Annual Report
2018/19 Our Vision A world where people with dementia and their families are supported and valued on their dementia journey. Our Values Our passion to improve the experience of those Our Philosophy living with dementia is supported by our values of: Dementia is a lived human experience » Understanding the unique needs of people rather than just a biological condition. with dementia We therefore embrace and support » Recognising people as our greatest strength a holistic, person-centred approach » Investing in partnerships that respects the individuality and the » Treating people with respect and dignity experience of those living with dementia. » Encouraging innovation and creativity » Being transparent, accountable and Our Purpose sustainable To improve the lived experience of those on the dementia journey through Our Culture our advocacy, leadership, innovation, We are ONE education, partnerships and holistic, person-centred care and support, and We are ONE with those living with dementia to support the pursuit of risk reduction, We work as ONE with our partners treatment and cure for dementia. We are ONE proud and disciplined team Contents
Chair's Report...... 4 Board Members...... 5 Research Report...... 6 Medical Report...... 8 Objective 1: Advocacy...... 12 Objective 2: Awareness and Understanding...... 15 Objective 3: Exemplar Care and Support Services...... 18 Objective 4: Teaching, Learning and Capacity Building...... 20 Objective 5: Research and Innovation...... 23 Objective 6: Longevity and Financial Sustainability...... 24 Philanthropy...... 26 Event Highlights...... 28 Our generous sponsors, funders, donors, supporters and contributors...... 32 Volunteers...... 33 Directors’ Report...... 34 Auditor’s Independence Declaration...... 38 Discussion and Analysis of the Financial Statements...... 39 Statement of Profit or Loss and Other Comprehensive Income...... 40 Statement of Financial Position...... 41 Statement of Changes in Equity...... 42 Statement of Cash Flows...... 43 Notes to the Concise Financial Report ...... 44 Directors’ Declaration...... 45 Independent Auditor’s Report ...... 46
Annual Report 2018/19 › 3 Chairman’s Report
Chair's Report
2018/19 has been a year of growth and change for Alzheimer’s WA and the aged care industry as a whole.
Alzheimer’s WA prides itself on maintaining Alzheimer’s WA recognised a need for a person-centred approach to the support people receiving care services at home to and care of people living with dementia be able to access quality dementia-specific in Western Australia. We welcomed the care. With this in mind, we commenced establishment of the Royal Commission into delivery of dementia-specific home care Aged Care Quality and Safety in October packages to people living with dementia 2018 and have closely followed the hearings in the metropolitan area in May 2019. The as they have unfolded across the country. new service has been well received and Our services are delivered in stark contrast supported by our clients. to the sad and often confronting stories that have come to light during this time. Our I wish to express my sincere thanks and submission to the Royal Commission on the acknowledge Board members Ian Wells importance of a person-centred approach and Jenny Watt who resigned from their was met with a request to view our services positions on the Board during the year. in action. Subsequently, the Commissioner visited Mary Chester House in May 2019, and Ian joined the Alzheimer’s WA Board in Jason Burton, Head of Dementia Practice 2014 and brought a wealth of financial and Innovation, appeared before the expertise, being the Chief Financial Officer Commission in June 2019. We look forward of Fortescue Metals Group and having over to reading the interim report when it is 20 years’ experience as a senior executive in released later this year. leading ASX listed and private companies in mining, energy infrastructure and healthcare Dementia is not expected in a person aged industries. Ian held positions on the in their 30s, 40s, or 50s, yet around seven Finance and Audit Committee and Building per cent of people living with dementia Committee, as well as being Treasurer for are diagnosed under 65 years of age. the last three years. He resigned from his Often a person is still working, or has a position in June. young family to support, and their needs can be very different to an older person Jenny joined the Alzheimer’s WA Board as a with dementia. The continued rollout of Director in 2005 and brought extraordinary the National Disability Insurance Scheme insight with a background in nursing and (NDIS) in Western Australia has allowed as a carer for her husband, Alan, for eight us to expand delivery of services to more years. Alan, a specialist General Surgeon people living with dementia under the and Gastroenterologist, was diagnosed with age of 65. Completion of the rollout is Alzheimer’s disease in 2002 at just 52 years expected by July 2019. of age and sadly passed away in 2010. Jenny resigned from her position in early 2019.
4 › Alzheimer’s WA The Board welcomed two new members a number of large donations which have in 2018/19, Matthew Budge and Warren seen the purchase and refurbishment of Harding. Matthew is a partner at PwC, Ella’s House in Mandurah, along with a very where he has worked for the last 18 years. generous donation in Albany. Warren’s background includes over 25 years of strategic management consulting I and my fellow Directors wish Rhonda and other not for profit Board experience. the very best in her future endeavours I and my fellow Board members look and acknowledge and thank her for the forward to working with Matt and Warren significant impact and contribution she has into the future. made during her time with Alzheimer’s WA.
