The Dartmouth Memory Handbook
Section 1: Getting Started
AGING AND MEMORY:
NORMAL AGING, SUBJECTIVE COGNITIVE DECLINE,
MILD COGNITIVE IMPAIRMENT,
AND ALZHEIMER’S DISEASE
Nadia Paré, Ph.D.
Geriatric Evaluation and Management Clinic, Omaha, NE
(revised July 2016)
People often wonder how and to what extent normal aging should affect memory. This seemingly simple question is a source of much controversy in the current scientific literature. The goal of this Chapter is to characterize memory functions in normal aging and provide insight into what constitutes abnormal memory loss suggesting that a neurodegenerative process is taking place. Special attention is also given to the role of cognitive concerns in otherwise healthy individuals.
Cognitive Changes and Normal Aging
Age is the single greatest risk factor for Alzheimer’s disease. However, this does not imply that changes in cognitive function with normal aging lie on a continuum, the end of which is Alzheimer’s disease or another form of dementia. The normal changes taking place in the brain as people age are quantitatively and qualitatively different from the changes taking place in the brain of patients suffering from Alzheimer’s disease. Therefore, while there is a loss of neurons (brain cells) in both, the amount of neuronal loss, the specific locations of neuronal depletion, and even the part of the cell that dies differ in normal aging and in Alzheimer’s disease.
As one ages, the capacity to manipulate information in one’s mind (for example, doing mental calculations), which is referred to as “working memory”, declines. A decline in the capacity to strategize, organize and classify information properly and efficiently also takes place. Therefore, in normal aging, there is a decline in “meta-memory”, or the ability to use strategies to help encode new information in our minds in an efficient manner, later facilitating recall. An example of such strategies is trying to remember the name of a new acquaintance by pairing it with a physical characteristic of that person, or trying to remember a list of errands by making a mnemonic out of the first letter of each item on the list. Changes in the capacity to use such strategies have an impact on the ability to remember new information and may imitate memory decline, although memory structures (the hippocampus and surrounding areas) remain intact.
Mild Cognitive Impairment
In some cases, memory changes cannot only be attributed to the processes described above. In these cases, an individual, his or her spouse, another family member, or a friend may start noticing repetition of the same information or questions, failure to recall recent conversations, events, or details of events, losing or misplacing everyday objects (keys, wallet, glasses, etc.), getting confused or turned around while driving, having difficulty keeping track of the current date or day of the week, having more difficulty following a storyline in a movie, a TV show, or a book, etc. These memory lapses are often accompanied by problems coming up with words and names. When individuals with such problems are tested in a clinical setting with objective memory tests, results may indicate memory impairments that are more severe than what would be expected for the person’s age and level of education. However, these memory impairments may not cause significant impairment in most daily routines. Daily activities that are more likely to be affected at this stage are usually high level and complex activities. A first example of this is money management, such as understanding complex financial paperwork, balancing a checkbook, and even judgment when making financial decisions. Another daily activity that could be affected at this stage is medication management; in fact, even when memory changes are mild, patients are more likely to forget to take a medication or to double-dose. Furthermore, patients and family members may report difficulty using complex electronics, doing work-related duties, and multitasking. However, because the ability to perform most activities of daily living is preserved at this stage, these individuals do not meet criteria for a dementia.
Cognitive changes that meet the criteria above (isolated changes in memory and in complex activities of daily living) have been termed “Mild Cognitive Impairment, amnestic type” or MCI (or aMCI). The amnestic type specification refers to the fact that only memory is impaired, without decline in other cognitive domains (for example, attention and concentration, language, or visuo-spatial skills). In the last 10 years, MCI has been widely documented as a prodromal stage to Alzheimer’s disease. Amnestic MCI has recently been renamed “MCI due to Alzheimer’s disease” to reflect the fact that Alzheimer’s disease is not a condition that arises spontaneously, without any warning signs; memory disorders are in fact sometimes noticed as long as 10 years prior to the clinical diagnosis of Alzheimer’s disease being made. New studies on biomarkers have demonstrated that Alzheimer’s pathology starts accumulating in the brain as long as 25 to 30 years prior to diagnosis. The cumulative risk of mild cognitive impairment progressing to dementia ranges between 30% and 50% over 5 years, depending on the criteria used in various studies.
