Evaluation of the Carer Education Training Project (CEWT)

AN AUSTRALIAN GOVERNMENT INITIATIVE Evaluation of the Carer Education Training Project (CEWT) Final Report Completed for Alzheimer s Australia by Applied Aged Care Solutions

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Acknowledgements Applied Aged Care Solutions would like to acknowledge the assistance provided by family carers, respite workers and managers in completing the evaluation materials. Many family carers also gave their time for in-depth telephone discussions some 4-months after they had participated in the course. The dedication and commitment of family carers to the people they support provides us with the inspiration to continue our work in this area. We would also like to thank Alzheimer s Australia CEWT staff who assisted us with our many discussions and the time-consuming and demanding data collection tasks that are a necessity if any program is to be properly evaluated. We would also like to thank the staff from the various Carers Associations around Australia that also participated in discussions on the CEWT program. Richard Rosewarne Managing Director Applied Aged Care Solutions 3

Table of Contents Executive Summary... 7 1. CEWT Program Overview... 7 2. CEWT Course Description... 7 3. Evaluation Methodology... 8 4. Course Preparation and Design... 10 5. CEWT Program Activity (July 2002 June 2003)... 14 6. CEWT Course Participant Profile... 15 7. Course Delivery Modes... 16 8. Course Details & Participants... 17 9. Role of the Carers Association... 18 10. Project Outcomes Did the CEWT Course Work?... 20 11. Respite Services Views on the CEWT Course... 26 12. Did the CEWT Program Meet the Specified Objectives?... 29 13. Did the CEWT Program Meet the Overall Objective?... 30 Recommendations... 31 1. Introduction... 37 2. Evaluation Methodology... 38 2.1 Overview... 38 Table 2.1: CEWT Course Participant Registration Information... 39 Table 2.2: Data Collection Summary Overview... 41 2.2 Evaluation Tasks... 42 Table 2.3: Summary of Tasks... 42 2.3 Data Collected on the National Data System... 44 Table 2.4: Number of Distinct People recorded on CSCM attending CEWT Courses (July 2002 June 2003)... 44 Table 2.5: Number of People Contacts recorded on for CEWT Attendees... 44 (July 2002 June 2003)... 44 3. Demographics & Program Activity... 45 3.1 National Data... 45 Table 3.1: Respite Worker Courses - Number of Groups and People... 46 Table 3.2: Family Carer Courses - Number of Groups and people... 46 Figure 3.1: CEWT Courses - Number of Groups in The 12-Month Period... 47 3.2 Evaluation Data... 48 Table 3.3: Respite Workers Data Collection... 48 Table 3.4: Family Carers Data Collection... 48 3.3 Respite Workers... 49 Table 3.5: Profession Of Respite Workers Who Completed An Evaluation Form... 49 Table 3.6: Respite Worker Profession As Listed In CSCM (July 2002 June 2003)... 49 Table 3.7: Respite Worker Employment Location (July 2002 June 2003)... 50 Table 3.8: Dementia Care Experience of Registered Course Attendees... 50 Fig 3.2: Profession of CEWT Respite Workers (excluding other ) by Site... 51 Fig 3.3: Profession of CEWT Respite Workers (excluding other )... 52 4

3.4 Family Carers - Demographics... 53 Table 3.9: Diagnosis of the Person with Dementia Supported by Carers... 53 Fig 3.4: Family Carers & Person with Dementia Health Status... 54 Fig 3.5: Family Carers & Person with Dementia - Mobility Status... 55 Fig 3.6: Person with Dementia Activities of Daily Living Status... 55 Fig 3.6: Person with Dementia Activities of Daily Living Status... 56 4. Process Evaluation: CEWT Program Description... 57 4.1 Background... 57 4.2 Course Structure... 57 Table 4.1 Course Modules... 58 Table 4.2 Course Outline... 58 4.3 Typology Domains & Responses... 60 Table 4.3: Response Rate... 61 4.4 Course Preparation... 61 4.5 Role of the Carers Association... 64 Table 4.4 : Role of Carers Association in the CEWT Program... 65 4.6 Qualifications of Trainers... 65 Table 4.5: Qualifications of Alzheimer s Australia Trainers... 66 Table 4.6: Qualifications of Carers Association Trainers... 67 4.7 CEWT Program Annual Outputs & Site Developments Due to CEWT Funding... 67 Figure 4.1: CEWT Course - Expected & Actual Outputs (unadjusted for rural/remote & CALD)... 68 Table 4.7: Course Outputs & Staff Resources due to CEWT Funding (2002/2003)... 69 4.8 Course Delivery Modes... 69 4.9 Course Session Locations... 70 Table 4.8: Planned Session Locations... 70 Table 4.9: Planned Session Times for Respite Worker Course... 70 Table 4.10: Planned Session Times for Family Carer Course... 70 4.10 Approach to the Target Audience... 71 Table 4.11: Provisions for Special Needs Groups... 72 Table 4.12: Course Costs... 73 4.11 Marketing Strategies... 74 Table 4.13: Marketing Strategies... 75 5. Project Outcomes: Knowledge of Challenging Behaviour... 76 5.1: Introduction... 76 5.2 Respite Workers... 77 Table 5.1: Number of Respite Workers by State... 77 Table 5.2: Respite Workers Percent Correct at Time 1 and Time 2... 77 Table 5.3: T-Test Of Respite Workers Knowledge Questions At Time 1 And Time 2... 77 5.3 Family Carers... 77 Table 5.4: Number of Family Carers by State... 78 Table 5.5: Family Carers Percent Correct at Time 1 and Time 2... 78 Table 5.6: T-Test Of Family Carers Knowledge Questions At Time 1 And Time 2... 78 5.4 Comparison of Results for Respite Workers and Family Carers... 78 Table 5.7: Knowledge Questions... 80 Fig 5.1: Respite Workers Knowledge Questions: Time 1 & Time 2... 81 Fig 5.2: Family Carers Knowledge Questions Time 1 & Time 2Fig 5.3: Respite Workers vs. Family Carers Time 2 Comparison... 82 Fig 5.3: Respite Workers vs. Family Carers Time 2 Comparison... 83 Fig 5.4: Respite Workers vs. Family Carers Improvement Index... 84 5

