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National Cross Cultural Dementia Network Newsletter 2
2013 has already seen a number of significant events take place, and is set to be a big year for Alzheimer’s Australia. National President Ita Buttrose, AO, OBE, was named Australian of the Year in January, and we are all delighted that Ita has been recognised for her immense contributions to the Australian community. Since Ms Buttrose took on the role of National President in 2011, she has led the Alzheimer’s Australia Fight Dementia Campaign, advocating for the more than 300,000 Australians with dementia to tell their stories and urging the government to put in place a plan to tackle dementia. In 2013 Ita will continue to be a powerful advocate for increased funding for dementia research, and the role research must play if we are to move towards a World Without Dementia. On the 19-20 March, Alzheimer’s Australia held a Younger Onset Dementia Summit in Melbourne to highlight unique challenges faced by the 24,000 people living with the condition. More than 320 service providers, stakeholders, people with dementia and policy makers across the aged care, disability and mental health sectors attended the Summit to discuss and address the challenges that people living with younger onset dementia have to overcome. A report, A New Horizon?, was released at the summit and outlined the issues currently faced by this group and how the National Disability Insurance Scheme (NDIS), and other funding systems including health and income security, should respond.
A New Horizon? identified six priority areas for action: 1. Increased awareness to reduce stigma and to improve the opportunity for social participation by individuals in their local community.
2. Timely and accurate diagnosis with access specialist services as needed. 3. A National Disability Insurance Scheme that places the person with younger onset dementia and their families at the centre,and supports their choice and control over their future and the services and supports they require. 4. Action by service providers to redesign their services so they can respond flexibly to the goals, aspiration and plans of younger people with dementia. 5. Opportunities to participate in society with access to employment and adequate income security. 6. There needs to be a greater investment in research into cause, cure and care of younger onset dementia if there is to be a better understanding of the condition. A copy of the report can be found here.
National Cross Cultural Dementia Network Newsletter 3
Alzheimer’s Australia is cautiously optimistic that the needs of people living with this condition are being recognised in Government policy. The National Disability Insurance Scheme (NDIS), now known as Disability Care Australia, promises to transform a heavily rationed system into a market in which funding is allocated to the person with the disability, and their families. This will enable people to exercise choice over the services they receive. Younger people with dementia will be eligible for assistance As part of the Government’s Living Longer. Living Better. aged care reform package a commitment was made of $16.8 million over more than 3 years to fund Alzheimer’s Australia to employ 40 younger onset dementia key workers. These key workers will provide individualised assistance to help access care and support. They will also play an important role in identifying service gaps and service development with service providers. It is critical that the voices of people living with younger onset dementia and their carers continue to be heard and that their views are utilised to help shape reform in the disability and aged care sectors.
Earlier this year, the Department of Health and Ageing released the National Ageing and Aged Care
Strategy for People from Culturally and Linguistically
Diverse Background . Alzheimer’s Australia, through the National Cross Cultural Dementia Network, was able to ensure that dementia was embedded in the Strategy. We will continue to work in partnership with the Federation of Ethnic Communities Council of Australia and other CALD agencies to meet the needs of our CALD consumers. The remainder of this year will see the roll out of the Younger Onset Dementia Key Worker Program, Alzheimer’s Australia’s 15th National Conference in Hobart, the Love, Loss and Laughter exhibition running from May through to November, international speaker Julian Hughes touring the country in June and July, and of course the election in September. Thank you for your continued support and I look forward to working with you in the year ahead. Glenn Rees Chief Executive Officer, Alzheimer’s Australia
Alzheimer’s Australia www.alzheimers.org.au Alzheimer’s Disease International www.alz.co.uk Australian Government www.australia.gov.au Australian Multicultural Foundation www.amf.net.au Cultural Diversity in Ageing www.culturaldiversity.com.au Federation of Ethnic Communities Council (FECCA) www.fecca.org.au
National Cross Cultural Dementia Network Newsletter 4
