In older people, cognitive impairment of sufficient severity to result in inability to perform ADLs and other self-care activities is most often caused by dementia. The term, dementia, refers to a syndrome of decline in memory and at least one other cognitive ability that is severe enough to interfere with social or occupational functioning (APA, 2000). The requirement for decline distinguishes dementia from life-long mental retardation, although a person with mental retardation can develop dementia if his or her cognitive abilities decline from a previous level. The requirement for decline also means that a person with high previous intelligence can have dementia if his or her cognitive abilities decline to average levels, and this decline interferes with social or occupational functioning.
Many different diseases and conditions can cause dementia. Box 2 lists causes of irreversible dementia, followed by causes of potentially reversible dementia. Alzheimer’s disease is said to be the most common cause of irreversible dementia in older people, but recent research shows that many older people who have the brain pathology that defines Alzheimer’s disease also have brain pathology that defines other diseases and conditions that cause irreversible dementia, including brain pathology that defines vascular dementia and Lewy body disease (OldeRikkert et al., 2006; Schneider et al., 2007). Thus, “mixed dementia” may be more common than dementia caused by any single disease or conditions.
|Box 2: Causes of Nonreversible and Potentially Reversible Dementia|
|Causes of nonreversible dementia
Frontotemporal lobar degeneration (including Pick’s disease)
Progressive supranuclear palsy
Lewy body disease
Amyotrophic lateral sclerosis (ALS)
Wilson’s disease (if not treated early enough)
Occlusive cerebrovascular disease
Anoxia secondary to cardiac arrest, cardiac failure of carbon monoxide intoxication
Acquired immunodeficiency syndrome
Primary AIDs encephalopathy
Progressive multifocal leukoencephalopathy
Causes of potentially reversible dementia
|Causes of potentially reversible dementia (cont.)
Heavy metals (lead, manganese, mercury, arsenic)
Organic poisons, including solvents and insecticides
Bacterial meningitis and encephalitis
Parasitic meningitis and encephalitis
Fungal meningitis and encephalitis, cryptococcal meningitis
Viral meningitis and encephalitis
Neurosyphilis: meningovascular, tabes dorsalis, general paresis
Central nervous system vasculitis, temporal arteritis
Disseminated lupus erythematosus
Cardiac medications, digitalis and derivatives
Drugs with anticholinergic effects
Thiamine deficiency (Wernicke’s encephalopathy and Wernicke-Korsakoff syndrome)
Vitamin B12 deficiency (pernicious anemia)
Vitamin B6 deficiency (pellagra)
Source for Box 2: Costa et al., AHCPR, 1996.
[Note: if a list like this were going to be used publicly, it should be updated with newer terms for some conditions. It could also be shortened.]
Impact of Cognitive Impairment and Dementia on Ability to Perform ADLs. Studies published over the past 20 years show that cognitive impairment in older people is associated with reduced ability to perform ADLs at any point in time (Fultz et al., 2003; Gill et al., 1995; Li and Conwell 2009; Mulrow et al., 1994; Reed et al., 1989; Smith et al., 2010). More important than this finding, however, are findings from longitudinal studies showing that cognitive impairment in older people at one point in time is associated with reduced ability to perform ADLs at a later time (Gill et al., 1996; Gill et al., 2007; Jaggeret al., 2007; McGuire et al., 2006; Moody-Ayers et al., 2005; Moritz et al., 1995; Spiers et al., 2005; Wang et al., 2002). Specific findings from two of these studies are as follows:
A study of 1,103 people age 72 and older who were able to perform all ADLs independently at baseline found that those who had cognitive impairment were 2.4 times as likely as those with no cognitive impairment to become unable to perform at least one ADL over the next year and 2.3 times as likely to become unable to perform at least one ADL over the next 3 years (Gill et al., 1996).
