The Dartmouth Memory Handbook
Section 8: Safety Considerations
Adapted from Santulli RB:
The Alzheimer’s Family: Helping Caregivers Cope
New York: WW Norton, 2011
People with Alzheimer’s disease and other forms of dementia may be vulnerable to exploitation.
Common types of exploitation might, for example, involve hired caregiving help who ask to “borrow” money or say they need $100 to buy some items for the person at the grocery store, when all they are getting is a few staples. Other individuals find themselves giving money to every charity that sends them solicitations, some of which are certainly legitimate while others are not; or entering sweepstakes that promise huge prizes if only the person will buy certain magazine subscriptions. Unfortunately, signing up for one uncertain scheme or one dubious charity only ensures that much more junk mail will be coming soon. Persons who would have previously quickly discarded such solicitations may now spend a great deal of time considering the solicitation and responding to it because of the clever but nefarious sales techniques of the senders.
Many families find they simply need to make sure they get to the mailbox before the person with dementia, tossing out much of what arrives.
Now that increasing numbers of older individuals are computer literate (although such literacy usually diminishes with increasing dementia), there is a parallel concern about junk e-mails and the many scams that daily arrive in one’s e-mail inbox. Persons with mild dementia can spend many thousands of dollars in these pursuits. Some of this has to do with not remembering or keeping good track of what was previously purchased; and much of it has to do with not being able to exercise good judgment in the face of sales pressures. Unfortunately, there is no shortage of unscrupulous individuals who are aware of the judgment difficulties of many older individuals and are ready to prey upon them. One of the most important tasks of care partners of persons with even mild dementia is to set up safeguards to protect the person with diminished judgment from being exploited. It is important to realize that, even though the person with dementia had previously exercised excellent judgment, that ability can become significantly impaired even in the early stages of the illness.
DRIVING AND DEMENTIA
Adapted from Santulli RB:
The Alzheimer’s Family: Helping Caregivers Cope
New York: WW Norton, 2011
There is probably no area that causes more tension and disagreements between someone with dementia and their family than the issue of driving.
In our society, driving is a potent symbol of independence and freedom. Being “in the driver’s seat” means being in control, literally and figuratively. American society has been built around the automobile for the last several generations, at least. The burgeoning of suburban development beginning after the Second World War, the birth and growth of the shopping center, and the gradual decline of the central city as a place to live and work can all be seen as secondary to the automobile. Getting a driver’s license is an important rite of passage in adolescence, and getting one’s first car is a happy, proud moment that most everyone can clearly remember decades later.
Unfortunately, all of the emphasis on the automobile has caused significant problems as well; traffic jams, pollution, our overreliance on foreign fuel sources, and more than 30,000 motor vehicle fatalities annually, to name a few. It is very difficult, from a practical standpoint, to get along in many localities without being able to drive; except in the center of major cities, one simply needs to rely on the automobile to get most anywhere.
Most areas have limited public transportation, which is rarely as convenient as getting in one’s own car and driving to where you want to go.
These realities certainly contribute to the intense desire of people with Alzheimer’s disease and other forms of dementia to continue driving, often long past the point when it is wise or safe for them to do so. Certainly some people voluntarily give up driving when they develop cognitive problems, but they are very much in the minority. Most people with dementia are extremely poor at judging their driving ability, invariably overstating their current abilities. This is only partly due to the strong motivation to continue driving; it also has to do with the fact that the disease itself significantly impairs the capacity to make accurate assessments of one’s ability to perform a complex task such as driving.
There are two somewhat different (but related) concerns about driving: one is getting lost while driving alone; the other involves unsafe driving, including having or causing an accident. Thus, driving involves not only the safety of the afflicted individual but involves public safety, as well.
