Far more research has been conducted on the relationship of cognitive impairment and inability to perform ADLs than on the relationship of cognitive impairment and the need for supervision to protect an individual from threats to health and safety, at least as these relationships exist in older people and people with dementia. To operationalizeand implement the CLASS Program benefit trigger on need for supervision, it will be necessary to define the concepts, “threats to health and safety,” “substantial supervision” and “substantial cognitive impairment” and clarify their interrelationships and the implications of those interrelationships with respect to need for long-term services and supports. This section reviews available research findings to support these objectives.
It is obvious, at least upon reflection, that cognitive impairment can result in threats to health and safety. Cognitive impairment can reduce an individual’s ability to recognize such threats. Some, and perhaps many, people with cognitive impairment and people with dementia are not aware or only partially aware of their cognitive impairment and therefore may not know that they can no longer recognize threats as well as they once could. Moreover, once they are in a dangerous situation, they often lack specific cognitive abilities, such as reasoning, judgment and ability to plan, initiate and sequence behaviors, thatwould allow them to reduce their risk and get needed help.
As noted earlier, many people with cognitive impairment also have physical impairments, and their physical impairments often exacerbate threats to their health and safety. Such physical impairments can result from the same disease or condition that causes the person’s cognitive impairment, for example, in the case of individuals with neurological conditions that cause cognitive impairment and also cause impairments in gait and balance that increase the individual’s risk of falls. Alternatively, the physical impairments can result from a disease or condition that is unrelated to the disease or condition that causes the individual’s cognitive impairment, for example, in the case of individuals with cognitive impairment who also have another disease and condition that causes serious vision impairment and therefore, increases their risk for accidents. Even vision and other impairments associated with normal aging can increase threats to health and safety for older people with cognitive impairment and dementia.
Threats to health and safety. Older people with cognitive impairment and people with dementia are at high risk for a wide array of threats to their health and safety as a result of wandering and other unsafe behaviors inside and outside the home. The following information about specific threats is intended to support the definition and clarification of the concept, “threats to health and safety,” as part of the overall operationalization and implementation of the CLASS Program benefit triggers.
Wandering. Probably the most frequently discussed threat to the health and safety of older people with cognitive impairment and people with dementia is wandering, getting lost and, as a result, becoming seriously injured or dying. No population-based data are available about the number or proportion of older people with cognitive impairment and dementia that wanders. Studies that were conducted in a sample of 193 older people with diagnosed Alzheimer’s disease and another sample of more than 15,000 veterans with moderate or severe cognitive impairment used medical and nursing home records to identify wandering incidents. The studies found that 20 to 25 percent of sample members had wandered at least once, and smaller proportions had wandered many times in the multi-year periods covered by the studies (Logsdon et al., 1998; Schonfeld et al., 2007). Findings from these and other studies show that wandering occurs in people at all levels of cognitive impairment but is more likely to occur in people with more versus less severe cognitive impairment; people who have had cognitive impairment and/or dementia for a longer time; people who also have depression, delusions, hallucinations, sleep disorders, and behavioral symptoms; and people who are taking antipsychotic medications (Kiely et al., 2000; Klein et al., 1999; Logsdon et al., 1998; Schonfeld et al., 2007)
It is sometimes said that most people with Alzheimer’s disease and other progressive dementias will wander and become lost at least once during the course of their disease (Rowe and Glover 2001). The studies described above may have missed wandering incidents, either because of the limited duration of the studies or because they relied on medical and nursing home records that probably did not include all wandering incidents. Thus, it is possible that wandering is more common than the study findings indicate. If many wandering incidents were missed, it is also possible that the study findings about the characteristics of older people with cognitive impairment and people with dementia who wander could differ in unknown but important ways from the true characteristics of all such people who wander.