It is with some sadness that I report our Thank you to my fellow board members, CEO, Rhonda Parker, has decided to management, staff, volunteers, donors and retire. Rhonda held the helm through a supporters. Thank you also to the Australian very difficult period. She headed up the and Western Australian governments who ensure continuity of the bulk of our services separation from Alzheimer’s Australia through generous funding. that saw Alzheimer’s WA become an independent organisation, with a new and I am proud of all we have achieved in 2018/19 strong brand, reputation and vision. She saw and moving forward I feel confident we will the aged care and disability sector reforms continue to build on our vision of a world and led the organisation to respond to the where people with dementia and their immense changes these brought. families are supported ad valued on their dementia journey. After nearly seven years of working closely with Rhonda I have no doubt she made a significant impact. Rhonda will leave a legacy of strong stakeholder relations, and the development and implementation of strategies to drive our organisation into the Craig Masarei future. Rhonda was instrumental in securing Chairman
Board Members
Craig Masarei Jenny Rogers Dr Sean Maher Jenny Watt Chairperson Deputy Chairperson Medical Director Director
Arnold Stroobach Ian Wells Warren Harding Matthew Budge Rhonda Parker Director Finance Director Director Director Chief Executive Officer Company Secretary
Annual Report 2018/19 › 5 Research Report
Research Report
This year has seen two significant programs dementia and the general public. You launched in Australia that will support high can Step Up for Dementia Research at: quality dementia research into the future. stepupfordementiaresearch.org.au.
Former Minister for Aged Care, the Hon. An early stage research project led by the Ken Wyatt MP announced $18 million to Queensland Brain Institute at the University establish the Australian Dementia Network of Queensland has been testing the ability (ADNeT) - the largest single research of ultrasound treatment to remove the program to be funded to date through plaques that build up in the brain of people the Government’s Boosting Dementia with Alzheimer’s disease. Testing has had Research Initiative. ADNeT will bring successful outcomes in animal studies and dementia researchers, clinicians, health the team are progressing towards a small service providers and industry together scale human safety trial this year. with people living with dementia to deliver A study by researchers at University of the ADNeT Registry and Research Program, Oslo in Norway is taking a novel approach enabling high-quality research and clinical to treating a different area of brain cell care. ADNet is set to become the single malfunction than the normal amyloid-beta largest investment in dementia research in and tau related problems. This study is Australia, with additional pledges of support focusing on the mitochondria which produce from philanthropic organisations the JO the energy the cells need to function and and JR Wicking Trust, and the Yulgilbar stay alive. Broken mitochondria are seen in Foundation. These Foundations join cells of a person with Alzheimer’s disease industry, universities, research institutes and the team are investigating if the stress and State Governments to more than double caused in the cells that leads to cell death the Federal Government’s investment. can be addressed by a cleansing process that clears the dysfunctional mitochondria. The Step Up for Dementia Research The early research in animals has shown Service was also launched this year. Many positive outcomes. A human trial is planned dementia research studies have to be in Denmark this year. abandoned or are severely compromised by difficulty in recruiting participants. Research into the cause of Alzheimer’s This new service provides an opportunity disease in the USA has shown some for people to volunteer to be involved in interesting results with the possible dementia research and links researchers identification of very small leaky blood with potential participants. The process vessels in the brain being a contributing for registering is straight forward and factor to the onset of dementia. The team can be done via the Step Up website or at the University of Southern California over the phone. Volunteers are needed found in their five year study of 161 people from people diagnosed with dementia, that these leaks are happening before the people caring for someone living with build up of toxic proteins and well before any
6 › Alzheimer’s WA symptoms are noticeable. Future studies will The use of the arts to enhance wellbeing, lift look at early identification of those at risk mood, motivate and engage a person living of these blood vessel leaks and identifying with dementia has been the focus of a study treatments that may prevent them, and in Otago, New Zealand. The study found that possibly reduce the risk of a person the participant’s quality of life increased developing dementia. significantly due to taking part in a 10 week arts programs. Another study led by the A key area of ongoing research focus is University of Utah is looking at why music on diagnosing the risk of Alzheimer’s seems to be beneficial for many people disease before significant brain changes living with dementia. Researchers found have happened. This may lead to early the autonomous sensory meridian response intervention treatments that prevent the system in our brains (an automatic part of disease progressing to the point where the our brain that creates positive stimulation person becomes cognitively impaired. The when music is played) is not affected by main focus of this work is on identifying Alzheimer’s disease, and that music can have the build up of abnormal amyloid proteins beneficial effects that enhance wellbeing in the body. This can be done through and improve quality of life. positron emission tomography (PET) scans of the brain, lumbar punctures and the While there has been no significant latest research this year is showing positive breakthroughs in treatments for people outcomes in testing for this build up using diagnosed with dementia this year our cheaper and less invasive blood tests. A understanding of the different neurological study involving two research groups in Japan conditions and their early development and Australia has found that they can predict pathologies continues to grow and will with a high level of accuracy abnormal build hopefully lead us one day to more effective up of amyloid proteins that may lead to treatments or risk reductions. Alzheimer’s disease. It is important to note this is not a test for Alzheimer’s disease but is a measure for one of the risk factors of developing the disease.
Annual Report 2018/19 › 7 Medical Report
Medical Report Honorary Medical Director Sean Maher
Reading current research about dementia Enormous progress into understanding the leaves one with a sense of awe at the causes of neurodegeneration continues and breadth of expertise involved. Investigating uncovers increasingly complex interactions a given question might include multiple but also potential avenues for therapies. A sophisticated techniques including few notable observations follow. developing animal or tissue experimental models, adding in other genotypes, The functioning of the brain’s immune inducing stem cells, CRISPR gene editing, cells, microglia, is a major focus of study identification of gene activation and and their ability to modulate the effects proteomic analysis of gene products of inflammation up or down depending on with mass spectroscopy, tissue cultures, an ever expanding number of interactions behavioural observations of experimental and factors. One major risk factor for AD animals, or sophisticated imaging is having a particular genetic lipoprotein techniques. Not to mention the dedication variant called ApoE4; microglia expressing of researchers and selflessness of people ApoE4 in tissue culture have been found to who volunteer for research. be “lazy” and don’t ingest foreign material as they should but they also rapidly produce The National Institute on Aging (NIA) inflammatory molecules that cause harm. in the USA has announced funding Microglia seem to harvest toxic AB fibrils to help translate the wealth of and turn them into plaques which are information regarding basic biological less toxic. Stopping microglia developing mechanisms of neurodegeneration into in mice resulted in very few plaques but new therapies. The funding will allow amyloid then accumulates elsewhere like collaboration between research teams blood vessels where it is still harmful. One and importantly all of the information important controller of microglial activity is generated will be freely available. The a molecule called TREM2; people with higher impetus is the recognition that the levels of TREM2 with AD decline more slowly. pursuit of beta amyloid (AB) alone as Additionally, TREM2 enables microglia to a target to treat Alzheimer’s Disease “sculpt” formation of AB plaques which (AD) has largely failed and new targets seems to protect neurons from damage as and mechanisms are needed. The well as aggregation of tau protein. There are collaboration will hopefully accelerate many more examples. the identification of new targets, testing in tissue and animal models and embarking on human clinical trials.
