Improving the quality of care for people with dementia and their carers

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NHMRC Partnership Centre Dealing with Cognitive and Related Functional Decline in Older People (Cognitive Decline Partnership Centre) Improving the quality of care for people with dementia and their carers Susan Kurrle Geriatrician, Hornsby Ku-ring-gai and Eurobodalla Health Services Curran Professor in Health Care of Older People, Faculty of Medicine, University of Sydney Director, Cognitive Decline Partnership Centre sydney.edu.au/medicine/cdpc

What is the NHMRC Cognitive Decline Partnership Centre (CDPC)? Partnership between NHMRC, Alzheimer s Australia, and 3 aged care providers (Brightwater Care WA, HammondCare NSW and Vic, and Helping Hand SA) Partners drive research agenda which is carried out by a team of research based and system based investigators (clinicians and aged care providers) Strong input from consumers from initiation to completion of projects Approximately $25 million funding over 5 years Funding for projects began in Feb 2014, with 33 activities completed, underway, or being developed

Who is the CDPC? Investigator team is a mixture of clinicians, researchers, consumers, and aged care providers and practitioners Investigators include: Medicine, nursing, physiotherapy, psychology, occupational therapy, pharmacy, social work Law, sociology, health economics, change management Consumers include people with dementia and carers of people with dementia, who are members of Alzheimer s Australia Consumer Dementia Research Network The team covers 5 states, 10 universities, other institutions (eg RDNS, Southern NSWLHD, NSW ACI) and 15 professions, and includes urban and rural sites

What are the Objectives of the CDPC? NHMRC mandated objectives for Partnership Centres: Implementation of current knowledge Synthesis and dissemination of current research Collaborative research Capacity building Major focus of Partnership Centres is on knowledge translation ie knowing to doing Projects for our Centre are developed together by Partners and Investigator team members End-user/Consumer involvement seen as essential from the beginning of the process

What are the aims of the CDPC? Aim is to improve the lives of people living with dementia, and to develop and communicate research to improve the care of people with dementia Focus is particularly on the care area of cognitive and associated functional decline

How is the CDPC different to other research centres? Activities are Partner initiated and approved Consumer involvement from conception with all projects developed together with consumers, and reviewed by consumers Enabling sub units advice and assistance available for: health economics research methodology change management policy development technology and telehealth Clinicians and providers are involved in research and can translate the findings immediately eg CHOPs, Clinical Practice Guidelines

Examples of CDPC activities Implementation: Care of the confused hospitalised older persons program (CHOPs) ViDAus Vit D administration in aged care facilities Currently approx 47% residents are taking Vit D

Examples of CDPC activities Implementation: Teleheath enabled prescribing for people with dementia in aged care facilities Implementing the COPE intervention in community living older people with dementia and their carers (a dyadic intervention ) Implementing Interprofessional Education across the aged care sector

Examples of CDPC activities Synthesis and dissemination: Development of a national approach to Advance Care Planning in People with Dementia Review of the Role of Key Workers in Dementia http://sydney.edu.au/medicine/cdpc/documents/resources/

Examples of CDPC activities Synthesis and Dissemination: Development of Consensus Guidelines for Dementia in Primary Care Development of Clinical Practice Guidelines and Principles of Care for People with Dementia

Examples of CDPC activities Collaborative new research: Understanding Long Term Care Configurations looking at the real cost of quality dementia care Effect of regulations on the quality of aged care Optimising the quality use of medicines in people with dementia

Examples of CDPC activities Understanding public attitudes to dementia and developing interventions to address these Understanding falls risk and preventing falls in older people with cognitive impairment Understanding the effect of a socialisation robot on older people with cognitive impairment

Examples of CDPC activities Capacity building: PhD and Masters scholarships Development of research capacity in staff working in health and aged care Providing workshops on health economics, policy engagement, technology and telehealth

Example of synthesis and dissemination: Clinical Practice guidelines

Why do guidelines? There were none Dementia is common Dementia is a National Health Priority Clinical Practice Guidelines have been shown to improve quality and consistency of care for a range of conditions Dementia is not managed consistently well in Australia, and there is lots of room for improvement, and these guidelines outline how that can be done. Having Guidelines gives dementia clinical legitimacy

How did we do it? Adapted the NICE (UK) Clinical Guidelines Formed a consultative Guideline Adaptation Committee of 21 people: consumers, representatives from ATSI and CALD communities, clinicians, and researchers Regular consultation and comments via email on each recommendation, with 3 face to face meetings for final consensus Final version was approved by NHMRC in February 2016 Final version contains 109 recommendations with 29 evidence based recommendations

How did we do it? The Guidelines were officially launched by Minister of Health Sussan Ley on March 16 th 2016

Web address for Guidelines

Thank you