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OBJECTIVES: Nearly 75% of persons living with dementia (PLWD) in the US live at home and are cared for by informal family members who have limited access to supportive and accessible services, indicating an increased need for these types of services (Alzheimer's Association, 2023). The Alzheimer's Association call centers offer free telephone care consultations, but it currently remains unclear which types of brief telephone support benefit caregivers. This study compares outcomes of participants who received traditional care consultation calls via the Alzheimer's Association National Helpline with care consultation calls from Helpline staff trained in Solution-Focused Brief Strategies (SFBS), a client-centered evidence- and resource-based approach. METHOD: Sequential callers were randomly assigned to the "traditional" or "SFBS" care consultation groups and were assessed at the time of call (baseline) and post-call (T1). The outcomes of interest were general self-efficacy (GSE), self-efficacy in managing emotions (PROMIS), caregiver mastery, therapeutic alliance, and goal setting. RESULTS: Of over 500 callers, callers receiving the SFBS scored higher on therapeutic alliance and goal-setting metrics, such as greater sense of collaboration on goals (effect size = 0.280, p = 0.0005, significant with Bonferroni correction), mutual agreement with care consultant on goals (effect size = 0.418, p < 0.0001, significant with Bonferroni correction), and believing the way the problem was resolved was correct (effect size = 0.286, p = 0.0007, significant with Bonferroni correction) than those receiving the traditional care consultation. Both groups reported improvements in the PROMIS measure, but there were no differences between groups. There were no significant differences in GSE or caregiver mastery scores between groups. CONCLUSION: This study provides evidence for the effectiveness of the integration of SFBS in dementia care consultation calls as part of telephone-based supportive services for dementia caregivers.
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INTRODUCTION: As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient-, provider-, and systems-level barriers. Due to its high incidence, duration, and medical-social complexity, dementia is an ideal candidate for a patient-centric health care delivery model such as care navigation. METHODS: The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence-based guidelines. RESULTS: Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long-term care placement. Well-being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self-reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs. DISCUSSION: This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs. Highlights: Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems.The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence-based guidelines or principles.These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs.
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With the emergence of new clinical trial data on disease-modifying therapies in several. Alzheimer's disease (AD) studies, the Alzheimer's Association convened individuals living with AD to gain their perspective on meaningfulness and new treatments. A total of 30 Alzheimer's Association National Early Stage Advisory Group members participated in a focus group or an online survey to gain insights on what is wanted from a first-in-class treatment that could stop the progression of their disease at the earliest stage. Participants felt that researchers and regulators need to consider personal meaningfulness alongside clinical meaningfulness. At the same time, individuals living with AD felt that access, education, choice, and affordability were all important considerations moving forward.
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OBJECTIVE: The study evaluated the effects of care consultation delivered through the Alzheimer's Association National Helpline - a free resource in which master's-level clinicians offer confidential support. The study compared the effectiveness of Helpline "Care Consultation" and "Care Consultation Plus" conditions on caller outcomes. METHODS: Four hundred and forty-five non-crisis callers were randomly assigned to the traditional Helpline "Care Consultation" or a "Care Consultation Plus" condition that included one additional booster call. RESULTS: While no differences were found between the two conditions, the study found that callers reported significantly improved caregiver mental health scores (27 % net improvement over baseline) and ability to manage emotions (29 % net improvement) at one week (p = .006). By one week, 70 % of callers had put action steps in place and by 1 month 80 % of callers had put action steps into place. Over 80 % of callers reported action steps were "helpful". CONCLUSION: A single call provided a measurable benefit to caregivers'mental health, ability to manage emotions and ability to engage in action planning and accessing resources. PRACTICE IMPLICATIONS: This pilot study demonstrated that the support provided via the Helpline can be effective at improving caregiver mental health and improving the ability of callers to "take action".
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Doença de Alzheimer , Cuidadores , Doença de Alzheimer/terapia , Linhas Diretas , Humanos , Projetos Piloto , Encaminhamento e ConsultaRESUMO
In April, 2019, the Alzheimer's Association Dementia Care Provider Roundtable convened to discuss common challenges faced when implementing person-centered, non-pharmacological practices in long-term care and other settings that provide care and programs for persons living with dementia, and to develop relevant, specific guidance from the perspective of administrative leaders from 23 long-term and community-based care provider organizations (representing home, community-based, and residential care). Guidance related to 5 practice areas emerged from the facilitated discussion: having a foundational person-centered culture, conceptualizing behaviors as expressions and focusing on behavioral support, identifying antecedents and placing person-centeredness before protocols, modifying training to promote person-centered culture, and valuing implementation flexibility. In developing the practice guidance, a related list of priority areas for research and policy were also identified.
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Doença de Alzheimer , Demência , Doença de Alzheimer/terapia , Demência/terapia , Humanos , Assistência de Longa Duração , Assistência Centrada no Paciente , AutocuidadoRESUMO
Background and Objectives: Person-centered care is a philosophy of care built around the needs of the individual and contingent upon knowing the unique individual through an interpersonal relationship. This review article outlines the history, components, and impact of person-centered care practices. Research Design and Methods: Through literature review, published articles on person-centered measures and outcomes were examined. Results: The history of person-centered care was described, core principles of care for individuals with dementia outlined, current tools to measure person-centered care approaches reviewed, and outcomes of interventions discussed. Discussion and Implications: Evidence-based practice recommendations for person-centered care for individuals with dementia are outlined. More research is needed to further assess the outcomes of person-centered care approaches and models.
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Demência/terapia , Prática Clínica Baseada em Evidências/métodos , Assistência Centrada no Paciente/organização & administração , Humanos , Avaliação de Resultados em Cuidados de SaúdeAssuntos
Doença de Alzheimer , Demência , Assistência Centrada no Paciente , Guias de Prática Clínica como Assunto , Idoso , Doença de Alzheimer/complicações , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/psicologia , Cognição , Demência/diagnóstico , Demência/etiologia , Demência/terapia , Progressão da Doença , Prática Clínica Baseada em Evidências/métodos , Prática Clínica Baseada em Evidências/normas , Avaliação Geriátrica/métodos , Humanos , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/normas , Melhoria de Qualidade , Estados UnidosRESUMO
There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit-long sought openly by advocacy organizations and clinicians and badly needed by patients and families-could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors-and some that are internal to the benefit structure itself-that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail.
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Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/terapia , Medicare , Qualidade da Assistência à Saúde , Mecanismo de Reembolso , Humanos , Mecanismo de Reembolso/legislação & jurisprudência , Estados UnidosRESUMO
The objective of this paper is to understand how the public's beliefs in five countries may change as more families have direct experience with Alzheimer's disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer's disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer's disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer's disease, the public will generally become more concerned about Alzheimer's disease and more likely to recognize that Alzheimer's disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer's disease.