A Dementia Enabling UniversityDr Lyn Phillipson, NHMRC-ARC Dementia Fellow(BAppSc, MPH, PhD)

Dementia Research - Global agenda• Currently 46 million people• By 2015, estimates 138 million• World Dementia Council Statement of

Purpose (2014) identified three key challenges:– Better research targeting a cure or modifying

therapy to achieve a 5 year delay in the onset of dementia

– Improvements in health and care;– Raising awareness and supporting dementia

friendly communities

Dementia Research - National Agenda• In Australia, 400, 000 people with dementia• By 2050 nearly 1 million• NHMRC National Institute for Dementia

Research - Strategic Roadmap (2017)1. Prevention2. Assessment and diagnosis3. Intervention and treatment4. Living with dementia5. Care

Dementia Research – UOW agenda• Examples of research at UOW • Making a difference locally, nationally and

globally• What makes us different?

– All disciplines engaged in the global challenges associated with dementia

– Take a disciplinary and interdisciplinary approach– Research occurs:

• across the continuum from lab, to risk reduction, to living well with dementia

• in collaboration with people with dementia and their care partners

• within health and aged care staff and systems• in the physical environment to improve and enable function

RESEARCH IN THE LAB

Understanding the cause of Alzheimer’s disease

• Researchers • Prof Brett Garner, Dr Lezanne Ooi, Dr Simon Brown, Prof Tim Karl (WSU)• Aims • To understand why some people get AD and others don’t.

Discover new avenues for AD therapeutic intervention.• Methods

Analyse the function of genes, proteins and lipids in the brain that may confer increased risk for AD.

• Results The team has discovered several new brain pathways related to AD. These include new protective roles for proteins called ABCA7, ApoE and apoD.

• ImpactIdentifying these new pathways provides an opportunity to develop therapeutic approaches to prevent or treat AD.

Garner lab Alzheimer’s disease research

Human post-mortem brain pathology

Use “transgenic” mice that have AD-like symptoms to study the role of human genes and to test new drugs.

Cell biology

Identify disease-associated changes in AD brain genes, proteins and lipids.

Replicate molecular changes in brain cells (neurons) grown in dishes in the lab. We can test new drugs to prevent the changes.

Alzheimer’s miceProtein structure changes

To understand the function of disease-associated proteins and what goes wrong in the AD brain.

DEMENTIA RISK REDUCTION

Can diet improve cognitive function?

https://www.smh.com.au/lifestyle/health-and-wellness/colourcode-your-diet-20110815-1itue.html

Document title10

Effect of anthocyanins from cherries on cognitive function in older adults with dementia: A Randomised Controlled Trial

Industry partners:Agritechnology Ltd.

Kent K, Charlton KE, Roodenrys S, Batterham M, Potter J, Traynor V. Consumption of anthocyanin-rich cherry juice for 12 weeks improves memory and cognition in older adults with mild-to-moderate dementia. Eur J Nutrition 2017; 56(1): 333-341.

12 week follow UpBlood sample Cognitive & physical assessment

6 week follow upStructured 3-day food diary Cognitive & physical assessment

BaselineBlood sample Cognitive & physical assessment

200ml/dayeither

Randomization (n = 49 dementia patients aged 70+y)Computer-block aided by independent statistician

RecruitmentGeriatric outpatient dementia clinic Residential aged care facilities

CONTROLLow-flavonoid

Low-anthocyanin

INTERVENTIONFlavonoid-rich

Anthocyanin-rich

HEALTH AND COMMUNITY SERVICES

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Kara Capetta (PhD Candidate), Dr Lyn Phillipson, Dr Luise Lago• Understand factors associated with

hospitalisation in the lead up and following a ‘first admission’ for dementia.

• Retrospective study of patterns of hospitalisation 5-years pre & post first admission for dementia (n=7919).

• Emergency department use and inpatient admissions over a 10-year period

• Age- and sex-matched cohort (n=7910).• IMPACT - Opportunities for better recognition,

diagnosis and management people with dementia in the hospital setting.

Hospital Care

Community Care• Dr Lyn Phillipson (NHMRC-ARC Dementia Fellow)• Australian has undergone large aged care reforms

(DSS, 2015) – Consumer directed care – ‘choice based’

individualised, marketization– Focus on care in the community and accountability for

costs – How are people with dementia faring under new

system?– Using innovative methods to assess outcomes for

people with dementia against important domains

Domains Definitions

Control in Daily Life*

Having choice means you can decide what to do

Accommodation comfort & cleanliness

Having a clean home means that the kitchen, bathroom , bedrooms and other rooms are clean and tidy. Home a comfortable home means that you like how your home looks and feels.

Personal comfort & cleanliness

Being presentable means being clean. Having clothes and feeling comfortable in what you are wearing.

Food and Drink Think about whether you can have the food and drinks you like. Whether you have enough to keep you healthy? And whether you can eat and drink as often as you need to?

Safety Feeling safe means that you are not worried about: being bullied or abused; falling or getting hurt; being attacked or robbed (in the home; in your local area)

Social Participation*

Social Life means spending time with people you like. This could be friends, family or people in your community

Occupation* Think about things you do during the day (e.g. free time, working, volunteering, housework). Think about if: you can choose the things you do; you enjoy the things you do: you have enough things to do

Dignity in Care* How do you feel about the way other people treat you?

