New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable as well as more accessible. Standardized clinical recommendations and guidance for counseling and disclosure in this context are not yet well developed. Our scoping review identified publications from database searches in PubMed, PsycINFO, LIVIVO, and Web of Science. Inclusion criteria were: (1) information or counseling, (2) biomarkers and a type of cognitive impairment or AD, and (3) published between 2005 and 2024. We identified 63 articles and synthesized them along the categories of staged information provision: pre‐test counseling, disclosure, and post‐disclosure follow‐up. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the need to further develop and specify comprehensive and standardized guidelines for counseling, disclosure, and post‐disclosure follow‐up in the context of AD biomarker testing.Highlights: New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable and also more accessible. However, clinical recommendations and guidance for counseling and disclosure in the context of AD biomarker testing are currently not well developed. We carried out a scoping review with the aim to generate an overview of the scientific literature and guidance available regarding counseling, biomarker test result and dementia risk disclosure, and clinical management prior to and in the course of a biomarker‐based diagnosis in early stages of AD. We identified 63 relevant articles. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the urgent need for national and international consensus guidelines for comprehensive and staged counseling and disclosure practices. While most publications identify relevant ethical challenges posed for counseling practices in the context of AD biomarker testing, they rarely present any practical recommendations for clinicians, on how and what to counsel on a concrete level.
With advances in biomarker‐based detection of Alzheimer's disease (AD) and new treatment options with disease‐modifying treatments (DMTs), we are heading toward a new conceptualization of diagnostics and therapy in the early stages of AD. Yet consensus guidelines on best clinical practices in predictive AD diagnostics are still developing. Currently, there is a knowledge gap regarding counseling and disclosure practices in early symptomatic disease stages, its implications for dementia risk estimation, and DMTs with associated risks and benefits. The crucial feature is the capacity of patients with (mild) cognitive impairment, eligible for DMTs, to consent. This perspective aims to (1) discuss the current challenges in assessing capacity to consent and (2) highlight the importance of a supported (informed) decision‐making process. Measures to facilitate informed decision‐making of patients constitute an ethical approach to enhancing the quality of care in this evolving therapeutic landscape. Highlights: This perspective: Explores biomarker‐based early symptomatic AD detection and the implications for patient care. Emphasizes supported decision‐making in DMTs for MCI and dementia patients. Discusses the need for standardized tools to assess the capacity to consent. Aligns diagnostic and treatment approaches with ethical care standards. Enhances patient autonomy in the evolving AD therapeutic landscape.
The COVID-19 pandemic has brought unique challenges for caregivers. This study examines whether individual resilience accounted for differences in caregiver burden, coping-related resilient behaviors, depression, and stress during the COVID-19 lockdowns. A total of 324 caregivers responded to a survey covering three time points (pre-pandemic (t0, retrospective), first lockdown in April 2020 (t1, retrospective), and second lockdown in winter 2020/2021 (t2, prospective)). Items covered the care situation and caregiver burden (t0 and t1), coping-related resilient behavior (t1), perceived stress (PSS-10) and depression (GDS-15) (t1 and t2) as well as resilience (BRS) (t2). Higher resilience was associated with lower caregiver burden, a higher degree of coping-related resilient behaviors, and with lower perceived stress but higher depression. Stress and depression showed different trajectories over time depending on resilience. Resilience-promoting interventions for caregivers should be used to reduce stress and caregiver burden. Special attention should be paid to depression prevention, with tailored programs to address the needs of resilient caregivers during lockdowns.
18 April 2024 in Zeitschrift für Gerontologie und Geriatrie
Zusammenfassung: Hintergrund: In Deutschland mangelt es im Bereich der Demenzversorgung an multiprofessionellen, sektorenübergreifenden Strukturen, die Hausärzt*innen unterstützen und es ermöglichen, auf individuelle Bedürfnisse von Patient*innen und Angehörigen einzugehen. Infolgedessen ereignen sich häufig Versorgungskrisen, die zu Krankenhaus- und Pflegeheimeinweisungen führen.Ziel der Arbeit: Der Beitrag thematisiert das Innovationsfonds-geförderte Modellprojekt zur ambulanten medizinisch-pflegerischen DemenzversorgungDemStepCare. Hierzu werden Hintergründe, Zielsetzungen und Status quo des Projekts vorgestellt sowie Herausforderungen bei der Rekrutierung angesprochen.Material und Methoden: Im Mittelpunkt vonDemStepCaresteht die gezielte Unterstützung der hausärztlichen Versorgung mittels eines bedarfsadaptiert tätigen, ambulanten Case Managements sowie einer von Pflegeexpert*innen geführten Krisenambulanz. Darüber hinaus soll das Modellprojekt zu einer stärkeren Demenzkompetenz der einbezogenen Hausärzt*innen beitragen.Ergebnisse: Trotz erlebter Rekrutierungsproblematiken zeigt sich bereits eine gute Realisierbarkeit des Modells im ambulanten Setting. Befragungen von Case Manager*innen, Mitarbeiter*innen der Krisenambulanz und Hausärzt*innen belegen eine wahrgenommene Wirksamkeit, wenn es um die Prävention von Versorgungskrisen geht. Hausärzt*innen bestätigen eine höhere Sicherheit im Umgang mit Demenzerkrankungen.Diskussion: DemStepCarebietet das Potenzial, eine Versorgungslücke zu schließen, indem Hausärzt*innen effektive ambulante Unterstützungsinstrumente zur konsequenten Demenzversorgung und Risikoprävention an die Hand gegeben werden. Weitere Anstrengungen zur Stärkung einer hausarztbasierten, sektorenübergreifenden Demenzversorgung sollten angestrebt werden.