Dementia

Hi Friends,

Our discussion topic for Tuesday January 21 is "dementia." Somehow it seems to come logically out of the topics covered in the previous two months, on "death" and "self," for what are we if not our memories.

We also think this is a good, if perhaps uncomfortable, topic for our group to discuss because:

it's a huge issue, directly affecting an estimated 8.3 million people in the US alone
Alzheimer's is the most prevalent kind of dementia, accounting for about 70% of cases
direct financial costs associated with dementia are estimated to be $ 290 billion, and this doesn't begin to count all the unpaid caregivers, usually family members
as the population continues to age, so will the incidence of dementia: in 2019, in the United States, approx. 0.9 million people aged 65-74 had Alzheimer's; of people 75-84 years old, approx. 2.6 million had it; and of those 85 years and older, approx. 2.1 million had it
there is no known cure, but everyone is working on one...beware the snake oil salespeople!
there are things and activities which can help prevent dementia -- for real

NOTE: Total payments in 2019 (in 2019 dollars) for all individuals in the U.S. with Alzheimer's or other dementias are estimated at $290 billion. Medicare and Medicaid are expected to cover $195 billion, or 67 percent, of the total health care and long-term care payments for people with Alzheimer's or other dementias. Out-of-pocket spending is expected to be $63 billion, or 22 percent of total payments. (Source: 2019 Alzheimer's Disease: Facts & Figures from the Alzheimer's Association)

We have some background reading for you, and then we're organizing information around a series of discussion questions. For each, we're providing both "required" and "optional" information. Of course, everyone is free (encouraged, even!) to explore more on her/his own.

Happy reading and thinking!

Background
Dementia is a disease -- it is a neurocognitive disorder, it is the breakdown of intellectual (cognitive) functions. It is degenerative, i.e., it gets worse with time. Alzheimer's is thought to initiate about 20 years before symptoms appear to the person affected. The term refers to progressive mental and behavioral changes caused by neurological diseases that permanently damage the brain by impairing the activity of brain cells.

These changes can affect memory, speech, reasoning, and, in general, the ability to perform acts of daily living. Alzheimer's disease (AD), which is the most commonly known dementia, accounts for about 70 percent of all dementia cases. The main risk factor for the development of dementia is age. Prevalence rises from 1 in 1,000 for those aged 45 to 65, to 1 in 5 for those aged 80 to 90, to 1 in 3 among those over age 90. Dementia is one of the leading causes of disability among older people worldwide.

Older age alone is not sufficient to cause Alzheimer's. Occasional forgetfulness and memory lapses are part of normal aging - by themselves, they are not signs of dementia and not all people with mild cognitive impairment will progress over time to dementia.

In addition to Alzheimer's, other frequently seen dementias include:

Lewy Body Dementia (LBD); also called Dementia with Lewy Bodies. In addition to outward traits, one of the primary identifying factors of LBD is visual hallucinations. The hallucinations typically are of smaller people (children) or animals, and are usually not upsetting to the person with LBD.
Vascular Dementia This type of dementia is sometimes called "Post Stroke Dementia" and is quite different from Alzheimer's or Lewy Body Dementia. Vascular Dementia is actually brain damage traced to cardiovascular problems, or mini-strokes that caused bleeding or harm in the brain. The most outstanding symptoms that identify Vascular Dementia are when drastic changes occur immediately following a stroke.
Fronto Temporal Dementia FTD occurs when there is deterioration to the Frontal and Temporal Lobes of the brain. The person experiences problems with language, and significant changes in their personality and behavior.

And yes, there are many, many more types of dementia. There is dementia resulting from years of alcohol misuse. There is dementia associated with Parkinson's Disease. There is dementia that is a result of a traumatic brain injury. All in all, there are over 100 types of dementia researched today.

Dementia comes from the Latin word dementis meaning "insane." The American Psychiatric Association's 5th edition (2013) of its Diagnostic and Statistical Manual (DSM 5) replaced the term dementia with mild/major neurocognitive disorder.