People with Alzheimer’s disease and other dementias often have impaired visuospatial abilities. Visuospatial ability permits one to understand visual representations and spatial relationships between objects. The parietal lobes of the brain play an important role in visuospatial ability. People with visuospatial problems may have difficulty finding their way from one place to another. In extreme cases, this can happen even within the house, so that the person with dementia may not be able to find the kitchen, or find their way back to the bedroom after using the toilet during the night. More commonly, and usually earlier in the illness, visuospatial problems can contribute to getting lost while driving. Routes that should be familiar now seem foreign to the afflicted person. Being able to follow driving directions from the GPS or from a map, or even from road signs, becomes difficult or impossible.
It is not uncommon for people with dementia to drive miles out of their way when they are lost, hoping to find where they are going. Adding to the visuospatial difficulties are poor problem – solving skills, such that even if someone becomes aware of being lost, he or she may not know how to deal with the problem in a sensible way (such as stopping to ask directions). The person may even forget where he or she was going, in the first place. In addition, when people with dementia realize that they have gotten lost while driving, they are likely to panic, and to drive more erratically as a result. This connects the first problem in driving with dementia – getting lost – with the second problem – unsafe driving. When a demented driver is frightened, panicked, angry, or merely very confused, the safety of his or her driving decreases markedly. Lanes are changed without signaling; left hand turns are made from the right lane; speed may be excessively slow or fast, and there is generally less attentiveness to the road and to other vehicles.
Even for people with dementia who may not get lost, the quality of driving may be significantly impaired. It has been shown that those with even mild Alzheimer’s disease are less attentive to street signs, will get too close to one side of a lane or the other, and will drift into the next lane unexpectedly. Visuospatial difficulties can cause an inability to judge how far the curb is from the wheels of the car, or how far other vehicles are on either side, in front or behind. Turn signals may be forgotten, and braking can be excessively sudden, or delayed, causing rear-end or front-end collisions, respectively.
Afflicted individuals may drive the wrong way on a one-way street, or around a rotary, or may press the gas pedal when they intended to press the brake. People with Alzheimer’s disease and other dementias are much less able to react quickly if a nearby car is driving unsafely, or if a dog or a small child should dart into the street.
These difficulties generally begin quite gradually, so that the person with the disease, and even the spouse, may not be aware of them until a significant problem develops. A minor accident, such as brushing a parked car or a road sign, can be dismissed or rationalized all too easily. The difficulty can be compounded when the person with dementia is married to someone who does not drive, and who therefore relies on her spouse (usually the non-driver is a woman) for transportation. Both members of the couple now have a strong motivation not to find fault with the person’s driving.
All too often, the problem with driving is recognized only after a serious event has occurred – either a frightening episode of getting lost, which may have required police intervention, or an accident. Even after such an event, the individual may be very reluctant to stop driving. This position is aided by significant denial, poor judgment, or simply not recalling the incident a few days later.
Getting Someone to Stop Driving
Occasionally, it is clear that someone who is driving should no longer be doing so. There have been accidents, episodes of getting lost, or the person no longer understands the meaning of a stop sign, for example. In such cases, if the family has not yet acted definitively to put an end to the person’s driving, they must do so immediately. Family members may feel intimidated by the person with dementia, and may be fearful of doing anything that will cause offense or anger. This often reflects the nature of the relationship to the person with dementia prior to the development of the disease. The individual who is now afflicted with disease may always have been the dominant one in the family, while spouse and children were submissive. In addition to confronting the individual with the necessity of driving discontinuation, it may be necessary to take the car keys, disable the car, or, if possible, completely remove it from view. Faced with this, people with Alzheimer’s disease or other type of dementia may even go so far as to attempt to purchase another car: that is how vitally important driving is, and how poorly people are able to judge their own abilities or respond to advice that is given. When this happens, it can be helpful to have a visit with the physician, who should tell the person in no uncertain terms that he or she may no longer drive.
It is also incumbent upon the physician to notify the state motor vehicle bureau immediately of the recommendation, and urge that the person’s license be suspended until repeat testing can be done. Some states require a written test before the road test will be given, and many persons with dementia will fail the written test even if they might have passed the road test. This is because passing a written test relies on recent memory, whereas the road test involves some elements of procedural memory that may remain sufficiently intact to help the demented person do well enough to pass the test.
