Presentation on theme: "Best Practice Counselling and Support Service Models Project"— Presentation transcript:
1Best Practice Counselling and Support Service Models Project Leanne WenigGeneral Manager Client ServicesGenerously funded by the Wicking Trust
2Alzheimer’s Australia Vic Vision: A society committed to the prevention of dementia, while valuing and supporting people living with dementiaMission: Providing leadership in dementia policy, risk reduction and services
3Our staff and volunteers 80 staff and 111 volunteers : statewideRural/Regional services:counsellors/dementia consultants8 regional offices and 7 satellite consulting rooms – working with other servicesMetropolitan based services:National Dementia HelplineLibrary/Dementia and Memory Community CentreCounsellorsDementia ConsultantsEducatorsSpecialists and project workers.Corporate, finance and administration services
5Client Services – what do we do? National Dementia HelplineDementia consultants – information, support, referral and assistance to navigate the service systemCounsellingEarly Intervention Programs – E.g. Living with Memory Loss GroupsMemory Lane CafesTelephone Outreach ProgramTelesupport ProgramSpecific programs for people with Younger Onset DementiaSpecific programs for people with diverse needs
6Project Management what can go wrong! What the customer How the project leader How the designerWanted understood it designed it
7Project Management what can go wrong! What was documented How it was How it was supportedoperationalized
8Project Management what can go wrong! When the project What the customer really What the customerwas delivered wanted actually needed
9Background 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 2009Incidence 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 2009In regional Victoria, the older population profile tends to mean a higher proportion of the population has dementiaDementia accounts for one in every six years ‘lost’ to disability. It is one of the fastest growing sources of major disease burden, expected to overtake coronary heart disease in its total wellbeing cost by 2023 (Access Economics 2009).This is due primarily to the ‘ageing population’ phenomena and the timeframe when ‘baby boomers’ are entering the aged care system en masse.
10Background to the project Changing Victorian Demographic:The middle-aged children of people with dementia are the key supporters and carers; particularly womenConsumers are better informed. They come to our organisation with more complex needs and issues, requiring different interventionsFamilies and carers are more ‘time poor’Compared with times past, they are generally in the workforce and need different models to receive support and assistance than their equivalents a decade ago.Better informed through general knowledge and the internet about ‘the basics’ of Alzheimer’s disease and its impact”; as compared to a decade ago,and compared to a decade ago require short sharply focussed interventions ‘at their convenience’, rather than ongoing support e.g. as provided by the carer support groups of the past.
11Background 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 carersCulturally and linguistically diverse communitiesAboriginal and Torres Strait Islander communitiesExisting service models are unsustainable in the context of increasing demand and changing consumer needsCurrently over 9,600 Australians under the age of 65 have younger onset dementia.
12Background 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 growthThe increase in demand is due to:The ageing populationA gradual de-stigmatisation of dementia (meaning more people are gradually coming forward earlier)More accurate earlier diagnosisThe availability of some medications and treatments
13Our 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 carersTo be responsive to emerging consumer needs in VictoriaTo be person and family-centred, with the development of responsive support services to meet the needs of diverse groupsTo be cost-efficient, enhancing sustainabilityTo be priority-issue focusedTo be proactive in addressing unmet needs associated with the emerging dementia epidemicMore responsive - such as: more "daughter carers" in the workforce; and the higher incidences of younger onset dementia that emotionally impacts the younger children of people with a diagnosis of dementia at a younger ageincluding: people who are geographically and/or socially isolated; people from CALD backgrounds; and Aboriginal and Torres Strait Islander communities
14Our 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 interventionTo document evidence of best-practice service modelsTo undertake action research to pilot service innovations, evaluate them and refine the most effective and cost-efficient modelsTo analyse the impact of applying new models of service in terms of addressing unmet needs and increasing demandTo report findings to enable their application with government and with other related services
15Summary of the Literature Review Overall there is a dearth of research in the support services and counselling for people with dementiaCBT as a counselling intervention has the greatest demonstrated efficacyTelephone and internet interventions are just as efficacious as face to face interventions under certain circumstancesPeople with younger onset dementia have specific needs that require a different type of service responseDementia affects different population groups differently, and therefore requires a tailored response
16Cognitive Dementia and Memory Clinics – An integral role. CDAMS provide diagnosis and assessment of the psychological, medical and social difficulties associated with memory changesCDAMS provide a primary entry point for people with dementia or memory loss into the service system, and is integral to them accessing timely support servicesSome of the issues identified in the report include:AccessAssessmentWaiting listsWho is CDAMS most appropriate for?Referral pathwaysThe Cognitive, Dementia and Memory Service (CDAMS) was developed by the Victorian Government in recognition of the need to provide a specialist multidisciplinary diagnostic, referral and educational service for people experiencing memory loss and their families. Early intervention and prevention, in terms of information and education, has been posited as a way to reduce the burden on the health system and the people directly affected by the disease – patients, carers and their families. CDAMS provides diagnosis and assessment of the psychological, medical and social difficulties associated with memory changes. It aims to provide information and advice on management and referral to other services as appropriate. CDAMS does not provide ongoing treatment, support or case management.AccessMost CDAMS now receive referrals via a central point of access – in most cases a hospital administered centralised intake that refers to other subacute ambulatory care services (SACS) funded services as well as to CDAMS. Prior to the introduction of a central point of access, CDAMS staff directly prioritised referrals according to their direct assessment of the