A greater awareness of dementia as a medical disease that warrants diagnosis and support is continuing to spread across the culturally and linguistically diverse communities of NSW. “Often, families notice a decline in a family member but attribute it to ‘just old age’, not realising that these early signs can herald changes that will become far more profound”, says Michelle Basic, CALD Educator AANSW. “In many ways this very common delay in seeking a diagnosis is not surprising given the latest findings by Alzheimer’s Disease International who report “in high income counties only 20-50% of people with dementia are recognised and reported in primary care’. On that basis, for the one quarter of the population in NSW who do not use English as their primary language, originating from countries with a lower level of health literacy, the rate of recognition and action is very much worse”. To encourage communities to understand that dementia is not a normal part of ageing and to dispel many false perceptions about what causes changes in a family member, the CALD initiatives focus on working with community leaders to bring education and support networks directly to social groups and places, such as schools where ‘everyday’ people congregate. The social approach is people friendly and because the material has been written in everyday language, using real life experiences of people from that specific culture it resonates with audience members. So far, DVDs titled ‘It’s not a disgrace – it’s dementia’ have been produced for eight communities. These each feature health professionals and families of that culture speaking about dementia and encouraging their fellow community members to recognise the disease and to not be ashamed and fearful of a diagnosis. Each DVD has English subtitles and are good resources for everyone who has an interest in developing a greater understanding of what dementia ‘looks like’ in a family home.
To view these stories please refer to http://www.youtube.com/user/AlzheimersAustralia?feature=watch These and additional multimedia resources have proven to be popular on the internet as well as the hard copies that are being circulated within the communities. Michelle explains “there’s sincerity and a very powerful message that comes across when you combine experts, community leaders and real families in the one resource that really gets to the core of the disease and the stigma surrounding it”. he willingness of community leaders to lend their influential voices to the campaigns has been invaluable. Combined with the courage of individual families to speak up publically on film that has now an international audience, with the unselfish aim of simply helping others, have been the factors that set this type of resource apart and why families living with dementia are now emerging from these communities. Michelle Basic Educator Alzheimer’s Australia NSW
National Cross Cultural Dementia Network Newsletter 5
CHAIRPERSON Pino Migliorino
NSW Yvonne Santalucia
South West Sydney Area Health Service
Dr Desiree Leone
Western Local Health District
VIC Maree McCabe
Alzheimer’s Australia Vic
Grace Roberto
Alzheimer’s Australia Vic
Jaklina Michael
RDNS
Nicky Hayward-Wright
Knowledge Management Consultant
Dr Dina LoGiudice
Royal Park Campus Melbourne Health
QLD Dino Bazarbassis
Nova Community Care
WA Linda Grenade
Alzheimer’s Australia WA
ACT Lily Muthurajah
Multicultural HACC
SA Gosia Skalban
Domiciliary Care
Ron Sinclair
National Carer Advisory Committee
Dr. Faizal Ibrahim
Consultant Geriatrician QEH
TAS Ms Marianne Potma
Migrant Resource Centre, Southern TAS
NT Dr Sadhana Mahajani
ACAT Northern Territory
AUSTRALIAN GOVERNMENT Mark Gaukroger
ALZHEIMER’S AUSTRALIA Glenn Rees
Ellen Skaldzien
SECRETARIAT Helena Kyriazopoulos
In celebration of the Dignity in Care Action Day, The Queen Elizabeth Hospital, Adelaide recently hosted the inaugural Dignity in Care ‘it matters’ Conference on the 1st of February 2013. More than 180 health care professionals and Dignity Champions from across South Australia attended the hugely successful conference. There were strong representations from the acute care and community care sectors, Regional SA, volunteer organisations including Alzheimer’s Australia SA. Maggie Beer, Dignity in Care Patron provided the keynote speech talking on her favourite subject and her passion for ‘good for life’. Information stalls and speaker panel sessions also provided opportunities for Champions to inquire and also share success stories. One of the aims of the Conference is to strengthen the partnership with stakeholders including those from volunteers, consumers’ and non-governmental organizations. The Queen Elizabeth Hospital (TQEH), Central LHN Transition Care Program and Alzheimer’s Australia SA, are proudly piloting the Dignity in Care campaign in Australia. Launched for the first time in Australia in early 2011 at TQEH, and with Ms Maggie Beer as the Dignity Patron, this program aims to change the culture of South Australian Health services by reinforcing the importance of treating patients with Dignity and Respect. The Dignity in Care Program focuses on building partnerships with government and non-government organisations including Aged Care Providers, Country Health SA and Disability SA. BELOW: Sue-Ellen and Gina Murphy from DBMAS SA, demon-strating Doll Therapy to Maggie Beer.
