Best Practice Counselling and Support

Service Models ProjectLeanne Wenig

General Manager Client Services

Generously funded by the Wicking Trust

Alzheimer’s Australia Vic

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

Our staff and volunteers

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 regional/rurallocations

Client Services – what do we do?

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

Project Managementwhat can go wrong!

What the customer How the project leader How

the designerWanted understood it designed it

Project Managementwhat can go wrong!

What was documented How it was How it was supported

operationalized

Project Managementwhat can go wrong!

When the project What the customer really What the customer

was delivered wanted actually needed

Background to the project

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

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

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

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

Our Objectives were…

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 approach was…

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

Summary of the Literature Review

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

Cognitive Dementia and Memory Clinics – Anintegral role.

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

Summary of the Data For the period July 2003 - June 2008

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%)

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

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..

Four pilots were selected

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.

Recommendations

1. Future resourcing needs

2. Strengthening referral pathways

3. Introduce new models such as online counselling, telephone counselling and online communities

4. Review infrastructure needs to support new models of service

5. Review opportunities to collaborate on telephone and online services

6. Build a more diverse staffing profile to support new modalities

7. Develop the CALD project with key stakeholders

8. Work with indigenous organisations to tailor services

9. Refine and develop data systems to support future service planning.

Application to the wider sector

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.

Further Information

National Dementia Helpline1800 100 500

An Australian Government Initiative

www.alzheimers.org.auSelect Victoria and publications