An older person with cognitive impairment or dementia who wanders may have a purpose or destination in mind (Algaseet al., 1996; Schonfeld et al., 2007), but when the person is found to be missing, others may not be able to guess what that purpose or destination was and therefore, may not know where to look for the person. Once the person is lost, cognitive impairment, including reduced memory, judgment and ability to plan, initiate, and sequence behaviors, mean that the person may be unable to find his or her way home or get help.
Wandering and getting lost are risks for older people with cognitive impairment and people with dementia who are living in the community or in an assisted living facility or nursing home. One research team analyzed data from the Alzheimer’s Association Safe Return program on 531 individuals with cognitive impairment who wandered and got lost in a 13-month period beginning in 1997 (Rowe and Glover, 2001). The study found that two-thirds of the individuals were living with a relative, and the remaining individuals were living in the community, either alone (15%) or with a paid caregiver (2%), or in an assisted living facility or nursing home (17%). Some of the individuals were found in a neighbor’s yard, but others were found in the middle of intersections, walking along busy streets or highways, or in stores where their unusual behavior was noticed by store employees. Four of the individuals died, including three who died from prolonged exposure and one who was hit by a train. An additional 30 individuals experienced injuries, dehydration and the late effects of exposure to cold.
A retrospective review of newspaper accounts about 98 older people with dementia who died as a result of wandering and getting lost between 1998 and 2002, provides more information about the circumstances of their deaths (Rowe and Bennett, 2003). The most common cause of death in the 98 individuals was exposure (68%), followed by drowning (23%), falling (4%), being hit by a vehicle (3%), and asphyxiating in mud (1%). One-quarter of the individuals were found dead within 24 hours of leaving their home or residential care facility, but one third were not found for more than a week. Most were found in a secluded place in the woods. Those who died in urban areas were also found in secluded places, such as a junkyard, a vacant lot, or the top of a building. Many of the newspaper reports indicated that the person had gotten to a secluded spot and stayed there until he or she died. Some seemed to have further concealed themselves under brush or other materials.
The risk of wandering ends when the person is no longer able to walk or otherwise ambulate independently, for example with a wheel chair. Interestingly, one study of wandering in nursing homes operated by the Department of Veterans Affairs (VA) found that 25 percent of wanderers were wheel chair users (Schonfeld et al., 2007).
One of the most important aspects of wandering in the context of the CLASS Program benefits triggers is its unpredictability. Even in people who have wandered numerous times, it is not clear when they will wander again, thus creating a possible need for supervision over long periods of time to reduce threats to the person’s health and safety.
Accidents and injuries in the home. In addition to wandering, other threats to the health and safety of older people with cognitive impairment and people with dementia are caused by accidents, injuries, and illnesses that occur at home as a result of handling sharp objects, leaving the stove on, using water that is too hot, smoking or ingesting non-food, spoiled food or poisonous substances (Hurley et al. 2004; Oleske et al., 1995; Reed et al., 1990; Tierney et al., 2004). No data are available to determine how many older people with cognitive impairment and people with dementia experience accidents, injuries or illnesses as a result of these behaviors.
Falls. Most, but not all, studies of falls in older people and people with dementia have found that cognitive impairment is associated with increased risk (American Geriatrics Society, 2001; Ganz et al., 2007). More importantly, a study of fall-related injuries in a sample of 1,103 people age 72 and older found that cognitive impairment doubled the risk of serious injury associated with a fall (Tinetti et al., 1995). Another study of fall-related injuries in a sample of 157 individuals age 60 and older with diagnosed Alzheimer’s disease found that wandering was associated with a greater likelihood that individuals who fell would sustain a fracture (Buchner and Larson, 1987).
Fall-related injuries account for a substantial proportion of all injuries in older people with cognitive impairment and people with dementia. One study of injuries incurred by 281 individuals age 44 to 92 with diagnosed Alzheimer’s disease found, for example, that 44 percent of the injuries were caused by falls (Oleske et al., 1995).
