Tag Archives: CJD

How to “Redirect” an Alzheimer’s Patient: Caregiver Tips

28 Feb

joindefeatdementiaHow do you “redirect” a dementia patient who wants to “go home” or  speak to someone who is no longer alive? How do you respond to a loved one who is living in a reality which isn’t yours? Here are a few tips that I posted yesterday on  Defeat Dementia, a Facebook group which provides information and support to caregivers of dementia patients:

• Don’t worry about convincing her that her loved one has already passed away, but to pay attention to the emotion she is expressing.

• Sometimes it is helpful to encourage the patient to talk about her loved one. Try questions like “what did you do with your (mom) when you were little?”, “What do you want to say to your (mom)?”

• Perhaps having a photo of her loved one available that you can look at together, ask her to tell a story about her loved one, might be strategies that would satisfy her.

• If necessary, some caregivers have tried a white lie, like “Your (mother) lives someplace else now.” or “I can’t take you there today. Maybe tomorrow.”

• It’s helpful to try to stay in the patient’s reality, and the death of her loved one is no longer a part of her reality, so saying her (mother) is dead only confuses her.

Source: UCSF Memory and Aging Center

For more information, visit the Defeat Dementia website, join our Facebook Group, visit the UCSF Memory and Aging Channel on YouTube, or check out UCSF’s Memory and Aging Center website.

What is CJD: Creutzfeldt-Jakob Disease?

1 Feb

Here is  a brief CJD FAQ, taken from UCSF’s Memory and Aging Center’s website. To learn more, visit the CJD website.

What is CJD?

Creutzfeldt-Jakob disease (CJD) is a human prion disease caused by a normal protein that becomes misshapen into a “prion”, builds up in the brain and disrupts normal brain function. It is a rare disorder that is fatal, usually within 6 months of diagnosis and a year of the first symptom. In the United States, there are about 300 new cases per year.

Creutzfeldt-Jakob disease (CJD) belongs to a family of diseases called “prion disease” [pree-ahn] caused by abnormal “prions”, microscopic infectious agents made of proteins. Prions cause a number of diseases in a variety of mammals, including bovine spongiform encephalopathy (BSE or “mad cow disease”) in cattle and scrapie in sheep.

What are the Signs and Symptoms?

Typical first symptoms include personality changes like anxiety and depression, memory loss, confusion and impaired thinking. Difficulties with balance and coordination as well as involuntary, jerking movements are also very common. People eventually lose the ability to move and speak. Pneumonia and other infections often occur in these patients and can lead to death.

What are the Tests?

When a diagnosis of Creutzfeldt-Jakob disease (CJD) is suspected, your doctor will likely order a number of tests. These can be helpful to either exclude other neurological diseases or support the CJD diagnosis.

Can I Participate in Research?

The CJD research at UCSF’s Memory and Aging Center focuses on understanding prion disease, diagnosing it earlier and more accurately, and developing treatments for CJD.

Other Resources

Please visit CJD Aware! a wonderful organization which provides information and support.

Get involved! Join the Defeat Dementia group on Facebook. Meet others in the fight against degenerative brain disorders such as Alzheimer’s disease (AD), non-AD dementias, including Frontotemporal Dementia and Creutzfeldt-Jakob disease (CJD) and others.

Here’s a link to the CJD video playlist from UCSF’s Memory and Aging Channel on YouTube.

Here’s a video featuring Dr. Michael Geschwind about the basics of Creutzfeld-Jakob Disease:

Mike Homer Has Died of CJD

1 Feb

I am sad to report that Internet industry legend Mike Homer has died today of CJD. This news was first reported this evening by Kara Swisher in her BoomTown blog. Kara writes:

We all liked Mike. In fact, we all loved the pugnacious, energetic and restlessly entrepreneurial Silicon Valley exec.

Sadly for those who knew him, Mike Homer died today at his home surrounded by family and friends, after a long battle with a severe illness. He was 50.

Homer is survived by his wife, Kristina, and three young children: James, Jack and Lucy.

His funeral is at Saint Raymond’s Catholic Church in Menlo Park on Thursday.

In 2007, Homer was diagnosed with Creutzfeldt-Jakob disease.

A rare, neurodegenerative “prion” disease, which in Homer’s case has occurred sporadically rather than via infection (the well-known variant that occurs in animals is called mad cow disease), CJD’s incidence is one case in a million annually, and few survive beyond a year after exhibiting symptoms.

His illness inspired his family and many friends to find treatments and a cure for the cruel disease and include the man–Dr. Stanley Prusiner–who won the Nobel Prize in 1997 for discovering prions, infectious agents that are at the heart of CJD.

Mike Homer was treated by specialists from UCSF. Homer’s fight made a tremendous impact on those who have been researching this devastating disease and raising public awareness about this and other forms of dementia.

Read about the Fight for Mike and Defeat Dementia campaigns here.

To learn more about current research and treatment options for CJD and other neurodegenerative diseases as well as how you can help, visit UCSF’s Memory and Aging Center’s CJD website or YouTube Channel.

The New Era of Personal Charity

27 Dec

In the  post-Madoff  meltdown, is the face of philanthropy changing? Lucette Lagnado's thinks maybe so according to her  article in yesterday's Wall Street Journal"When the Big Spenders Fail, Who Will Save Jewish Charity?" Ms Lagnado points out that over the past two decades, Jewish charities were receiving more money, but from fewer donors. But today she says,  this trend might reverse itself– funding may go from the hands of the few to the power of many –what she calls "communal philanthropy" — and if that's the case, she doesn't think that's so bad. 

Here's my favorite quote from the article: 

"…in our post-Madoff universe I find myself longing for tzedakah,  or personal charity, that took place before the rise of the uber-Jewish foundations and zillionaire philanthropists…It would be lovely to see the return of little checks — the donations everyone could afford to give and often did…"

Are we moving to a Web 2.0 model of giving? I immediately thought of Facebook's "Groups" and "Causes" enabling millions of members around the world — of all types of financial means — to join and contribute to causes and charities they care most about.   The Defeat Dementia Facebook Group,   for example, connects caregivers, family, friends, and others who support one another in the fight against neurodegenerative diseases such as Alzheimer's, CJD and FTD.   The New York Zen Center for Contemplative Care Group  helps support the underserved ill in NYC through chaplaincy work and training, contemplative care educational retreats, and outreach programs. Both are notable groups — please join.


Hoping that each one of us gives back in some way big or small in the New Year ahead.


Defeat Dementia, Know More Now

12 Jun
Join me and my colleagues at UCSF in the fight against neurodegenerative diseases  such as Alzheimer’€™s disease (AD),  Frontotemporal Dementia (FTD), Creutzfeldt-Jakob disease (CJD) and others.

The UCSF Memory and Aging Center is at the forefront of discovering causes, treatments and cures of dementia.The Defeat Dementia campaign seeks to help educate the public by generating broader national awareness of dementias.

Our hope is that increased public awareness will lead to early detection among patients, caregivers and health professionals and more participation in research and clinical trials.

Please grab and share this  Defeat Dementia widget with your friends, family, physicians, colleagues and others who may be interested in joining our public outreach campaign.

For more information, please visit our  Defeat Dementia Facebook Group and the  UCSF Memory and Aging Center. You can also visit our UCSF Memory and Aging Center YouTube Channel.