Most state road examinations are not terribly challenging, and do not involve unexpected situations in which the driver needs to act quickly to avoid an accident. Thus, individuals who only have to pass a road test can sometimes do so when common sense would indicate that they should stop driving. It can sometimes be helpful to alert local police to the situation, and ask that they be especially watchful.
The Driving Intervention
Of course, the best solution is for the family to persuade the individual to give up driving voluntarily, hopefully before there are serious consequences. It may be necessary to convene the family for an “intervention” to address the problem. It is critical that all participants in the intervention be in agreement about what needs to be done. If there is any uncertainty or ambivalence, the intervention will likely fail. Thus, if nearly everyone in the family feels the person should not drive, but one family member feels that very limited driving with another person in the car is acceptable, the person with dementia will naturally agree with the more permissive family member, and won’t agree to what the majority are urging.
At times, incremental changes in driving, rather than a total cessation may be acceptable. Perhaps it is felt that the individual cannot drive alone, but that having a family member in the passenger seat is acceptable. This would most often apply when the problem has to do with getting lost rather than with unsafe driving. It is not possible for someone sitting in the passenger seat to change an unsafe driver into a safe one, however. Another incremental step may be that the person should not drive at night, or when there is snow on the road, or on a four – lane highway, or anywhere except a few blocks to town and back. While there really is no evidence that such restrictions reduce the risk of accidents, common sense would suggest that such measures might be appropriate under limited circumstances. However, knowing that most forms of dementia are progressive, and that driving skills can certainly change over a short period of time, it will be necessary to revisit the decision frequently. Regular reevaluation of driving safety needs to be part of any agreement with the family if any driving is to continue.
Determining Driving Safety
How does the family monitor the driving of the person who has dementia? Certainly they cannot rely on self-reports. Nor should they assume that everything is fine if there has not (yet) been an accident or an episode of getting lost. The only way to judge driving ability is to drive with someone, either in the same car or in another car following close behind. People with dementia may resent having their driving observed in this way, but it is essential for safety.
Unfortunately, there are no tests that the clinician can conduct in his or her office that can provide reliable information about the safety of someone’s driving. While tests of visuospatial abilities, such as clock drawing, may be correlated with how likely it is that the person with dementia will get lost while driving, the correlation is not terribly high, and performance on such a test is not predictive of overall driving safety.
The “Grandchild Test”
One way to help determine whether or not it is safe for someone who has dementia to continue to drive is the “grandchild test.” If the person in question has young grandchildren, the grandchild’s parent – that is, the afflicted person’s son, daughter, son-in-law, or daughter-in-law – should be asked if they would permit their young child to ride in the car with the grandparent driving. If the family member does not feel that the demented individual is a safe enough driver to permit the child to ride in the car with their grandparent driving, then the person with dementia should not be driving at all. While family members may not always be objective about a loved one’s driving ability, they usually will be firm (and conservative) when it comes to the safety of their own young children.
It is not enough for the family to get someone with dementia to agree to stop driving, as important as that may be. The family must also make it very clear that they will take over those tasks that involve driving which were previously done by person with dementia.
Family members need to arrange to drive the individual wherever he or she needs or wants to go, or make arrangements for others to provide transportation. The individual with dementia should never be put in the position of having to beg for a ride somewhere.
DEMENTIA AND THE RISK OF WANDERING
Adapted from: Santulli RB:
The Alzheimer’s Family: Helping Caregivers Cope
New York: WW Norton, 2011
(Updated September 2016)
Wandering refers to the tendency of some individuals with Alzheimer’s disease to leave the house and get lost. Sometimes when people wander in this way, they may have a particular goal in mind, although it may be a very confused one. Occasionally, they seem to be merely exploring, with no particular goal in mind but they are unable to find the way home, or forget where it is they started from, in the first place.
