A recent study from the University of Wisconsin-Madison School of Nursing and College of Engineering found that the terminology caregivers of people with Alzheimer’s disease and related dementias (AD) use to describe symptoms of AD differs greatly from the terminology clinicians use. The study focuses specifically on symptoms of AD, known as neuropsychiatric symptoms, which include symptoms such as depression, apathy, delusions, hallucinations, agitation, and aggression, among others. "Nomenclature Used by Family Caregivers to Describe and Characterize Neuropsychiatric Symptoms" was published in The Gerontologist in November 2019.
The study was led by Andrea Gilmore-Bykovskyi, PhD, RN, an assistant professor in the UW School of Nursing and co-investigator in the Wisconsin Alzheimer’s Disease Research Center’s (ADRC) newly created Care Research Core. The research team included Nicole Werner, PhD, Harvey D. Spangler Assistant Professor of Industrial and Systems Engineering; Shannon Mullen, BS; Laura Block, BS; and Abigail Jacobs, BS. In the study, the team used a qualitative approach of semi-structured interviews to examine the language caregivers naturally use to describe Alzheimer's disease and related dementias symptoms.
Understanding how caregivers describe and understand these symptoms is important, as these symptoms represent a major challenge in providing for the needs of someone living with AD. Research shows that difficulty managing these symptoms may accelerate disease progression and negatively impact quality of life. Differences in caregiver’s terminology and language in describing these symptoms could also contribute to barriers in communicating with clinicians who are members of the care team, or in accessing proper management strategies. The authors highlighted the importance of family caregivers and clinicians collaboratively generating a shared understanding, which may be challenging if both parties are using very different terminology to describe AD symptoms.
In this study, all participants described symptoms multiple times spontaneously throughout interviews. The most frequently described symptoms were agitation, repetitive questions, and anxiety. The researchers found that caregivers used a wide range of terminology to describe these symptoms, and often engaged an explanatory sense-making method in their descriptions of these symptoms as a way of providing meaning to why they might be taking place. Many caregivers also endeavored to make sense of these symptoms by describing their patterns (pattern-oriented sense-making) or strategies used to address the symptom (strategy-oriented sense-making).
In using the explanatory sense-making lens, caregivers provided explanations for symptoms and outlined potential contributing factors to the care recipient's behavior. An example of the sense-making lens from the study was a caregiver saying, “And then I think she started to feel the fear, you know. She knows something is happening to her. She just doesn’t know what.” The authors suggest that this approach to describing symptoms differs significantly from clinician frameworks for describing symptoms, which predominantly focus on deficits and "problem-orientation" around symptoms. As a hypothetical example, a deficit-oriented approach to describing AD symptoms might be a clinician saying, “The patient became more impulsive and agitated, and was unable to be redirected.” Authors identified the distinction between this commonly used clinician framework and the sense-making caregivers used that attempted to situate symptoms in a broader context.
In addition to characterizing the ways caregivers described symptoms, they also reviewed the specific descriptors (words/phrases) used by caregivers. They learned that descriptors used by caregivers were applied to many AD symptoms. The authors suggest that interchangeable terminology or vague terms to describe symptoms might contribute to ambiguity around symptoms in discussions between caregivers or clinicians.
For clearer communication, the study team suggests earlier and more frequent engagement of caregivers in research and in the development of clinical- and research-related tools. They highlight that this is also a national research priority.
With the addition of the Care Research Core of the Wisconsin ADRC, the center reinvigorated and solidified its commitment to ensuring there are important research opportunities relevant to people living with AD and their caregivers. Dr. Gilmore-Bykovskyi’s study contributes to a growing national dialogue around the need for improvements in how we describe and understand people living with AD, and how clinicians and researchers can be more responsive to needs and sense-making of caregivers — who provide the vast majority of hands-on care to individuals with AD.
Story by Kaitlin Edwards
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