Given the continuum between aMCI and Alzheimer’s disease, the types of memory impairments characteristic of aMCI are similar to those in Alzheimer’s disease. Memory for new information, such as recalling personal experiences, events, and conversations, is the first to be impaired. This type of memory is called “episodic memory”, or memory for episodes of one’s life. When one suffers from episodic memory impairment, the information does not get encoded in memory in the first place, and the memory trace is not present when the person tries to bring back the memory later on. The structure of the brain responsible for encoding new memory, called the hippocampus (more specifically the left hippocampus), is deficient because the markers of Alzheimer’s disease are taking place in these cells (the so-called plaques – made of beta-amyloid proteins – and tangles – made of tau protein – and ensuing loss of neurons).
Consequently, the individual cannot access the information he or she wants to recall because that information was not stored in the first place.
Other types of memory impairments happen later in progressive MCI or in the early stage of Alzheimer’s disease. One type affects semantic memory, which refers to recalling historical facts, grammar rules, vocabulary, and other forms of general knowledge. In addition, as with normal aging, certain impairments in working memory and in meta-memory are also found in MCI and Alzheimer’s disease.
On the other hand, procedural memory is a type of memory that is quite resistant to normal aging, MCI and Alzheimer’s disease. Procedural memory refers to the set of skills and abilities one learned through practice and repetition. Examples of procedural memory include remembering how to ride a bicycle, play a musical instrument, or play golf. Those abilities involve memory structures that are not impaired by normal aging, MCI and initially in Alzheimer’s disease, but that can be impaired in other conditions, such as Parkinson’s disease.
Because of the risk of conversion described above, once a diagnosis of MCI is established, it is important for the patient to be followed closely by a physician. Medical management of MCI may help slow down the progression to a dementia via different interventions. In fact, research now shows that when prescribed early in the disease process, acetylcholinesterase inhibitors (such as Aricept, or its generic donepezil, and Exelon) can increase the size of the hippocampus, reflecting generation of new cells in this region of the brain that is of primary importance in memory. In addition to prescribing a memory boosting drug, the treating physician may discontinue medications that have a negative impact on memory, specifically a class of medications called “anticholinergic medications”, which includes most of the over-the-counter sleep aids (such as Tylenol-PM, Benadryl, ZzzQuil, among others) and many medications used to treat urinary incontinence. The physician can also test the patient for conditions that may worsen memory, such as hypothyroidism, B12 deficiency, sleep apnea, and depression.
Regarding sleep apnea, studies have now documented that patients suffering from sleep apnea have smaller hippocampi but that patients that are 100% compliant with their CPAP grow new hippocampal cells. In one particular study, this increased hippocampal size has been associated with improved scores on neurocognitive testing in these patients suffering from obstructive sleep apnea.
While depression can cause memory loss and even mimic dementia, one should not systematically attribute cognitive decline to depression. In fact, depression is a common symptom in aMCI due both to one’s realization that they are declining cognitively, and to neurochemical and neuroanatomical changes taking place in regions of the brain that are linked to emotional regulation. That being said, treating depression may improve one’s cognition and functional status; the treating physician should remain aware for signs of cognitive decline once the mood issues have been addressed and stabilized.
Finally, close monitoring by a physician may help prevent some of the conditions that can contribute to cognitive decline and acute confusion, such as dehydration and poor caloric intake, poor medication management, falls, urinary tract infection, or other type of infections. This is especially important given that these can lead to delirium (or toxicmetabolic encephalopathy) and that 30% of patients suffering from delirium will fail to return to baseline and will continue to have a lower level of cognitive functioning, even after the acute episode of delirium has resolved.
Subjective Cognitive Decline
A new focus of research explores the value of subjective cognitive complaints as a preMCI phase. Subjective Cognitive Decline (SCD) is defined as perceived decline in memory and other cognitive abilities, relative to a previous level of performance in the absence of objective deficits on cognitive testing. Hence, SCD is thought to occur before cognitive impairment can be measured on formal neuropsychological testing, when individuals are still able to compensate for the disease process that is slowly taking place in their brain.