8 › Alzheimer’s WA Two research groups have already produced PET scans for both tau and amyloid in the antibodies designed to stimulate TREM2 Swedish BioFINDER study. It seems to be to achieve these benefits. Another group helpful in differentiating people with AD is aiming to improve microglial functioning from non-AD dementia. using a different target, CD33, and early Phase 1 trials are starting in Melbourne. There are many other markers of However, getting the balance of microglial neurodegeneration and neuroinflammation functioning right is a major undertaking. detectable in CSF, so rather than relying on Genome Wide Association Studies (GWAS) a few CSF biomarkers, work is being done show there are many different genetic looking at a multitude of different proteins variables of molecules that affect microglial with the aim of developing a toolkit of a function and the exact causes of an small group of markers to make better individual case of AD is likely to differ from predictions about diagnosis and staging of one person to the next. Not to mention different dementias. other contributors to neurodegeneration such as vascular disease and inflammation. Neurofilament light (NfL) is a measure of neurodegeneration of axons and appears Mitochondria, the “powerhouses” of cells to be useful in early detection and tracking have been implicated in contributing to disease progression. In a continuing study neurodegeneration. Stressed microglial cells of Colombian people with an inherited form will eject fragments of mitochondria, which of AD, NfL was able to determine people can then invoke similar changes in nearby who were carriers of the AD mutation from astrocytes, and cause damage to neurons. those without and also predicted disease The mitochondrial fragments then provoke onset 22 years before they would normally an inflammatory response. In mouse models, get symptoms. NfL also correlated with a small peptide which has been shown to performance on cognitive tests. prevent mitochondria breaking up has been shown to prevent these changes and may Studies aimed at removing amyloid prove to be an effective therapy. with monoclonal antibodies have largely been abandoned with the exception of There are now at least 11 different blood Crenezumab in the Colombian study tests based on detecting AB and work just mentioned. It is thought that early is going into standardising them. They treatment before people are symptomatic correlate well with measurements of AB may be successful but the trial isn’t due using cerebrospinal fluid (CSF) or Brain to finish before 2022. Another large group PET scans. Measuring phosphorylated tau of promising therapies (BACE inhibitors) protein (p-tau) in CSF can show elevated has also been abandoned due to lack of levels many years before the onset of AD effect, worsening of cognition or other and can also be done on plasma where it safety concerns. correlated well with CSF measures and brain
Annual Report 2018/19 › 9 Medical Report
Nevertheless, other trials are proceeding memory and reduced inflammatory including antibodies and vaccines aimed at responses. Many proteins were increased tau proteins. A Phase 2b trial is underway in the exercising mice but it’s thought that using a molecule (PTI-125) which binds to proteins inhibiting the Complement system an abnormally folded form of a protein were responsible which stopped the pruning called Filamin A (FLNA), which is thought of synapses that Complement activation can to contribute to neuroinflammation. cause. Similar changes were demonstrated PTI-125 restores the FLNA to normal in the plasma of 20 older people with mild shape and function. Earlier studies have cognitive impairment who participated in a shown that PTI-125 reduced markers of six month exercise program. Other studies neuroinflammation and neurodegeneration. have shown Brain Derived Neurotrophic New therapies using short fragments of Factor (BDNF) is increased by exercise and RNA to alter the expression of genes (Anti- supports neuroplasticity. sense oligonucleotides, ASO) have been shown to work in spinal muscular atrophy The World Health Organization released and Duchenne muscular dystrophy, and are guidelines in May to prevent dementia, being explored with a Phase 1 trial underway including physical exercise, balanced diet, to reduce levels of tau. stopping smoking, and managing chronic conditions such as hypertension and Surely the most novel therapy being diabetes. They were less clear about alcohol, explored is providing a combination of 40Hz weight reduction, cholesterol and cognitive sound and flickering light to induce a return training and left this to clinicians to make of normal gamma brain waves which decline decisions on a case by case basis due to in AD. In mice, this results in improved the risk of harms for some interventions performance in mazes, better brain blood e.g. side effects of statins. They didn’t feel flow, better functioning microglia and a that there was enough evidence to make reduction in soluble AB, plaques and tau recommendations about social activity, protein. Human studies are underway! hearing loss and depression, which were identified by a Lancet report in 2017 as More studies emerged this year of the value potentially modifiable risk factors. of exercise in preventing cognitive decline and dementia; large studies such as the Variations on the Mediterranean diet English Longitudinal Study of Ageing with have been shown to reduce cardiovascular 7807 subjects aged over 50, showed people risk as well as risk of cognitive decline. with greater physical activity had slower A recent small