The Dartmouth Memory Handbook

Section 8: Safety Considerations

Exploitation

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.
 
Getting Lost
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.
 
Unsafe Driving
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.
 
Incremental Steps
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, sonin-
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.