A 2019 estimate indicated that approximately 5.8 million Americans have Alzheimer's dementia (AD). By mid-century (i.e., by 2050), the number of people living with AD in the United States may grow to 13.8 million, fueled in large part by the aging baby boom generation. In 2017, official death certificates recorded 121,404 deaths from AD, making AD the sixth leading cause of death in the United States and the fifth leading cause of death among Americans age 65 years and older.

The percentage of people with AD increases dramatically with age: 3 percent of people age 65-74, 17 percent of people age 75-84 and 32 percent of people age 85 or older have Alzheimer's.

Between 2000 and 2017, deaths resulting from stroke, heart disease, and prostate cancer decreased, whereas reported deaths from AD increased 145%. In 2018, more than 16 million family members and other unpaid caregivers provided an estimated 18.5 billion hours of care to people with Alzheimer's or other dementias.

For discussion

1. What is "dementia" and how big a problem is it?

This is a trickier question than it sounds. For our discussion, we're not including what may be called "mild cognitive decline" when people may struggle to find the right words, or may have more trouble in routine household tasks like cleaning or paying the bills. We're talking about more severe declines, with a marked increase in forgetfulness, and challenges in doing complex tasks. An added area of concern: dementia can affect areas of the brain that are responsible for movement and balance. The accumulation of the protein fragment beta-amyloid (called beta-amyloid plaques) outside neurons, and the accumulation of an abnormal form of the protein tau (called tau tangles) inside neurons, are two of several brain changes associated with Alzheimer's.

Worldwide, people are living longer and the proportion of elderly individuals in the global population is increasing yearly, with the United Nations estimating that one in five people will be aged 60 or over by 2050. Accompanying this ageing population will be a surge in the prevalence of disabling and life-threatening illnesses, representing a major global public health challenge. Among the most common of these conditions is dementia, with the number of individuals diagnosed predicted to rise 3-fold in this period, affecting 131.5 million people worldwide by 2050.If this brief information seems too-broad or even fuzzy, we suggest you read on!

Normal Aging vs. Dementia
While some mild changes in cognition are considered a normal part of the aging process, dementia is not. Normal age-related declines are subtle and mostly affect the speed of thinking and attentional control. In abnormal aging, declines in cognition are more severe and may include other thinking abilities, such as rapid forgetting or difficulties navigating, solving common problems, expressing oneself in conversation or behaving outside of social rules. Abnormal aging can also include the motor system resulting in excessive tripping, falls or tremor. Often it is difficult to determine exactly when a person should be concerned with cognitive changes they may be experiencing. Symptoms vary from person to person - what is normal for one person may not be normal for another. This contributes to the challenges clinicians face when determining whether what someone is experiencing is a significant decline for them or within normal expectations.

Stages of Alzheimer's Disease Dementia is typically thought of as progressing from a mild stage, characterized by slips of the memory and confusion in complex situations, through a moderate stage, during which the degree of cognitive impairment intensifies to affect an increasing number of activities of daily living, e.g., use of language, ability to recognize friends and relatives, ability to make sense of the visual world, ability to use household objects or appliances effectively and safely, and ability to dress and attend to personal hygiene. The severe stage of dementia is characterized by serious disability in which the person is likely to have limited language and understanding and to be totally dependent upon others for all their physical needs (eating, drinking, toileting).

Socioeconomic Factors A family history of Alzheimer's is not necessary for an individual to develop the disease. However, individuals who have a parent, brother or sister with Alzheimer's dementia are more likely to develop the disease than those who do not have a first-degree relative with Alzheimer's. Those who have more than one first degree relative with Alzheimer's are at even higher risk.

Education People with more years of formal education are at lower risk for Alzheimer's and other dementias than those with fewer years of formal education. Some researchers believe that having more years of education builds "cognitive reserve." Cognitive reserve refers to the brain's ability to make flexible and efficient use of cognitive networks (networks of neuron-to-neuron connections) to enable a person to continue to carry out cognitive tasks despite brain changes. The number of years of formal education is not the only determinant of cognitive reserve. Having a mentally stimulating job and engaging in other mentally stimulating activities may also help build cognitive reserve.

