Experts Agree: A Person-Centered Approach Key to Managing Dementia-Related Behaviors

November 17, 2020

Apathy, depression, anxiety, delusions, hallucinations, sexual disinhibition, sleep disturbance, aggression, and other behaviors can be common in people with dementia. Effectively addressing these requires an individualized, case-by-case approach. In What Is Really Needed to Provide Effective, Person-Centered Care for Behavioral Expressions of Dementia?, a study in the November issue of JAMDA, the authors reported on experts’ attempts to determine how to ensure that care addresses each individual’s condition and comorbidities, wishes, preferences, and values.

The Alzheimer’s Association Dementia Care Provider Roundtable, a group of 23 administrative leaders and expert providers in long-term and community-based care settings, met last year to identify change areas and offer person-centered practical solutions to address the unmet needs of people with dementia. The group identified five areas of guidance:

Having a foundational person-centered culture that permeates every activity within the organization, from language to mentoring to resource allocation.
Conceptualizing behaviors as expressions and focusing on behavioral support. While the common “disruptive” or “unpleasant” behaviors and responses are often presented as clinical symptoms of a disease, they are better understood as coping and/or communication strategies of individuals whose ability to think, remember, communicate, and control is lost or has changed.
Identifying antecedents and placing person-centeredness before protocols. An understanding of person-centered care concepts must come first to recognize how routines may be causing a behavioral expression to occur in the first place for each individual.
Ensuring training that promotes a person-centered culture. The methods by which providers are trained in applying a specific person-centered approach to address dementia-related behaviors can themselves reinforce an organization’s person-centered values. Curricula can be designed such that learners experience the related activities from the perspective of the person living with dementia.
Valuing implementation flexibility. A rigid, one-size-fits-all approach cannot be considered person-centered and may interfere with the sustainability of a new practice. Translating one-size-fits-all into a person-centered culture might begin with conducting a full review of each patient’s top soothers and stressors.

The authors concluded, “It is hoped that the five areas of guidance promoted in this article, along with progress in research and policy, will ultimately lead to real provision of effective, person-centered care for behavioral expressions of dementia, regardless of the setting in which care is provided.”

This study was conducted by researchers at the Alzheimer’s Association, Chicago, IL; University of North Carolina at Chapel Hill School of Social Work, NC; Brightview Senior Living Center, Baltimore, MD; Home Instead Senior Care, Omaha, NE; HCR ManorCare, Toledo, OH; Brookdale Senior Living, Brentwood, TN; and Senior Star, Tulsa, OK.

Click here for more information on the findings above and more details about the study. To contact the researchers or JAMDA editor for an interview, please email emullally@paltc.org.

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About JAMDA

JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine. JAMDA publishes peer-reviewed articles including original studies, reviews, clinical experience articles, case reports, and more, on all topics more important to post-acute and long-term care medicine. Visit www.jamda.com for more information.

About AMDA – The Society for Post-Acute and Long-Term Care Medicine
AMDA – The Society for Post-Acute and Long-Term Care Medicine is the only medical specialty society representing the community of over 50,000 medical directors, physicians, nurse practitioners, physician assistants, and other practitioners working in the various post-acute and long-term care (PALTC) settings. Dedicated to defining and improving quality, we advance our mission through timely professional development, evidence-based clinical guidance, and tireless advocacy on behalf of members, patients, families, and staff. Visit www.paltc.org for more information.

Recent Press Releases

title New CMS Rule Is a Victory for Medical Director Transparency

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November 17, 2023

Contact: Ellen Mullally
emullally@paltc.org/410-992-3124

The Centers for Medicare & Medicaid Services (CMS) has released a final rule calling for nursing homes to disclose specific ownership and managerial information—including skilled nursing facility medical directors.

AMDA – The Society for Post-Acute and Long-Term Care Medicine has been advocating for a publicly available database of nursing home medical directors for more than a decade, and Society leaders are thrilled with CMS’ actions in this final rule.

“AMDA has strongly advocated for the public reporting of nursing home medical directors for many years, including working with members of Congress on legislation—the Nursing Home Disclosure Act—that addresses this important topic,” said Milta Little, DO, CMD, the Society’s president. “We are happy that CMS has addressed this in its new rule and believe it is thanks in no small part to the steadfast efforts of our members and staff. We appreciate everyone’s vision and passion.”

“Providing the public with information about the medical director will ensure that patients and residents, as well as their families, policymakers, and others, will have access to and learn more about the clinical and administrative leader of the facility,” added Alex Bardakh, MPP, CAE, AMDA’s senior director, advocacy and strategic partnerships. “This rule is a testament that change can happen with the right message and approach. We applaud everyone who has worked with us to achieve this outcome.” It will be essential to monitor how this information is presented to the public, and the Society stands ready to engage with CMS as this rule is implemented.

