Best Practice Counselling and Support Service Models Project Leanne Wenig

1. Best Practice Counselling and Support Service Models Project Leanne Wenig General Manager Client Services Generously funded by the Wicking Trust

2. Vision:A society committed to the prevention of dementia, while valuing and supporting people living with dementia Mission:Providing leadership in dementia policy, risk reduction and services Alzheimer’s Australia Vic

3. 80 staff and 111 volunteers : statewide Rural/Regional services: counsellors/dementia consultants 8 regional offices and 7 satellite consulting rooms – working with other services Metropolitan based services: National Dementia Helpline Library/Dementia and Memory Community Centre Counsellors Dementia Consultants Educators Specialists and project workers. Corporate, finance and administration services Our staff and volunteers

4. Our regional/rural locations

5. National Dementia Helpline Dementia consultants – information, support, referral and assistance to navigate the service system Counselling Early Intervention Programs – E.g. Living with Memory Loss Groups Memory Lane Cafes Telephone Outreach Program Telesupport Program Specific programs for people with Younger Onset Dementia Specific programs for people with diverse needs Client Services – what do we do?

6. What the customer How the project leader How the designer Wanted understood it designed it Project Management what can go wrong!

7. Project Management what can go wrong! What was documented How it was How it was supported operationalized

8. When the project What the customer really What the customer was delivered wanted actually needed Project Management what can go wrong!

9. Growing demand: Dementia is the leading single cause of disability in older Australians (aged 65 years or older) It is estimated that there are approximately 20,000 new cases of dementia in Victoria in 2009 Incidence is projected to increase by 400%, reaching 94,000 per year by 2050 (Access Economics 2009) Around 69% of Victorians with dementia, or about 45,000 people, live in 4 metropolitan areas (Access Economics 2009 In regional Victoria, the older population profile tends to mean a higher proportion of the population has dementia Background to the project

10. Changing Victorian Demographic: The middle-aged children of people with dementia are the key supporters and carers; particularly women Consumers are better informed. They come to our organisation with more complex needs and issues, requiring different interventions Families and carers are more ‘time poor’ Background to the project

11. Unmet and developing needs: There are ‘special groups’ of consumers who face additional issues such as: People with younger onset dementia (under 65 years) Younger carers Culturally and linguistically diverse communities Aboriginal and Torres Strait Islander communities Existing service models are unsustainable in the context of increasing demand and changing consumer needs Background to the project

12. Funding support from Governments: Funding increases to both Alzheimer’s Australia Vic and the Cognitive Dementia and Memory Services have not kept pace with the rapidly increasing growth The increase in demand is due to: The ageing population A gradual de-stigmatisation of dementia (meaning more people are gradually coming forward earlier) More accurate earlier diagnosis The availability of some medications and treatments Background to the project

13. To develop new service models for the provision of responsive, best practice counselling and support for people with all forms of dementia, their families and carers To be responsive to emerging consumer needs in Victoria To be person and family-centred, with the development of responsive support services to meet the needs of diverse groups To be cost-efficient, enhancing sustainability To be priority-issue focused To be proactive in addressing unmet needs associated with the emerging dementia epidemic Our Objectives were…

14. To document current and projected service demand To document current service capacity in Alzheimer’s Australia Vic and the Cognitive Dementia and Memory Services (CDAMS) To document the cost benefits of early diagnosis and intervention To document evidence of best-practice service models To undertake action research to pilot service innovations, evaluate them and refine the most effective and cost-efficient models To analyse the impact of applying new models of service in terms of addressing unmet needs and increasing demand To report findings to enable their application with government and with other related services Our approach was…

15. Overall there is a dearth of research in the support services and counselling for people with dementia CBT as a counselling intervention has the greatest demonstrated efficacy Telephone and internet interventions are just as efficacious as face to face interventions under certain circumstances People with younger onset dementia have specific needs that require a different type of service response Dementia affects different population groups differently, and therefore requires a tailored response Summary of the Literature Review

16. CDAMS provide diagnosis and assessment of the psychological, medical and social difficulties associated with memory changes CDAMS provide a primary entry point for people with dementia or memory loss into the service system, and is integral to them accessing timely support services Some of the issues identified in the report include: Access Assessment Waiting lists Who is CDAMS most appropriate for? Referral pathways Cognitive Dementia and Memory Clinics – An integral role.

17. Clients of Alzheimer’s Australia Vic 69,426 contacts were made 75% of all contacts were made by families 14% of all contacts were from service providers The majority of carers were female (73%), compared with one-quarter male (24%) Of those with dementia 56% were female and 39% were male The majority of persons of concern were living in their own homes (85%) The most common primary modes of contact involved telephone usage, comprising two thirds of contacts (66%) Summary of the Data For the period July 2003 - June 2008

18. Cognitive Dementia and Memory Service – a sample of three clinics A consistent increase in the number of clients attending the three clinics Mt Eliza, Caulfield and Bendigo (8.2%, 34.3% and 3.6% respectively) The portion of clients referred to AAV was between 15-27% for the three clinics There was a 90% increase in 70-79 year old clients who were referred to AAV and a 30% increase in octogenarians, while there was a decrease in those aged 69 or less

19. New models of Counselling and Support Action Research Methodology Action research follows a learning cycle of: Plan, Act, Observe, Reflect Action research supports participants to take risks. There are no mistakes – just learning..

20. Online counselling Online services for people with younger onset dementia A comparison of face-to-face vs. telephone-based counselling CALD best practice counselling ‘Cognitive Behavior Therapy Group intervention’ was identified as a fifth pilot worth undertaking, but was initially considered to be out of project scope. Fortunately, we subsequently obtained funding for this pilot and the work is now being developed. Four pilots were selected

21. Future resourcing needs Strengthening referral pathways Introduce new models such as online counselling, telephone counselling and online communities Review infrastructure needs to support new models of service Review opportunities to collaborate on telephone and online services Build a more diverse staffing profile to support new modalities Develop the CALD project with key stakeholders Work with indigenous organisations to tailor services Refine and develop data systems to support future service planning. Recommendations

22. Greater application of web based and telephone technologies. Clear imperatives for increased funding and more flexible funding to support new modalities. Early intervention is highly efficacious. The link between CDAMS and Services such as those provided by AAV are integral to early take up of services. More research is needed in the area of therapeutic interventions in dementia care. Greater diversity of skills amongst support staff is needed. Application to the wider sector

23. National Dementia Helpline 1800 100 500 An Australian Government Initiative www.alzheimers.org.au Select Victoria and publications Further Information