Access to guns. Substantial proportions of older people with cognitive impairment and people with dementia have guns in their homes. One study of 106 individuals with symptoms of dementia who were seen at an outpatient memory disorders clinic in South Carolina found that 60 percent of the individuals had one or more guns in their homes, and the guns were loaded in 45 percent of these homes (Spangenberg et al, 1999). Likewise, a study conducted in 2002 by the Department of Veterans Affairs (VA) in a sample of 307 veterans with cognitive impairment found that 40 percent of the veterans had at least one gun at home, and 21 percent of these veterans had loaded guns (Veterans Health Administration, 2004). Most of the veterans with guns in their home had mild cognitive impairment, but 25 percent had moderate or severe cognitive impairment. No data are available to determine whether or how often the guns were used by the person with cognitive impairment or dementia or how many or what kinds of injuries may have resulted from this use. The presence of loaded guns in the homes of people with cognitive impairment and dementia would seem, however, to create a clear threat to their health and safety and the health and safety of others around them.
Driving. Many older people with cognitive impairment and people with dementia continue to drive. The 2002 VA study found that 44 percent of the 307 veterans with cognitive impairment were still driving (Veterans Health Administration, 2004). Most of those who were still driving had mild cognitive impairment, but 16 percent had moderate or severe cognitive impairment.
Most, but not all, studies of older drivers show that drivers with cognitive impairment and dementia are more likely than other older drivers to have vehicle crashes. A study of 3,238 drivers age 65 and older who agreed to a test of cognitive impairment at the time they were applying for renewal of their driver’s license found that those with cognitive impairment were significantly more likely than those without cognitive impairment to have a crash documented in their state driving record (Stuttset al., 1998). A review of 23 studies of older drivers found that those with diagnosed dementia performed more poorly on road tests and in driving simulations, and caregivers reports indicated that the drivers with diagnosed dementia were 2.2 to 8 times more likely to have had a crash, but only one of the three studies that used state driving records to document crashes found that drivers with diagnosed dementia had more crashes than other older drivers (Mon-Son-Hing et al., 2007).
Most older people with cognitive impairment and people with dementia stop driving as their cognitive impairment increases, but some do not (Carr et al., 2005; Foley et al. 2000; Perkinson et al., 2005). A study of 201 people with diagnosed Alzheimer’s disease found that 183 individuals (71%) had stopped driving, and 58 individuals (29%) had not (Carr et al., 2005). There were no significant differences in the cognitive test scores between the two groups. Most of the individuals in both groups had very mild cognitive impairment, as indicated by their score on the Clinical Dementia Rating (CDR) Scale, but almost one third (31%) of those who were still driving had a CDR score of 1.0 or higher. A CDR score of 1.0 indicates moderate dementia that is more marked for recent events and interferes with daily activity; possible geographic disorientation; and moderate difficulty with problem solving (Hughes et al., 1982; Morris, 1997). Higher CDR scores indicate higher levels of impairment. Another study of 643 men who were evaluated using the CDR as part of a larger study of heart disease found that 22 percent of the 98 men with a CDR score of 1.0 and one of the 23 men with a CDR score higher than 1.0 were still driving (Foley et al. 2000).
Serious medication errors. Many people of all ages fail to take their prescribed medications exactly as directed. Taking prescribed medications as directed means planning, initiating and sequencing the steps needed to take them at the right time, in the right amount and manner, e.g., with or without food, and remembering whether the medication was taken (Inselet al., 2006). Understandably, older people with cognitive impairment and people with dementia are less likely than other people to take their prescribed medications as directed (Hurley et al., 2004; Inselet al., 2006; Ownby 2006). Anecdotal evidence indicates that such people sometimes take their medications erratically, not at all, or too much at one time, and later may not remember what they have taken. One study of 95 people age 67 and older who were managing their own medications tracked the extent to which they adhered to the directions for one of their medications (Insel et al., 2006). The study found that 62 percent of the sample adhered to the medication directions at least 85 percent of the time, and the remaining 38 percent adhered to the medication directions anywhere from zero to 84 percent of the time. Those with cognitive impairment were significantly more likely than those without cognitive impairment to adhere to their medication directions.