The CMS rule is a step toward Biden Administration's goals of increasing the transparency of nursing home ownership and overall industry competition. As always, the Society appreciates the administration’s continued focus on the needs of patients and residents in post-acute and long-term care and the recognition that they, along with their families, need access to all the information necessary to make critical care-related decisions.

Read the rule and the CMS fact sheet.

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date:

Friday, November 17, 2023

path: https://old.paltc.org/newsroom/new-cms-rule-victory-medical-director-transparency

title Personality Changes Before Cognitive Impairment Aren’t Predictive of Dementia But Have Other Useful Implications

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FOR IMMEDIATE RELEASE: October 25, 2023

Contact: Ellen Mullally
emullally@paltc.org/410-992-3124

People may start to experience some personality changes even before cognitive impairment happens. However, a study in the October issue of JAMDA suggests that these changes are generally small and inconsistent, thereby making them unlikely to be useful predictors of incident dementia. The study findings further indicate that individuals could recognize their personality changes during the early stages of cognitive impairment.

In Changes in Personality Before and During Cognitive Impairment, the authors assessed older adults participating in the Health and Retirement Study for cognitive impairment, completing a measure of five major personality traits—extraversion, agreeableness, conscientiousness, neuroticism, and openness—every four years from 2006 to 2020. The authors then examined changes before and during cognitive impairment, accounting for demographic differences and normative age-related trajectories. Before cognitive impairment, participants experienced slight decreases in extraversion, agreeableness, and conscientiousness, and no significant changes in neuroticism or openness.

In contrast, personality changes during cognitive impairment were two- to three-fold larger and more significant for all five traits. Overall, said the authors, their findings were consistent with the expected detrimental and accelerating changes in personality with the progression of cognitive impairment. The authors concluded that their study has both theoretical and clinical implications. They said, “The changes in the five major personality traits are likely to parallel behavioral, emotional, and other psychological changes commonly observed in people with cognitive impairment and dementia.” For instance, they suggested, the increase in neuroticism could “manifest as increased mood fluctuations, sadness, uncontrolled temper, [and] anger, and emotional vulnerability, social withdrawal, passivity, and decreases in talkativeness could be signs of the decline in extraversion.

The authors said their findings indicate that most patients do not seem unaware of early, disease-related personality changes. Indeed, they said, “The change in self-ratings provides evidence that many patients are able to recognize changes similar to those observed by knowledgeable informants and clinicians. This suggests that most patients are aware of their personality and update their ratings to recognize the changes occurring during the early stages of cognitive impairment.” Given this, they indicated, the findings support patients themselves as a useful source of information.

This study was conducted by researchers at Florida State University, Tallahassee, FL; University of Montpellier, Montpellier, France; and Cornell University, Ithaca, NY.

Get more information on the findings above and more details about the study. To contact the researchers or JAMDA editors for an interview, please email emullally@paltc.org.

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About JAMDA

date:

Wednesday, October 25, 2023

path: https://old.paltc.org/newsroom/personality-changes-cognitive-impairment-aren%E2%80%99t-predictive-dementia-have-other-useful

title Personality Changes Before Cognitive Impairment Aren’t Predictive of Dementia But Have Other Useful Implications

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FOR IMMEDIATE RELEASE: October 25, 2023

Contact: Ellen Mullally
emullally@paltc.org/410-992-3124

This study was conducted by researchers at Florida State University, Tallahassee, FL; University of Montpellier, Montpellier, France; and Cornell University, Ithaca, NY.

Get more information on the findings above and more details about the study. To contact the researchers or JAMDA editors for an interview, please email emullally@paltc.org.

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About JAMDA

date:

Wednesday, October 25, 2023

path: https://old.paltc.org/newsroom/personality-changes-cognitive-impairment-aren%E2%80%99t-predictive-dementia-have-other-useful-0

title Screening for EDS Helps Identify Nursing Home Residents At Risk of Adverse Outcomes, Mortality

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FOR IMMEDIATE RELEASE: October 17, 2023

Contact: Ellen Mullally
emullally@paltc.org/410-992-3124

Excess daytime sleepiness (EDS) is an increasingly frequent condition among older nursing home residents with comorbidities. But it’s more than just a nuisance that suggests boredom or that keeps people from engaging. According to a new study in the October issue of JAMDA, EDS is actually a predictor for mortality risk and is associated with age-related comorbidities in nursing home (NH) residents. The authors found that screening for EDS is a simple strategy to identify residents at higher risk of adverse outcomes, triggering an assessment for reversibility or conversations about end-of-life care.