6. Project Outcomes: Attitudes to Dementia Care... 85 6.1: Introduction... 85 Table 6.1: Question Domains... 86 6.2: Respite Workers... 86 Table 6.2: Respite Workers Percent Correct at Time 1 and Time 2... 87 Table 6.3: T-test of Respite Workers Attitude questions at Time 1 and Time 2... 87 Fig 6.1: Attitude Question Scores at Time 1 & Time 2... 88 7. Project Outcomes: Course Satisfaction... 89 Table 7.1: Summary of Response Outcomes (most positive alternative reported)... 89 8. Project Outcomes: Impact on Caring for Family Carers... 90 8.1 Introduction... 90 8.2 Issues that Impacted on Caring... 91 Table 8.1 Scale Used To Assess How Carers Were Affected By Particular Issues... 91 Table 8.2: The Impact of Caring Commencement & Completion of Course Results... 91 8.3 Rated Success of the CEWT Course on Specific Carer Issues... 92 Table 8.3 Scale Used To Assess How Carers Were Affected By Particular Issues... 92 Table 8.4: How Successful Was The Course On Assisting With (N=136)... 92 8.3 Family Carers at 4-Months Post Course Follow-up... 93 Table 8.5: Long term summary impact of how helpful course was (n=69)... 93 8.4 Family Carers Feedback On How The CEWT Course Could Be Further Improved... 95 9. Respite Issues... 96 9.1 Use of Respite... 96 Table 9.1: Extent of Respite Used... 96 Table 9.2 Type Of Respite Used... 96 9.2 How Helpful Was The Respite?... 97 Table 9.3: How Helpful Was The Respite... 97 9.3 Effect of CEWT Course on Specific Aspects of Respite... 99 Table 9.4: CEWT Course Informed About Respite Services?... 99 Table 9.5: Comfortable Using Respite Services... 99 Table 9.6: Did Respite Lower the Stress of Caring... 100 9.4 Barriers to Respite... 100 Table 9.7: Barriers Encountered With Respite... 100 10. Project Outcomes: Service Provider Feedback... 102 10.1. Introduction Overview of Participating Respite Services... 102 10.2. CEWT Course Feedback from Respite Providers... 103 Table 10.1: Respite Services Views on CEWT Courses Content... 103 Table 10.2: How CEWT Information Is Used Transferred... 104 10.3. Future Development Suggestions by Respite Providers... 105 11. Appendices... 106 6

Executive Summary 1. CEWT Program Overview The Carer Education Workforce Training Project (CEWT) is a joint initiative of Alzheimer s Australia and the Carers Association. The four year program was funded by the Commonwealth Department of Health and Aged Care in May 2001 for $1.4 million per year for four years. Applied Aged Care Solutions (AACS) was selected to conduct the Evaluation of the CEWT programs. The general objective of the CEWT project was to improve access to and use of respite by carers of persons with dementia and challenging behaviour, by enabling the carer and service provider to better understand their own needs and those for whom they care. Alzheimer s Australia are primarily responsible for delivering the CEWT program by providing education services using an accredited dementia course competency unit (CHCAC15A), under the Vocational Education Training (VET) scheme. The use of an education program is aimed at linking workers, carers and services to achieve the stated objective. 2. CEWT Course Description The dementia competency unit CHC99ALZA (now CHCAC15A) is an accredited Vocational Education Training (VET) unit. There are six levels of VET qualifications which fit into nationally recognised qualifications from secondary school certificates, certificate 1 to IV, to Diplomas and Advanced Diplomas. The Australian Qualifications Framework body oversees all qualifications from secondary to tertiary levels. The VET scheme has multiple training packages which provide nationally endorsed standards and qualifications. The dementia competency unit comes under the umbrella of the Community Services Training Package (CHC99). The Training Packages are subjected to a quality assurance process before being endorsed by the National Training Quality Council (NTQC) and then placed on the National Training Information Service (NTIS) database. After this process, a qualified trainer can supply the unit. VET courses can be provided by secondary schools, new apprenticeships, TAFE and Registered Training Organisations (RTO). Many of the CEWT sites have become an RTO, while other sites delivered the unit under the guidance of an external RTO. The dementia competency unit is an elective in the Community Services Training Package which provides qualifications for workers in aged care and other community services. Course Structure There are eight modules in the course. The Respite Workers accredited course includes all 8 modules. The Family Carers course has a choice of two courses, a short course of 6 modules (which can be used towards completing an accredited course) or the Respite Workers accredited course of 8 modules. The Respite Workers accredited course has:- eight self-contained modules 24 hours in total for 8 modules 7