No data are available on the number or proportion of older people with cognitive impairment or people with dementia who have serious negative health outcomes as a result of failure to take their medications as directed. One study of 139 people age 65 and older who were living alone in the community and experienced harm due to cognitive impairment, identified 3 individuals who required emergency medical care because of delirium and cardiac complications of failing to take prescribed medications as directed (Tierney et al. 2004).
Self- neglect. Cognitive impairment is the most widely recognized cause of self-neglect, which has been defined as failure to attend adequately to one’s own health, hygiene, nutrition or social needs (Abrams et al., 2002; Paveza et al., 2008). One study of 2,812 community dwelling people age 65 and older found that self-neglect was four times as likely in those with cognitive impairment as those without cognitive impairment (Abrams et al., 2002).
Self-neglect is the most common problem of adults referred to Adult Protective Services (APS) agencies in the U.S. (Heath et al., 2005; Lachs et al., 1997; Pavlik et al., 2001), and many studies of self-neglect in older people use samples of APS clients. Findings from these studies show that APS clients who are referred for self-neglect are much more likely than other APS clients to have cognitive impairment (Dyer et al., 2000; Heath et al., 2005). One study of 538 older APS clients who were referred for self-neglect found that 50 percent had cognitive impairment (Dyer et al., 2007)
Unawareness of deficit. Some, and perhaps many, older people with cognitive impairment and people with dementia are not aware of their cognitive impairment or related inability to perform activities that are essential for normal, independent functioning. Many researchers and clinicians say that this problem, generally referred to as “unawareness of deficit,” is much more common in people with cognitive impairment caused by certain diseases and conditions, e.g., Alzheimer’s disease and frontotemporal lobar degeneration, than by other diseases and conditions, e.g., vascular dementia (DeBettignieset al., 1990; Pia and Conway 2008; Wagner et al., 1997), but other researchers and clinicians are doubtful about some of these distinctions (see e.g., Aalten et al. 2005). No data are available to determine the number or proportion of older people with cognitive impairment, people with dementia, or people with any particular disease or condition that has unawareness of deficit.
Unawareness of deficit adds to the vulnerability of older people with cognitive impairment and people with dementia (Aaltenet al. 2005; Lehmann et al., 2010; Wagner et al., 1997). Even if these people are able to recognize a threat to their health or safety, they may not be aware that they lack the cognitive abilities needed to respond effectively. As a result of unawareness of deficit, they may be unwilling to modify behaviors, such as driving, even when they recognize the risks created by the behaviors (Aalten et al., 2005; Cotrell and Wild, 1999; Wagner et al., 1999). For the same reason, they may unwilling to accept needed help.
Researchers and clinicians have noted that there is wide variability in the extent of unawareness of deficit in older people with cognitive impairment and people with dementia (Aalten et al. 2005; Feher et al., 1991; Wagner et al., 1999). Individuals with unawareness of deficit also vary in the extent to which they are aware of deficits in particular cognitive and related abilities (DeBettignies et al., 1990; Seltzer et al., 1997; Vesterling et al., 1997; Zanettiet al., 1999). Thus, for example, some people are unaware of deficits in their thinking and memory but unaware of deficits in other cognitive abilities that are important for independent living. In contrast, other people are unaware of deficits in their thinking and memory but aware of deficits in other cognitive abilities that are important for independent living.
Unawareness of deficit is a complex condition that is not well understood. Some researchers and clinicians believe that it results entirely or almost entirely from neurological or other changes in the brain that are caused by the same disease or condition that is causing the person’s cognitive impairment (Clare et al., 2002). Other researchers and clinicians believe that unawareness of deficit is often due to a psychological defense mechanism, usually referred to as “denial,” through which the person protects himself or herself from thinking about and being upset by the reduction or loss of cognitive abilities. Most studies show that unawareness of deficit increases over time as a person’s cognitive impairment worsens (McDaniel et al., 1995; Vesterling et al., 1997; Wagner et al., 1997; Zanetti et al., 1999), thus suggesting that it may be caused primarily by the disease or condition that is causing the person’s cognitive impairment. Certainly, however, some older people with cognitive impairment and people with dementia also exhibit the psychological defense mechanism, denial.