In Daytime Sleepiness Predicts Mortality in Nursing Home Residents: Findings from the FIRST Study, the authors conducted a prospective and cross-sectional analysis of older adults permanently residing in 12 nursing homes in South Australia. Trained research nurses collected data at baseline using three methods: interviews with residents or an on-site RN familiar with the resident, direct observations, and medical record reviews. Further, EDS was subjectively assessed using the Epworth Sleepiness Scale (ESS), an eight-item questionnaire measuring current levels of sleepiness via inquiry about the likelihood of falling asleep in diverse situations.

The researchers found that residents with EDS were more likely to have malnutrition, a higher mean number of falls in the last year, heart failure, and severe dementia. Those with mild-to-moderate EDS were also more likely to have a myocardial infarction, heart failure, and polypharmacy, while those with severe EDS were also more likely to have a higher mean number of falls in the previous year. From the total sample, 20.7% of residents were deceased at 12 months, and mean ESS scores were higher among these individuals.

“To our knowledge, this is the first study demonstrating that EDS has an independent impact on the one-year survival of older adults living in nursing homes,” the authors said. They noted that other studies of community-dwelling older adults found that EDS was associated with low physical activity, falls, functionality, cardiovascular risk factors, malnutrition, dysphasia, depression, cognitive impairment, and poor self-rated health. Nonetheless, they noted that “the role of EDS in the risk of health outcomes including mortality for those living in NHs is poorly understood and methods to objectively measure EDS in this population are difficult to perform.” They suggested the value of additional research on the short- to mid-term effects of potentially reversible markers on adverse outcomes in this population, including EDS.

This study was conducted by researchers at Adelaide Geriatrics Training and Research with Aged Care (GTRAC) Centre, Adelaide Medical School, the Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, Australia; and Aged and Extended care Services, The Queen Elizabeth Hospital, Central Adelaide Local Health Network, Adelaide, Australia.

Get more information on the findings above and more details about the study. To contact the researchers or JAMDA editors for an interview, please email emullally@paltc.org.

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About JAMDA

date:

Tuesday, October 17, 2023

path: https://old.paltc.org/newsroom/screening-eds-helps-identify-nursing-home-residents-risk-adverse-outcomes-mortality

title Prioritizing Resident Autonomy in Post-COVID Healthcare

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FOR IMMEDIATE RELEASE: September 28, 2023

Contact: Ellen Mullally
emullally@paltc.org/410-992-3124

The COVID pandemic made people take a new look at how patients are involved in their own care. A new article in the September issue of JAMDA suggests that government and healthcare organizations need to take the time to engage residents in decision-making and policy development that affects their care, treatment, and support systems.

In efforts to protect residents from COVID infections, the authors noted, governments and continuing care facilities put residents in isolation. “This negatively affected residents’ quality of life in the form of physical, mental, and cognitive health deteriorations,” they said. The authors further noted that the restrictions put in place to decrease the risk of infection and death “focused solely on beneficence and non-maleficence at the expense of residents.” These restrictions included canceling group activities and communal dining, forcing residents to quarantine in their rooms, and banning or severely limiting family caregiver visits.

The authors suggested, “Part of autonomy is the dignity to take risks, allowing an individual to engage in positive risk-taking with subsequent improvement in quality of life….The importance of an individual’s ability to take risks while living in care is a well-established concept, defined as Dignity of Risk.” Positive risk-taking, the authors said, can lead to positive outcomes such as supporting cognitive and functional abilities, independence, resilience, and living a life that aligns with an individual’s goals and values, which, in turn, enhances quality of life.”

Governments and healthcare organizations have failed to support resident autonomy “due to their risk intolerance, silencing resident voices, and infringing on residents’ rights and freedoms during the last phase of their life,” the authors said. They added that residents need and deserve a caring home environment that “will uphold their right for autonomy and dignity to experience the positive outcomes that result from risk-taking, despite governments’ and healthcare organizations’ narrow and limited view of risk as a negative construct that requires an abundance of caution.”

This study was conducted by researchers at Athabasca University, Calgary, Alberta, Canada.

Get more information on the findings above and more details about the study. To contact the researchers or JAMDA editors for an interview, please email emullally@paltc.org.

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About JAMDA

date:

Thursday, September 28, 2023

path: https://old.paltc.org/newsroom/prioritizing-resident-autonomy-post-covid-healthcare

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