In 2014, an international work group published a set of criteria aimed at better defining SCD and the characteristics that increase the likelihood of preclinical AD in those individuals reporting it. These characteristics are: subjective decline in memory rather than in other domains of cognition (such as language or attention); onset of SCD within the last 5 years; age of onset of SCD≥ 60 years; worries associated with SCD; feeling of poorer performance than others of the same age group; confirmation of cognitive decline by an objective informant; presence of the APOE ε4 genotype (a gene that increases the likelihood of developing AD); and biomarker evidence for AD (see below).
Research on SCD suggests that subjective memory impairment, accompanied by worries about these changes, in addition to consistency of the SCD over time better predicts who is at greater risk for developing Alzheimer’s disease than the presence of perceived decline alone.
While the concept of SCD was initially introduced in the early 1980s, interest further increased about 10 years ago, as structural imaging techniques allowed for better quantification of neuroanatomical changes of the memory structures. Research has shown that a significant proportion of individuals noticing decline in their memory but without any measurable memory deficits on cognitive testing actually are showing both structural and functional changes in their brain that are similar to individuals with aMCI.
This finding raised interest in determining not only how early Alzheimer’s disease starts in the brain but also how early it starts to have clinical significance (i.e. impact daily functioning). These findings raise important questions regarding how early Alzheimer’s disease pathology actually begins, and at what point it begins to have clinical significance (i.e., impact daily functioning. This interest is partly driven by the desire to reduce the societal costs by detecting it the disease as soon as possible, allowing for earlier intervention.
Several research studies currently underway recruit individuals with cognitive concerns to test the effect of medications that could reverse the damages done by the Alzheimer’s process in the brain. In these studies, individuals undergo tests to determine the presence of biomarkers such as beta amyloid and tau tangles. This testing includes PET scans with specific contrast agents that bind to beta amyloid plaques and tau tangles in the brain, and lumbar puncture to look for abnormal levels of tau and beta amyloid in spinal fluid. These techniques permit detection of the disease in the pre-clinical stage, therefore allowing participants who are not yet showing clinical signs of the disease an option to participate in treatment studies.
It is imperative to take subjective concerns about memory functions seriously, especially if these concerns create significant stress in daily life and persist over time. Whenever there is a significant concern about memory, this should be addressed with the family physician and a referral for memory assessment should be requested. Even when testing does not reveal areas of impairment, the pattern of concerns expressed, and the possible presence of very early cognitive changes may reveal important clinical information. If anything, the assessment will establish a definitive baseline to which results could be compared in the future.
DEFINITIONS AND DIAGNOSTIC CRITERIA
Robert B. Santulli, M.D.
(Revised September 2016)
What Is a Memory Disorder?
A memory disorder is any condition that affects thinking, recall, or other cognitive functions in ways that are more significant than those changes simply associated of normal aging. At times, the boundary between normal aging and a memory disorder can be very difficult to discern.
Memory disorders include subjective cognitive decline (see p 11) and mild cognitive
impairment, a condition that primarily causes memory impairment, but no other significant functional difficulties, and is often (but not always) a precursor to Alzheimer’s disease (see p. 9). Memory disorders are also caused by a wide variety of medical, emotional, or mood difficulties that contribute to impairments in cognitive functioning. The most common forms of severe memory disorders are the dementias.
What is Dementia?
Dementia involves a significant loss of mental functioning usually associated with a decline in memory, thinking, behavior, and judgment. Although memory impairment is a primary symptom of most dementias, it may not be a significant component in every case, as for example in fronto-temporal dementia, at least early in the illness (see p. 97). In any dementia, the symptoms are sufficiently severe to interfere with daily functioning. As noted, dementia can be caused by many different illnesses, although only a small number are relatively common. Dementia is “acquired”, meaning that it has not been present since birth, but developed at some point later in life, usually after the age of 65.
Official Diagnostic Criteria for Dementia
There are two sets of diagnostic criteria that are commonly in use at the present time. These are: (1) The National Institute on Aging – Alzheimer’s Association criteria, which were first published in 2011; and (2) The American Psychiatric Association’s Diagnostic and Statistical Manual Version 5 (DSM 5), first published in 2013. Although the differing terminology can be somewhat confusing, there is a great deal of overlap in the two sets.