Wandering is a potentially fatal complication of Alzheimer’s disease and other dementias. Every year, many individuals with dementia wander, and substantial numbers perish, particularly in the colder months. Even wandering a few dozen yards into the woods, or down a little-used dirt road, can be fatal. Everyone who is able to walk is at risk for wandering, although it is impossible to predict if and when an episode of wandering will occur. Having no history of wandering is certainly no guarantee that it will never happen; every person who wanders for the first time has no history of wandering previously. Overall, it is estimated that more than 60% of people with Alzheimer’s disease will wander at some point. Someone who rarely goes out of the house and has no inclination to walk any more than absolutely necessary may be less likely to wander than someone who has always enjoyed being outside and likes to go for walks, but even sedentary individuals have certainly been known to wander and get lost.
Any individual who has a tendency to wander and get lost may not be safe living alone.
For safety, most individuals with dementia should have an identification bracelet from the Alzheimer’s Association or similar organization, so that if the person should wander and be found, the ID number and telephone number on the bracelet will provide the vital information that is needed to get the wanderer home safely. Such bracelets, of course, do require that the person be found, and a more worrisome situation is when someone wanders into a wooded or isolated area where there are no other people around to assist. Simple devices such as a latch hook placed high on the door out of the usual line of sight, and perhaps covered with a cloth, can be helpful to keep someone inside who may otherwise get up in the night and wander out of doors. It is critical that any locking devices be easily released, however, in case of fire.
Increasing numbers of devices are now available based on GPS technology that will help locate someone who has wandered away. This is an invaluable technological advance that has the potential to prevent many deaths, although it must be remembered that no technology is foolproof. Nevertheless, such a device may make it possible for someone who lives alone to remain at home longer or substantially delay nursing home placement.
Electronic monitoring devices raise privacy concerns for some; but obtaining and using such a device for the person with dementia can be a life-saving investment.
PHYSICAL AND EMOTIONAL NEGLECT AND ABUSE
Adapted from: Blandin K and Santulli RB:
The Emotional Journey of the Alzheimer’s Family
Lebanon, NH: University Press of New England, 2015
Physical Neglect and Abuse
Physical neglect occurs when the person with dementia does not receive adequate attention to his or her needs. Examples of physical neglect include not providing adequate amounts of food, or not insuring that the afflicted person is able to consume it.
Neglect of hygiene is a type of physical neglect can occur when the person needs, but does not receive, assistance with bathing, or when the result of incontinence is not addressed promptly or adequately. Physical neglect can also be more subtle, such as not assisting a mobility-impaired individual to move from one floor or room of the house to another (when that is feasible, of course), or neglecting to take the person outside regularly, when that would be appropriate and welcome.
Ignoring complaints of discomfort or other somatic symptoms is another example of physical neglect. Also, ignoring significant pain or other signs of illness. Not providing assistance to get to the bathroom when requested, or not offering a drink of water when the person seems thirsty would also be examples of physical neglect. Another type of mistreatment is rushing or otherwise roughly handling the person while transferring or otherwise physically assisting him or her.
In situations such as these, the line between physical neglect and physical abuse is an indistinct one. Intent to cause harm certainly qualifies as physical abuse, but in some situations it may be difficult to determine if intent is present, or if there is merely physical neglect. Striking or kicking the person with the disease, twisting his or her limbs or grabbing with a force that is painful are all clear examples of physical abuse. These acts are considered physically abusive even when they are done in response to the afflicted person’s being aggressive, or when the care partner simply loses his temper and then is regretful and very apologetic immediately afterward, insisting that he did not “really” mean to hurt the person. Physical abuse also includes carelessness and mishandling the person, even if there is no conscious intent to cause harm. Whether acts of mistreatment are viewed as physical neglect or physical abuse may be open to interpretation, but the exact nomenclature is less important than recognizing the immediate seriousness of the situation, and the need to act quickly and decisively in order to protect the vulnerable person with Alzheimer’s or other form of dementia.
Emotional Neglect and Abuse
Perhaps more common, and more insidious, than physical neglect is emotional neglect.