A study of 5,671 people age 70 and older found that blacks age 70-79 were 2 times as likely as whites in that age group to decline in their ability to perform ADLs over a 2-year period, but the difference was entirely accounted for by differences between the two groups in baseline cognitive impairment (Moody-Ayers et al., 2005). Blacks age 80 and older were not more likely than whites in that age group to decline in their ability to perform ADLs in the two years after baseline assessment, but when cognitive impairment was accounted for, blacks age 80 and older were significantly less likely than whites in that age group to decline in their ability to perform ADLs over the 2-year period.
At least four studies have found that older people with cognitive impairment are also less likely than older people with no cognitive impairment to recover their ability to perform ADLs independently after an illness or hospitalization (Gill et al., 1997; Gill et al., 2009; Givens et al., 2008; Sands et al. 2003). Sands et al. (2003) found that in a sample of 2,557 people age 70 and older who were hospitalized, those with cognitive impairment before the hospitalization were much less likely than those with no cognitive impairment to recover their preadmission ability to perform ADLs. Among those who were able to perform all ADLs independently before their hospitalization, 57 percent of those with moderate to severe cognitive impairment recovered their preadmission ability to perform ADLs by 90 days after discharge, compared with 72 percent of those with mild cognitive impairment and 86 percent of those with no cognitive impairment. Likewise, among those who were unable to perform at least one ADL independently before the hospitalization, only 35 percent of those with moderate to severe cognitive impairment recovered their preadmission ability to perform ADLs by 90 days after discharge, compared with 62 percent of those with mild cognitive impairment and 73 percent of those with no cognitive impairment.
Still other studies show that older people whose cognitive abilities decline faster are, on average, more likely than those whose cognitive abilities decline more slowly to develop new inability to perform ADLs (Schmidler et al, 1998; Yaffe et al., 2010).
As one would expect, people with diagnosed dementia are more likely than people without dementia to have reduced ability to perform ADLs at any point in time, to decline in their ability to perform ADLs over time, and to be unable to recover their ability to perform ADLs after an illness or hospitalization (Aguero-Torres et al., 1998; Mulrow et al. 2004; Penrod et al. 2008; Wolff et al. 2005). In a sample of 4,968 people age 65 and older, Wolff et al (2005) found that those with newly diagnosed dementia were 14 times as likely as those without diagnosed dementia to have new inability to perform ADLs independently after one year, even after controlling for age, gender, education, and other chronic and newly diagnosed conditions. Those with diagnosed dementia were 6 times and 7 times as likely to have new inability to perform ADLs after 2 years and 3 years, respectively. Likewise, in a sample of 1,745 people age 65 and older, Aguero-Torres et al. (1998) found that after 3 years, those with diagnosed dementia were 25 times as likely as those without diagnosed dementia to have new inability to perform ADLs. Lastly, in a sample of 240 people with diagnosed Alzheimer’s disease, Freels et al (1992) found those who also had behavioral symptoms, such as unsafe wandering and aggressiveness, were 8 times as likely as those who did not have behavioral symptoms to have difficulty performing ADLs.
Relationship of Ability to Perform ADLs and IADLs. Many studies of ability to perform ADLs in older people and people with dementia also address ability to perform IADLs. Some researchers have suggested that IADLs and ADLs constitute a hierarchy of functional abilities and that they can be ordered from abilities that are likely to be lost first to abilities that are likely to be lost last, as an individual’s functioning worsens (see, e.g., Kempenand Suurmeijer, 1990; Spector1987). In proposed hierarchies based on this concept, IADLs, such as using the telephone, shopping, food preparation, housekeeping, managing medications and managing money, are usually listed first and are expected to be lost first. The IADLs are followed by ADLs, which are expected to be lost last. The most commonly listed ADLs are those described by Katz et al. (1963), and they are usually listed in the following order, from the ADL likely to be lost first to the ADL likely to be lost last: continence, dressing, bathing, transferring, toileting, and feeding (or eating).
Some researchers who have studied ability to perform ADLs and IADLs in older people have shown that ability to perform two IADLs, using the telephone and managing money, and one ADL, eating, is strongly associated with cognitive ability (Fitzgerald et al., 1993; Wolinskyand Johnson, 1991.) The researchers refer to these functions as “advanced ADLs,” and others sometimes refer to the two IADLs as “cognitive IADLs.”
