Introduction
Alzheimer's Australia is the national peak body for people with dementia, their families and carers and provides leadership in policy, advocacy, education and training and support services. The Dementia Caring Pilot Project (the Project), funded by the Australian Government under the 2005 Budget initiative “Helping Australians with Dementia and their Carers: Making Dementia a National Health Priority” (the Dementia Initiative), is an example of Alzheimer's Australia's commitment to supporting and enhancing the quality of life of the families and carers of people with dementia. The specific aims of the Project were to pilot skills enhancement activities that met the needs of families and carers of people with dementia, to strengthen the capacity of the Commonwealth Carer Respite Centre (CCRC) network and also to test the possibility of expanding the CCRC role to provide a broader range of carer support services. In achieving these aims, the underpinning principles of the project were that it should be carer driven, carer focused, aimed at skills development, use existing resources and avoid duplication, and address particular needs such as those of rural and remote and culturally and linguistically diverse (CALD) communities.
Methods
To develop a menu of skills enhancement activities, CCRCs contacted families and carers of persons with dementia during the pilot phase to ascertain whether they were willing to participate in the project and to identify the nature of skills enhancement activities required through a needs assessment process. Once a carer's education, training or skills enhancement needs were identified, the CCRCs contacted the Alzheimer's Australia organization within their respective State/Territory to organize the skills enhancement sessions. Delivery of an activity was organized by the Alzheimer's Australia organization in the majority of cases, either through direct delivery or by brokering a service from another provider.
Training in the identified skills was provided to carers at times and in ways that suited them. Skills enhancement sessions were delivered to individuals and groups through a range of models including face to face, train-the-trainer, telephone and internet. Alzheimer's Australia State and Territory organizations delivered all dementia-specific activities; the life-skill oriented activities were either provided by Alzheimer's Australia or brokered out to other providers. Over the pilot period there were a large number of carers who were interested in the concept but not available during the pilot period or unable to attend due to particular circumstances. This extensive expression of interest from carers was incorporated into the Project conclusions and recommendations.
Results
The Project commenced in July 2006 and was completed in August 2007. Nationally, 47 CCRCs participated in the Project and 324 skills enhancement activities were provided to over 1000 participants.
The outcomes of the Project were overwhelmingly positive for carers and families of people with dementia. The participants engaged in activities aimed at enhancing a range of skills that they identified would assist them in their caring role. These activities included:
• information about legal issues
• understanding dementia
• stress management
• advocacy
• self care strategies
• managing behaviors of concern
• continence management
• health and well-being
• stimulating activities
• communication
• knowing how to access information to support decision-making, e.g. in choosing residential care, dealing with Centrelink, accessing support services
• home maintenance
• personal care
• home-making skills and other role-reversal related practical tasks such as car maintenance and cooking
• use of computers and the internet for practical tasks such as internet banking, online shopping, sending emails.
A particularly innovative approach was the Skills Expo, a partnership between two CCRCs in Adelaide. This expo gave 31 carers the opportunity to access 12 different activities in the one location.
All participating organizations identified a significant number of positive outcomes from the Project, both from an individual carer and organizational perspective.
The carers felt strongly that the Project was a “first' in focusing on their needs; this view was summed up well in feedback such as:
“Many carers indicated that it was a first for them to be asked what they would like for themselves.” (Victoria)
“Carers needed to talk and be listened to.” (Queensland)
“The carers benefited! They felt that they were being listened to and taken care of.” (Northern Territory)
“It was found that the session content had a direct and immediate effect on carers. The sessions made carers feel more prepared to handle changes with their loved ones in the future.” (Tasmania)
Many other positive outcomes were identified by the participating organizations, including:
• a practical demonstration of the underpinning philosophy of person-centered care, as applied to the needs of carers and families of people with dementia;
• a range of skills enhancement activities offered and modes of delivery that clearly met the identified needs of carers and families of people with dementia;
• an identified need for non-disease related skills education and training, in addition to dementia-related knowledge and care skills for carers;
• creation or strengthening of networks and collaborative arrangements between CCRCs, Alzheimer's Australia organizations and other service providers;
• demonstration of the capability of both CCRCs and Alzheimer's Australia organizations to be flexible and innovative in service delivery; and
• testing of the CCRCs' potential for expanding their role in carer support services.
Whilst the Project outcomes were overwhelmingly positive, both CCRCs and Alzheimer's Australia organizations identified several operational factors that impacted adversely on the pilot phase of the Project. These were the cumbersome and time-consuming documentation and processes and the lack of dedicated staff in CCRCs, coupled with significant staff turnover.
Discussion
The findings from the Project demonstrated an ongoing need for provision of skills enhancement education and training activities for carers and families of persons with dementia. It also identified a strong need for both disease specific knowledge and care skills, as well as life-oriented skills education and training to improve the quality of life of carers. The Project has created excellent partnerships and understandings of roles and services between CCRCs and Alzheimer's Australia organizations.
Conflict of interest
None.