given in various time blocks e.g. 2 hour blocks or up to full days can be held over 1 day per week for 8 weeks or in the most condensed format, 3 days in one week Has two main formats - face to face and the emerging distance education The costs are subsidised by the Commonwealth Government with Respite Workers paying from $30 to $150 for the standard course Recognition of Prior Learning investigation is costed at up to $850 The 6 modules which make up the Family Carers short course are Nature of Dementia, Effective Communication, Impact of Dementia, Activities for Living & Pleasure, Understanding Challenging Behaviour and Developing Effective Responses to Challenging Behaviour. If a Family Carer wants to complete a competency certificate then the extra two modules of Person Centred Care and Worker Issues & Support Services must also be undertaken. The Family Carers short course has:- six self-contained modules successful completion can count towards an accredited course 12 hours in total for the 6 modules provided over 1 day per week for 6 weeks or in the most condensed format, 2 days in one week (e.g. in remote areas where it is difficult to return every week) Has one main format - face to face The costs are fully subsidised by the Commonwealth Government Each CEWT site developed individual presentations of the material under the guidance of the National meetings of the CEWT Managers, this covered development of education modules, assessments and marking guidelines. 3. Evaluation Methodology Applied Aged Care Solutions (AACS) evaluated the Carers Education and Workforce Training Project using quantitative and qualitative methods. The approach allowed for improvement as the CEWT program developed. The evaluation was across multi sites, with a repeated measures design, assessing a program run for family carers and respite workers. The evaluation covered areas associated with the following domains: Process Evaluation o Program Typology (What are the various intervention aspects) o Program Processes (What was implemented and how, resource allocation, products produced e.g. distance education package and CD ROM) o Program Reach (market penetration to target population, participant demographics) o Participant Satisfaction Outcome Evaluation o Participant s knowledge and attitudes to challenging behaviour o Participant s management of challenging behaviour o Understanding the needs of carers and the person with dementia o Access to and use of respite services o Barriers to the use of respite o Identification of hidden carers 8

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The evaluation was conducted in three phases: Phase One: In the first six months: Site visits were undertaken by the evaluators to introduce the evaluation approach and collect documentation about the program process Phase Two: Program outcomes were evaluated by the collection of information from CEWT course participants. Data describing base line information and immediate impacts of the course were collected (eg. participant satisfaction). Respite Workers completed a dementia knowledge questionnaire and vignette to assess what the participant s knowledge and attitudes to challenging behaviour, challenging behaviour management skills, understanding of the needs of the family carer and the person with dementia. Family Carers completed the dementia knowledge questionnaire and qualitative information was collected on their caring role, access to and use of respite services and barriers to respite use. Phase Three: This involved telephone interviews focusing on the long term impact of the course with participants and interviews with staff to review the CEWT program. This included the followup interviews with Family Carers and Respite Service Providers via the telephone and CEWT staff from Alzheimer s Australia, and Carers Association staff working on the CEWT program. 4. Course Preparation and Design Part of the preparation by the Alzheimer s Australia CEWT national manager was to (i) undertake a literature review (ii) needs analysis, (iii) reach agreement on national standards and materials, and (iv) undertake and produce national resources. Each Alzheimer s Australia auspice, apart from Tasmania, prepared site specific education modules. Literature reviews A brief review was undertaken nationally in Stage 1 of the CEWT project. New South Wales, South Australia, Victoria and Western Australia reported undertaking Literature Reviews to prepare for the course modules. Needs analysis A National needs analysis report was completed and Victoria, Western Australia and Queensland also undertook separate needs analysis for both courses. An extensive pilot of the two products was undertaken in New South Wales. Victoria also held focus group discussions on the program. National Resources NSW re-worked an existing video on Brain & Behaviour and produced a CD version. It was planned that it would be used in session one of the training course, and was made available for sale to CEWT course participants as an ongoing resource. It was available to all States/Territories Alzheimer s and Carers organisations as a resource tool for the CEWT program. A paper based distance education package was developed by Alzheimer s Australia Vic and this became available during the evaluation period. This resource included a short video (10 minutes from Speaking from experience ) and an audio tape. 10