The NIA – Alzheimer’s Association Criteria
According to the NIA – Alzheimer’s Association criteria for “all cause” dementia, dementia is diagnosed when there are cognitive or behavioral (neuropsychiatric) symptoms that:
- Interfere with the ability to function at work or at usual activities; and
- Represent a decline from previous levels of functioning and performing;
- Are not explained by delirium or major psychiatric disorder.
Cognitive impairment is detected and diagnosed through a combination of history gathering from the patient and a knowledgeable informant and an objective cognitive assessment, either a brief mental status examination performed by the clinician during the initial evaluation, or a battery of neuropsychological testing. Neuropsychological testing should be performed when the routine history and bedside mental status examination cannot provide a confident diagnosis (see p. 37).
Furthermore, according to the NIA – Alzheimer’s Association criteria, the cognitive or behavioral impairment involves a minimum of two of the following domains:
a. Impaired Ability to Acquire and Remember New Information
Symptoms include: repetitive questions or conversations, misplacing personal belongings, forgetting events or appointments, or getting lost on a familiar route.
b. Impaired Reasoning and Handling of Complex Tasks, Poor Judgment
Symptoms include: poor understanding of safety risks, inability to manage
finances, poor decision-making ability, inability to plan complex or sequential
c. Impaired Visuospatial Abilities
Symptoms include: inability to recognize faces or common objects or to objects in direct view despite good acuity, inability to operate simple implements, or orient clothing to the body.
d. Impaired Language Functions (Speaking, Reading, Writing)
Symptoms include: difficulty thinking of common words while speaking, hesitations; speech, spelling, and writing errors.
e. Changes in Personality, Behavior, or Comportment
Symptoms include: uncharacteristic mood fluctuations such as agitation, impaired motivation, loss of initiative, apathy, loss of drive, social withdrawal, decreased interest in previous activities, loss of empathy, compulsive or obsessive behaviors, socially unacceptable behaviors.
The DSM 5 Criteria
In the DSM 5, dementia is now officially called “Major Neurocognitive Disorder” According to these DSM 5 criteria, the following are necessary for a diagnosis of Major Neurocognitive Disorder:
- 1. There must be a decline from a previous level of performance
- 2. Cognitive deficits are sufficient to interfere with independence
- 3. Assistance with at least one instrumental activity of daily living (IADL) is
- 4. There must be deficits in at least one of the following areas (although there are
typically deficits in several of them):
- i. Complex attention
- ii. Executive ability
- iii. Learning and memory
- iv. Language
- v. Visuospatial perception
- vi. Social cognition
- 1. Recognition of emotions
- 2. Behavioral regulation
Alzheimer’s Disease Is a Type of Dementia
In addition to the above criteria for dementia, or major neurocognitive disorder, there are specific criteria for Alzheimer’s disease, as well. The individual must first meet the criteria for dementia (or major neurocognitive disorder, in the DSM 5 criteria). Two additional diagnostic signs are also necessary in both sets of criteria:
(1) Insidious Onset; and
(2) Progressive Cognitive Decline
Alzheimer’s disease is the most common cause of dementia, by far; as noted above, Alzheimer’s is a type of dementia, not a condition that is different from dementia, as many people seem to believe.
Other Types of Dementia
Other common forms of dementia are: Vascular Dementia (see p. 75); Mixed Dementia (A mixture of Alzheimer’s disease and usually vascular dementia – see p.76); Dementia with Lewy Bodies (see p. 77); Fronto-temporal Dementia (see p. 97); and others.
While it is very important for clinicians to try to be precise about the exact diagnosis of a dementing illness, that is sometimes not possible, given our current knowledge and testing technology. From the caregivers’ perspective, whether the illness is Alzheimer’s disease or another form of dementia, many of the issues are quite similar.