Having fewer years of formal education is associated with lower socioeconomic status, which in turn may increase one's likelihood of experiencing poor nutrition and decrease one's ability to afford health care or medical treatments, such as treatments for cardiovascular risk factors. In addition, people with fewer years of education tend to have more cardiovascular risk factors for Alzheimer's, including being less physically activity and having a higher risk of diabetes and cardiovascular disease.

Additional studies suggest that remaining socially and mentally active throughout life may support brain health and possibly reduce the risk of Alzheimer's and other dementias.

Optional reading would include materials made available at The Alzheimer's Association Website -- go to: https://www.alz.org/

In addition, you might want to explore these information resources:

Basics of Alzheimer's: What It Is and What You Can Do from Alzheimer's Association. https://www.alz.org/national/documents/brochure_basicsofalz_low.pdf

What is Dementia? from Weill Institute for Neurosciences, University of California, San Francisco https://memory.ucsf.edu/what-dementia

What is Dementia? Symptoms, Types and Diagnosis from the National Institute on Aging
https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis

What Happens to the Brain in Alzheimer's Disease? from National Institute on Aging
https://www.nia.nih.gov/health/what-happens-brain-alzheimers-disease

On this National Institute on Aging Website, you might want to click to watch the short video: How Alzheimer's Changes the Brain.

2. What happens to the "self?" If memories disappear, what's left of "self?" What are the issues about "right to die?"

Sense of self and dementia

Required Baire, Amee. (2019) "A reflection on the complexity of the self in severe dementia." Cogent Psychology 6:1. From the abstract: What is the impact of dementia on your sense of self? This is a complex question given the various definitions of the self and difficulties in measuring it, particularly in this population. It has been argued that the gradual decline in memory (in particular autobiographical recall) abilities that is associated with Alzheimer's Dementia coincides with a diminishing and eventual "loss" of self. These "memory centric" theories, however, fail to consider other aspects of self that can be relatively preserved in the face of dementia, such as the "interpersonal" and "moral" self.
Click to download the PDF here: https://www.cogentoa.com/article/10.1080/23311908.2019.1574055

Optional "Awakenings in Advanced Dementia Patients Hint at Untapped Brain Reserves," article by Lydia Denworth, published online in Scientific American on August 1, 2019. You can read the whole article here: https://www.scientificamerican.com/article/awakenings-in-advanced-dementia-patients-hint-at-untapped-brain-reserves/

Optional "The Self is Not Entirely Lost in Dementia" https://digest.bps.org.uk/2019/02/05/a-sense-of-self-can-survive-the-memory-loss-of-dementia-argue-review-authors/

Right to Die

Required American Medical Association decision "Physician-Assisted Suicide Once Again Divides AMA Members" You can read the story here: https://www.medpagetoday.com/meetingcoverage/ama/80384

Optional New York Times discussion of the right to die with a number of viewpoints represented: https://www.nytimes.com/roomfordebate/2014/10/06/expanding-the-right-to die?searchResultPosition=7

3. How do we as a society deal with the moral, ethical, legal, financial and other issues in this growing problem?

The proportion of the population with dementia will grow as the population ages. Family members may be unable/unwilling to care for those with dementia as we did in the days of "granny's gone a little funny". We don't have enough caregivers (paid or otherwise), we don't have enough medical personnel in this field, caregiving is expensive (no matter who pays, Medicare or other), and people with dementia may lose their legal right to die.

Required The Epidemiology and Impact of Dementia from the World Health Organization https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_epidemiology.pdf

Optional World Health Organization -- Dementia: A Public Health Priority. Jointly developed by WHO and Alzheimer's Disease International.
https://www.who.int/mental_health/publications/dementia_report_2012/en/

4. How can family, friends and paid caregivers best deal with dementia?

Required HelpGuide - Tips for Alzheimer's and Dementia Caregivers
https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm

Required Caregivers for Alzheimer's & Dementia Face Special Challenges; from Alzheimer's Association
https://www.alz.org/help-support/caregiving

A big issue is whether, and to what extent, one should be truthful with a person with dementia when, for instance, they ask where their (deceased) spouse is. As with so much in this field, the "right" answer is probably "it depends".