study compared a cognitive decline and those with high levels modified Mediterranean diet with of activity reduced their risk of dementia reduced carbohydrates, to a low fat, high over 12 years by 40%. Similar risk reductions carbohydrate diet recommended by the were reported in the other studies. Exercise American Heart Association. The different has been shown to preserve brain volume diets resulted in differences in gut bacteria on MRI and reduce levels of AB on brain PET but also a decline in AB and tau whilst on scans. the modified Mediterranean diet. Other studies have suggested that inflammation Mice who exercised on treadmills have more arising from the gut may contribute to new neurons in their memory cortex and neuroinflammation. The implication is that better survival compared with sedentary a major effect of the diet is a reduction in mice. Giving the sedentary mice infusions inflammation. of plasma from the exercising mice conveys these benefits as well as improved learning,
10 › Alzheimer’s WA A bacterium involved in causing gum facilities, day centres to home based care. disease, porphyromonas gingivalis, has We are yet to see an interim report from been invoked as a potential cause of AD. the Royal Commission into Aged Care but A number of observations have linked the a recurring theme is a lack of knowledge bacterium to AD: bacterial proteins secreted and skills of carers in caring for people by p. gingivalis can be identified in up to with dementia. We still have much to do in 96% of AD brains from a brain bank vs only improving the care of people with dementia. 39% for normal; DNA from the bacteria has been identified in the CSF of live patients Step Up for Dementia Research is a with AD, as well as in the brains of people new initiative which allows people in with and without AD, indicating that the Australia who would like to participate bacteria can infect brain tissue; its capacity in research to register their interest and to migrate to brain has been demonstrated enables researchers to match potential in mouse models. It’s thought the bacteria participants with current studies. People may precipitate AB plaques or contribute can register their interest by going to to neuroinflammation. Antibiotics don’t stepupfordementiaresearch.org.au. make any difference, but trials are underway to test a vaccine to the bacterial proteins There is still much to be optimistic about known as gingipains. the future of dementia research with ever more insights into the disease with many Funding from the National Institute on new avenues for therapies opening up. Aging in the USA has also been directed to Prevention remains a key focus however. research innovations in dementia care and Remembering advice from your mother is will involve over 30 different institutions. still salient – eat a healthy diet, get plenty of The aim is to develop best practices in exercise and remember to clean your teeth! dementia care from hospitals to care Dr Sean Maher
Annual Report 2018/19 › 11 Objective 1: Advocacy
Objective 1: Advocacy To create a better world for those living with dementia through care, support, research, services and understanding
69 11 Dementia Advocates Memory Cafés
Alzheimer’s WA has a strong history as At State level Alzheimer’s WA presented the voice for Western Australians living Dementia and your electorate briefings at with dementia. Central to our mission is to Parliament House, and an update of the advocate for a better world for those on Dementia Response in Western Australia the dementia journey through increased to all sitting members of parliament. This support, services and understanding. update was also provided to all Western Australian members of Federal parliament.
Influencing Government agendas In 2018/19 Alzheimer’s WA met with: In 2018/19 Alzheimer’s WA influenced » Hon Roger Cook MLA, Deputy Premier; Government agendas at local, State and Minister for Health; Mental Health Federal levels. » Hon David Templeman MLA, Minister for Local Government; Heritage; Culture At local Government level, Alzheimer’s and the Arts WA provided an overview of the Dementia Friendly Communities whole of town » Hon Julie Bishop MP, Member for Curtin approach to the Local Government Professionals WA Aged Friendly » Hon Ken Wyatt AM, Member for Communities and Community Development Hasluck, Minister for Health Networks Professional Development Day. Alzheimer’s WA also wrote to all Local » Mr Rick Wilson MP, Member for Governments to encourage the inclusion O’Connor of dementia friendly initiatives into their Disability Access and Inclusion or Age » Hon Terry Redman MLA Friendly Plans. » Hon Adele Farina MLC.
12 › Alzheimer’s WA The Royal Commission into Aged Care Quality and Safety
Alzheimer’s WA welcomed the In recognition of our expertise and announcement of the Royal Commission leading service models Alzheimer’s WA into Aged Care Quality and Safety. was invited to provide testimony to the Alzheimer’s WA formed an alliance with Royal Commission on what good dementia organisations with a similar philosophy of care looks like and how Alzheimer’s WA care across Australia to ensure people living has embedded the person-centered care with dementia were advocated for during philosophy into its culture and services. this Commission. Jason Burton, Head of Dementia Practice and Innovation provided this testimony. Alzheimer’s WA provided several submissions to the Commission on how aged care can be improved for people living with dementia. In June 2019, members of the Commission visited Mary Chester House to see our Enabling Households™ model in person.
