Supporting independence and function in people living with dementia A technical guide to the evidence supporting reablement interventions. Second Edition © 2019, 2018 the authors. You may copy, distribute, display, download or otherwise freely deal with this work for any purpose, provided that you attribute the authors as the owner. However, you must obtain permission if you wish to (a) include the work in advertising or a product sale, or (b) modify the work. Suggested citation: O’Connor CM, Poulos CJ, Gresham M, Poulos RG. Supporting independence and function in people living with dementia, A technical guide to the evidence supporting reablement interventions (2nd Edition). Sydney: HammondCare, 2019. ISBN 978-0-6483387-4-1 Cover design: Melissa Summers of SD Creative Funding and acknowledgements This project was funded by the National Health and Medical Research Council (NHMRC) Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People. The opinions reflected in this document do not necessarily reflect the views of the Funding Partners of the Partnership Centre. The project was a partnership between HammondCare, University of New South Wales, Brightwater Care Group, Helping Hand Aged Care, Dementia Australia, and the Department of Health. The team comprised a range of researchers, clinicians, policy makers, aged care providers, and also people impacted by dementia, both people living with dementia and the people supporting them. Collaboration with consumers has been an important element of the process, ensuring its relevance. 1 CONTENTS BACKGROUND ......................................................................................................................................... 3 Purpose of this technical guide and the accompanying sector handbook ......................................... 3 To whom do the interventions apply .................................................................................................. 3 ABBREVIATIONS ...................................................................................................................................... 4 GLOSSARY................................................................................................................................................ 5 Interpreting the research and terminology ...................................................................................... 10 METHODOLOGY .................................................................................................................................... 11 Program selection ............................................................................................................................. 11 Review of the literature .................................................................................................................... 12 Inclusion and exclusion criteria ......................................................................................................... 12 Search terms and search strategies .................................................................................................. 12 Data extraction ................................................................................................................................. 13 Assessing the quality of the research and risk of bias ...................................................................... 14 Synthesising the data to formulate the programs and ‘plans’ ......................................................... 14 PROGRAMS ........................................................................................................................................... 16 1: Supporting everyday living activities through an occupational therapy program ....................... 17 2: Supporting everyday living activities through an exercise program ............................................. 21 3: Supporting everyday living activities through a cognitive program ............................................. 29 4: Supporting mobility and physical function through a falls prevention program.......................... 39 5: Supporting mobility and physical function through an exercise program ................................... 44 6: Supporting cognitive function through an exercise program ....................................................... 57 7: Supporting cognitive function through a cognitive program ....................................................... 69 8: Supporting communication through a communication program ................................................. 85 Appendix 1: Risk of bias summaries and graphs ................................................................................. 105 Appendix 2: List of assessments used across the research ................................................................ 121 Appendix 3: The technical guide development team ......................................................................... 126 REFERENCES ........................................................................................................................................ 127 2 BACKGROUND Purpose of this technical guide and the accompanying sector handbook This document, Supporting independence and function in people living with dementia - A technical guide to the evidence supporting reablement interventions, provides a detailed synthesis of the published research evidence on reablement interventions for people living with dementia. The technical guide also explains the methodology used in developing the reablement programs described, an overview of the included studies, and a full reference list. The technical guide builds upon those sections of the Cognitive Decline Partnership Centre Clinical Practice Guidelines and Principals of Care for People with Dementia1 that dealt with the evidence for interventions that could delay the onset of functional decline, or improve functioning and quality of life for people living with dementia. Also included are studies that post-dated the research reported in the CDPC publication. The technical guide is particularly intended for the clinician who wants to understand the evidence behind the reablement programs that they might be considering. The accompanying sector handbook is directed more towards service providers, clinicians who want to gain a broad understanding of the types of reablement programs that could be offered to people living with dementia, and to policy makers. The sector handbook is also a resource for people living with dementia, and their family members and support persons. The sector handbook is cross-referenced to this technical guide for those who seek further information. Also available is a consumer information booklet, which provides accessible information to assist people living with dementia, their family members and support persons to make better informed decisions around their care, and about reablement programs in particular. The technical guide, sector handbook and consumer information booklet can be downloaded from hammond.com.au/reablement To whom do the interventions apply The interventions outlined in the technical guide and sector handbook are intended for people living with dementia who are able to participate in the programs described. The research on which these two documents are based included people across the mild, moderate and severe stages of dementia, but the majority of studies involved people living with mild to moderate dementia. Where described in the original research studies, the technical guide makes reference to the applicable stage of dementia when outlining the programs. Because it has been widely used in the literature, Mini Mental State Examination (MMSE) scores (when available) were used to rate dementia stage, as this was the most consistently used measure across the studies. The stages of dementia based on MMSE scores (rated out of 30) were: severe (0-10), moderate (11-20), mild (21-25), and questionable (26-29).2 The major types of dementia reported in the research included in the technical guide were: Alzheimer’s disease, vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia. The research studies included people with later onset (onset >65 years) and younger onset (onset <65 years) dementia. Some of the research also included family members/support persons or care support workers as participants. Where these cohorts were involved in the research, this was described in the relevant programs. 3 ABBREVIATIONS ABC Antecedent, behaviour, consequences AD Alzheimer’s disease ADAS-Cog Alzheimer’s Disease Assessment Scale – Cognitive ADL Activity of Daily Living CDPC Cognitive Decline Partnership Centre CI Confidence interval EP Exercise physiology/physiologist IADL Instrumental Activities of Daily Living MMSE Mini-Mental State Examination Neuropsych Neuropsychologist NHMRC National Health and Medical Research Council OT Occupational therapy/therapist Psych Psychologist PT Physiotherapy/therapist RCT Randomised controlled trial RN Registered nurse SMD Standardised mean difference SP Speech pathology/pathologist SW Social worker WHO World Health Organisation 4 GLOSSARY Term What the literature says Activities of Daily ADLs are the varying tasks that we all complete on a daily basis. ADLs Living (ADLs) are made up of basic ADLs, referring to self-care activities such as bathing, dressing, toileting, and eating; and instrumental ADLs, referring to the more complex tasks we undertake such as organising finances,