Results – Preliminary Analysis

0102030405060708090

100Accommodation

Cleanliness

Food & Drink

Safety

Social

Occupation

Control

Dignity

Average SCRQoL score in each domain as a percentage of the total possible score (unweighted)

%

Dignity 97.22

Accommodation cleanliness and comfort

80.56

Food and Drink 77.78

Personal safety 66.67

Control over daily life 66.67

Social Participation 58.33

Occupation 47.22

LIVING WELL WITH DEMENTIA

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DEMENTIA FRIENDLY COMMUNITIES

‘A place or culture in which people with dementia and their carers are empowered, supported and included in society, understand their rights and recognise their full potential’

Dementia Friendly KiamaDr Lyn Phillipson, NHMRC-ARC Dementia Fellow

Dementia Friendly Kiama ‘Pilot Project’

• Australian first - Commenced 2014 – Dementia Australia, University Wollongong, Kiama Council

• Why Kiama?– ‘Sea-change’ community, high proportion of older

residents (22, 000 residents/1200 dementia)– Proximity to University– History of council community engagement & action on

health

Participatory Action Research

Mapping interviews

Out and about with dementia

Enabling and disabling

environments

Mapping

Dementia Friendly Places

Ideas for Action

Environmental Audits

Developed and use of

Community Environment

Audit Tool

(DFC-EAT)

Community and Business Surveys and

Focus Groups

Needs, Assets and Dementia

Attitudes

Education and training

• Local people living with dementia and their supporters presenting and involved in all education

• >1300 local people attended education• Carer groups, community organisations, local service

providers, GPs and PNs and the general public• Education & training (Two day workshops)

– Capacity Building - support for participation of people with dementia in community groups

– Stigma reduction – Contact with people with dementia – experts of the lived

experience

Communication and Information

• Local dementia services and information • Dementia Illawarra Shoalhaven - news,

calendar of events• Newsletter

• Community events• Library – Film launch, Book launch, Dementia

& Driving Workshop• Media and publicity

• Websites, radio, TV, print, twitter with 100+ appearances

Outdoor Spaces and Buildings

• Dementia Friendly Community Environment Assessment Tool– Helps show how public buildings can support, or hinder,

people with dementia and make plans for change

• ‘OurPlace’ maps – Gather and share information about ‘Dementia Friendly’

Places and Spaces – Ideas for action - used by Dementia Alliance and council

What have we achieved?

• Challenged the status quo about what it is like to live with dementia

• Greater awareness:– that each person’s experience is different – the importance of supporting a variety of

services and activities in Kiama

• Survey from 2014 - 2016– ‘People with dementia participate in a variety of

activities’– ‘It is easy to find information about dementia friendly

services and businesses in Kiama’

‘Acceptance goes with the awareness. And with the

attitude, there is a subtle change in the population when the word

dementia is mentioned.’

Dementia Advisory Group Member

What have we achieved?

• Greater acceptance of people living with dementia– Social & professional networks– ‘Dementia friends’ in clubs, organisations and

business

• Survey 2014 - 2016• Reduced Stigma

– ‘I would not want my family to know’ – ‘I would feel humiliated’,– ‘I would give up on life’– 84% would want to live in Kiama if they had

dementia

‘We have created this momentum so that it

now has a life of its own.’Dementia Alliance member

Project DARE

• Dementia knowledge, Art, Research & Education (DARE)• Objective: to change children’s knowledge and perception

of dementia. • Researchers: Dr Pippa Burns, Dr Michelle Eady, Dr Penny

Harris, Mrs Corinne Green & Professor Victoria Traynor, University of Wollongong;

• Partners: Dr Jess Baker, UNSW; Mrs Carinya Barkley, Thirroul Public School; Ms Jennine Primmer, Big Fat Smile.

Funded by UOW’s Global Challenges Program

Aims & Methods• Multidisciplinary team of teachers, artists and researchers

with the aim to increase awareness of dementia amongst Stage 2 children (ages 8-10 years).

• The intervention was piloted in May 2017 in three stages.• Stage 1: The children created their first artwork in collaboration

with the community artists.• Stage 2: The dementia lesson was given by a class teacher.• Stage 3: The children were able to add to/modify their artwork

based on what they’d learnt in Stage 2.

• Pre-post test design using mixed methods

Results• Pre and post matched data n=74• Significant improvements in children’s

attitudes – Spending time with people with dementia can be

fun– People with dementia can feel when others show

them love and understanding– People with dementia have hobbies and interests– Dementia is when something has gone wrong in

your brain– People with dementia can be creepy– You can “catch” dementia from other people– Dementia is unpredictable

Two community art exhibitions

Project DARE has since run in Aberdeen, Scotland.

Team UOW - Desert Rose House• >100 students and staff

from UOW and TAFE• International Solar

Decathalon (Dubai, 2018)• Environmentally friendly

and dementia friendly ‘house for life’

• http://desertrosehouse.com.au/

Closer Title