Annual Report 2018/19 › 13 Objective 1: Advocacy
Guided by our Dementia Advocates Thought leadership Alzheimer’s WA Dementia Advocates shine a light on what it is really like to be living with Alzheimer’s WA made submissions to: dementia. They share their story through » Ministerial Expert Panel Advanced a range of mediums including media, Health Directives research, policy, education and fundraising. Their voice of lived experience has a Ministerial Expert Panel Voluntary » profound impact on improving community Assisted Dying understanding of dementia. » The Royal Commission into Aged Care Quality and Safety 69 people are part of the Alzheimer’s WA Dementia Advocates program. They Western Australian Government – » contributed on 53 occasions throughout Pre Budget Submission. the year to social research, education and training, service development, policy review, Alzheimer’s WA presented at State fundraising, events and media. and National conferences: » NDIS Delivering Disability Memory Café movement Services WA » West Australian Institute Alzheimer’s WA continued to grow and of Surveyors support Western Australia’s Memory Café movement. Memory Cafés are safe and » Local Government Professionals inclusive places where people living with WA Aged Friendly Communities dementia and their carers can meet for and Community Development morning tea and socialise with others on the Networks Professional dementia journey. Development Day » AAG Conference. Alzheimer’s WA provided training and advice to cafés on how to be dementia friendly Alzheimer’s WA was represented on and attended cafés to answer questions the boards of: and engage with attendees. Revised Memory Café Guidelines were produced to » Aged & Community Services Australia (ACSA) WA encourage communities to start their own cafés. In 2018/19 there were 11 Memory Cafés » Ministerial Expert Panel on operating including three in regional areas. Advanced Health Directives » Palliative Care CEO Round Table » Dementia, Ageing and Aged Care Committee » Step Up for Dementia Research.
Garden City Memory Café
14 › Alzheimer’s WA Objective 2: Awareness and Understanding
Objective 2: Awareness and Understanding Increasing knowledge and reducing stigma
41,630 70% People living Living in the with dementia community
3,500 Members
There are over 41,630 Western Australians Engaging the community living with dementia. Due to our ageing population, this figure is expected to Alzheimer’s WA published new information increase significantly over the next decade. guides and dementia fact sheets to assist clients and the community. The guides were In Australia, dementia is the leading cause developed by our dementia consultants of death in women and the second leading with feedback and review from Dementia cause of death in men. It is expected to be Advocates. They provide information about the leading cause of death in men by 2021. dementia, how to support a person living with dementia and where to find support. With approximately 70 percent of people with dementia living in the community, They include: increasing knowledge of the early symptoms » Understanding dementia of dementia, how to support people living with dementia, and combating the » Living with dementia misconceptions and stigma about dementia » Caring for a person with dementia: is one of our biggest challenges. The lived experience
Annual Report 2018/19 › 15 » Caring for a person with dementia: attended these sessions at schools, Everyday living community groups, dementia friendly » Navigating dementia support workplaces, St John Ambulance, Western Australian Police Force and Memory Cafés. » Communication and engagement » Understanding behaviour: The Alzheimer’s WA in the media impact of dementia. Alzheimer’s WA continued to engage the Alzheimer’s WA also launched three videos media to ensure consistent messages are and fact sheets for: delivered to the community. As part of this » Walking and dementia strategy, Alzheimer’s WA contributed a » Around the home fortnightly column in The West Australian and a monthly column in Have a Go News. » Driving and dementia. Articles addressed important topics Each video offers advice from people living including: with dementia on a range of topics including » Dementia research GPS devices, driving and creating enabling and safe home environments. » Person-centred care » Busting dementia myths All guides and fact sheets are available in hard copy or to download from our website. » Reducing risk of developing dementia » Memory Cafés Alzheimer’s WA hosted a series of community information sessions throughout » Dementia design. Western Australia to explain about dementia, how to reduce your risk of These articles, as well as television reports, developing dementia and how to support are available to read and view on our website people living with dementia. 1,750 people alzheimerswa.org.au.
16 › Alzheimer’s WA Objective 2: Awareness and Understanding
Dementia Awareness Month Engaging our membership
September is Dementia Awareness Month Alzheimer’s WA is a member-based and this includes World Alzheimer’s Day organisation. Alzheimer’s WA engages on 21 September. Dementia Awareness over 3,500 members through regular Month is an opportunity to raise community communication and events. Membership awareness of dementia, and highlight the is complimentary and members receive challenges faced by people living with monthly newsletters Member Connect dementia. This year’s theme was Together and Dementia Aware, and bi-annual we can ensure no one faces dementia alone. magazine Milestones.
Corporate supporter PwC hosted a World Alzheimer’s Day cocktail party for the benefit of Alzheimer’s WA. This annual event MILESTONESAUTUMN 2019, ISSUE 23 MILESTONES is a great opportunity to engage the Perth DECEMBER 2018, ISSUE 22 business community with the work and initiatives of Alzheimer’s WA.
A comprehensive media campaign Care conversation crucial Walk to Remember to raise awareness during the month included radio, newspaper advertising and media articles. Alzheimer’s WA also Driving and dementia Memory Cafés Wine and Horses hosted an awareness stand in Perth CBD Ageing in place safely on World Alzheimer’s Day.