Cognitive, Functional and Behavioral
Signs and Symptoms in
Alzheimer’s Disease and Other Dementias
Adapted from Santulli RB:
The Alzheimer’s Family: Helping Caregivers Cope
New York: WW Norton, 2011
Alzheimer’s specialists often talk about the “ABCs of Alzheimer’s”, referring to the areas of impairment that typically occur in the disease: Activities, Behavior, and Cognition. Of course, there is great variability from person to person, and no one individual will have all of the signs or symptoms that are discussed below. In addition, different individuals may show certain signs or symptoms prominently at one point in the illness, while others may appear at a later point, or not at all. For example, some people with Alzheimer’s disease may have a great deal of difficulty with language, from relatively early in the illness, while another individual may have fluent language until very late in the disease.
While individuals with different forms of dementia may show differences in the pattern of signs and symptoms, compared to those with Alzheimer’s disease, the impairments described below occur in nearly all types of dementia.
With these caveats, here is a description of some of the most common signs and symptoms that occur in dementia.
“Activities” refers to the so-called instrumental activities of daily living (IADLs) and the basic activities of daily living (ADLs).
Instrumental activities of daily living (IADLs) are higher-level functions, requiring a greater degree of cognitive acuity, and tend to become impaired earlier in the disease process. IADLs include such things as balancing a checkbook, paying bills, cooking, shopping, using electronics (microwave, cell phone, ATM, and the like), and driving. Of course, these don’t decline all at once. Nor is it the case that one day a person is capable of performing a task and the next day is completely unable to do so. IADLs, like everything else in Alzheimer’s disease and most other dementias, decline gradually, although the impairment in a particular activity—driving, for example—may reach a tipping point that alerts others to the problem. While behaviors are declining, the individual is often unaware of it and may be quite resistant to the notion that something is wrong. But when the tipping point is reached—an accident or getting lost while driving, or having the power turned off because of neglecting to pay the electric bill, for example—the individual is no longer able to hide his or her difficulties, and the family may become aware, for the first time, that there are functional problems, along with memory issues.
Driving is one of the more critical IADLs, as it involves vital issues of personal autonomy and independence, personal safety, and the safety of others. Please see p. 211 for more information.
Basic Activities of Daily Living (ADLs) include dressing, feeding oneself, using the
toilet, bathing and general hygiene, and walking. Usually these activities become impaired later in the disease process, after the IADLs are already significantly compromised. Dressing is frequently the first ADL to become impaired. Individuals with moderate Alzheimer’s disease may have difficulties with choosing correct clothing; they may, for example, put on summer shorts when it is snowing, put on two or three shirts (“layering”), or put on a bra outside the shirt. If clothing is laid out, the individual may be able to dress correctly, or may need some cueing (e.g., “Put on your socks before you put on your shoes,” or “Let me help you with those pants” which are going on backwards). As the disease progresses, the person may need assistance with tying shoes or buttoning buttons. Later, it may become necessary for the care partner to take over the task of dressing completely.
Problems with eating usually begin with the person becoming very messy at the table, and progress to no longer recognizing the correct utensil for a particular food (e.g., attempting to eat soup with a fork), spitting food out onto the plate or the floor, and using fingers to eat items that are not finger food (e.g., mashed potatoes).
Difficulty with toileting is, of course, a challenging issue for caregivers to handle. Males, in particular, may urinate in inappropriate locations, such as the garbage pail, the sink, a potted plant, or on the floor, because the toilet is no longer recognized or remembered.
Urinary incontinence often begins during the night, in bed, for both sexes, although this can be variable. Urinary continence tends to be lost before bowel continence, but bowel accidents may occur intermittently prior to losing continence entirely. Once people with dementia completely lose bowel continence, caregivers frequently feel they can no longer care for the individual at home; bowel incontinence is one of the chief precipitants of nursing home placement, along with behavioral problems.
Usually, the final ADL to become impaired is the ability to walk, unless of course there are physical reasons why this has already become difficult. Persons in the later stages of dementia may literally become too cognitively impaired to know how to put one foot safely in front of the other. They suffer frequent falls as a result, which of course can lead to serious injury. If a person who falls is living at home with an aged caregiver, it may not be possible for the caregiver to pick the person up, and 911 must be called.
Again, this scenario frequently leads to placement in a long-term care facility. Falls occur, of course, in nursing homes as well, and can lead to serious injury; but at least there are staff present who can get someone off the floor and immediately attend to any injuries that may have occurred.
