Brain Support Network

Researchers conclude: "Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings."

Researchers found that "[mitigators] of financial hardship included long-term-care insurance, Medicaid, or wealth, while intensifiers included being middle-income and in the workforce during disease manifestation."

Various types of "financial hardships" were studied -- direct financial hardships, emotional financial hardships (how participants felt about resources), and logistical financial hardships (what participants could do with resources).

The types of dementia included were Alzheimer's, Creutzfeldt-Jakob, Lewy body, and others.

“It may cost you your money, it costs you your life”: a framework for financial hardship in dementia AbstractBackground and objectives. Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual

“It may cost you your money, it costs you your life” study

Fifty-two people participated in this research -- 27 were former dementia caregivers, 16 were current dementia caregivers, and 9 were persons with #dementia.

academic.oup.com/gerontologis...

The objective of this study was to focus on early PD, the most targeted stage in neuroprotective clinical trials. We specifically examined DHTs in terms of concurrent validity and sensitivity to change.

Several studies in PD have already incorporated exploratory digital outcomes alongside traditional scales. However, a clear regulatory framework and consensus on their implementation remain lacking.

Outcomes derived from digital health technologies (DHTs) are emerging as promising biomarkers in Parkinson’s disease (PD), particularly for monitoring disease progression and potentially reducing sample sizes in clinical trials.

Digital outcomes as biomarkers of disease progression in early Parkinson’s disease: A systematic review Digital health technologies show potential for detecting subtle clinical changes in PD.

Digital outcomes as biomarkers of disease progression in early Parkinson’s disease: A systematic review

#Parkinsons

www.movementdisorders.org/Moving-Along...

Diet & Nutrition Improve your overall health with these diet & nutrition tips to live better with Parkinson's disease.

🍲 Eating a variety of foods will help you get the energy, protein, vitamins, minerals and fiber you need for good health.

Learn about nutrition and Parkinson's: Parkinson.org/living-with-parkinsons/management/diet-nutrition

Speaker: Mitchell Miglis, MD, autonomic specialist, Stanford Neurology
Dr. Miglis will address causes, triggers, symptoms, lifestyle changes, and treatment options.

Save The Date: August 13, 2025

Orthostatic Hypotension in Parkinsonian Syndromes
2:30-3:30pm PT

Join our webinar on orthostatic low blood pressure in parkinsonian syndromes – PD, MSA, and LBD.

No need to register. At the meeting time, join the webinar: stanford.zoom.us/j/9232089303...

“At some point, my father (with PSP) could not speak. This was difficult. I did my best to interpret his feelings based on his limited physical movements, his eyes, and the color of his face. I would try to calmly say to him, ‘I think this is what you are experiencing. I will do my best to help.’”

From One Caregiver to Others: How to Prepare for the Progression of Alzheimer's Disease

A husband's advice after caring for his wife after her diagnosis #alzheimers

www.nextavenue.org/from-one-car...

An “open label trial” is one in which both the participants and the researchers know if they are receiving the medication or not. (This is in contrast to a “double-blind trial.”)

Small Study of GLP-1 in MSA Showed Placebo Effects

In this study done in the UK, there was a 48-week open label trial where 50 patients with MSA participated — half received exenatide, a GLP-1 receptor agonist, and half did not.

www.brainsupportnetwork.org/small-study-...

...one of the two major forms of Lewy body dementia (LBD), the other being dementia with Lewy bodies (DLB). But what biological factors contribute to the appearance of dementia in a person with Parkinson’s disease?

Cognitive decline and dementia are part of Parkinson’s disease for most people. When a person develops dementia in the context of existing Parkinson’s disease, that is called Parkinson’s disease dementia (PDD)...

Gut Health and Parkinson’s Disease Dementia: A Hidden Connection?
Is there a connection between bacteria in the mouth and gut and the development of dementia in #Parkinson’s disease? New research may shed light.

www.lbda.org/gut-health-a...

Memory Problems Today Tied to Leaded Gas Levels Half a Century Earlier Lead-exposed neurons show persistent vulnerabilities

Memory Problems Today Tied to Leaded Gas Levels Half a Century Earlier
— Lead-exposed neurons show persistent vulnerabilities

#memory

www.medpagetoday.com/meetingcover...

We are still trying to understand Lisa’s untimely death and long suffering leading up to it. We are eternally grateful to know what we know [that Lisa had Alzheimer's disease] and not have to wonder forever.
Desiree M.
6/30/25

The Alzheimer’s Association, in its first clinical guidelines on blood biomarker testing, said Tuesday that tests that have over 90% sensitivity and 90% specificity can be used instead of current diagnostic methods like PET scans and cerebrospinal fluid tests.

A major Alzheimer’s disease medical group is recommending that specialists may use certain blood tests to help diagnose patients with cognitive impairment in lieu of more complex and invasive tests, a move that could lead more people to get treated for the devastating disease.

Major Alzheimer's group says some blood tests may be used in place of brain scans for diagnosis A major Alzheimer’s disease medical group is recommending that specialists may use certain blood tests to help diagnose patients with cognitive impairment.

Major Alzheimer’s group says some blood tests may be used in place of brain scans for diagnosis

www.statnews.com/2025/07/29/a...

The temperature of those with PD recovered more slowly as compared to MSA.

Ten-Second Cold Water Test Differentiates MSA and PD

Researchers say that they can differentiate those with multiple system atrophy from Parkinson’s disease based on the surface temperature of a finger that has been placed in cold water for 10 seconds.

www.brainsupportnetwork.org/ten-second-c...

Through humor, heart, and an unwavering commitment to change, Taking Care imparts a message of hope, resilience, and the profound impact individuals can have when they seek solutions to society’s greatest challenges.

Taking Care | The Legacies We'll Accept, And Those We Won't Directed and produced by award-winning filmmaker James Keach, Taking Care is a 38-minute documentary following the journey of acclaimed filmmakers Seth Rogen and Lauren Miller Rogen as they navigate t...

TAKING CARE is a 38-minute documentary following the journey of filmmakers Seth Rogen and Lauren Miller Rogen as they navigate the complexities and heartbreak of Lauren’s mother’s advancing #Alzheimer’s disease.
Now streaming on FUSE+, Amazon, Apple TV+, and Google Play.
www.takingcarefilm.com

Rather than contribute funds toward research, we contribute what the researchers need but are not organized to collect themselves: brain tissue of patients diagnosed with these rare neurological disorders.

At present, post-mortem brain tissue analysis is the only way to confirm a diagnosis of PSP, MSA, DLB, CBD, Alzheimer’s, Parkinson’s, Frontotemporal Degeneration, or vascular dementia. Of these families, half received a confirmed diagnosis that was different than the clinical diagnosis.