Together we can save the ‘bestest’ Engaging the medical profession hugs ever given Alzheimer’s WA recognises the medical
Together we can profession, in particular General ensure no one faces Practitioners (GPs), is an important segment dementia alone
Talk to me - Please talk to me, not just the person to engage about the benefits of early Dementia is an umbrella term for conditions 1 with me. Don’t prejudge my level of understanding. and symptoms caused by disorders a ecting Keep questions simple - Providing information Dementia is an umbrella term for conditions the brain. There are over 100 types of dementia. 2 in smaller chunks will really help me. Verbal and and symptoms caused by disorders a ecting written information is helpful. the brain. There are over 100 types of dementia. More than 41,630 Western Australians are You can better connect with a person living with Body language - Make eye contact and speak More than 41,630 Western Australians are dementia by following these 5 simple tips. living with dementia and this is expected diagnosis and the support services available clearly, with one idea at a time. Please avoid 3 living with dementia and this is expected Talk to me - Please talk to me, not just the person to double in the next two decades. using jargon. to double in the next two decades. 1 with me. Don’t prejudge my level of understanding. Be patient and understanding - It can take a little Approximately 70% of people living with Approximately 20 percent of people more than Keep questions simple - Providing information longer for me to process information and nd the 4 70 years of age who are admitted to hospital 2 in smaller chunks will really help me. Verbal and dementia live at home in our communities. right answer. Don’t rush me, allow me time to speak. They are your friends, family, colleagues have dementia - and the rate increases with written information is helpful. Distractions cause disruptions - Less noise and increasing age. Another 10 percent of older to people living with dementia. In 2018/19 and neighbours. Body language - Make eye contact and speak 5 fewer distractions will help me to focus. Bright patients are admitted with delirium and a 3 clearly, with one idea at a time. Please avoid lights can help. Together we can ensure they don’t face further 8 percent will develop delirium during using jargon. their hospital stay. dementia alone. Please treat me with dignity and respect Be patient and understanding - It can take a little An estimated 50 percent of patients who 4 longer for me to process information and nd the You can better connect with a person living have either delirium or dementia do not have right answer. Don’t rush me, allow me time to speak. Alzheimer’s WA contributed advertisements with dementia by following these 5 simple tips. cognitive impairment identi ed in hospital. Distractions cause disruptions - Less noise and Together we can ensure they don’t face 5 fewer distractions will help me to focus. Bright dementia alone. lights can help. Please treat me with dignity and respect For information, support or just to talk and articles in the Australian Medical please call Alzheimer’s WA on 1300 66 77 88, For information, support or just to talk email [email protected], please call Alzheimer’s WA on 1300 66 77 88, alzheimerswa.org.au or visit alzheimerswa.org.au email [email protected], Association’s Medicus journal and the Royal or visit alzheimerswa.org.au
alzheimerswa.org.au Australian College of General Practitioner’s state newsletter.
Alzheimer’s WA also created and distributed brochures to GP practices in Western Australia.
Annual Report 2018/19 › 17 Objective 3: Exemplar Care and Support Services
Objective 3: Exemplar Care and Support Services Leading the way in person-centred care
Introducing dementia specific Advice and support for people home care packages concerned about dementia
After identifying a gap in the market for Our dedicated phone line received between people living with dementia, Alzheimer’s 500 and 600 calls a month and provided WA commenced offering dementia specific invaluable support and information to home care packages in 2018/19. At the time people living with dementia, their family and of launch, Alzheimer’s WA was the only friends, as well as health professionals, other organisation providing dementia specific service providers and stakeholders. home care packages in Western Australia and demand far exceeded our expectations. People can reach our friendly and The service continues to expand in line with knowledgeable customer support staff client demand. using our dedicated phone number 1300 66 77 88, and via email at [email protected]. New allied health and therapy services Supporting people under 65 Demand for our dementia specific allied through NDIS health and therapy services experienced a period of growth during 2018/19. As a result, Throughout 2018/19 Alzheimer’s the service range was expanded to include WA supported more than 50 people speech therapy, physiotherapy and social under 65 years of age and living work in addition to the occupational therapy with dementia through the National already offered. Therapy can bring many Disability Insurance Scheme (NDIS). benefits for people living with dementia. Alzheimer’s WA employs a specialist With a focus on reablement and maintaining NDIS Coordinator to support people function, it can enable a person to continue through the pre-planning stage to living independently for as long as possible. increase awareness of what supports and services are available, and to assist in securing appropriate funding to meet their needs.
18 › Alzheimer’s WA 45,489 hours 500-600 Calls per month 311 people Centre based day care
32,061 hours 30,868 hours
436 people 112 people Individual support Overnight services
23,690 hours 2,987 hours
263 people 303 people Social support groups Carer support groups
50+ People under 65 supported
Metro 1146 Mandurah 199 Great Southern 225 Wheatbelt 8 Goldfields 10 1,482 Number of clients
Annual Report 2018/19 › 19 Objective 4: Teaching, Learning and Capacity Building
Objective 4: Teaching, Learning and Capacity Building Providing knowledge for those living with dementia, their families, carers, and the health and care sector throughout Western Australia
th Dementia Partnership 5 Project Symposium 157 Dementia Change Champions® 200 Attendees
1,172 students 1,750 people Accredited and non- Information and accredited training education sessions
Alzheimer’s WA aspires to be by the side of and together we build a shared Western Australians living with dementia. understanding of the lived experience We are unable to provide direct services to of dementia. Alzheimer’s WA has all people on this journey, and recognise one of the largest dementia services the importance of sharing our dementia consultancies in Australia. expertise and building capacity within organisations that care for people living In the 2018/19 Alzheimer’s WA partnered with dementia and the communities in with Avivo, Silver Chain, Shine Community which they live. Care, Astley, Echo Community Services, Juniper and Villa Dalmacia. These partnerships focused on changes to staff Leading the way with our Dementia culture, philosophy and model of care, and Partnership Project changes to the physical environment.
Alzheimer’s WA has partnerships with residential care, hospitals, clinicians, community care and local Governments
20 › Alzheimer’s WA Acute Care Symposium Enhancing Dementia Practice in Hospitals
Wednesday, 6 March 2019 Telethon Speech and Hearing Centre
Supported by
alzheimerswa.org.au
Dementia Partnership Acute Change Symposium Project Symposium In March 2019 Alzheimer’s WA hosted its The fifth Dementia Partnership Project inaugural symposium for almost 100 staff Symposium, held in October 2018, hosted working in acute care. Speakers included over 200 attendees and brought together Winthrop Professor Fiona Wood, Professor inspiring national and international Leon Flicker, Hon Roger Cook MLA, Barry speakers. Keynote speaker Helen Maguire and Anne Cumming. Sanderson was joined by Dr Helena Popovic, Dr Bob Zeigler, Meredith Blake, Dementia Change Champions® also Joy Halleron and Challis Wilson, Nick shared the amazing work they are doing in Maisey, Bev Wheeler and advocates Tom hospital environments to make them more Harmon and Amy Bouckley. dementia friendly.
