USA2 SPOTLIGHT

Watch the A-LIST Launch event, broadcast live yesterday on Facebook. The A-LIST is an online community of patients, and caregivers as a part of AD PACE, a groundbreaking patient/caregiver-led collaboration to deliver new insights to researchers, regulators and payers. The A-LIST has a growing list of more than 6,000 members. The A-LIST is an initiative of UsAgainstAlzheimer’s.
 

MUST READS

A May 19, 2018 Cosmos Magazine article explained how frontotemporal dementia is different from other types of dementia. With frontotemporal dementia, the first symptoms may include changes in personality and behavior, instead of memory loss, which is common in Alzheimer’s disease. According to the article, “One carer described how her husband would inappropriately approach young women, often interrupt conversations and make offensive remarks about other people’s appearances. This was completely out of character for him. The symptoms are diverse and can differ from person to person.”

RESEARCH AND SCIENCE

A May 21, 2018 Cambridge Network article focused on a new study which identified three new genes linked to the risk of Alzheimer’s disease. The study utilized genetic information from over 300,000 people from the UK Biobank, combining findings with new analysis involving children of people with AD. According to Dr. Riccardo Marioni of the University of Edinburgh, “New genetic discoveries can provide vital clues to the biological processes involved in Alzheimer’s, but our genetic makeup is not the only factor that affects our risk of the disease. We are now working to combine genetic data and information about people’s lifestyle to produce more comprehensive and personalised picture of Alzheimer’s risk.”

DEMENTIA AND THE ARTS

A May 17, 2018 BBC News article looked at the potential for music to unlock memories and bring joy to people with dementia. The “Music for Life” program is part of the “Created Out of Mind” initiative, a team of scientists, artists, musicians and writers based at the Wellcome Collection. The initiative explores the impact of dementia on the creative mind, and challenges the stigma.

CAREGIVING CORNER

A post by the Elizabeth Dole Foundation applauds the Senate for passage of the RAISE Family Caregivers Act. This legislation will identify evidence-based best practices and maximize effectiveness in supporting family caregivers through education, training, financial and workplace support.

REGIONAL HIGHLIGHTS

A May 17, 2018 La Jolla Light article focused on the second of a two-panel discussion at La Jolla Community Center about finding joy after an Alzheimer’s diagnosis. The audience had ample time to share their experiences. According to the article, “Another audience member expressed how she found joy in the journey with her mother who has Alzheimer's. "One of the most loving things you can do for yourself is to say, 'I can't,' and then seek out help from others," she said. "There are resources out there to help." All panel members agreed that San Diego is at the top of the list when it comes to available resources for caregivers and patients.”