It is estimated that at least 90% of people with Alzheimer’s will have one or more significant mood or behavioral problems during the course of the illness. For other dementias, the proportion of those with mood or behavioral problems may be similar or even greater. The most common behavioral symptoms in Alzheimer’s disease and other dementias are the following:
• Sleep disturbance
These are generally not separate psychiatric illnesses that happen to occur in persons with dementia but are an integral component or complication of the disease itself. This is why it is useful to think of most forms of dementia as neuropsychiatric illnesses, rather than simply medical or neurologic ones.
Behavioral problems are understandably one of the most significant causes of stress for caregivers. Dealing with behavioral problems can wear out the sturdiest caregiver. As noted above, behavioral difficulties – particularly agitation in its various forms – and bowel incontinence are the symptoms most likely to lead to nursing home placement. A more detailed discussion of mood and behavioral symptoms, and approaches to managing them, can be found beginning on page 119.
Cognition refers to memory and thinking. Cognitive symptoms are the hallmark of Alzheimer’s disease and most other dementias. The most frequent areas of impairment are:
• Memory impairment (amnesia)
• Language disturbance (aphasia)
• Difficulty carrying out motor tasks despite intact motor abilities (apraxia)
• The inability to recognize people or places that should be familiar (agnosia)
• Difficulties with planning, initiating, or organizing, and problems in social
judgment (executive dysfunction)
Memory Impairment (Amnesia)
This is the memory impairment that is most characteristic of Alzheimer’s disease and most other dementias. Recent, as opposed to long term, memory is most severely affected. Individuals – at least until much later in the disease – are generally able to register information, or immediately recall it. For example, a person with mild or moderate Alzheimer’s disease can usually repeat a few words or a simple phrase immediately afterward. But, particularly in Alzheimer’s disease, this content becomes subject to “rapid forgetting” and after a few minutes’ delay can no longer be recalled.
This impairment in recent memory is often one of the first symptoms noted by family members, and one of the most prominent early in the disease. It is the cause of the repetitive comments or questions that can be so stressful for care partners. The individual simply does not recall having recently made a particular comment or asked a question, and/or does not remember the answer. Repetitiveness appears to increase when the topic is one that causes anxiety. As the disease progresses, people forget more and more rapidly, and may be unable to retain information for more than seconds.
Events from long ago may be remembered until quite late in the disease, particularly if these events are especially meaningful, such as one’s wedding, graduation from college, and so forth. For some care partners, the fact that memories from years ago are recalled while events of the last few minutes or hours are forgotten seems counterintuitive, and the care partner may feel that the individual is simply not trying hard enough or is using selective memory—that is, choosing to remember certain things while forgetting the rest.
Occasionally people with Alzheimer’s who are defensive about memory impairments will say that they forget intentionally, remembering only the things they want or need to remember. This defensive type of comment is designed to help people feel more in control of this frightening process, but it is not really under their control, at all.
As the disease progresses, more and more aspects of the past are forgotten, to the point where a woman married for 50 years may forget her married name and only recall her maiden name, for example. Eventually that may be lost as well, along with many of the basic historical facts of one’s life. In this way, people with Alzheimer’s disease and other dementias may gradually lose their sense of personal identity.
Language Disturbance (Aphasia)
Aphasia in dementia usually refers to a gradual decline of language abilities as the disease progresses. Some degree of aphasia almost always occurs in Alzheimer’s disease, and with variable frequency in other forms of dementia. Aphasia may begin with occasional difficulty coming up with someone’s name. In fact, this is a common symptom of aging in otherwise normal persons at midlife and beyond. In Alzheimer’s disease, as well as in other dementias, however, the loss of names becomes more and more pronounced, and other proper nouns are frequently lost as well. As the condition further progresses, other common words may be lost or used incorrectly. The individual may refer to “that thing you sit on” instead of finding the word “chair” or will refer to wearing a “clock” or a “timer” rather than a wristwatch. Even though the language difficulties may be quite apparent, often a care partner who knows the individual very well will be able to discern what the person is attempting to say, although others who are less familiar with the individual may have more difficulty. After a period of time, language may become so disordered that it either conveys very little information (“empty speech”) or makes little, if any, sense. This is usually a source of enormous frustration for both the person with dementia and the care partner, although at times the person with the disease does not seem aware that he or she is not speaking coherently. Eventually, most afflicted individuals will have very little if any coherent speech, or speech may be limited to a few over- learned social pleasantries (e.g., “I’m fine; how are you?”) or to profanities, for example. Of course, as in all aspects of dementia, there is significant variability from person to person. Some remain fairly verbal until quite late in the disease, but others lose speech as an early manifestation of the illness.