Videos of the presentations are available at Videos of the presentations are available at . dementiapartnership.com.au. youtube.com/AlzheimersAusWA
The Dementia Champion of the Year Dementia Change Champion® Award was presented to Jeannie Connell from Silver Chain at the Symposium. The Dementia Change Champion® Dementia Advocates played a pivotal capacity building program offers staff in role in determining the deserving various organisations the opportunity to winner of this award. gain knowledge, skills, information and materials to support the development of a person-centred approach to dementia support and care.
In 2018/19 Alzheimer’s WA ran three
The ‘We’ in Dementia Dementia Change Champion® programs: for Community Services Symposium Achieving wellness through ® community care staff, for hospital and acute the Domains of Wellbeing Tuesday, 16 October 2018 Perth Convention and Exhibition Centre care staff, and a new program for community care staff working with people living with younger onset dementia. alzheimerswa.org.au
Annual Report 2018/19 › 21 Objective 4: Teaching, Learning and Capacity Building
Dementia friendly communities Education and training
Alzheimer’s WA’s commitment to creating As a nationally accredited Registered a dementia inclusive Western Australia Training Organisation, Alzheimer’s WA is continued with further work in developing a leader in providing dementia specific dementia friendly communities. education in Western Australia.
Partnerships with the towns of Margaret In 2018/19, Alzheimer’s WA commenced River and Toodyay saw Alzheimer’s WA offering the CHC33015 Certificate III supporting those towns to find ways to Individual Support in addition to its better support local people living with 10719NAT Certificate IV Leadership and dementia. This included public awareness Innovation in Dementia Services and and understanding sessions, training CHCSS00095 Dementia Support – Service for service facility staff, local business Delivery Skill Set. 550 students enrolled in training and running consultation our accredited training courses. sessions in the town. Alzheimer’s WA also offers a diverse range We are very grateful for the generous of non-accredited training and workshops. support of the Lions and Rotary clubs in In 2018/19, 622 aged care support Margaret River who partnered with us staff attended one of our workshops. to ensure the program in their town has Alzheimer’s WA delivered training to positive outcomes for those living with culturally and linguistically diverse and dementia and those who care for them. Aboriginal and Torres Strait Islander groups including ChungWah, Derbarl These outcomes include: Yerrigan, Australian Asian Association and » Community information sessions the Tamil Seniors Group. » Shires integrated dementia initiatives into their Disability Access and RTO 4755 Inclusion Plans » Shires made or committed to making environmental upgrades to include dementia friendly design principles » Local libraries added books on dementia to their collection » A Memory Café commenced in Toodyay » New resources developed in conjunction Family and carer workshops with Dementia Advocates. and seminars
Alzheimer’s WA offered the one day intensive Family and Friends Course to 295 people.
Alzheimer’s WA continued partnerships with N.C. Bruining & Associates and HHG Legal Group to provide complimentary financial and legal seminars to more than 200 people living with dementia and their carers.
Toodyay Memory Café
22 › Alzheimer’s WA Objective 5: Research and Innovation
Objective 5: Research and Innovation Working for positive change, progress and better futures
As Western Australia’s leading dementia specialist care and support organisation we are committed to ensuring strong evidence based practice in our services as well as supporting research that leads to new knowledge, positive outcomes for people living with dementia and hopefully one day a cure.
This year due to very generous donations and bequests we were able to commit to a three year research strategy that supports research projects within Alzheimer’s WA, as well as support our research partnerships and collaborations externally.
During 2018/19, we were partners in a number of research studies and supported several early researchers who have chosen WA Centre for Health and Ageing different areas of dementia to focus their research on. This includes research into areas such as factors that lead to residential care admission for a person living with dementia, evaluating carer outcomes from attending Memory Cafés and developing co- Curtin Dementia designed education for support workers. Research Centre
Our strong partnerships continued with research bodies such as the Australian Alzheimer’s Research Foundation, the National Ageing Research Institute, the WA Centre for Health and Ageing at University of Western Australia, the recently announced Curtin Dementia Research Centre and Edith Cowan University.
Research can be found at: alzheimerswa.org.au/about-dementia/research/.
Annual Report 2018/19 › 23 Objective 6: Longevity and Financial Sustainability
Objective 6: Longevity and Financial Sustainability Being here for people living with dementia for as long as we are needed
203 Staff 92 Volunteers
Financial management comparability of revenue recognition practices. The financial management 2018/19 saw Alzheimer’s WA return a strong and framework required to meet financial performance, underpinned by the these standards saw an overhaul of continuous improvement commitment of organisational budgeting, reporting the organisation. Financial management and accountability. continued to improve, with robust and durable financial systems implemented that enable improved financial awareness Our people and focus. Alzheimer’s WA is a diverse and The organisation reported a better than professional organisation employing staff forecast financial result, due to many factors in locations throughout metropolitan and including strong financial management, regional areas. In 2018/19, Alzheimer’s diligent human resource management and WA employed 203 staff and engaged the ongoing development of managers. support of 92 volunteers.