One study of 5,874 people age 65 and older found that the pattern of loss of ability to perform ADLs and IADLs in people with cognitive impairment did not match the usually cited hierarchies in which IADLs are lost before ADLs (Njegovan et al., 2001). The study found that inability to perform the ADL, bathing, occurred much earlier (that is, in people with less severe cognitive impairment) than would be expected on the basis of the usually cited hierarchies and before inability to perform IADLs such as using the telephone, managing money, and managing medications. Inability to perform the ADL, toileting, also occurred earlier than inability to perform the same three IADLs.3 These findings suggest that inability to perform certain IADLs indicates more severe cognitive impairment than inability to perform certain ADLs, including two of the ADLs listed in the CLASS Program benefit trigger.
Inability to Perform ADLs in Cognitive and Dementia Rating Scales. At least three widely cited dementia rating scales identify stages of cognitive decline or dementia and include both cognitive and noncognitive abilities. These three scales are described very briefly below, and for each scale, the placement by stage of inability to perform the ADLs listed in the CLASS Program benefit trigger is noted:
The Clinical Dementia Rating (CDR) scale (Morris et al., 1993) identifies five stages of dementia: 1) none; 2) questionable dementia; 3) mild dementia; 4) moderate dementia; and 5) severe dementia. The CDR places need for assistance with the ADL, dressing, in stage 2, “moderate dementia,” and the ADL, incontinence, in stage 3, “severe dementia.” The CDR scale does not name the other four ADLs in the CLASS Program benefit trigger but states that the need for “much help with personal care” occurs in stage 3, “severe dementia.”
The Functional Assessment Staging (FAST) scale (Reisberg et al., 1985) identifies seven stages of dementia of the Alzheimer’s type by diagnostic levels: 1) normal adult; 2) normal aged adult; 3) compatible with incipient dementia; 4) mild dementia; 5) moderate dementia; 6) moderately severe dementia; and 7) severe dementia.4 The FAST places the need for assistance with the ADLs, dressing, bathing, toileting, and incontinence, in stage 6, “moderately severe dementia.” The FAST scale does not mention the ADLs, transferring and eating.
The Global Deterioration Scale (GDS) (Reisberg et al., 1982) identifies seven stages of cognitive decline: 1) no cognitive decline; 2) very mild cognitive decline; 3) mild cognitive decline; 4) moderate cognitive decline; 5) moderately severe cognitive decline; 6) severe cognitive decline; and 7) very severe cognitive decline. The GDS places “difficulty choosing the proper clothing to wear” in stage 5, “moderately severe cognitive decline.” It places “need for some assistance with ADLs, e.g., may become incontinent” in stage 6, “severe cognitive decline.” The scale places the ADLs, incontinence and need for assistance with toileting and feeding, in stage 7, “very severe cognitive impairment.” The GDS does not mention the ADLs, bathing and transferring.
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. Some, and perhaps many, individuals do not fit neatly into the identified stages, however, and may become unable to perform ADLs at the level of cognitive impairment or dementia indicated in the scale. In fact, research shows that there is not a one-to-one correspondence between level of cognitive impairment and loss of ability to perform any particular ADL (Brinkman et al., 2002; Cohen-Mansfield et al., 1995; Galasko et al., 1991; Reed et al., 1989; Weintraub et al, 1992). Cognitive impairment and inability to perform ADLs are certainly related, as shown in the studies discussed earlier in this section, but they are not the same, and studies conducted in various settings shows that individuals who have essentially the same level of cognitive impairment vary considerably in their ability to perform particular ADLs. On the other hand, it is also clear that all individuals with progressive, nonreversible dementias will eventually be unable to perform any ADLs and will need total assistance from another person to survive.
