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ravenwintersky.bsky.social
@ravenwintersky.bsky.social
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mariecurieeolc.bsky.social
We’re excited to announce the launch of new research priorities for palliative and end of life care!

These have been created in a project with the JLA and other partner organisations, including co-funders the ESRC and @mndassoc.bsky.social, and guided by people affected by a life limiting illness.
The top 10 new priorities for palliative and end of life care research are: How do people with dementia experience end of life? How can palliative and end of life care better meet their needs and those of their carers, friends and families? How can NHS, social services and charities work more collaboratively to provide joined-up care that better meets the needs of people with a serious life-limiting illness and their carers, friends and families? What kinds of palliative and end of life care and support need to be in place to enable people to die well at home? What skills do staff need? What helps or hinders the delivery of care at home? What are the best ways to provide personalised palliative and end of life care that meets all the physical, mental, practical, social and spiritual needs of a person with a serious life-limiting illness? How can palliative and end of life care better meet the complex needs of people with multiple health conditions? How can communication and care co-ordination be improved across the teams of health and social care professionals caring for people with any serious life-limiting illness? What skills, training and information do carers, friends and family members need to be able to care for someone who is dying at home (e.g. giving medicines safely by injection, managing incontinence, moving people)? What is the impact (pros and cons) of upskilling the people giving care? How can the quality of palliative and end of life care in hospital be improved? What helps or hinders improvement? What are the best ways to provide palliative and end of life care, support and advice at all hours (24/7 or out of hours)? How can palliative and end of life care better meet the needs of people who live alone, or are socially isolated?
February 13, 2025 at 10:24 AM
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mehr.nz
dementia/adrd/memory folks— @carolynfredericks.bsky.social (Yale Neurology) has drafted a letter to the Alzheimer's Association asking them to take a stand against govt meddling in American science

orgs are out here showing their true colors; the AA should step up

sign it at tinyurl.com/alz-letter
Dear Alzheimer’s Association Leadership, We are members of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment, Alzheimer’s Association fellowship and grant awardees, and members of regional and national Alzheimer’s Association Advisory Committees. We are also scientists and academic faculty whose work focuses on advancing the science towards a cure for Alzheimer’s disease and related dementias. We are gravely concerned about the impacts of the recent actions of the federal government on Alzheimer’s research, and are writing to ask the Alzheimer’s Association to take immediate public action to protect our shared priorities. Recent actions by the Trump administration have damaged the infrastructure of the NIH and harmed medical research: Critical meetings have been canceled and not rescheduled, stopping the orderly distribution of Congressionally-mandated research funds. For example, the advisory council meeting of the National Institute on Aging, which is the world’s largest funder of Alzheimer’s research, was canceled on January 28th and cannot currently be rescheduled. The same has happened to the National Institute of Neurological Disorders and Stroke, which is a major funder of research in ADRD, and was to have had this cycle’s advisory council meeting last week. Study sections scoring new grants are also being canceled. Without these meetings, research that has already undergone expert review and been scored as a very high priority for federal funding will not receive funds. The impact on researchers, such as ourselves, will be devastating. These funds are needed to support research staff and to pay for research-related equipment, reagents, and imaging. It is unclear how long this will remain unresolved, and even if it is “only a pause” in funding, labs such as many of our own, which rely on federal funding, are in jeopardy. The Trump Administration has moved to slash “indirect cost” payments to academic insti… order to support high-quality research. A temporary restraining order is currently in place for 22 states whose attorneys general collectively sued the agency, with a federal judge stating that “work to cure and treat human disease will grind to a halt” if it goes into effect.1 Trump Administration has enacted “stage 1” of firings at the CDC and NIH, terminating 5,200 workers in an indiscriminate and abrupt action on Feb 14th that included a number of program officers, scientific reviewer officers, and the incoming director and principal investigators of the intramural NIH Center for Alzheimer’s and Related Dementias (CARD), along with 10% of its staff. Further “stages” of firings are anticipated in the coming weeks. NIH staff and scientists play a critical role in setting priorities for AD research, facilitating expert review of applications for research funding, and conducting high-impact intramural research within the NIH itself. Their work is crucial in ensuring that federal funding is directed towards the highest-quality research that will be most likely to bring us closer to a cure.2 We have dedicated our careers to finding a cure for Alzheimer’s disease, but under these circumstances, our research - and that of our colleagues and collaborators - will soon come to a grinding halt, leaving patients without hope or recourse. We are writing to you because we believe that respected organizations like the Alzheimer’s Association are our best hope in addressing this emergency. We have all benefited from the Alzheimer’s Association’s tireless and effective advocacy towards a cure, including by securing much-needed funding for Alzheimer’s disease research. However, that hard-won progress is now imperiled by shortsighted federal actions. We are requesting you take the following actions: Speak out publicly against cuts to NIH funding and personnel; Organize Congressional meetings so that Members of Congress and their staff can directly interact with the researcher…
February 24, 2025 at 8:33 PM
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jennijor.bsky.social
SUPPORT RESEARCH .Support assistance to those suffering from dementia.
February 23, 2025 at 4:27 PM