2018/19 saw the organisation prepare Alzheimer’s WA values the contribution for the introduction of Accounting of all volunteers. We continued our Standard AASB 15 - Revenue from commitment to supporting volunteers by Contracts with Customers. These offering complimentary dementia training new standards replace existing and through the creation of a new monthly accounting guidance and introduce a volunteer newsletter. comprehensive revenue recognition model aimed at enhancing
24 › Alzheimer’s WA In 2018/19 we secured funding to support structures, the majority of funding implementation of a learning management previously received from Home and system for our staff. While the system will be Community Care ceased at the end of used predominantly to support upskilling of 2017/18. This funding moved across to the our direct care workforce, it will benefit all Commonwealth Home Support Program. staff through enabling them access to a vast array of online training modules. The online June 2018 saw the end to funding for the training will complement classroom based Southern Inland Health Initiative grant and on-the-job training currently provided and the Younger Onset Dementia Key to all staff members and forms part of our Worker contract. support worker competency framework, introduced in the previous financial year. In 2017/18 Alzheimer’s WA commenced a whole-of-town dementia friendly community project in the Western Australian towns of Information and technology Manjimup and York. In 2018/19 this most successful initiative received funding from Alzheimer’s WA’s new client management a number of sources which allowed us to system, Procura, went ‘live’ on 1 July 2018. roll out to the towns of Margaret River and This system enabled a full end-to-end Toodyay. The communities in both towns software solution, with a single client record have embraced the project wholeheartedly. across all points of care in the organisation, to replace previous multiple data platforms. Throughout the year, the organisation Brand and presence worked to embed and understand the system, ensuring a thorough understanding, Following the adoption of a new trading thus optimal use. name, brand and colour palette in 2017/18, Alzheimer’s WA continued to build on its brand and presence in the market and Funding update the community. This process has seen Alzheimer’s WA presence grow, backed by a In line with the Health, Aged Care and strong, professional brand and messaging. Disability Services reforms, which include greater consumer empowerment and individual choice, changes to Government funding models and new governance
Annual Report 2018/19 › 25 Philanthropy
Philanthropy
900 people 125 people Walk to Remember gave up chocolate
148 Community fundraisers
Alzheimer’s WA is proud to have a Community Fundraisers community of passionate supporters Sincere thanks to our dedicated that donate, fundraise and participate community fundraisers. The effort, in our events. The generosity of our creativity and passion these supporters supporters allows Alzheimer’s WA put into fundraising on our behalf is truly to deliver above and beyond what inspiring. 148 community fundraisers Government funding can provide. raised almost $100,000.
Signature Events Special acknowledgement must be given to Maryanne Phillips and the Wine and Horses 900 people walked in our 2018 Walk to team who held their annual Wine and Horses Remember events across Mandurah, Albany Charity Ride raising over $27,000 This event and Perth. These passionate walkers raised has raised over $139,000 since it began. over $71,500 for Western Australians living with dementia. Olivia Holtmeulen and her family again hosted the Alzheimer’s Charity Golf Day and 125 people gave up chocolate in March 2019 raised close to $14,000. Olivia has raised and raised over $29,500 in our Chocolate over $72,000 since she hosted the first Golf Block Challenge. Thank you to ambassadors Day four years ago when she was just 10. Jessica Bratich Johnson, Pippa McManus and Ros Thomas who helped to raise awareness A special thank you to Matthew Budge of the Challenge. and PwC for hosting our inaugural World Alzheimer’s Day Cocktail Party on 20 September 2018. The event raised $3,500 for Alzheimer’s WA.
26 › Alzheimer’s WA Gifts in Wills We are thankful to all who have been Laurie and Derene inspired to leave a legacy in their wills. Laurie and Derene live in Manjimup Such gestures are very much appreciated and are grateful for the changes and we acknowledge with gratitude those brought about by the Dementia who bequeathed part of their Estate to Alzheimer’s WA. Friendly Communities project in their town. Laurie was diagnosed with We would like to acknowledge a bequest Frontotemporal dementia five years from the late Metta Thick which allowed ago and says the program has given Alzheimer’s WA to develop a scholarship him a new lease on life. program to sponsor a staff member in residential aged care to become a Dementia “People are coming to me, giving me Change Champion® and undertake the support that I didn’t know was there Certificate IV in Leadership and Innovation before. It’s a disease that you’ve got in Dementia Services. A second scholarship and you just become a recluse, but not will be offered to an Alzheimer’s WA staff anymore.” member to attend a conference or training Laurie has been invited to join the in best practice dementia care. volunteering program at the local community centre. Sponsors “Volunteering has helped Laurie Thank you to corporate partners N.C. to feel like he’s worthwhile,” said Bruining & Associates and HHG Legal Laurie’s wife, Derene. Group who deliver complimentary financial planning and legal seminars for people living Moving back to Perth had been a with dementia and their carers. consideration after Laurie’s diagnosis but now Derene says Manjimup is Advocates where they will stay. We are grateful to clients, members and “I’m being well supported now. I Dementia Advocates who allowed us to can’t believe the difference that share their stories to raise awareness of small changes have made for Laurie’s dementia. In particular, we thank Dorothy, independence. I know this is where Claire and Patrick, Laurie and Derene, Rae- Laurie gets the best care and support Ellen and Barry, Marie and Alfie, and Jackie and I think the future looks really good. and Andy for opening their hearts and The program is going to help a lot of sharing their personal journeys as part of other families as well.” our Christmas and Tax appeals. Laurie no longer spends his days at With your ongoing support we are able to home. He is able to volunteer within plan ahead to continue our work. his community, giving him a sense of pride and purpose.
Annual Report 2018/19 › 27 Event Highlights