Defining “substantial assistance from another person.” For purposes of determining which long-term services and supports can be deducted as medical expenses in federal income tax calculations, the term, “substantial assistance,” has been broadly defined to include two concepts: “hands-on assistance,” described as physical help without which the person would not be able to perform an ADL, and “standby assistance,” described as the presence of another person within arm’s reach to prevent injury, for example, when the person is bathing and might fall.
Some of the kinds of assistance that are most often needed by a person with cognitive impairment who is unable to perform ADLs are not encompassed by the concepts, “hands-on assistance” and “standby assistance.” As noted earlier, a person with cognitive impairment may be unable to perform ADLs because he or she is unable to learn or remember how to perform them, know when or where to perform them, or plan, initiate, and sequence the steps needed to perform them successfully. Although the term, “standby assistance,” could be construed to encompass the kinds of assistance needed by a person with these deficits, it is not usually described in that way.
A person with cognitive impairment who is unable to perform an ADL independently needs assistance to initiate the ADL at the appropriate time and in the appropriate place and to perform each of the steps required to complete the ADL successfully. The assistance needed by the person is “substantial” in the sense that the helper must be physically present and must remain involved in the activity until it is completed. Some ADLs can be effectively scheduled for certain times in the day (e.g., dressing) or even some days of the week (e.g., bathing). Others, especially toileting, cannot be scheduled in periods as long as a day, or even as long as 5 or 6 hours. Assistance with toileting can be needed at any time of the day or night, and failure to complete the ADL, toileting, is likely to result in failure with respect to another ADL, incontinence. Adult diapers can be used, but they must be changed on a timely basis to avoid the development of skin problems and decubitus ulcers. In this context, it is also important to note that the study by Njegovan et al. (2001) showed that inability to perform the ADL, toileting, can occur before (i.e. in people with less cognitive impairment) than the ADL, dressing.
Without substantial assistance, the person with cognitive impairment who cannot perform an ADL independently is no more able to perform the ADL than another person who is physically unable to perform it. The belief that the amount of assistance with ADLs that is needed by people with cognitive impairment is much smaller than the amount of assistance with ADLs that is needed by people with physical impairment is pervasive and difficult to dispel. It is possible that some individuals who hold this belief are not aware of the cognitive abilities that are needed to perform activities that are generally regarded as simple and routine once the abilities are acquired in childhood. It is also possible that some individuals are not aware that accidents, injuries, progressive dementias and other diseases and conditions can result in cognitive impairment sufficient to leave an individual unable to remember how to perform these basic activities, unable to know when or where to initiate the activities and unable to sequence the steps needed to perform the activities successfully. Frequent use of the terms “cueing” and “reminding” to describe the kinds of help needed by some people with cognitive impairment to perform ADLs may contribute to this lack of awareness, by suggesting, for example, that all the person needs is “a reminder” to bath, dress, use the toilet or eat.
Whatever the reason for the belief that the amount of assistance with ADLs needed by people with cognitive impairment is much smaller than the amount of assistance with ADLs needed by people with physical impairment, it is important to clarify that individuals who are unable to perform ADLs because of physical or cognitive impairments or both need substantial assistance to perform the ADLs, even though the precise types of assistance they need may differ.
Recommendations. The term “substantial assistance” should be defined to include not only hands-on and standby assistance but also the assistance needed by a person with cognitive impairment who cannot perform the ADL independently, that is, assistance to initiate the ADL at the right time and in the right place and to complete the steps required to perform the ADL successfully.
Information about the kinds of difficulties that are frequently associated with inability to perform ADLs in people with cognitive impairment (that is, difficulty in knowing or remembering when or where to initiate the ADL and inability to plan and sequence the steps required to complete the ADL successfully) and the kinds of assistance that is needed to address these difficulties should be conveyed to anyone who is responsible for implementing the CLASS Program benefit trigger.
Information about both the strong relationship between cognitive impairment and inability to perform ADLs and, at the same time, the lack of one-to-one correspondence in some individuals between level of cognitive impairment and inability to perform a specific ADL should be conveyed to anyone who is responsible for implementing the CLASS program benefit triggers.
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