Education Modules Most sites developed their own education modules based on the nationally agreed content. National Standards & Material National Standards were developed by Alzheimer s Australia for the Assessment Sheets and Marking Guides and all States and Territories agreed to use these standardised approaches. The assessment format included (i) journal entries (ii) in-class assessments and (iii) work based assessments. This approach reflected the assessments as prepared by the Registered Training Organisation for the ACT and included multiple forms of assessment. The national assessment guidelines comprised the following:- 1. Compulsory Written Assessments The Journal Entries are the only written CEWT assessments. There are seven journal entries covering:- The Nature of Dementia Effective Communication The Impact of Dementia Person-Centred Care Activities for Living and Pleasure Understanding Challenging Behaviours & Developing Effective Responses Worker Issues 2. In-class Assessment There are 11 tasks and guidelines that the student must complete. The format for this assessment is at the discretion of the workplace. For example, a student may have a non-written assessment for some tasks if they were having difficulty gaining competency in this task or if the trainer judged that literacy was insufficient to justify a written assessment. 3. Compulsory to undertake either a Workplace Assessment or Indirect Work Based Evidence (i) Workplace Assessment: The CEWT trainer must approve the workplace assessor s qualifications and/or experience. The two Workplace Assessments cover: Communication (to demonstrate a given set of communication skills, assessor to tick a checklist) Challenging Behaviour (workplace assessor assesses written documentation of an actual episode of Challenging Behaviour by a person that the CEWT student was supporting. It is also to include a description of the situation, behaviour and intervention). (ii) Indirect Work Based Evidence The CEWT student was to be observed demonstrating communication skills (same check list as above in the workplace assessment) at their workplace or in a volunteer situation if the student is not employed in the industry. Workplace Assessments The requirements of workplace assessments was indicated as a difficulty for some CEWT sites to resource and monitor effectively. Workplace assessments will only be available in the ACT, Western Australia, and by request in Tasmania. 11

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Assessment Formats Apart from the workplace assessment for demonstrating communication skills, the assessment sheets are primarily in written format. New South Wales, Northern Territory and Victoria are considering using audiotape materials as an option. In addition Victoria and Queensland will accept interview (i.e. verbal) based assessments instead of the assessment sheet format. Using this range of options, participants will be able to provide their assessments results in either or a combination of written, audiotape and oral formats for most CEWT sites. All sites reported that if the family carer chooses to do a full competency unit then they will be assessed with the same tools as the respite worker course assessments. New South Wales and South Australia indicated that family carers will be asked to attend the Respite Worker courses if they want to do a competency unit. Alternatively, Victoria is to use the Respite Worker assessments in the Family Carer short course for carers doing the full competency unit. Alzheimer s Australia Trainers All Alzheimer Australia trainers running Respite Worker s and Family Carers Courses had the required qualifications for Workplace Training and Assessment. Alzheimer s South Australia had separate trainers for the Family Carers course and these trainers did not have the Workplace Training and Assessment qualification. However, Alzheimer s South Australia indicated that family carers are required to attend the separate Respite Workers course (where the trainers do have the Workplace Training & Assessment qualification) if they want to do a competency unit. Carers Association Trainers Carers Associations provided the following trainer input:- Victoria and Tasmania have a Carer Association trainer for part of Module 3 in Respite Workers and the Family Carers courses, information was provided about their qualifications ACT and Queensland Carers Association trainers were considered guest speakers and were therefore not required to meet the VET requirement of Certificate 4 in Workplace Assessment and Training Carers Victoria had two trainers, and they participated in the module Impact of Dementia for both the Respite Worker and the Family Carer courses. The Carers Association of Tasmania had two trainers (one in the South and one in the North of Tasmania) who participated in the module Impact of Dementia in both the Respite Worker and the Family Carer courses. While the four trainers from Victoria and Tasmania Carers had a Certificate IV in Workplace Training and Assessment by July 2003, they did not appear to meet the minimum requirements of project educators of at least 5 years clinical experience in dementia care. However, the Carers trainers were covering more generic carer issues areas focusing on the impact of caring covering relationships, feelings, needs and practical issues of looking after the carer. The lack of specific dementia care experience is considered less relevant in this context. 13

