“Scientific American” published an article about Alzheimer’s caregiving. Despite the title, I think the article applies to caregiving of anyone with a neurological disorder and perhaps all caregiving! Here are some excerpts.
Excerpt:
The vast majority of caregivers know full well that their spouses or parents are ill, yet they still behave in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Yes, Cathy understood that she was dealing with a disease, with someone suffering from delusions and hallucinations, but when Frank [with Alzheimer’s], panicked by imaginary thieves, refused to crack open a window, Cathy [his wife] fumed with resentment, and that feeling gradually overcame her desire to be understanding and reasonable. … [Frank] lost his ability to see his wife as a complete person.
There is an effort underway to define “prodromal” or “preclinical” Alzheimer’s disease (AD). If someone has particular biomarkers (including tau in cerebrospinal fluid and amyloid seen on a special PET scan) but no memory loss (or other clinical symptoms of Alzheimer’s), there is a proposal to diagnose these people as having “Alzheimer’s disease.”
One of Brain Support Network’s missions is to facilitate brain donations around the US for various neurodegenerative disorders and healthy controls. A good percentage of the neuropathology reports are returned with the finding of primary age-related tauopathy (PART). PART is a disorder of the protein tau. To be diagnosed with Alzheimer’s disease (AD), one must have both tau tangles and amyloid plaques. In PART, only the tau tangles are present. And the tau tangles are in the medial temporal lobes. PART is *only* diagnosed through brain donation or brain autopsy.
Brain Support Network has helped over 1400 families with brain donation. Many times, the neuropathology report shows that the donor had a pathology called LATE, which stands for limbic predominant age-related TAR DNA-binding protein 43. LATE pathology often co-occurs with other pathologies. Recently, the journal “Neurology” published some research about LATE, based on brain autopsies.
Dr. Larry Golbe, a world-renowned expert on progressive supranuclear palsy (PSP), has his own blog (