There is no prevention. There is no cure.

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2 LEADERS SUMMIT DAY 2, TUESDAY 17 APRIL 2018 GLOBAL ISSUES LOCAL RESPONSES Workshop 3 Leadership Dementia Care Skills Train-The-Trainer Programme in Malaysia and Brunei: An Asia Pacific Region Initiative Every 3 seconds, someone in the world develops dementia. There are now approximately 50 million people worldwide with the disease. 63% of which live in low and middle-income countries. By 2050, this number will treble to 135 million. Approximately 71 million people will be living with dementia in the Asia Pacific region, 68% of the total global figure. There is no prevention. There is no cure.

3 The Global Incidence of Dementia

4 The Cost of Global Dementia Care This healthcare expenditure does not take into account the personal experiences of persons with dementia and their families who are dealing with the challenges of the disease everyday.

5 Estimated increase of people living with dementia globally There are now approximately 50 million people worldwide with the disease. 63% of which live in low and middle-income countries. By 2050, over 71 million people will be living with dementia in the Asia Pacific region. This is 68% of the total global figure of 135 million.

6 As a result, dementia will be the most serious health crisis of the 21st century *. *Based on DEMENTIA IN THE ASIA PACIFIC REGION, ADI Report This will amount to a total healthcare cost of

7 In Malaysia Population: 32 million There are approximately 123,000 persons with dementia in This will be rising to: 261,000 in ,000 by 2050 This will cost RM689 million (approx. US$175 million/year) in healthcare health budget: RM28.5 billion. Operating costs: RM 24.7 billion ie 93% of total budget. In Brunei Population: 450,000 ADI forecast ranks Brunei third highest (in %) of persons with dementia in Asia Pacific after Singapore and Thailand. There is no available data on dementia. Estimate from MOH, suggests that in 2015, there are more than 2,000 people living with dementia. ADI estimated 1,000 persons. This will be rising to: 7,200 in ,000 by 2050 This will cost B$65 million in healthcare health budget: B$320 million. Healthcare is free in Brunei.

8 In Malaysia There is a small number of daycare and long-term care facility for older people with dementia for residence or respite. A research conducted by Frost & Sullivan on Market Impact 2018* states an urgent need of intervention and need for early diagnosis. * China, Singapore, India, Australia, Japan, South Korea and Malaysia. Malaysia has the highest prevalence of mental disorders yet lags behind in active health service reform. In Brunei There is no long-term care facility for older people with dementia for residence or respite. Families bear the full burden of caring for loved ones with dementia. Brunei Darussalam s Declaration on Strengthening Family Institution: Caring for the Elderly calls for action to strengthen and support efforts to create a family-friendly social environment. This will require improving awareness and skills of family in managing persons with dementia.

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10 There is no prevention and there is no cure for dementia. Quality life for persons with dementia comes with quality care through: training and education on essentials communication and skills to manage the disease. This can be supported by specialists, professional medical and trained nurses, caregivers, care workers trained in aged and dementia care.

11 Dementia Care Skills (DCS) Train-the- Trainers Programme At the Global Level ADI worked with the World Health Organization (WHO) on drafting the policies and guidelines for formulating National Dementia Plans. At the 70th World Health Assembly held in Geneva, the Global Plan on Public Health Response to Dementia ( ) was formally adopted by the WHO on 29 May At Asia Pacific Region Level By 2050, over 71 million people will be living with dementia in the region. This is 68% ie over half the total global figure of 135 million.

12 At Local Level The Dementia Care Skills* (DCS) Train-the-Trainers (TTT) Programme was developed by ADI to address the need to build sustainable capacity in the training of dementia care in developing countries in the Asia Pacific region. In August 2016, ADFM held the first DCS* TTT Programme for Malaysia. 15 participants (13 Malaysians and 2 Bruneians) went through the 5-day intensive workshop in improving care skills for persons with dementia. In August 2017, ADI APRO and ADFM facilitated the training of 15 officers from the Ministry of Health and the Ministry of Culture Youth and Sports in Brunei. The Dementia Care Skills Course is a programme adapted and is based on the accredited Dementia Care Essentials Course from Australia. It utilises an ADI endorsed framework of learning outcomes using quality information materials of international standards on dementia care skills. This Programme provides training for caregivers on best practices from Alzheimer s associations and other global organisations, including an overview of dementia, effective communication, understanding behaviour, care worker issues and support services. This Programme is a crucial part of supporting Alzheimer s associations, care partners and interested individuals in the region to improve care for persons with dementia.

13 DEMENTIA CARE SKILLS (DCS) TRAIN-THE-TRAINER PROGRAMME BRUNEI on AUGUST 2017 Programme was supported by: - Ministry of Health - Ministry of Culture, Youth and Sports - Radisson Hotel - ADA Singapore

14 The Dementia Care Skills Train-The-Trainer Workshop is an intensive 5-day programme. The course framework of learning outcomes are categorised into six modules: 1. Understanding Dementia 2. Behavioural and Psychological Symptoms of Dementia 3. Impact of Dementia and Person Centred Care 4. Effective Communication 5. Purposeful and Meaningful Engagement 6. Application to Care Practices These include presentations and experiential activities. Each participants are to present for 30 minutes on a selected topic in DCS. Feedback on their presentations will be provided by the course participants. Assessment and evaluation are provided by the ADI Facilitators. Each workshop comprise of 12 to 15 participants to allow sufficient interaction and experiences to be gained.

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17 COMPONENTS OF TRAIN-THE-TRAINER PROGRAMME The Train-The-Trainer Programme consists of: 1. A 5-day train-the- trainer workshop This is conducted on-site in each country. Bangladesh, Indonesia, Malaysia and Brunei to 9 months of actual training sessions The new trainers are assessed before given DCS certification and made associate trainers of the ADI member in that country. 3. On-going 12 to 24 months of coaching For the best of the new trainers by ADI Facilitators and peer-learning, while the new trainers start conducting the Train-The-Trainer sessions and learn how to adapt/create curriculum for participants needs.

18 For Malaysia With the training of 13 trainers in August 2016, ADFM launched the first phase of the Dementia Care Skills* (DCS) Workshop in various states. In 2017 A total of 18 DCS Workshops for family caregivers (and their domestic helpers) were organised. 250 participants were given DCS training. The next phases of training to be implemented will be for: foreign and local domestic care workers healthcare professionals. For 2018 A total of 30 DCS Workshops have been planned and will be conducted in the various states in Malaysia. The annual budget to run the DCS Workshops is RM80k.

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20 ADFM DEMENTIA RESOURCE & TRAINING CENTRE (PJDRTC) Knowledge is crucial in quality dementia care and ADFM continues to organise in-house training courses to equip its team of nurses and staff with good care practices. ADFM s purpose-designed Dementia Resource & Training Centre will cater to provide training for healthcare workers, nurses, volunteers and caregivers. With its completion in mid-2018, the urgent need for a larger space to meet the demands for training, conferences and workshops will be met. To also look into the growing need to equip caregivers, healthcare workers and domestic helpers on dementia care skills and coping strategies, ADFM has developed and conducts several training programmes.

21 For Brunei With the training of 15 trainers in August 2017, Brunei launched the first phase of the Dementia Care Skills* (DCS) Workshops in several communities. In 2017 A total of 4 DCS Workshops for senior citizens and cardiac rehabilitation patients. 150 participants attended the workshops. For 2018 A total of 8 DCS Workshops have been planned and will be conducted in 4 districts. The next phases of training to be implemented will be for: foreign and local domestic care workers healthcare professionals.

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27 DEMENSIA BRUNEI Formation of association approved by Registrar of Societies on March On 5 April 2018, met with the Minister of Health to present, discuss and received commitment on: 1. Pusat Amal Cerah Sejahtera (PACS) Demensia Brunei (DB) will continue to run its monthly Dementia Care Skills (DCS) workshops and training in the Subok centre. In near future, DB will plan to conduct health talks and activities as a dementia-friendly community centre. This will be a pilot dementia-friendly community initiative for Brunei located in Brunei- Muara district, in hope the similar will expand to other districts to serve all communities in time to come. 2. Dementia Care Skills (DCS) training DB to work with MoH to identify and train health ambassadors at districts and kampung levels to better serve all communities. This will be a MoH, MCYS and DB partnership with the communities.

28 3. DCS Train-The-Trainer (TTT) Programme it was discussed and proposed for ADI APRO with DB to offer as a accredited course to nursing college and University Brunei, etc. To be discussed further with respective stakeholders. 4. Dementia Awareness & Healthy Lifestyle Campaigns MOH to look into 10 signs of Dementia & Risk Prevention. As many as one in three cases of dementia could be prevented, if MOH were to promote risk reduction of NCDs including dementia, and promote healthy living at all ages, and healthy ageing. WuChun, a Bruneian and international celebrity has confirmed his participation to advocate and support to further raise awareness of dementia in ASEAN and Asia Pacific. 6. 'Dementia Awareness Forum' to commemorate World Alzheimer's Month (WAM) 2018 To invite speakers local and abroad to speak on selected topics to advocate and raise further awareness. Same time, to run a concurrent DCS workshop for professionals and healthcare workers.

29 MOVING FORWARD Since 2016, the DCS Train-The-Trainer Programme was conducted in: 1. Bangladesh (January 2016) 2. Indonesia (March 2016) 3. Malaysia (August 2016) 4. Brunei (August 2017) A total of 60 potential trainers have been trained in 4 countries. With nearly 1000 family caregivers and care workers trained by active trainers in each country. ADI APRO has organised the first ADI Asia Pacific DCS Training-of-Trainers in Jakarta in end-april Participants comprising the best of the best trainers and observers from 15 countries: Australia, Indonesia, Singapore, Nepal, Pakistan, Tonga, Thailand, Myanmar, Iran, India, Kenya, Japan, Taiwan, Malaysia and Brunei. The aim is to enable DCS TOT participants to: effectively run the programme evolve it to meet future needs; and contribute to the community.

30 Anyone can get Dementia. There is no prevention. There is no cure. There are over 100 forms of dementia.

31 ADI is the international federation of Alzheimer associations around the world, in official relations with the World Health Organization (WHO). Each member is the Alzheimer s association in their country who support people with dementia and their families. ADI's vision is prevention, care and inclusion today, and cure tomorrow.

32 ADI organises one international conference each year, working with different member Alzheimer s associations around the world. Currently, there are 90 ADI-member countries.

33 The ADI Conferences are a unique opportunity to: bring together everyone and all with an interest and stakeholder in dementia: people living with dementia, family members, clinicians, medical and care professionals, scientists, the public, staff and volunteers of Alzheimer associations, etc. to share and learn from one another. The ADI APRO hosts the annual Asia Pacific Regional Conference (APRC) for the Asia Pacific Region. Currently, there are 17 ADI-member countries in APRO with 5 associations under the ADI Member Development Programme (MDP).

34 The 21st ADI Asia Pacific Regional Conference in MALAYSIA 1-3 November 2018 This Conference could likely be followed by a WHO Bi-Regional Meeting to maximise the meeting of the participants from international and Asia Pacific member countries gathered for the annual ADI APRC.

35 Terima kasih Thank you!

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