5. CEWT Program Activity (July 2002 June 2003) In the financial year of 2002-2003 there were: 84 Respite Worker Groups conducted with 1,196 Respite Workers (average 14 per group) 50 Family Carer Groups conducted with 542 Family Carers (average of 11 people per group) There has been limited use of the distance education package: 10 individual registrations reported in South Australia between February 2003 and April 2003. Western Australia reported that two group courses used the distance education pack Victoria reported that the distance education pack has been used at least once. The funding to Alzheimer s Australia for provision of the CEWT program was provided by the Commonwealth Government over four years. This funding includes costs associated with national and state administration, Carers Association funding for their contribution (varies by state), staffing at sites, production of materials, promotion, advertising costs, travel, facility hire and other expenses covering program delivery. The number of courses and other activities to be provided by individual states was determined using a formulae based on outputs. It should be emphasised that the actual outputs detailed below are not adjusted for the rural/remote and cultural and linguistically diverse weightings, developed by the CEWT national management committee. This weighting will bring the adjusted actual in states such as New South Wales, Victoria, Queensland and Western Australia to a level more equivalent to the expected outputs. There were 134 CEWT courses run in the 2002/2003 period. As related to the funding received by each state Alzheimer s Australia auspice, the following describes the number of actual (unadjusted for rural/remoteness & cultural and linguistically diverse clients) and expected (see below exp.) courses by state for the 2002/2003 financial year: New South Wales 37 courses (27 respite worker exp. 27; 10 family carer - exp. 16) Victoria - 27 courses (15 respite worker exp. 22; 12 family carer exp. 16) Queensland - 17 courses (7 respite worker exp. 14; 10 family carer exp. 12) South Australia - 16 courses (10 respite worker exp. 10; 6 family carer exp 6) Western Australia - 10 courses (4 respite worker exp. 11; 6 family carer exp 6) Tasmania - 9 courses (8 respite worker exp. 6; 1 family carer exp. 2) Northern Territory - 6 courses (5 respite worker exp. 2; 1 family carer exp. 1) Australian Capital Territory - 12 courses (8 respite worker exp. 7; 4 family carer exp. 5) Course Development & Content Generally Alzheimer s Australia sites developed new courses (not a modification of an existing Alzheimer s Education product) for the Respite Worker program. For the Family Carers program, New South Wales and South Australia added additional content to their existing educational programs. The video Brain and Behaviour was used as a resource to support the training program. Additional Staff Resources 14

The ACT was the only site to employ a new person in a program manager role as a result of the CEWT funding. New South Wales used additional hours for existing management staff. The remaining sites used the program manager resources within the existing hours of employment. For staff directly involved with the training, all sites added additional training time for existing staff trainers or employed new or sessional trainers. Additionally, NSW, Victoria and the ACT added junior administrative staff hours to assist with the program. CEWT Course Costs Course costs per person varied across the States/ territories from $30 (Victoria) to $150 (South Australia). All sites did not charge Family Carers if they were participating in the 6 module course. Marketing Strategies All states used the general information sessions for marketing the CEWT program, and part of the role of State Carers Associations in every state was to actively promote the courses to family carers and service providers. Marketing approaches to lift consumer awareness used mostly traditional aged care networks such as promotions to staff from relevant agencies, distribution of course availability via newsletters, websites, promotional flyers and targeted mail-out programs to services. In terms of a strategic approach, the two largest states segmented the market to allow a more focused approach. For example, NSW targeted community-based service providers and individual workers, Victoria used a rolling regional targeting approach to focus resources in defined geographical areas. As courses were generally over-subscribed, marketing approaches were conservative. 6. CEWT Course Participant Profile a. Respite Workers The most common type of profession reported in evaluation forms was Personal Care Assistant. Approximately 67% of participants were hands-on direct dementia care workers. Around 4 in 10 respite workers (39%) attending CEWT courses worked in residential aged care facilities. All sites except for NSW targeted both residential facilities and community services. The NSW CEWT program targeted facilities if they were the main respite provider in the region. The CEWT course represented the first contact with Alzheimer s Australia for 88% of Respite Workers. Special Assistance According to the national database records, thirteen people requested special assistance due to ethnicity and there were no recorded requests for special assistance for disability or learning supports. However, marketing and promotional information indicates that some sites made special efforts to link with culturally and linguistically diverse communities. For example, NSW formed a reference group of special needs groups to assist with course development and targeting, Queensland collaborated with ethnic community groups and provide at least one course per year in a language other than English and Western Australia had involvement in information meetings held with the Chinese, Italian and multicultural communities. Recognition of Prior Learning One person was registered on the national database for recognition of prior learning. 15

Dementia Care Experience of CEWT Attendees Around 25% of Respite Workers had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience. b. Family Carers A large majority of the family carers attending CEWT courses were caring for a person with dementia who had unstable health (78%), with nearly one third having had a recent hospital stay. Thirty-three percent of people with dementia related to carers attending CEWT courses were dependent on their carers for assistance with mobility. As would be anticipated with a person with dementia living in the community, they were more dependent in instrumental activities of daily living (i.e. using transport and shopping) compared to basic care requirements where they were mostly independent (bathing, dressing). In terms of behaviours of concern, around 40% of carers reported that the person with dementia had major behaviour problems. While the family carers were not as frail in health as the person with dementia, nearly one third had unstable health and one in ten had a recent hospital stay. Nearly all family carers were supporting a person with a diagnosis of dementia (90%). Alzheimer s disease accounted for around 50% of dementia diagnoses. First Contact with Alzheimer s Australia Services The CEWT course was the first contact with Alzheimer s Australia for nearly 7 in 10 (67%) of Family Carers which is slightly less than for Respite Workers where 88% had their first contact with Alzheimer s Australia via the CEWT course. These are important results as it shows that the CEWT course was attracting people (Respite Workers & Carers) that had not been in contact with Alzheimer s Australia previously. If lack of contact with Alzheimer s Australia indicates that the carer may have been hidden, it could be suggested that nearly 7 in 10 carers doing the CEWT course had been hidden from formal services focusing on dementia information and support. To broaden the net on hidden carers further a targeted mass media campaign using television and radio will be required. This may be the only way to reach carers who do not have any connection with existing community or local government services, nursing supports or hospital programs. Living Arrangements The large majority (87%) of the people with dementia associated with carers attending the CEWT courses were living in a domestic setting, with their wife (44%), husband (19%), daughter (12%) or alone (12%). Culturally and Linguistically Diverse Background Over 1 in 10 carers attending the courses were from a non English speaking background (14%). 7. Course Delivery Modes The main format for CEWT courses is traditional face to face delivery, with distance education and video conferencing as planned supporting formats. The distance education package was perceived as requiring more promotion and additional resources to adequately market the product to the sector. There were also concerns that access to computers for workers and carers may limit the use of this resource, at least initially. 16