Emotional neglect occurs when the care partner pays insufficient attention to the afflicted person’s emotional needs. For example, the person with dementia may indicate a desire for company and conversation, directly or indirectly, but the care partner chooses to pursue a different activity in another room, separate from the person with the disease.
Of course, this does not mean that unless every emotional need of the person with dementia is immediately met, every time a need is expressed, that the care partner is guilty of emotional neglect. It is clearly a matter of judgment and balance. One must take into account, however, that the person with the disease may have a limited ability to understand that the care partner is not able to devote all of his or her time and attention to the needs of the person with dementia, and so it may be necessary for the care partner to explain why he or she is unable to be available at this particular moment.
As with physical neglect and abuse, the border between emotional neglect and emotional abuse can be a very indistinct one. Sarcasm, for example, often expresses thinly veiled hostility. The care partner may feel that, since his conscious intent is to be humorous, the hostility behind the remark is acceptable, or even undetectable by the afflicted individual. Persons with Alzheimer’s may have some difficulty understanding the meaning of a particular sarcastic comment, but will have much less difficulty feeling the underlying hostility. Overtly critical remarks toward the person with Alzheimer’s (e.g., “you’ve made a terrible mess on the table with your eating; now I have to clean it up”) are emotionally abusive since the intent is to cause guilt or some other form of emotional distress. The care partner may feel that such remarks may help the person with the disease be more attentive to neatness while he or she eats, but even if that occurs for a short while, the hurt caused by such an insult does not justify the comment.
While people with Alzheimer’s may have a very poor memory for events that have occurred in the recent past, this does not mean that the care partner’s insults are acceptable since they will soon be forgotten. Painful memories are often remembered longer than other events, and even if the content of the comments are forgotten, the feeling of having been criticized or insulted remains and further deteriorates the already very fragile self-esteem of the person with the disease.
Obviously, angrily yelling at the afflicted individual is emotionally abusive. Once again, judgment is needed, since it is a rare care partner, indeed, who has never lost his temper with the person with dementia, spoken more harshly than necessary, or said things that were hurtful and later deeply regretted. While one might wish that such events would never occur, it is almost inevitable, given the enormous stresses that most care partners feel. Clearly, however, if hurtful remarks are frequent, the situation is abusive and needs to be addressed urgently.
Understanding the Reasons for Neglect and Abuse
Why do family care partners act at times in ways that are neglectful, or even abusive?
Must one conclude that those family care partners do not care deeply for the person with the disease? Are they sadistic, cruel psychopaths who enjoy inflicting pain on the defenseless? Are they seeking revenge for some real or imagined mistreatment by the person earlier in life? While sometimes it is necessary to draw such unsettling conclusions, most of the time the situation is quite different. The family care partner who becomes neglectful or abusive is usually a loving relative who is himself the victim of extreme stress, and has lost control of his own impulses or his ability to make good judgments and behave appropriately in a very stressful situation. Most of the time, family care partners who have been neglectful or abusive feel deeply ashamed and guilty about their behaviors. They need immediate help in managing the situation, and themselves.
Financial Exploitation and Abuse
At times, unscrupulous individuals will seize the opportunity to enrich themselves at the expense of someone who is defenseless by virtue of his or her cognitive disorder.
Unfortunately, sometimes the perpetrator is a member of the family. Family members who feel burdened by caring for a loved one with dementia will sometimes take advantage of him or her financially, neglecting to return the change when given money to go to the grocery store, or writing checks to themselves from the disease victim’s account when they are paying the monthly bills. Family members who do this justify such stealing by viewing it as “payment” for the services being offered, or feel that the person with the disease doesn’t really need the money, anyway. At other times, persons with Alzheimer’s disease are exploited by strangers who call on the telephone, offering magazine subscriptions, insurance plans, financial services, and the like. It is an important responsibility of the family care partner to protect the afflicted person from such financial exploitation, and certainly not to be the perpetrator of such exploitation, even when it involves a very small amount of money.