Curiously, persons who have learned english as a second language will often revert to their native tongue, either completely or intermingled with English, while their language abilities are deteriorating. This can be true even in someone has spoken English exclusively for many decades.
Persons with language difficulties usually maintain a greater ability to understand language than to produce it. Occasionally, others will talk in front of someone who has dementia as if the person is not present, particularly if he or she cannot speak very coherently. It is important to remember that the individual may understand much more than he or she appears to, and feelings can easily be hurt. On the other hand, it is also important to keep in mind that the individual who has difficulty speaking may also have difficulty understanding what is being said, particularly when multiple people are talking at once, or talking rapidly (see the list of “Dos and Don’ts for Effective Communication”, p.189).
Difficulty Carrying Out Motor Tasks Despite Intact Motor Abilities (Apraxia)!!
Apraxia involves the loss of the ability to perform a particular movement or series of complex of movements, despite having the desire and the physical ability to do so. In simple terms, the brain has a problem telling the muscles how to carry out a certain action. Apraxia leads directly to impairments in ADLs and is a good example of how the various domains of impairment – the A, B, and C’s – are intertwined. The desire and intent to carry out the activity remain, but the cognitive ability – not the motor ability – to do so is lacking. Apraxia may be involved in some failures of IADLs as well, such as not being able to place a letter or a check in an envelope, seal the envelope, and put a stamp on it. As apraxia worsens, much that has been taken for granted becomes lost, and the individual needs increasing amounts of support with simple tasks. Care partners sometimes do not understand how this can be a function of dementia, particularly if, for example, yesterday or even earlier today the person could eat with his fork, but by dinner this skill seems to have been lost. As with so many of the impairments in Alzheimer’s disease and other dementias, there is great variability from person to person, from one day to the next, and even from one time of day to another.
The Inability to Recognize People or Places that Should be Familiar (Agnosia)
Agnosia causes the person with Alzheimer’s disease or other dementia to be unable to recognize people, places, or objects that should be familiar. This is not a visual problem per se; it has to do with recognition and understanding of what is seen. As agnosia worsens over time, as it usually does in Alzheimer’s disease, and many other dementias, individuals who should be familiar – neighbors, more distant relatives – are not recognized. Eventually, even immediate family members may not be recognized, perhaps starting with children who live out of town and visit less frequently. Ultimately even the spouse may not be recognized. Understandably, this is most upsetting for the spouse, but it is also upsetting for the person with Alzheimer’s, who may feel that there is a stranger in the house. As the process of agnosia is beginning, the individual may have some sense that someone is familiar but cannot be exactly identified. Alternatively, the nature of the relationship may become confused; a spouse may be seen as a mother or father, or an adult son as a brother, for example.
Occasionally, the individual may be certain that the spouse, for example, is not around but has been replaced by someone who appears quite similar, and may even have the same name. This seems to represent an incomplete loss of recognition of the individual, but can be very confusing to all concerned. At times the individual with Alzheimer’s may feel that the person who lives with him is not his spouse (indeed, he may no longer recall that he was ever married) but will feel that this person is a very good friend.
As these agnosias are developing, they can be transient, so that someone may not recognize the spouse at one moment but a few minutes later will be able to identify him or her correctly. It may be possible for an unrecognized spouse to merely leave the room for a few moments and return, and then be immediately recognized. At other times, an individual may not recognize his spouse visually but, when he or she speaks, will be able to use the combination of auditory and visual stimuli to make the correct identification.
Occasionally, a person with dementia will be unable to recognize his or her own image in a mirror or a photograph. When this happens, the person may believe that there is an intruder in his home. If this is the case, all of the mirrors in the house may need to be removed or covered, and it may be important to ensure that the curtains are drawn before dark, so that the image reflected in the glass is not seen as someone prowling around outside the home.