Victoria, Western Australia and Queensland reported that they were planning in the near future to use delivery formats other than direct face-to-face training sessions. For example, audio and video conferencing were to be investigated and an on-line internet course delivery is to be assessed. Paper-based distance education was reported as a possible format for all other Alzheimer s sites. Three sites Western Australia, South Australia and Victoria have used the distance package to train Respite Workers however the numbers are very small to date. 8. Course Details & Participants Locations CEWT courses (Respite Worker and Family Carer) were provided in locations from capital cities through to rural cities and remote locations in most states in the 2002/3 period. Session times were flexible and courses were held in morning, afternoon and evening timeslots. The preference was to hold the sessions (course modules) over a number of weeks to improve the assimilation over time of the knowledge gained in each session with on-the-job experiences. This proved impractical for Respite Worker courses in the more remote areas, and courses were often provided in full over a one or two week period. Family Carer courses were generally more spread-out over a period of at least 4-weeks. Course Participant Criteria Overview All sites except New South Wales, targeted workers from residential and community respite facilities. Residential facilities were only targeted in NSW if they were the main respite provider in a region. The Northern Territory was also targeting other non-residential-based health professionals, Victoria included HACC workers, Queensland planned to include students wanting to work in the aged care industry and Western Australia were including family and friends as required. Victoria, South Australia and NSW had specific plans to target entire services (all relevant staff) and not individual respite workers in a location. In the ACT the Family Carer course participant must be caring for a person with dementia and challenging behaviour. In New South Wales the Family Carer course participant must be the primary carer; Northern Territory will include volunteers working with people with dementia; Tasmania, Queensland and Western Australia will extend participation to family friends who are actively involved. NSW reported a large demand for their courses and therefore the need to limit entry criteria to strictly cover only carers of people with dementia. Some other states such as Tasmania reported they needed to expand their target audience to maintain group numbers. Provision for Participants with Literacy Challenges & Special Needs The majority of the states (excluding the ACT and Tasmania) are offering some level of internal developed support for those with literacy issues. Queensland planned to offer verbal and pictorial assessments for those participants identified during the course as having literacy problems. Other literacy/language support systems include; a buddy system in Victoria, different assessment formats (oral, tape and interview in NSW) and unspecified different materials (NT and WA). In the ACT responsibility for literacy support is completed by their external Registered Training Organisation (RTO), ensuring participants will be assisted. In Tasmania people with severe literacy problems are directed to support services (eg. TAFE) and asked to reapply when their literacy skills have improved to a level adequate for course completion. No sites had a formal process for determining whether students had sufficient literacy skills to enable them to adequately understand the course materials and complete the assessments. This approach was believed too intrusive and 17

sites preferred to assess the level of literacy at the first session and deal subsequently with any problems via special support approaches. Most sites, except South Australia, ACT and Tasmania, actively targeted people from culturally and linguistically diverse (CALD) backgrounds. Some sites made special efforts to link with CALD communities. For example, NSW formed a reference group of special needs groups to assist with course development and targeting, Queensland collaborated with ethnic community groups and provide at least one course per year in a language other than English, and Western Australia had involvement in information meetings held with the Chinese, Italian and multicultural communities. Sites targeting people from aboriginal backgrounds included NSW, Western Australia (consulted with an aboriginal liaison officer), the Northern Territory and Queensland (participating in a research program with Queensland health to design and deliver a program to ATSI, South Sea Islander communities and isolated/outback communities). Recognition of Prior Learning Assessments Recognition of Prior Learning (RPL) is where a participant asks to be assessed for recognition of their previous formal and informal experience. There are various modes of assessment available for RPL; by portfolio, challenge test or workplace assessment. The State project managers did not expect that many people would request RPL. The results from the data analysis indicated that only one person in the 12-month period to 2003 asked for RPL consideration. 9. Role of the Carers Association Alzheimer s Australia received funding from the Commonwealth Department of Health and Aged Care in May 2001 to provide the CEWT training program and partner with the Carers Association and local Carers state organisations to improve the uptake and use of respite services. Through interviews and the typology pro-forma, the roles of the Carers organisations in the CEWT project were identified. The role and degree of involvement varied significantly from state to state. These variations were due to the degree of involvement desired by the different state Carers organisation, the resources available to the Carers organisation in terms of trainers and the co-operative relationships between the local state organisations. Almost all Carers Association sites had at least a promotional role with both the Respite Worker and Family Carer courses (except Carers South Australia which had no involvement in CEWT sessions, publicity or information sessions). Specifically the Carers Associations had the following involvement in the CEWT program: General involvement (i) In New South Wales, Victoria and Western Australia, the Carers Association is part of the local CEWT management committee. (ii) In Victoria, the Carers Association assisted in the CEWT course content development (eg. Carers Victoria assisted incorporate the emotional impact of caring for carers) and was involved in planning for the targeting of geographical areas most in need. (iii) In New South Wales and Western Australia the Carers Association are involved in course developmental aspects and participate in promotional marketing. (iv) In the Northern Territory the Carers Association assisted with course development aspects. Involvement in Course Delivery The Carers Association s in Victoria, Tasmania, ACT and the NT also have a more direct role in the service delivery aspects of the program. This involved: (i) Carers Tasmania and Victoria provide course trainers for a section of Module 3 covering the impact of caring and carer respite. (ii) The ACT Carers and Queensland Carers are guest speakers (not trainers) in the CEWT course (regional areas only). 18

