Restorative care in action

Australian researchers are working with health and aged care providers to trial a program to support and empower people with dementia and their carers, write Dr Kate Laver and Professor Lindy Clemson.

There are more than 400,000 people with dementia in Australia, 75 per cent of whom have mild to moderate symptoms and live in the community.

About 45 per cent of those in the community receive formal care services, in most cases supplemented with support from family and friends. While a general misconception remains that nothing can be done about the symptoms of dementia, there is building evidence for the value of non-pharmacological interventions to delay functional decline and prolong independence.

This latest evidence is detailed in the Clinical Practice Guidelines and Principles of Care for People with Dementia, an Australian-first resource for health and aged care professionals.

Delaying functional decline

Our recent review found that, aside from exercise, intervention programs that work together with the person with dementia and their carer to manage issues and promote independence are most effective in delaying functional decline in people with dementia. These interventions involve providing strategies and structured activities for the person with dementia and their carer and collaborating with both to help manage symptoms.

Interventions shown to be effective have some common characteristics. They tend to be provided in the home environment and involve education, caregiver support, environmental assessment, individualised problem-solving and the use of active learning strategies for the carer, such as modelling, role play and brainstorming.

Some interventions also incorporate engagement of the person with dementia in activities of interest, such as gardening, puzzles or outings, based on past and current interests. For people with severe symptoms activities may be simpler and include sorting objects or looking through photo albums. Interventions which have been shown to be effective in research studies tend to involve five to 10 consultations. On top of their demonstrated effects, these interventions can be delivered without the side effects associated with drug treatments such as donepezil, rivastigmine, galantamine, or memantine.

New policy focus on restorative care

The goals of promoting independence, living well and delaying functional decline in people with dementia are now embedded in government policy.

For example, the Good Practice Guide for the Commonwealth Home Support Program provides guidance on moving towards a wellness approach, which includes:

• identifying what a client can and wants to do
• focusing on maintaining function and minimising the impact of functional loss, and
• supporting an individual’s roles.

In February the Minister for Aged Care, Ken Wyatt, also announced the allocation of 475 new Short-Term Restorative Care Program packages, which aim to reverse or slow functional decline in older people and improve their wellbeing.

Overcoming barriers

Interventions shown to be effective in delaying functional decline in people with dementia have not been widely implemented within Australia. This is thought to be partially due to lack of training as many of the evidence-based interventions were developed and tested in the United States.

In addition, while five to 10 consultations does not sound considerable, organisations may have limited capacity to fund skilled professionals to provide this many consultations in the person’s home.

We are currently undertaking a project funded by the National Health and Medical Research Council (NHMRC) Cognitive Decline Partnership Centre, which is a partnership between the NHMRC, Alzheimer’s Australia, HammondCare, Brightwater Care Group, and Helping Hand. The project is being led by researchers from the University of Sydney and Flinders University.

Our goal is to examine how an evidence-based intervention delivered by occupational therapists and nurses can be translated into existing services for people with dementia and their carers.

We will examine the costs associated with delivery and what adaptations may be necessary for Australian health and aged care settings. We will also measure outcomes (perceived change from the perspective of the carer; level of engagement in leisure activities) in people with dementia and their carers before and after receiving the intervention.

We are trialling the Care of People with Dementia in their Environments (COPE) program. Originally developed by Professor Laura Gitlin and colleagues in the United States, the COPE program involves up to 10 consultations with an occupational therapist and up to two consultations with a nurse.

‘Prescriptions’ are developed by the therapist and carer to address key concerns. For example, a prescription for symptoms of agitation may include avoiding overstimulation by modifying the home environment to reduce clutter and noise, training the carer to use a simpler communication style and avoid complex questions, and noticing warning signs of agitation and engaging the person in an activity that is of interest and promotes relaxation. The nurse may reinforce the need for the carer to take care of themselves and address the possibility of undetected pain or poor hydration or nutrition that may exacerbate the agitation.

When tested in a large randomised trial in the US it was found that those who received COPE were less dependent in activities of daily living and more engaged in leisure or recreational activities. Their carers also reported higher levels of wellbeing and were more confident in being able to support the person with dementia to remain in their own home.

Not all carer programs to manage the symptoms of dementia have been found to be effective. The COPE program is thought to be effective due to its multicomponent approach, which combines education with activity engagement plus problem-solving, and the use of active learning. For example, the carer is involved in brainstorming and rehearsing skills rather than being a passive recipient of information.

As part of this project we have formed partnerships with nine health and aged care services or providers across New South Wales and South Australia. Partners are diverse, representing both public and private sectors and both acute and community settings. As part of the research project, 33 occupational therapists and 11 nurses have been trained in how to deliver COPE for consumers of their organisations.

We will work closely with the partner organisations and participating clinicians to determine how COPE fits into their practice and how it does not. A key outcome is to determine how the program can be adapted to suit a variety of settings, maximising the potential benefits for people with dementia and their carers.

Demonstrating the value of COPE in the Australian healthcare context will support the wider implementation of this intervention for people with dementia.

Dr Kate Laver is a postdoctoral research fellow at Flinders University. Dr Lindy Clemson is a professor in ageing and occupational therapy at the University of Sydney. They are the lead investigators on the COPE project.

For more information on the research project visit the Cognitive Decline Partnership Centre at the University of Sydney.

This article appears in the current Spring edition of Community Care Review magazine.

Subscribe to Community Care Review