Because unawareness of deficit increases vulnerability to threats to health and safety, it is a relevant factor in determining a person’s need for supervision. Increased understanding about which people with cognitive impairment are likely to have unawareness of deficit, when it is likely to occur and how it can be recognized would be useful for anyone who is trying to implement the CLASS Program benefit trigger on need for substantial supervision to protect an individual from threats to health and safety.
Defining “substantial cognitive impairment.” Taken out of the context of the CLASS Program benefit trigger, the term “substantial cognitive impairment,” could be defined in many different ways. Since the CLASS Program trigger based on need for supervision uses the term “substantial cognitive impairment,” instead of the term “severe cognitive impairment” that is used in the HIPAA and Federal Long-Term Care Insurance Program benefit triggers, one could assume that the legislative intent was to expand the definition to include people with moderate as well as severe cognitive impairment.
Considered within the context of the CLASS Program benefit trigger, the term, “substantial cognitive impairment,” seems to mean cognitive impairment at a level that results in threats to health and safety to which the individual is not able to respond effectively. Data are not available about the level of cognitive impairment at which many of the threats to health and safety described earlier in this report are likely to occur. The data on access to guns and driving indicate that these threats to health and safety are less likely to occur as the person’s cognitive impairment worsens. In contrast, the data on wandering indicate it is more likely to occur as the person’s cognitive impairment worsens. Unawareness of deficit, which makes the person less able to respond effectively to any threat to health and safety, is also more likely to occur as cognitive impairment worsens.
As described earlier, at least three widely cited dementia rating scales identify stages of cognitive decline or dementia and include both cognitive and noncognitive abilities. For each scale, the placement by stage of threats to health and safety and impairments in cognitive abilities that would allow individuals to respond effectively to any threat to health and safety is noted:
The Clinical Dementia Rating (CDR) scale (Morris et al., 1993) places “moderate memory loss” and “moderate difficulty in handling problems” in stage 1, labelled “mild dementia.” The CDR places “severe memory loss, new material rapidly lost,” “usually disoriented to time, often to place,” and “severely impaired in solving problems,” in stage 2, labelled “moderate dementia.” It places “severe memory loss; only fragments remain,” “oriented only to person,” and “unable to make judgments or solve problems” in stage 3, labelled “severe dementia.”
The Functional Assessment Staging (FAST) scale (Reisberg et al., 1985) places “difficulty in traveling to new locations” in stage 3, labeled “compatible with incipient dementia.” The FAST scale does not explicitly address other threats or related cognitive impairments.
The Global Deterioration Scale (GDS) (Reisberg et al., 1982) places “patient may have gotten lost when traveling to an unfamiliar location” and “denial begins to become manifest” in stage 3, labeled as “mild cognitive decline.” The GDS places deficits in memory and concentration and decreased ability to travel to new locations in stage 4, labeled “moderate cognitive decline,” and states that, “denial is a common defense mechanism in this stage.” It places “some disorientation to time and place” in stage 5, labeled “moderately severe cognitive decline. The GDS places “generally unaware of their surroundings,” “will require travel assistance but occasionally will display ability to travel to familiar locations” and loss of ability to “carry a thought long enough to determine a purposeful course of action,” in the next-to-last stage, stage 6, labeled “severe cognitive decline.”
In these dementia rating scales, most of threats to health and safety and most of the impairments in cognitive abilities that would allow individuals to respond effectively to threats are placed in the moderate or severe stage, but some are placed in earlier stages. The FAST scale and the GDS place difficulty traveling in new or unfamiliar locations in the mild or very mild stages of dementia and cognitive decline, and the CDR scale places moderate memory loss and moderate ability to handle problems in the mild stage of dementia. The GDS also places the first signs of denial in the mild stage.
As noted earlier, staging instruments like the CDR, the FAST, and the GDS, provide a general picture of the pattern of loss of cognitive and other abilities in progressive dementias, but some, and perhaps many, individuals do not fit neatly into the identified stages. Thus, the stage-specific placement of threats to health and safety and related cognitive abilities is informative, but one cannot assume a one-to-one correspondence for any particular individual between stage of cognitive decline or dementia and threats to health and safety to which the individual is not able to respond effectively.
Defining “substantial supervision.” Like “substantial cognitive impairment,” the concept, “substantial supervision,” could be defined in many different ways when considered generally. When considered in the context of the CLASS Program benefit trigger, “substantial supervision” seems to mean an amount of supervision that is sufficient to protect an individual with cognitive impairment or dementia from threats to his or her health and safety. Operationalizingand implementing the benefit trigger will require understanding about the level or amount of supervision that is needed to protect such an individual from threats to health and safety and ideas about how to measure it.
The “Supervision Rating Scale,” a 13-step scale that was developed to measure the amount of supervision received by individuals with traumatic brain injury (TBI) provides ideas that may be helpful in thinking about levels of supervision. The scale identifies the following broad levels of supervision, ranging from no supervision to the highest amount of supervision that may be needed: 1) independent; 2) overnight supervision; 3) part-time supervision; 4) full-time indirect supervision; and 5) full-time direct supervision (Boake, 1996). The 13 steps are defined in terms of many factors, including whether the supervision occurs in particular time periods (e.g., at night, during waking hours); whether the person goes out of the home alone; how long the person is left alone (e.g., always, in the day, for the amount of time the caregiver needs to work full-time, for less than that amount of time, for less than an hour); how often the caregiver checks on the person if they are not in the same room (e.g., once every 30 minutes or less often); whether the person’s door locked from the outside at night; and, at the highest level of supervision, whether the person is in the caregiver’s direct line of sight. The scale is designed to be completed by a clinician based on interviews with the person and an informant, usually the caregiver.
[Note: This contractor has not found any other supervision staging instruments that see useful in thinking about level of supervision for the CLASS program benefit trigger.]
With respect to amount of supervision, one study of 35 family members and other unpaid caregivers of individuals with diagnosed Alzheimer’s disease identified the amount of supervision actually received by the individual and the relationship of amount of supervision actually received and the caregivers’ perceptions about the individuals’ need for supervision, the severity of the individuals’ dementia, and the occurrence of hazardous behaviors (Reed et al., 1990). For the study, “supervision” was defined as having a family member or responsible person in close proximity to the individual, even if they are not in the same room, and it was measured by caregiver reports about the number of hours the individual was left alone. Caregivers’ perceptions about individuals’ need for supervision were measured by their responses to a question about whether the individual needed “watching to be safe,” and “hazardous behavior” was defined as an action by the person that the caregiver believed could lead to an accident if allowed to continue.
The study found that the amount of supervision actually received by the individuals (defined in terms of the number of hours they were left alone) was not significantly related to the severity of their dementia as measured by their CDR stage.
Individuals in CDR stage 0.5 (questionable dementia) were left alone an average of 5.1 hours a day (range: 0-12 hours).
Individuals in CDR stage 1.0 (mild dementia) were left alone an average of 2.9 hours a day (range: 0-8 hours).
Individuals in CDR stage 2.0 (moderate dementia) were left alone an average of 3.4 hours a day (range: 0-12 hours).
Individuals in CDR stage 3.0 (severe dementia) were left alone an average of 2 hours a day (range: 0-4 hours)
Although these findings suggest a trend toward more hours of supervision received (fewer hours left alone) for individuals with more severe dementia, the researchers note that at least one individual with moderate dementia was left alone for 12 hours a day, and at least one person with severe dementia was left alone for 4 hours a day (Reed et al., 1990).
In contrast to the lack of a statistically significant relationship between the amount of supervision received (number of hours left alone) and severity of dementia, there was a strong, significant relationship between caregivers’ perceptions about the individuals’ need for supervision and the severity of their dementia (Reed et al., 1990). Caregivers of most (87%) of the individuals in CDR stages 0.5 and 1.0 (questionable and mild dementia) said the individuals did not need watching to be safe; whereas caregivers of most (91%) of individuals in CDR stages 2.0 and 3.0 (moderate or severe dementia) said the individuals did need watching to be safe.
Interestingly, caregivers’ perceptions of the individuals’ need for supervision were not significantly related to the occurrence of hazardous behavior in the previous year (Reed et al., 1990). On the other hand, the amount of supervision the individuals actually received was significantly related to the occurrence of hazardous behaviors: among individuals with one or more incidents of hazardous behavior in the previous year, 57% were receiving constant supervision, compared with only 5% of those with no incidents of hazardous behavior.
The relationships among these factors are complex. The researchers note the wide array of hazardous behaviors among the individuals, the heterogeneity of the life situations of the individuals and their caregivers and, as a result, the large number of potentially confounding variables in the study (Reed et al., 1990). Nevertheless, they comment that the study findings fit with their clinical experiences. They note that people with dementia often get to the moderate stage before their families acknowledge that there is a significant problem, and cite the study finding that caregivers generally did not perceive individuals with mild dementia as needing “watching to be safe.” Likewise, the researchers note that, “Supervision is a natural response to perceived hazardous behaviors” and cite the study finding that most (57%) of the individuals with hazardous behaviors in the preceding year were receiving constant supervision, compared with only 5 percent of individuals with no hazardous behaviors in the preceding year.
Another study analyzed data on need for supervision and related factors from the Medicare Alzheimer’s Disease Demonstration (MADD), a federally funded demonstration project implemented in 8 states from 1989-1994 (Fox et al., 1999). The study sample included more than 8,000 older people with dementia and their family and other unpaid caregivers. The MADD findings are based on data about factors that are defined and measured somewhat differently than the factors analyzed in the study described above. In MADD, caregivers’ perceptions about individuals’ need for supervision were measured by their responses to a question about whether the individual needed “minimal supervision,” “daytime supervision,” or “round-the-clock supervision.” Also, caregivers were asked about the number of hours of unpaid care provided for the individual by the primary caregiver and any other unpaid caregivers, and that number is used in the analysis, instead of number of hours the individual was left alone, that was used as to measure the amount of supervision provided in the study described above. Lastly, MADD used an individual’s score on a brief mental status test, the Mini-Mental State Examination (MMSE), to measure severity of dementia, instead of the CDR score used in the study described above.
Using these somewhat different factors and ways of measuring them, the analysis of the MADD data found that caregivers’ perceptions about individuals’ need for supervision were significantly related to the number of hours of unpaid care provided for them (Fox et al., 1999). The data show that 25 percent of the caregivers said the individual needed “minimal supervision;” 19 percent said the individual needed “daytime supervision,” and 56 percent said the individual needed “round-the-clock supervision.” Individuals who were said to need “minimal supervision” received an average of 97 hours per week of unpaid care (including hours provided by the primary caregiver and any other unpaid caregivers); those who were said to need “daytime supervision” received an average of 129 hours of unpaid care per week; and those who were said to need “round-the-clock supervision” received an average of 176 hours of unpaid care.
The MADD data also show that caregivers’ perceptions about individuals’ need for supervision were strongly related to the severity of the individual’s cognitive impairment. Individuals with very mild cognitive impairment (MMSE scores above 23) were generally said to need “minimal supervision;” those with moderate to severe cognitive impairment (MMSE scores 13 to 23) were generally said to need “daytime supervision;” and those with very severe cognitive impairment (MMSE scores below 13) were said to need “round-the-clock supervision.” Average hours of unpaid care provided were also related to severity of cognitive impairment. Individuals with very mild cognitive impairment (MMSE scores above 23) were provided an average of 75 hours of unpaid care per week, compared with 94 hours of unpaid care for those with moderate to severe cognitive impairment (MMSE scores 13 to 23), and 120 hours per week for those with very severe cognitive impairment (MMSE scores below 13).