(iii) Carers Northern Territory deliver a 2-hour training session in the Respite Workers and Family Carer CEWT Courses. 19

10. Project Outcomes Did the CEWT Course Work? (i) Dementia Knowledge Questionnaire The CEWT course targets many aspects of dementia care related to knowledge and understanding of behaviour. Some of the topics in the CEWT program relevant to this section include: effective communication understanding challenging behaviour developing effective responses to challenging behaviour To assess the impact of the CEWT program on these knowledge areas, Respite Worker and Family Carer participants were asked to complete a series of nine knowledge questions that were targeted to areas that are considered fundamental to an understanding of behaviour and dementia. The set of questions were asked at the beginning of the first session (Time 1) and at the end of the last session (Time 2). The questions deal with areas associated with the carers (family and paid carers) understanding of the problem and whether they should (i) re-frame the problem so as to minimise the issue (ii) understand the underlying issue and develop an intervention that is applied to the person with dementia (iii) change the behaviour of the carer so as to impact on the expression of the behaviour. Respite Workers The great majority of course participants (64% excluding the non-specified category) were personal care or respite workers (i.e. not trained nurses). Around 25% had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience. Respite Workers improved on all questions at by the end of the course (Time 2). The improvement was statistically significant on all questions except questions 4 and 5. Further analysis was undertaken to examine the overall outcomes across all questions. The mean for all questions correct at Time 2 was significantly higher compared with Time 1. The significant improvement on seven of the nine questions and improvement overall on the number of correct answers at course completion (Time 2) indicates that the CEWT training course was associated with an improvement in the knowledge based of Respite Workers participants. Family Carers Carers attending the CEWT courses were supporting people with dementia mainly living in domestic settings. Attendees were wives (44%), husbands (19%), or daughters (12%). A minority of carers attending the courses were from a non English speaking background (14%). Family Carers improved on all questions at course completion (Time 2). The improvement was statistically significant on seven of the nine questions (not significant on questions 5 and 6). The overall mean correct at Time 1 versus Time 2 for all questions also showed a statistically significant improvement for Family Carers at Time 2. The significant improvement on seven of the nine questions and improvement overall on the number of correct answers at course completion (Time 2) indicates that the CEWT training course was associated with an improvement in the knowledge base of carers undertaking the course. 20

Comparison Respite Workers and Family Carers on Knowledge Test Considering the overall percent correct on the knowledge questions, Respite Workers achieved slightly higher outcomes compared with Family Carers although the differences were small. It is interesting to note however that Family Carers improvement by Time 2 was much more significant than the Respite Workers. Family Carers improved more than Respite Workers on seven of the nine questions. Respite Workers improved more than carers on only two questions. Both Respite Workers and Family Carers significantly improved their level of knowledge of challenging behaviour as assessed by the Knowledge Questionnaire. While Respite Workers scored more percent correct answers overall at Time 2, in general Family Carers improved more from their exposure to the CEWT training. The CEWT course has been successful in improving the knowledge base of both Respite Workers and Family Carer participants. (ii) Attitudes to Dementia Care Respite Workers The CEWT course targets many aspects of dementia care related to the development of responses to challenging behaviour and most importantly, the attitudes that underpin many of the responses of professional carers to dementia care issues. In this regard some of the topics in the CEWT program include: impact on the person with dementia impact on the family carer person centred care effective communication understanding challenging behaviour developing effective responses to challenging behaviour As it was not possible to observe CEWT course participants in the work place before and after the course to determine how they implemented their learning, a method had to be developed to provide some indication of the effectiveness of the course in addressing these complex areas. A short story (vignette) and series of questions was therefore developed. The vignette contained information directly relevant to the course content and the series of questions were designed to measure the effectiveness of the participants learning in these areas. The short story (vignette) is about an elderly couple and some of the issues encountered when a partner has dementia. The questions were designed to assess and measure the attitudes and knowledge base of participants about dementia, challenging behaviour and dementia care management. The questions covered the following domains; Person-centred care (history, preferences, behaviour) Profiles/background information (history, preferences) Effective communication strategies (speech, communication, intimacy) Interventions for behaviours of concern (appropriateness, night disturbance, agitation) Activities of living and pleasure (activity) Role of family carers (preferences, appropriateness, intimacy) As for the previous Dementia Knowledge Questionnaire, the vignette and questionnaire was reviewed by an expert panel of academics and educators (both Australian and overseas experts) and piloted in a low care residential care facility with direct care workers. Changes were made to the wording of some of the questions to reflect the feedback from the expert panel and pilot investigations. The final version of the questionnaire appears in the Appendix. 21