Required Memory House (scan it at least) Larisso MacFarquhar. "The Comforting Fictions of Dementia Care." New Yorker October 2018.
https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care

Optional "How to Talk with Someone with Alzheimer's" New York Times Magazine 12/31/2019
https://www.nytimes.com/2019/12/31/magazine/how-to-talk-to-someone-with-alzheimers.html?searchResultPosition=2

Optional Shih-Yin Lin, and Frances Marcus Lewis "Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future" Gerontologist 2015 April. https://academic.oup.com/gerontologist/article/55/2/237/656112 Click to bring up the PDF

5. There is now a test which can detect Alzheimer's in an individual. Would you want to know for yourself? Your spouse or partner?

Required Kolata, Gina. "Alzheimer's Tests Soon May Be Common. Should You Get One?" New York Times Dec. 20, 2019.
https://www.nytimes.com/2019/12/20/health/alzheimers-disease-diagnosis.html

Required Alzheimer's test. New Scientist. 4/10/2017 The article discusses a new saliva-based genetic test approved by the U.S. Food and Drug Administration (FDA) and marketed by the biotechnology company 23andMe, which can diagnose Alzheimer's disease in an individual.
https://www.newscientist.com/article/2127470-23andme-dna-test-for-alzheimers-risk-approved-for-sale-in-us/

6. What really works to help prevent dementia? How can we avoid getting sucked in by "snake oil"? Yes, you really can do something, and it's probably not crossword puzzles. Anecdotally, we almost never hear of someone dropping out of OLLI because of memory loss.

Required Weill Institute for Neurosciences, UCSF Healthy Aging
https://memory.ucsf.edu/symptoms/healthy-aging

Required Raichlen, D. A., & Alexander, G. E. (Jan. 2020). Why Your Brain Needs Exercise. Scientific American, 322(1), 26-31.
https://www.scientificamerican.com/article/why-your-brain-needs-exercise/

Required What Really Works to Preserve Brainpower? Consumer Reports Dec. 2019.
https://www.consumerreports.org/health-wellness/preserve-brain-power-what-really-works-memory-loss-alzheimers-dementia/

Optional Hope for millions with dementia breakthrough; Drug written off as failure 'CAN slow the progress' of Alzheimer's. Biogen. Daily Mail (London, England). Oct 23, 2019.
https://www.pressreader.com/uk/daily-mail/20191023/281552292639143

Optional DeKosky, Steven. "Supplements for brain health show no benefit-a neurologist explains a new study." Gale Opposing Viewpoints Online Collection, Gale, 2019.
https://theconversation.com/supplements-for-brain-health-show-no-benefit-a-neurologist-explains-a-new-study-118977

Optional Older People Need Geriatricians. Where Will They Come From? The medical profession has been troubled for years by a persistent shortage of doctors who treat the oldest and sickest patients.
https://www.nytimes.com/2020/01/03/health/geriatricians-shortage.html

Optional Anyone up for dementia-fighting, neuro-anti-inflammatory grape seed extracts?
https://www.peoplespharmacy.com/articles/can-you-prevent-dementia-with-grape-seed-extract?utm_source=The+People%27s+Pharmacy+Newsletter&utm_campaign=1959b684ac-MC_D_2020-01-02%26subscriber%3D1&utm_medium=email&utm_term=0_7300006d3c-1959b684ac-220816021&goal=0_7300006d3c-1959b684ac-220816021&mc_cid=1959b684ac&mc_eid=52eb1488a7

Optional Difference between correlation and causality
https://sciencing.com/difference-between-correlation-causality-8308909.html

For Alzheimer's in general, a good overall reference is the 2019 Alzheimer's Disease: Facts & Figures from the Alzheimer's Association
https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf

From Jan Jaffe and Topsy Smalley
Problems with the Webpage? Topsy's email is topsyneher@gmail.com
last rev. 1/12/2020