Major neurocognitive disorder (commonly known as dementia) is the general label for any illness that produces serious, progressive, and often irreversible cognitive problems that compromise a person’s ability to function. (The framers of the current U.S. diagnostic manual, DSM-5, distinguish between a major and minor form of NCD; with the minor form, the person has difficulties with memory and thinking that, while significant, don’t prevent living independently.)

The devastating mental losses produce the total erosion of our personhood, the complete unraveling of the inner self. Younger people can also develop a neurocognitive disorder if they have a brain injury or an illness such as AIDS. However—as you will see later—these symptoms are typically produced by two specific conditions that typically strike in later life.

433

What is the cognitive decline really like? As you can poignantly see in the Experiencing the Lifespan box, in the earlier stages, people forget basic semantic information. They cannot recall core facts about their lives, such as the name of their town or how to get home. Impairments in executive functions are prominent. A conscientious person behaves erratically. An extrovert withdraws from the world.

As the symptoms progress, every aspect of thinking is affected. Abstract reasoning becomes difficult. People can no longer think through options when making decisions. Their language abilities are compromised. People cannot name common objects, such as a shoe or a bed. Judgment is gone. Older adults may act inappropriately—undressing in public, running out in traffic. They may wander aimlessly and behave recklessly, unaware that they are endangering their lives.

When these diseases reach their later stages, people may be unable to speak or move. Ultimately, they are bedridden, unable to remember how to eat or even swallow. At this point, complications such as infections or pneumonia often lead to death.

How long does this devastating decline path take? As you will see later, there is an in-between period between experiencing moderate memory problems and having full-blown symptoms. So it’s sometimes hard to clearly define when a major neurocognitive disorder actually begins. The deterioration progresses at different rates from person to person and varies depending on the specific disease. But in general, these illnesses deserve the label chronic disease. On average, the time from diagnosis until death is approximately 4 to 10 years (Rabins, 2011; Theis & Bleiler, 2011).

434

The good news is that these devastating mental impairments are typically illnesses of advanced old age. Among the young-old, the prevalence of these diseases is in the single digits. Over age 85, 1 in 3 people are destined to develop memory problems this severe (see Figure 14.9). While these statistics are alarming, notice the small silver lining here. Most older adults do survive sound in mind well into the old-old years.

What conditions produce these terrible symptoms? Although there is a host of rarer late life diseases, typically the older person will be diagnosed with Alzheimer’s disease or vascular dementia or some combination of those two illnesses.

Vascular neurocognitive disorder (also called vascular dementia) involves impairments in the vascular (blood) system, or network of arteries feeding the brain. Here, the person’s cognitive problems are caused by multiple small strokes.

Neurocognitive disorder due to Alzheimer’s disease (typically called Alzheimer’s disease) directly attacks the core structure of human consciousness, our neurons. With this illness, the neurons wither away and are replaced by strange wavy structures, called neurofibrillary tangles, and, as you can see in this photo, thick, bullet-shaped bodies of protein, called senile plaques.

Vascular problems—because they limit the brain’s blood supply—promote this neural loss (Strand and others, 2013; Vuorinen and others, 2013). So, when an 85 or 90-year-old person develops this condition, small strokes plus Alzheimer’s changes typically work together to produce the mental decline (Theis & Bleiler, 2011).

As you just saw, the number-one risk factor for developing any major neurocognitive disorder is being old-old. But there is a genetic marker that raises the chances of getting Alzheimer’s disease. Roughly 15 percent of the U.S. population possesses two copies of the APOE-4 marker. Being in this unlucky group roughly doubles the chance of a person’s getting ill during the young-old years (Blacker & Lovestone, 2006).

This breakthrough in the genetics of Alzheimer’s poses a dilemma. Children who have witnessed a parent develop this illness are (no surprise) terrified of the disease. Knowing they don’t have the genetic marker would ease their minds. But having the APOE-4 allele does not mean that a person will definitely get ill. It only shows that person is at higher risk. Would you decide to be tested? The answer, if you are like many people, might hinge on whether there are strategies to ward off the blow. Where are we in terms of preventing and treating Alzheimer’s disease?

The main front in the war to prevent Alzheimer’s centers on a protein called amyloid, a fatty substance that is the basic constituent of the senile plaques. According to much—but not all—current scientific thinking, the amyloid-laden plaques are central to producing the cortical decay (Theis & Bleiler, 2011). Efforts to dissolve the plaques in Alzheimer’s patients have not worked. The challenge is to stem this amyloid cascade before the damage has occurred and people show symptoms of the disease.