National Cross Cultural Dementia Network Newsletter 6
The Dignity in Care program has already enlisted more than 800 enthusiastic champions since it’s launched. The program is modelled from the UK program “Dignity in Care”, and has enlisted more than 40000 Dignity Champions. The program encourages the use of clinical governance strategies and continued staff education to promote the 10 Dignity Principles. The Program runs over a 2 year cycle, and has a strong focus on themes such as Dementia, Delirium, End of Life Care, Cultural Diversity, Spirituality and Respecting Patients’ Choices. To further enhance the education program for nurses, the Fundamentals of Care for Nursing Project was piloted to support education and training. By enlisting Dignity Champions from all walks of life, a Dignity in Care message is spread throughout the Queen Elizabeth Hospital and across the acute and community care sectors including regional SA.
For more information about the Dignity in Care program please e-mail: [email protected]. On behalf of the Dignity in Care Working Party Dr Faizal Ibrahim [email protected] FRACP, CCT UK, MRCP UK,MBBCh,LRCPSI Ir Consultant Geriatrician, The Queen Elizabeth Hospital Clinical Director, DBMAS SA Proudly Championing the Dignity in Care Program
THE TILES OF LIFE, COLOURING THE FUTURE
14-17 MAY 2013
Hotel Grand Chancellor, Hobart, Tasmania
For information click here
FLINDERS UNIVERSITY, ADELAIDE
27-30 JUNE 2013
For information click here
GOLD COAST CONVENTION & EXHIBITION
CENTRE, QUEENSLAND
6-8 NOVEMBER 2013
For information click here
BUILDING A NATIONAL APPROACH TO PREVENT ABUSE OF OLDER AUSTRALIANS
17 AND 18 JUNE 2013
ADELAIDE CONVENTION CENTRE, SA
For information click here
National Cross Cultural Dementia Network Newsletter 7
Researchers at Flinders University are conducting a study into language use amongst CALD people with dementia. The study addresses a number of key issues : 1) the anecdotal evidence that bilingual
people with dementia revert to using their first language;
2) language abilities in people’s first language 3) the clinical challenge of screening bilingual people with dementia. Use of first language: Anecdotal evidence suggests that people with dementia revert to their first language. For instance, an early sign of dementia might be the observation that grandparents start using their first language when previously they always addressed their grandchildren in English. The Flinders study involves comparing bilingual people with and without dementia. Pattern of decline in first language ability: There has been little research on the decline of language abilities in bilingual individuals with dementia. In the Flinders study, language use in the first and second language of people with dementia will be studied three times over a period of one year. The expectation is that English will be more severely affected over the one year period than the first language. The challenge of screening bilingual people for
dementia: Language ability plays a significant role in the screening and diagnosis of dementia. Firstly, the diagnosis of dementia is primarily based on the interaction and communication between patient and physician (GP). Secondly, language forms a significant role in screening tests for dementia. Therefore, the screening (and diagnosis) of dementia can be more difficult or even inconclusive in a bilingual speaker who had limited English prior to developing dementia.
The study will be conducted in two phases: Phase one is underway and involves the Dutch community in South Australia. This part of the study is conducted in collaboration with Rembrandt Court Aged Care Facility and the Netherlands Australian Aged Services Association Inc. (NAASA). Phase two will be rolled out later this year involving the German and Italian speaking community. The findings of the study may lead to a better understanding of the importance and role of first and second language in the screening for dementia and may lead to a better awareness of language-related issues regarding service delivery to older bilingual people with dementia. Dr Willem van Steenbrugge Department of Speech Pathology and Audiology, Flinders University For more information ph 8204 5956 or email: [email protected]