Agnosia occurs not only in regard to people but for places as well. Someone with dementia may lose the ability to recognize his or her own house, and insist on going home. This can lead to wandering, if the person goes out the door and down the street, looking for home. At times, these individuals seem to have in mind a home where they lived earlier in life, but that is not always the case. Occasionally, the individual will seem to partially recognize the home, feeling that this house looks very similar, but is not identical to the “real” home. Sometimes, persons with this sort of partial agnosia can be reoriented by gently pointing out that it is, indeed, their house, but perhaps it doesn’t look quite the same “in this light” or something of the sort. Most of the time, however, people with these mistaken beliefs due to agnosias cannot be persuaded through the force of logic, and trying to do so will only upset them.
Difficulties with Planning, Initiating, or Organizing, and Problems in Social
Judgment (Executive Dysfunction)
Executive function involves two broad areas. One has to do with the ability to initiate behaviors, to maintain them, and to terminate them when appropriate. This also includes the ability to know how to sequence steps to accomplish a task. The other broad area has to do with judgment: that is, knowing – and caring – what is appropriate behavior in a given social or interpersonal context. It also involves being able to make accurate judgments of people and situations to protect one’s own interests.
Individuals with deficits in executive function (or, as it is called, “executive dysfunction”) often have difficulty initiating behavior. This is directly related to apathy, a prominent feature of Alzheimer’s disease and other dementias (see p. 127 for more information about apathy).
Many people who are able, perhaps with help, to initiate an activity are unable to follow the necessary steps to its conclusion. This leads directly to impairments in functioning.
Being able to follow the correct sequence of steps to review a bill, write out a check properly, enter the check stub information correctly, address the envelope, put a stamp on it, and mail it is an example of a complex sequence of behaviors that requires executive ability, and one that is frequently impaired even in early Alzheimer’s disease or other dementia. Another breakdown of proper sequencing coming somewhat later in the disease would involve being unable to follow the correct steps to get dressed in the morning, even with all of the clothes laid out on the bed. This can lead to significant frustration on the part of the individual who is trying to get dressed and can also be quite stressful for the care partner when it becomes necessary to dress the person entirely.
The other critical area of executive functioning involves judgment, which requires a number of high-level cognitive abilities. It is often impaired in subtle or not-sosubtle ways early in the course of disease. Impairments in social and interpersonal judgment lead directly to a wide range of behavioral problems and conflicts with others, while impairments in the ability to correctly judge other people and situations can make someone vulnerable to exploitation (see p.209).
A number of the behavioral problems (see p.117) may occur because of lack of social appropriateness. Thus, someone who is unable to perform a given task might not simply feel some sense of frustration internally, but might become quite angry, possibly verbally abusive or aggressive, in response. Mace and Rabins, in The 36-Hour Day (2012), have called this type of response a “catastrophic reaction”; indeed, to judge from the individual’s behavior, it would seem that a catastrophe had occurred, when it may be no more than a minor matter. Such emotional storms seem to come from nowhere, or in response to even mild stressors. Individuals who react this way are unable to recognize and carry out the socially appropriate response to a given situation; and they may also be unable to stop their reaction due to their executive dysfunction.
Other examples of impaired social judgment include people who curse in settings where they might never have done that before, or make off-color or bigoted remarks in the presence of those who would be offended. Persons with more advanced disease in nursing homes may walk in the halls undressed, masturbate publicly, make sexually inappropriate comments to staff, or make unwanted sexual advances to staff or other residents.
It is sometimes impossible to tell if the individual does not recognize that a given behavior is offensive to others, or if he or she knows that others are offended, but lacks appropriate concern about that. This lack of awareness or concern for the feelings of others leads some to view the person with Alzheimer’s as self-centered, unkind, or even somewhat sociopathic. These labels certainly lead to a great deal of negative feelings toward the individual and do not help with managing the situation. It is important to understand that these behaviors, as distasteful as they may be, are symptoms of the illness rather than willful or morally corrupt behaviors. This awareness may help control the anger that is often generated, and lead to more appropriate ways of dealing with the situation.