At the University of California San Francisco (UCSF), I developed and deployed one of the first uses of social media among academic medical institutions to drive clinical trials outreach and caregiver support. You can read the San Francisco Business Times article where I’m interviewed about my pioneering campaign here.
How 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
Here is a brief CJD FAQ, taken from UCSF’s Memory and Aging Center’s website. To learn more, visit the CJD website.
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.
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.
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.
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.
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: