Date Published: March 28, 2017
Publisher: Public Library of Science
Author(s): Martin Orrell, Lauren Yates, Phuong Leung, Sujin Kang, Zoe Hoare, Chris Whitaker, Alistair Burns, Martin Knapp, Iracema Leroi, Esme Moniz-Cook, Stephen Pearson, Stephen Simpson, Aimee Spector, Steven Roberts, Ian Russell, Hugo de Waal, Robert T. Woods, Vasiliki Orgeta, Carol Brayne
Abstract: BackgroundCognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver.Methods and findingsA single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs).Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher.Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver.Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean difference [MD] = −0.55, 95% CI −2.00–0.90; p = 0.45) and self-reported QoL (MD = −0.02, 95% CI −1.22–0.82; p = 0.97) for people with dementia, or caregivers’ general health status (MD = 0.13, 95% CI −1.65–1.91; p = 0.89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1.77, 95% CI 0.26–3.28; p = 0.02), and iCST improved QoL for caregivers (EQ-5D, MD = 0.06, 95% CI 0.02–0.10; p = 0.01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention.ConclusionsThere was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers’ QoL.Trial registrationThe iCST trial is registered with the ISRCTN registry (identified ISRCTN 65945963, URL: DOI 10.1186/ISRCTN65945963).
Partial Text: There are an estimated 5.3 million individuals with dementia in the United States, with the number of cases rising each year as the population ages . Family caregivers are an essential source of care with an estimated economic value of $217 billion a year .
We undertook a pragmatic RCT to evaluate the impact of a programme of individual, home-based CST on cognition and QoL of people with dementia and mental and physical health of caregivers. No significant differences were found between the iCST and TAU groups for the primary outcomes of cognition and QoL for people with dementia and mental and physical health for caregivers. iCST appeared to enhance the quality of the caregiving relationship from the person with dementia’s perspective. In addition, the caregivers in the intervention group benefitted in terms of improvements in QoL (EQ-5D). Analyses incorporating level of adherence to the iCST programme (number of sessions completed) revealed that people with dementia who participated in more sessions were more likely to experience gains in the relationship with their caregiver at the primary end point of the study (26 wk), and caregivers who completed more sessions had fewer depressive symptoms. The EQ-5D demonstrated improvements in QoL for caregivers, but there was no difference in general health status (SF-12). The discrepancy in findings between these two measures may be related to inherent differences in the measures or their sensitivity to change.