The concepts, terms and particularly the different ways of measuring them in the Supervision Rating Scale and the two studies described above are useful in thinking about how to operationalizeand implement the concept “substantial supervision” in the CLASS Program benefit trigger. With respect to measuring need for supervision, Reed et al (1990) comment that using the number of hours the individual is left alone as a measure of the amount of supervision the individual receives is not ideal because time spent with the caregiver may occur for other reasons than for supervision. The same caveat might apply to an even greater extent to using the number of hours of unpaid care provided for the individual as an indicator of need for supervision, as was done in the study by Fox et al. (1999).
In the Supervision Rating Scale and the studies by Reed et al. (1990) and Fox et al., 1999), it is assumed that “supervision” is provided in person; that is, the caregiver is physically present, at least, for example, in the same dwelling place, as the individual who needs supervision. Recently, there is increasing interest in and use of home monitoring technologies to observe older people with cognitive impairment and people with dementia in their homes and monitor their safety from a distance. Certainly the CLASS Program cash benefit will allow individuals and families to pay for home monitoring technologies. The question with respect to defining “substantial supervision” for the CLASS Program benefit trigger is whether use of such technologies should be considered an indicator that the individual either needs or is receiving supervision. In the context of the benefit trigger, “substantial supervision” is intended to protect the individual from threats to his or her health and safety. One might argue that home monitoring technologies do not protect the individual from such threats because no one can be present with the individual fast enough to avert the threat created, for example, by wandering and getting lost, leaving the stove on, using water that is too hot, or taking too little or too much of prescribed medications. Yet a recent report prepared for the Administration on Aging by O’Keeffe et al. (2010) provides numerous examples of technologies that monitor each of these behaviors and alert a caregiver or other emergency responder immediately, meaning that someone could be present with the individual very quickly, assuming that the monitoring technology is working and someone is paying attention to it. As such technologies are used more widely, and particularly as they become more reliable, it will be important to determine whether their use is evidence that an individual needs and/or is receiving “substantial supervision.”
Recommendations. The terms “substantial cognitive impairment” and “substantial supervision” should be defined in the context of the CLASS Program benefit trigger as opposed more generally. Defining the terms in this way will narrow the range of possible definitions and better reflect the intent of the legislative language.
Information about the kinds of threats to health and safety that are likely to affect older people with cognitive impairment and people with dementia should be conveyed to anyone who is responsible for implementing the CLASS Program benefit trigger. It should be emphasized that the risk to these individuals can come from their inability to recognize the threat, their inability to respond to the threat, or both, and that unawareness of deficit, that is, being unaware that they cannot recognize a threat, cannot respond to it, or both, is likely to increase their risk.
Information about the strong relationship between cognitive impairment and need for supervision and, at the same time, the lack of one-to-one correspondence between level of cognitive impairment or dementia and need for supervision in any particular individual should also be conveyed to anyone who is responsible for implementing the CLASS program benefit triggers.
Consideration should be given to the question about whether use of home monitoring technologies should be considered evidence that an individual either needs or is receiving supervision in the context of the CLASS Program benefit trigger.
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"appNc.pdf" (pdf, 622.02Kb)
"appNd.pdf" (pdf, 211.36Kb)
"appO.pdf" (pdf, 2.01Mb)
"appP.pdf" (pdf, 9.15Mb)
"appPa.pdf" (pdf, 233.71Kb)
"appPb.pdf" (pdf, 253Kb)
"appPc.pdf" (pdf, 546.97Kb)
"appPd.pdf" (pdf, 505.4Kb)
"appPe.pdf" (pdf, 462.21Kb)
"appQ.pdf" (pdf, 285.57Kb)