Research Article: Rehabilitation for people living with dementia: A practical framework of positive support

Date Published: March 7, 2017

Publisher: Public Library of Science

Author(s): Linda Clare

Abstract: In a Perspective, Linda Clare proposes using a cognitive rehabilitation approach for people living with dementia.

Partial Text: The experience of disability confers a right to rehabilitation for people living with dementia. The United Nations Convention on the Rights of Persons with Disabilities outlines the right of people with disability to be able to attain and maintain maximum independence, with the assistance of comprehensive rehabilitation services (Article 26(1)) [5]. We are used to thinking of rehabilitation in terms of physical rehabilitation following injury, but it is equally relevant for people with cognitive, rather than physical, impairments. This includes people whose impairments result from long-term, progressive neurodegenerative conditions. The rehabilitation of people with cognitive impairments is called cognitive rehabilitation [6]. In community settings, this approach may be called reablement or restorative care, and from a public health perspective, it can be considered synonymous with tertiary prevention. These concepts share similar aims [7], and for convenience, I will use the term “rehabilitation” here. Rehabilitation provides both a set of guiding principles to shape a model of service provision and a coherent practical framework for supporting people with dementia and their families [8].

A rehabilitation-focused service would be organized around key principles of enabling people to function optimally in the context of their intrinsic capacity and current health state. This means ensuring that people are as independent as they wish to be, have as much control as possible over daily life, have opportunities to engage in meaningful roles and activities, and are able to integrate the changes they experience into a coherent and enduring sense of identity. The rehabilitation philosophy is genuinely person centred [9] and reflects important values underpinning good dementia care. Rehabilitation involves working with people to achieve the goals that are important to them. It is based on individual formulations and not a one-size-fits-all approach [10], acknowledging that each individual has a unique set of experiences, values, motivations, strengths, and needs.

Many different types of nonpharmacological intervention for people with dementia have been described. Most of these are not cognitive rehabilitation; it is important that this term is understood correctly and is not applied to interventions that do not warrant it. Some approaches, however, are directly complementary to cognitive rehabilitation. These either address related aims (for example, self-management groups to enhance self-efficacy or therapeutic groups to promote adjustment to living with dementia) or address problems that negatively affect functioning and participation (for example, psychotherapy for depression or individualized interventions for agitation). Also directly relevant is support for family carers. Other intervention approaches focusing on providing pleasurable and meaningful activity or encouraging social contact can complement rehabilitation by creating opportunities to enjoy positive experiences and relationships. Within a rehabilitation-focused service, an intervention pathway would include these approaches where there is evidence that they offer benefits. Less likely to be recommended in the context of a rehabilitation model are nonpharmacological interventions that address symptoms in isolation or out of context so that gains, if any, are unlikely to transfer to daily life. People with dementia should also have full access to specialist physical rehabilitation where needed following injury or illness, as well as any other appropriate medical treatment [16].

A rehabilitation-based model of positive support could potentially be introduced in part through a redeployment of available resources. The costs of this positive approach might be offset to some extent by preventing difficulties, limiting the costs of managing distressing symptoms, and delaying institutionalisation. There is a need to develop service systems with a clear focus on optimizing functioning and supporting relationships, identity, and engagement and a need to train staff to implement rehabilitative interventions. It is essential to fully involve people with dementia and carers to ensure a thorough understanding of their perspectives.

Acknowledging the right to rehabilitation offers a tremendous opportunity to create a focused and coherent approach to positive support for people with dementia, of any age, subtype, or severity, and their families. A rehabilitation model offers a guiding framework for services and for health and social care practitioners and a practical means of providing person-centred, evidence-based interventions to maintain or enhance functioning, engagement, and participation.



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