HELP US TO MAKE THE VOICES OF PEOPLE LIVING WITH DEMENTIA HEARD IN WASHINGTON DC!
CCAL-Advancing Person-Centered Living is working with the University of Buffalo-Institute for Person-Centered Care on a research project funded by the Retirement Research Foundation and approved by the Internal Review Board at the University of Buffalo. This is the second round of a survey which aims to develop agreement on priorities for dementia care, research and government from the perspectives of people living with dementia, family care partners and those who provide direct care. As someone with knowledge about dementia, we invite you to take part in this study. You may have responded to the first round ÛÒ if so THANK YOU! If not, please add your voice by taking part in round 2. You can call the number below to get help completing the survey over the phone. Or a paper survey and a pre-addressed, postage-paid envelop can be mailed to you if you would prefer this method instead of completing the survey online.åÊ The contact details are at the end of this message. We will combine the views of everyone who takes part in the survey. We will use the information to help inform federal policy makers about what people feel is important and needed concerning dementia care to better inform and shape their priorities. Your response by June 6, 2014 would be appreciated. To take part online click here or go to: https://www.surveymonkey.com/s/CoalesceandConnect2 To complete the survey over phone contact: Karen Love Founder, CCAL-Advancing Person-Centered Living (703) 533 3225 To request a paper version contact: Dr. Davina Porock Director, UB Institute for Person-Centered Care (716) 829 2260 Or email dporock@buffalo.edu
Alzheimer’s Deaths Vastly Under-reported
The purple angel has much more watching out to do.
According to a study in the journal Neurology, there were an estimated 503,400 deaths in Americans aged 75 years and older attributable to Alzheimer’s Disease in 2010 compared with less than 84,000 reported on death certificates for that year. Experts say Alzheimer’s disease and other dementias are under-reported on death certificates and medical records. They often list pneumonia rather than listing dementia as an underlying cause.
Data came from two studies involving 2,566 persons aged 65 years and older (mean 78.1 years). Bryan James Ph. D., a researcher at Rush University Medical Center, examined cadaver brains of individuals who had the disease. This new study at Rush University Medical Center indicates that Alzheimer’s disease may be one of the leading causes of death in the United States. Dr. James says an estimated 5 million people age 65 and older suffer from Alzheimer’s disease. There are approximately 200,000 individuals younger than 65 who have younger-onset Alzheimer’s. Over an average of 8 years, 559 participants (21.8%) without dementia at baseline developed AD dementia and 1,090 (42.4%) died. Median time from diagnosis to death was 3.8 years. The mortality rate was 4.30 for ages 75ÛÒ84 years and 2.77 for ages 85 years and older. The odds of being at risk for the disease jump dramatically – 37.0% for ages 75ÛÒ84 and 35.8% for ages 85 and older. That is of course concerning. There is no cure but perhaps if we live a more healthy lifestyle we can keep it at bay.
Rare Caregivers Site Addresses the Needs of Family Caregivers of Loved Ones with Rare Diseases
More relief for caregivers of those with rare diseases is now available.
- Caregiving Information You Can Use Now
- Take Care of Yourself
- Complex Emotions
- Family Matters
- Other Places to Turn for Help
CANÛªs new ÛÏCaring for Rare Disease CaregiversÛ website was supported with funding from Genzyme, a leading biotechnology company whose mission is to develop and deliver transformative therapies for patients with unmet medical needs. ÛÏThis new website will be an exceptional resource to help families in their rare disease caregiving journey,Û said Toni Mathieson, Executive Director, Niemann-Pick Disease Group (UK) and Board Member of the International Niemann-Pick Disease Alliance.åÊÛÏThere are millions of rare disease caregivers around the world who need caregiving information and support networks,Û she added. Caregiver Action Network created the new ÛÏCaring for Rare Disease CaregiversÛ website to address the needs expressed by actual rare disease caregivers.åÊ In a meeting with CAN in 2013, rare disease caregivers reported unmet needs related to social support, self-care and connections across diagnoses; and expressed a clear consensus opinion that they would be well served by a resource they could access dedicated to their needs as a caregiver, in addition to the disease specific resources they already utilized. CAN then worked with a special, international task force of rare disease caregivers in developing the new ÛÏCaring for Rare Disease CaregiversÛ website. The Caregiver Action Network invites rare disease patient organizations around the world to link to the new www.RareCaregivers.org website.åÊ As John Schall, CEO of CAN, explained, ÛÏThe new website is focused only on caregivers, not on patients.åÊ Disease-specific organizations are the real experts for information on a host of rare diseases like PompeÛªs, Tay-Sachs, Huntington Disease or GaucherÛªs, for example. We welcome partnerships with rare disease organizations and patient groups so that we can help them by providing resources solely directed towards the caregiver of a loved one with a rare disease.Û
