, G. B., Bartorelli, L., Carbone, G., Bernabei, R. (2005). Reality orientation therapy combined with cholinesterase inhibitors in Alzheimer's disease: randomised controlled trial. British Journal of Psychiatry, 187, 450-455. Onor, M. L., Trevisiol, M., Negro, C., Alessandra, S., Saina, M., & Aguglia, E. (2007). Impact of a multimodal rehabilitative intervention on demented patients and their caregivers. Am J Alzheimers Dis Other Demen, 22(4), 261-272. Orgeta, V., Leung, P., Yates, L., Kang, S., Hoare, Z., Henderson, C., Orrell, M. (2015). Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial. Health Technology Assessment, 19(64) Quayhagen, M. P., Quayhagen, M., Corbeil, R. R., Hendrix, R. C., Jackson, J., Snyder, L., & Bower, D. (2000). Coping with dementia: Evaluation of four non pharmacologic interventions. International Psychogeriatrics, 12(2), 249-265. Townsend, A. L., & Franks, M. M. (1995). Binding ties: closeness and conflict in adult children's caregiving relationships. Psychol Aging, 10(3), 343-351.