urgency. It reportedly can take 6 months in order to train a CDAMS worker in how to effectively identify a suitable referral, and how to assess a client’s immediate needs.The centralised intake has changed the degree of control CDAMS staff have over the quality and flow of their referrals. CDAMS staff have reported through these consultations that there are two main problems impacting on their service delivery: Inappropriate referrals: These are people whose need for CDAMS has been incorrectly assessed and they have been put on a waiting list for CDAMS while their ‘real’ need for another service is not being met. CDAMS coordinators are also concerned that people who truly need the service CDAMS provides are being inappropriately directed elsewhere, and opportunities for early intervention or early diagnosis are being lost.The central access point is causing CDAMS to ‘re-triage’ referrals even after the centralisedAssessment: Staff consulted during this action research project advised that the service a client receives at CDAMS is of a high quality. However issues remain around timely accessWaiting lists: Waiting lists for the medical assessment at CDAMS can be lengthy, varying from 6 weeks to 6 months, and this brings with it its own set of concerns. CDAMS coordinators express concern that if all eligible people were to gain appropriate referrals to CDAMS or private specialists in a ‘timely’ fashion, early enough in the disease so they may potentially slow its progress and maintain some quality of life (perhaps through access to appropriate medication), the service system may not be able to cope with this demand. A concern expressed by CDAMS staff and others working in the dementia field, is that despite increasing awareness in the community, people are still receiving their dementia diagnosis after the disease is already quite advanced. This is particularly problematic for people who have other compounding health concerns, are socially or geographically isolated and/or who have English as their second language.Appropriateness: CDAMS coordinators were asked via this consultation for their views on the changing ‘face’ of dementia. Their observations were that people are presenting younger and with a more complex set of health needs than used to be the case. Anecdotally they report that many people with dementia, in some parts of Victoria more than others, have other forms of chronic illness, which impacts on their ability to access support for their dementia. The 49ethnic profile of people with dementia is also changing.Referral pathways: CDAMS provide newly diagnosed people (who are all at varying stages in the progression of their dementia) with information about support services. However most CDAMS representatives noted people often require support and encouragement to access these services, immediately post diagnosis, and CDAMS ability to provide this ‘linking’ function is restricted by their funding arrangements and workload.
17Summary of the Data For the period July 2003 - June 2008 Clients of Alzheimer’s Australia Vic69,426 contacts were made75% of all contacts were made by families14% of all contacts were from service providersThe majority of carers were female (73%), compared with one-quarter male (24%)Of those with dementia 56% were female and 39% were maleThe 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%)
18Cognitive 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 clinicsThere was a 90% increase in 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
19New models of Counselling and Support Action Research Methodology Action research follows a learning cycle of:Plan, Act, Observe, ReflectAction research supports participants to take risks. There are no mistakes – just learning..
20Four pilots were selected Online counsellingOnline services for people with younger onset dementiaA comparison of face-to-face vs. telephone-based counsellingCALD 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.Online Counselling - using one-to-one text-based counselling, via the internet, in real time, as an alternative to more traditional ‘face-to-face’ counselling.Online services for people with younger onset dementia: providing an online forum and an informal ‘chat’ room including moderated and facilitated discussion groupsCALD best practice counselling: ensuring that clients from CALD communities have access to tailored and timely support services, through the establishment of sustainable relationships between AAV and the communities. (Note: this project received three year funding via a charitable trust in late 2010).
21RecommendationsFuture resourcing needsStrengthening referral pathwaysIntroduce new models such as online counselling, telephone counselling and online communitiesReview infrastructure needs to support new models of serviceReview opportunities to collaborate on telephone and online servicesBuild a more diverse staffing profile to support new modalitiesDevelop the CALD project with key stakeholdersWork with indigenous organisations to tailor servicesRefine and develop data systems to support future service planning.Recommendation 1 : That AAV seeks discussions with funding bodies about future resourcing needs to respond to a growing demand, and to scope the feasibility of creating a national online community.Recommendation 2 : That AAV shares their growing experience and expertise with referral and access partners. strengthen referrals, particularly with CDAMS.Recommendation 3 : That AAV integrates the provision of new modes of counselling and support by:Explicitly providing, and promoting the availability of, telephone counsellingImplementing online counselling as an ongoing option available to clientsReactivating the online forum, and promoting it widely.Recommendation 4 : That AAV considers the professional development and infrastructure needed to encourage staff to broaden their skills, providing telephone and online counselling.Recommendation 5 : That AAV investigates collaboration with agencies also providing telephone and online counselling and support services.Recommendation 6 : That AAV develops a future staffing profile, considering the diversity of staff and skills needed to support the provision of counselling and support through a range of service modes.Recommendation 7 : That AAV shares the learning's from the CALD project at key points in the life of the project with AAV staff, interstate counterparts, and other referral and access points.Recommendation 8 : That AAV commences some initial discussions with key Indigenous organisations to gauge their level of interest in working together.Recommendation 9 : That AAV reviews data collection systems to ensure future service planning is supported.
22Application 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.There is great opportunity to partner with other servcies to deliver web based and telephone technologies.Research demonstrates quite clearly that EI results in better outcomes for clients and are cost affective over the longer term
23Further Information National Dementia Helpline 1800 100 500 An Australian Government InitiativeSelect Victoria and publications