Bridging the gap: From reablement policy to practice for people with dementia.

In an earlier edition of Alzheimer's & Dementia: Translational Research & Clinical Interventions, Poulos et al. [1] presented a comprehensive approach to reablement in dementia. Given there is limited ability to modify the course of the disease, they called for policymakers, clinicians, families, and people living with dementia to “focus on maintaining function for as long as possible, regaining lost function when there is the potential to do so, and adapting to lost function that cannot be regained.” This approach of “reablement” reflects a new international policy narrative, which promotes intrinsic capacity and functional ability, as opposed to the negative discourse around aging and dependency [2], [3], [4].

In practice, however, there is often a gap between the aspirations of policy and what occurs on the ground. In the translation process it is necessary to consider the scientific evidence, the context into which the evidence must be translated, and ways in which the adoption can be facilitated [5]. To better inform practice we undertook a project to translate the evidence for reablement interventions for people living with dementia.

We used recently developed national clinical practice guidelines and principles of care for people with dementia prepared for health professionals and carers in primary care, aged care, and hospital settings [6] as our starting point. We focused specifically on the recommendations that related to delaying the onset of functional decline or improving functioning, with the aim of “operationalizing” the evidence applicable to the community and residential aged care sector. We also undertook a survey of the sector to determine its understanding of reablement, and the barriers and facilitators to adopting reablement. In addition, a workshop of providers, consumers, policymakers, and academics informed the process. We updated and synthesized the relevant evidence to create a technical guide for the clinician who wants to understand the evidence; a sector handbook directed toward policymakers, service providers, and clinicians who want to gain a broad understanding of the types of reablement programs that could be offered to people living with dementia, and a consumer information booklet to assist people living with dementia, their caregivers, and support persons to make better informed decisions around their reablement programs [7].

The project brought into sharp focus the difficulties of research translation. In designing practical and sustainable reablement programs, multiple research studies needed to be synthesized. Yet, for any given intervention type, the study population, setting, intervention “dose” (session length, number, and duration), study quality, and the number and qualifications of the interventionists varied widely. Furthermore, some interventions were poorly described, showed conflicting findings, or required personnel levels, which would be unsustainable in practice.

The real world is much more complex than the controlled environments of many research settings, and real world programs need to balance affordability against the need for interventions to be of sufficient duration and intensity to achieve an outcome. Can treatment fidelity be maintained if programs do not exactly mirror research protocols? For example, could specialist clinical staff train care workers or family members to assist in certain aspects of the program delivery so as to improve sustainability? Or, if a research protocol used only physiotherapists, could a service provider use exercise physiologists if they were the only appropriately trained staff available?

At best this type of research translation is “evidence-informed,” because a number of judgment calls are required in the translation process. In reality, the effectiveness of the “translated” research is unknown without additional program evaluation. However, there is a sense of urgency here. Governments around the globe are advocating for and funding reablement in response to their own policy challenges associated with population aging [8], [9], [10]. Service providers and people living with dementia are seeking guidance on what might be beneficial now. In this imperfect world, we must actively attempt to bridge the gap from research to practice. If, as researchers, we struggle with the messy task of translation, how can we ever expect those at the “coal face” to distil the evidence for themselves, such that they focus on funding, offering, delivering, or participating in programs with some likelihood of benefit.