Background
Research into Rett syndrome has included various medical interventions. Non‐medical interventions are relatively under‐researched. Recent technological communication intervention advances have contributed to the evidence base in Rett syndrome.
Method
The Embase, PsycINFO and MEDLINE were systematically searched for peer‐reviewed papers describing non‐medical interventions for Rett syndrome. All identified papers were evaluated for methodological quality.
Results
Thirteen studies of adequate methodological quality were reviewed (across N = 60 participants). Interventions were primarily communication interventions including music, assistive technology, augmentative and alternative communication strategies, attentional training and cognitive rehabilitation training. All studies reported positive outcomes across communication, quality of life, brain stem activity, physical fitness and a reduction in stereotyped behaviour. However, methodological challenges to generalizability, standardization, lack of follow‐up and/or small‐N samples were common.
Conclusions
The review highlights the paucity of high‐quality research. Future research is needed to build on current research and improve validity and generalizability of interventions.
Purpose
The purpose of this paper is to discuss the findings of a service evaluation project of the Specialist Memory Clinic for people with intellectual disabilities in South Wales using the Dementia guidelines published by the British Psychological Society and the Royal College of Psychiatrists (BPS/RCPsych, 2015).
Design/methodology/approach
Clinical audit using case notes of patients attending Memory Clinics during 2011 and 2015 benchmarked against best practice guidelines; carers feedback from Memory Clinic attendance; and evaluation of the training sessions to carers.
Findings
Audit findings show full compliance with standards (100 per cent) except for the baseline assessment for people with Down syndrome. Carer’s evaluation and feedback was positive and constructive. Training evaluation indicates improvement in knowledge and positively received sessions.
Research limitations/implications
The small number of people included and possibility of high motivated team may affect the service evaluation result.
Practical implications
It is possible for the Community Learning Disability team to meet the standards published (BPS/RCPsych, 2015) through multidisciplinary working.
Originality/value
Initial service evaluation completed after published guidelines for Dementia care by the BPS/RCPsych (2015).
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