435

This means early diagnosis is crucial. But since scientists cannot look into the brain to see the individual neurons, as of this writing there is no definitive medical test showing the person is getting ill. The current way of diagnosing Alzheimer’s is to: (1) Look for a history of steady mental deterioration (rapid mental confusion signals a state called delirium which, in the elderly, may be due to anything from medication side effects to a heart attack); (2) rule out other physical and psychological causes; and (3) explore the person’s performance on neuropsychological tests.

Older adults diagnosed with mild cognitive impairment are centrally important in this research goal. These people show serious learning impairments but have yet to cross the line to Alzheimer’s disease. Not everyone with mild cognitive impairment makes the transition to Alzheimer’s. In fact some people—those open to experience, with cognitively enriching lifestyles—can improve (Sachdev and others, 2013). However, a good fraction (roughly 1 in 2 people) develops the illness within a few years (Theis & Bleiler, 2011).

The fact that the APOE-4 marker strongly predicts developing mild cognitive impairment may explain its link to full blown Alzheimer’s (Brainerd and others, 2013). Other clues that a person is on the road to this illness are gait changes, walking more slowly (Verghese and others, 2013; Hausdorff & Buchman, 2013), and having difficulties with complex IADL activities, such as finding your way in unfamiliar places (see Reppermund and others, 2013). Once we have clear “biomarkers” of incipient Alzheimer’s, scientists can work on developing medicines that might stop the disease in its tracks.

In the meantime, is there anything you and I can do? Adopting a heart-healthy diet is an excellent policy because, as I’ve been suggesting, cardiovascular problems are closely linked to cognitive loss. Although Alzheimer’s is an equal-opportunity illness, affecting everyone from scholars on down, being well educated offers people a cognitive reserve to buffer the decline (Roberson, 2013; Crowe and others, 2013). (Another reason to stay in college!) Because enriching maze running challenges stimulate neurogenesis in elderly rats (Speisman and others, 2013), it’s possible that providing mental exercise might help stave off some neural declines.

What clearly does improve cognitive function in middle-aged and elderly people is physical exercise (see Benedict and others, 2013). Interestingly, exercise may slow accelerated plaque formation in the very group most susceptible to Alzheimer’s—adults with the APOE marker (Head and others, 2011). So, if I had to vote, my number-one candidate for an anti-Alzheimer’s strategy would be physical exercise. Even if it doesn’t help our species construct new brain cells, at a minimum, going to the gym or walking will help with the vascular component of this illness (and, of course, help prevent the lower-body problems that are such a threat to independent living in later life).

FOR THE PERSON: USING EXTERNAL AIDS AND MAKING LIFE PREDICTABLE AND SAFE. Creative external aids such as using note cards can jog memory when people are in the earlier stages of Alzheimer’s. It helps to put shoes right next to socks or the coffee pot by the cup, and verbally remind the person what to do. A prime concern is safety. To prevent people from wandering off (or driving off!), double-lock or put buzzers on doors. Deactivate dangerous appliances, such as the stove, and put toxic substances, such as household cleaners, out of reach. Many nursing homes feature specialized “memory units,” with living environments designed to promote cognitive capacities and staff skilled in dealing with this disease. At every stage of the illness, the goals are to (1) protect people and keep them functioning as well as possible for as long as possible and (2) be caring and offer loving support.

436

So far, I have mainly discussed what others can do for these devastating impairments—as if the diseases had magically evaporated a human being. This assumption is wrong. The real profiles in courage are the people in the early stages of Alzheimer’s who get together to problem-solve and offer each other support. What does it feel like to be losing your inner self? We already got insights from Hal in the Experiencing the Lifespan box on page 433. Now let’s read what other people with early Alzheimer’s have to say:

Well, the first word that comes to my mouth is fear; becoming an infant, incontinence, not knowing who you are . . . I can go on and on, with those kinds of expressions.

(quoted in MacRae, 2008, p. 400)

Outsiders can compound this terror when they develop their own memory problem—centering on the label and forgetting the human being. A woman named Bea vividly described this situation when she was first told her diagnosis:

The last person who interviewed me was the neurologist. He was very indifferent and said it was just going to get worse. . . . Health-care professionals need to be compassionate. . . . There but for the grace of God go I.

