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    Background and Objectives No effective cure is available for neurogenetic diseases such as Huntington disease, spinocerebellar ataxias, and Friedreich ataxia, all of which cause progressive motor, cognitive, and psychiatric symptoms leading, in the long term, to severe communication (among other) impairments. In end-of-life situations, advanced directives (indications formulated by the patient about end-of-life choices) are one decision-making resource for relatives, caregivers, and health care professionals. Given the slowly progressive nature of these diseases, the related disabilities, and their hereditary component, patients, caregivers, and neurologists are often at a loss concerning the right course of action to take. Our study’s aim was to explore patients’ and caregivers’ perceptions, needs, and expectations around anticipated end-of-life discussions and advanced directives. Methods DIRAGENE is an observational, cross-sectional, mixed-methods study with a patient-centered compo

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    • Via @GreenJournal: Including conversations about end-of-life-planning into their health care will benefit patients whose neurologic diseases have unfavorable long-term prognoses: https://t.co/agQ5LPUEdl #NeuroTwitter @AANMember #PalliativeCare #hospice #EndOfLifeCare https://t.co/o1wLUxx6F1

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    Policy makers in the US are increasingly concerned that greater use of the Medicare hospice benefit by people with dementia is driving up costs. Yet this perspective fails to incorporate potential cost savings associated with hospice. We estimated the association between hospice use by people with dementia and health care costs, using Medicare Current Beneficiary Survey data from the period 2002–19. For community-dwelling people with dementia, Medicare costs were lower for those who used hospice than for those who did not, whether hospice enrollment was in the last three days ($2,200) or last three months ($7,200) of life, primarily through lower inpatient care costs in the last days of life. In nursing homes, total and Medicare costs were lower for hospice users with dementia who enrolled within a month of death than for those who did not use hospice. Total costs for the entire last year of life for those who used any days of hospice in the last year compared with no hospice did not d

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    • A new paper from Melissa D. Aldridge of @MSHSGeriPalCare + coauthors finds that for people with #dementia, #Medicare health care costs were lower for those who used #hospice than for those who did not. Read the full study: https://t.co/ivSpZDZD4c

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    Commentary on: Wu Q, Zhu P, Ji Q, et al . The effect of death education course utilizing constructivist learning theory on first grade undergraduate nursing student attitudes and coping abilities towards death: A mixed study design. Nurse Educ Today . 2023 Jul;126:105809. doi: 10.1016/j.nedt.2023.105809. Epub 2023 Apr 6.

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    • Death education: The importance of terror management theory and of the active methods Don't miss this commentary by Ines Testoni 👉 https://t.co/BtYTC6CkcZ #Hospice #PalliativeCare #Nursing https://t.co/OZP8u0SwpZ

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    The content provided in this page is to help address the often difficult topics of hospice and palliative care. Content contributions were made by Steve Hodges.

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    • He also shares poignant insights on the importance of #palliativecare, and sometimes #hospice, as part of the #AML journey. Thank you @HealthTreeAML for making great use of our interview here too! https://t.co/gV7SL56APM #leusm #bmtsm #hapc #leukemia @DukeCancer @DukeHMCT

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    What Is Respite Care? - 9 month(s) ago

    When caring for a loved one around the clock, it can be easy to get burned out–which is where respite care comes in.

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    • Being a #caregiver for a loved one in #hospice allows you to spend invaluable time with them, but if you're not careful it can also lead to burnout. Learn how #RespiteCare can help: https://t.co/K1y5ERDP3w