There were eleven domains with around five questions within each domain. In total fifty-three questions were rated across the domains. For example, in the domain on challenging behaviour participants were asked to indicate on a scale from strongly agree to strongly disagree, How much do you agree with the following statements :- People with dementia would be easier to look after if they didn't try to deliberately make life difficult People with dementia have the ability to behave differently if they really want to The behaviour of people with dementia can't be changed because it's due to brain damage Dementia causes people to behave in certain ways but we have the ability to reduce the problems It is not that helpful to try and understand why a person with dementia behaves in a problematic way - this doesn t really help us fix the problems The questions have been designed to promote further thought from the participants to discover the underlying principles of best dementia care practice. It should be emphasised that this exercise is a very difficult one for professional carers of any background. It requires a sophisticated understanding of the underlying concepts to achieve a high score. This questionnaire and vignette has been used in other contexts by AACS. Improvement in the percent correct index is not always achieved between the Time 1 and Time 2 assessments. Respite Workers All Respite Worker participants in CEWT courses were requested to complete this assessment at the beginning of the first session (Time 1) and the end of the last session (Time 2). The results show that the percent correct responses improved in ten of the eleven domains. The improvements ranged from non-significant minor changes in the domains agitation (1%), preferences (1.4%) and behaviour (2.2%) to larger statistically significant improvements in speech difficulties (5.1%), communication (4.9%), history (8.6%) and activities (9.7%). A further analysis combining all questions was undertaken to compare the mean total correct scores of participants at Time 1 and Time 2. The results supported the overall trend of improvement as there was a statistically significant increase in the percentage of correct responses at the end of the course (Time Two). The Respite Workers undertaking the CEWT course registered a significant improvement in the number of correct responses across the questions covered in the assessment focusing on attitudes and better care practices for people with dementia. In particular there were improvements in the areas covering: Social Profiles and background information (history, preferences) Effective communication strategies (speech, communication) Interventions for behaviours of concern (appropriateness reframing problems) Activities of living and pleasure (activity) (iii) Course Satisfaction Respite Workers and Family Carers Respite workers and family carers completed a satisfaction questionnaire ( happy sheet ) at the end of the 6 or 8 week course to assess their general views on the general presentation of the CEWT course. These areas covered course services, course content, the course educators style and the 22

impact on what they did back at the workplace or at home. While all areas were very highly positively rated the most highly ranked areas were: Course understandable (75% rated overall as very understandable ) Educators style (78% rated overall as very satisfied ) Opportunity to ask questions (77% rated overall as very satisfied ) Encouragement of discussion (79% rated overall as very satisfied ) The interactions with educators (81% rated overall as very satisfied ) Gained new skills (75% rated overall as definitely yes ) Understanding of behaviours (76% rated overall as very much better ) Recommended to others (88% rated overall as definitely yes ) The satisfaction ratings provide further confirmation that the CEWT course was highly regarded by all participants. Did the CEWT course help Carers with their Specific Problems? In addition to the evaluation of the knowledge gained by attending the CEWT course, Family Carers were also asked to rate the impact of the course on their specific caring situation. In terms of changes between the commencement and end of the course there were no consistent statistical trends with a reduction of how badly carers felt they were affected by their specific problems. The issues that were most of concern were rated similarly at Time 1 and 2. These issues were: Observing the ongoing loss of independence & skills (av.47% of responses for time 1 & 2) Memory problems that caused distress for day-to-day care and support (av.45% ) Burden of caring (e.g. stressed, constant reliance, no escape) (av.31% ) Grief and loss issues (av. 29%) Restlessness, anxiety or agitated behaviour with the person with dementia (av. 28%) Disruption with personal or family relationships (av. 26%) Irritability and argumentative behaviour (av. 25%) However, when asked if they felt that the course assisted them generally with the management of behaviour, the majority of respondents (more than 50%) rated the course as having at least some degree of favourable outcomes with their specific problem areas. The successful areas were those associated with knowledge gained from the course that assisted carers deal with the ongoing deterioration and loss of skills. Sixty-nine Family Carers were additionally followed-up at approximately 4-months after completion of the CEWT course to determine if they felt the course helped them manage with caring issues in the longer term. Overwhelmingly, carers believed the course had been very helpful in the longer-term. Nearly 8 in 10 of the carers interviewed found the course very helpful and nearly a further 2 in 10 found it quite a bit helpful. The specific areas that carers indicated as most helpful in the longer term included:- Knowledge or information about dementia & behaviour management suggestions (38% of responses) Coping, coming to terms with the inevitability of loss, changing your attitude to dealing with the future (20% of responses) 23