(quoted in Snyder, 1999, pp. 17–18)

Can people use their late-life positivity skills to act efficaciously in the face of their disease? Read what a man named Ed had to say:

Life is a challenge . . . I am alive and I’m going to live life to the best I can. (If) people want to (say) oh what’s the point in living? Well, they’ve stopped living. . . . you only get one chance and this is it. Make the most of it.

(quoted in MacRae, 2008, p. 401)

Another man named Gorman went even further:

This early diagnosis has given me time to enjoy the life I have now. . . .: A beautiful sunset, a tree in the spring, the rising sun. Yes, having Alzheimer’s has changed my life; it has made me appreciate life more. I no longer take things for granted.

(quoted in MacRae, 2008, p. 401)

Can older adults with Alzheimer’s give us other insights into what it means to be wise? Judge for yourself, as you read what a loving dad named Booker said about the cycle of life:

I’m blessed to have a wonderful daughter. I sent her to . . . school and college and now she takes care of all of my business. . . . I’m in her hands. I’m in my baby phase now, so to speak. So sometimes I call her “my mumma.” . . . Yes, she’s my mumma now. [Booker smiled appreciatively.] . . . She’s my backbone. She’s such a blessing to me.

(quoted in Snyder, 1999, p. 103)

FOR THE CAREGIVER: COPING WITH LIFE TURNED UPSIDE DOWN. Imagine your beloved father or spouse has Alzheimer’s or another irreversible cognitive disorder. You know that the illness is permanent. You helplessly witness your loved one deteriorate. As the disease progresses to its middle stage, you must deal with a human being who has turned alien, where the tools used in normal encounters no longer apply. The person may be physically and verbally abusive, wake and wander in the night. When the 24/7 symptoms produce total role overload (Infurna, Gerstorf, & Zarit, 2013), you face the guilt of putting your loved one in a nursing home (Graneheim, Johansson, & Lindgren, 2014). Or, you decide to put your own life on hold for years and care for the person every minute of the day.

437

What strategies do people use to cope? One study with African American caregivers revealed that people rely on their faith for solace: “This is my mission from God” (Dilworth-Anderson, Boswell, & Cohen, 2007). Others turn to the Alzheimer’s caregiver support groups and Internet chat rooms for advice: “She seems to get worse during the night.” “What works for you?” “My husband hit me the other day, and I was devastated.” “Keep telling yourself it’s the illness. People with these illnesses can’t help how they act.”

Another key lies in relishing the precious moments together you have left:

(Tom and Jane, married for 63 years, who were being interviewed about the illness) sat close to one another on the couch . . . and shared a great deal of smiles and giggles … and at times it felt they were the only people in the room . . . Although the stories Jane told did not always make sense, her eyes lit up whenever a question was asked about her marriage to Tom . . . What cannot be easily captured on paper were the warm interactions . . . The investigators felt privileged to be part of such a rich process in which one couple had the opportunity to share the story of their relationship together.

(quoted in Daniels, Lamson, & Hodgson, 2007, p. 167)

Yes, dealing with a loved one with these disorders is embarrassing (Montoro-Rodriguez and others, 2009). It’s stressful and depressing, too. But this life experience offers its own redemption sequence. Caregivers often report having a heightened sense of mastery after confronting this stress (Infurna, Gerstorf, & Zarit, 2013). They get a firsthand lesson in what is really important in life. One woman summed up her journey of self-awareness like this: “What it’s done for me, Alzheimer’s, is . . . to give me a whole new life” (quoted in Peacock and others, 2010, p. 648). (Table 14.2 summarizes these messages in a list of caregiving tips.)

Until this point, I’ve been exploring how older people and their loved ones can personally take action to promote the best person–environment fit when old-age frailties strike. Now, let’s look at what society is doing to help.

438

Question 14.9

The illnesses are neurocognitive disorder due to Alzheimer’s disease, involving the deterioration of the neurons and their replacement with senile plaques and tangles, and vascular neurocognitive disorder, which involves small strokes. (Grandma—not infrequently—may have both illnesses.)

Question 14.10

a

Question 14.11

The main problem scientists face is diagnosing cognitive problems before they progress to the disease stage—so that we can develop treatments to ward off the illness. Tell the worried senators that they should start a fitness regimen now! While we don’t have definitive evidence, there are strong hints that exercise may help stave off Alzheimer’s disease.

Question 14.12

1. taking steps to keep her safe in her home.

2. encouraging her to attend an Alzheimer’s patient support group.

3. treating her like a human being.

4. doing all of the above.

d