Dementia Beyond Drugs

Changing the Culture of Care

T

he care of people who live with dementia is impeded by the high use of psychiatric medications in response to the behavioral distress commonly seen in such people. Recent evidence shows these medications to be responsible for a number of serious side effects—even increased mortality—yet their use continues to rise.

Studies have shown that, among people in nursing homes with and without dementia, about 28% are given antipsychotic medications at any given time, often without appropriate indications. Among people with dementia living in nursing homes in most industrialized countries, about 40% are given antipsychotic medications.

This problem is not confined to residential care settings. A review of people admitted to St. John’s Home in Rochester, New York in 2007 showed that, among those with a cognitive score indicating advanced dementia, 50% had been taking antipsychotic medications in their own homes as well.

Non-pharmacological approaches to care are widely touted, but often fall short in practice. This is because we are still working within a badly flawed model of care that has dominated our approach to dementia over the past half-century. This biomedical approach sees dementia purely as disease and decline, and therefore attributes people’s distress to neuropathology and responds in kind with a medication approach.

The problem with this approach is that most behavioral distress can be tied to environmental triggers and unmet needs in the care environment. Instead of understanding those needs, we simply medicate the symptoms, often with disastrous results.

What is needed is a radical shift in the way in which we view dementia. A framework for this shift can be found in the “culture change” movement that has been transforming nursing homes around the world. (It is not coincidental that the late Tom Kitwood, who espoused a shift in the way we view dementia, coined the term “person-centred care”, which is used by many culture change advocates.)

I have taken the culture change philosophy (and the work of dementia pioneers like Kitwood) to construct a new “experiential” view of dementia. This model reaches beyond the narrow biomedical view and sees people as continuing to have opportunities for growth and meaningful engagement throughout their lives with dementia.

The key to this approach is to set aside our clinician’s perspective and truly connect with each person, in order to understand the world as he or she sees it. Instead of trying to force each person to adapt to our institutional care environment, our challenge is to change the environment to meet the needs of the person with dementia. In this way, we create a world in which they can continue to succeed.

Transforming the care environment has three components. Most important is the personal component—changing our own attitudes about the capabilities of people with dementia and improving our interpersonal communication skills. Second is the operational component—cultivating close relationships, engaging people in day-to-day decisions, and creating opportunities for individualized, meaningful engagement. Third is the physical component—creating a physical environment that reflects the values of home and maximizes functional capability. These components can be applied in community settings as well as the nursing home.

The experiential model provides a framework for understanding the causes for distress in people with dementia, creating a response that is humanistic, attentive to individual needs, and succeeds without the need for medication. The reason that non-pharmacological approaches fail in the traditional care setting is because those discrete interventions are not sustainable without changing the larger care environment as well.

The primary goal of the experiential approach is not to eliminate behavioral symptoms—it is to create well-being. A recent paper identified seven dimensions of well-being that are not dependent upon absence of disease or high functional status. They are: identity, autonomy, connectedness, security, growth, meaning and joy.

A more holistic definition of dementia holds that it is a shift in the way a person experiences the world around her, and that it creates a situation where one’s ability to maintain her own well-being is challenged. This leads to the episodes of distress we often see. By restoring these seven domains of well-being, we can eliminate most of the distress without resorting to medication. Indeed, several studies have shown that, with targeted interventions, the vast majority of antipsychotic drugs can be stopped without significant worsening of distress.

In summary, by embracing the philosophies and practices of culture change, and by “taking them deeper” to apply them to the world of dementia, we can create a pathway to reconnect people with meaningful life and growth. This process creates a better experience for their care partners as well. It is time to move away from the “quantum” biomedical model of dementia, toward a “theory of relativity”—an experiential model of care.

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