Personal Image from Westbrook, Connecticut
Well, it's been almost a year since I last posted. I took the time to complete my study on dementia in the workplace and beyond. You can find it here. I will discuss it in more detail in a future post. This is a good time to pause and reflect on the past year and share some of my thoughts on these last few months. Lot's going on in the dementia space and certainly more to come.
What we know:
Dementia is a complex phenomenon and as much as we've learned, there is still so much we just don't know.
As a society, we have not done a good job of educating the public. Yes, there are dementia support groups, the Alzheimer's Association, Dementia Friends, Dementia Society of America, etc., but we need more advocacy, not just for people with dementia but for their families and especially their caregivers/partners. Caregiver burden or burnout is very real and can lead to severe emotional and physical problems.
There is still much misunderstanding by the general public as well as among healthcare practitioners. Terms such as Alzheimer's (AD) and dementia are used interchangeably. AD refers to an abnormal overproduction of two proteins, amyloid-beta (plaques) and tau (tangles) and damage from these plaques and tangles are thought to cause dementia...if no amyloid or tau, it's not AD. Now this may sound crazy, but you can actually be diagnosed as having AD and be asymptomatic! Plaques and tangles may be present but no signs or symptoms of dementia are evident...review the article regarding the famous Nun Study.
People in their 30s, 40s, and 50s, with dementia (think early or younger-onset) are typically diagnosed by healthcare providers with depression, anxiety or stress as causes of their symptoms because dementia is still thought of as affecting older folks. I will say that a dementia diagnosis at an early age is difficult as symptoms can certainly reflect these other issues. It's not prudent to send everyone with depression, anxiety and who show signs of stress-related issues for a brain scan or cognitive testing. But a thorough diagnostic exam can uncover potential cognitive imbalance.
All neurologists are not the same: Being referred to a neurologist does not automatically guarantee you will be seeing a dementia expert. Neurologists have many specialties as people have many different neurological conditions. Primary care doctors should be able to help find appropriate referrals for their patients suffering from cognitive impairment. It is really important to perform your due diligence...be your own advocate and ask questions!
Dementia in the News:
It seems advocacy for causes increases when celebrities or other well-known people experience suffering. AD experienced a large amount of attention when former President Ronald Reagan announced having the disease. Several years ago, the late actor Robin Williams was diagnosed as having Lewy bodies dementia. Bruce Willis reportedly is currently suffering from Frontal Temporal Dementia (FTD) and most recently, former late-night talk show host Jay Leno's wife Mavis, was diagnosed with dementia, although I have not been able to verify which type. How significant is all this? I think anytime someone who is in the public eye and can disclose a physical or mental condition, it increases awareness and can lead to helping others. How much awareness is another question. There is still a lot of stigma surrounding cognitive impairment. Additionally, much of dementia cases are underreported as many who are suffering from this condition are not aware of it, especially in early stages.
Alzheimer's Clinical Trials: Almost all clinical trials of Alzheimer's disease (AD) drugs have failed (see article here). Medications targeting amyloid-beta (plaques) and tau (tangles) proteins have proven to be ineffective. Yes, there are minor cognitive improvements, for a short time, and in very early stages of AD. These drugs approved by the FDA are very expensive, side-effects include brain bleed and swelling, and many healthcare providers are reluctant to prescribe or suggest participation of patients in trials. Most of these trials were/are focused on reducing or eliminating Amyloid-Beta and tau, and although generally successful in doing so, cognitive health does not improve. Yet the FDA is moving ahead with approvals.
Dementia trends: In December of last year (2023) Alzheimer's Research UK posted that dementia is the number one cause of death in the United Kingdom. This is followed by heart disease and stroke respectively. This took me by surprise but what is more important is how many cases of dementia deaths are underreported. That's not just the UK but worldwide. Keep an eye on this trend and follow public policy changes and legislative actions to help fund efforts to educate, prevent, treat and support people with dementia and their care partners/families.
Stay tuned...more to come...
Comments