A Report on the Actuarial, Marketing, and Legal Analyses of the CLASS Program. Part 2: Cognitive Impairment and Need for and Use of Long-Term Services and Supports

10/14/2011

The term, cognitive impairment, refers to reduced or impaired cognitive or mental abilities, including memory, thinking, learning, awareness, orientation, understanding, recognition, concentration, reasoning, planning, organizing, solving problems and making judgments and decisions. A wide array of genetic and acquired diseases and conditions can cause cognitive impairment.

Cognitive impairment can result in inability to perform activities that are essential for normal, independent functioning, including self-care activities, usually referred to as ADLs and IADLs (instrumental activities of daily living) in older people, as well as activities that are required for school and work in younger people and activities that are part of normal social interaction for people of all ages. Even if an individual with cognitive impairment is physically able to perform these activities, he or she may be unable to learn or remember how to perform them, know when or where to perform them, or be unable to plan, initiate, or sequence the steps needed to perform them successfully. Depending on the types of activities the individual is unable to perform independently, he or she may need long-term services and supports.

The relationship between cognitive impairment and inability to perform essential self-care and other activities is obvious in a sense, but it is not always fully understood. Two examples pertaining to inability to perform ADLs illustrate the relationship. First, with respect to the ADL, dressing, an individual of any age could be physically unable to dress independently because of weakness or an injury, disease, or condition that makes it impossible for the individual to get out, put on, and fasten clothing. In contrast, an individual could be cognitively unable to dress independently because of inability to learn or remember how to put on clothing; inability to plan, initiate, and sequence the steps in dressing, or inability to understand or remember when to get dressed. Similarly, with respect to the ADL, toileting, which means getting to and using the toilet, an individual could be physically unable to get to or use the toilet independently because of weakness or an injury, disease or condition that makes it impossible walk or otherwise get to the toilet, use it and get back to his or her prior location. In contrast, an individual could be cognitively unable to learn or remember how to use a toilet, unable to recognize a toilet or know what it is for, or unaware of his or her need to use the toilet at a particular time. Although the specific reasons that individuals with cognitive versus physical impairments are unable to perform an ADL differ, and the kinds of help they need to perform the ADL may also differ, the end result with respect to the need for substantial assistance from another person to perform the ADL is often the same.

In addition to inability or reduced ability to perform self-care and other activities that are essential for normal, independent functioning, cognitive impairment can result in behaviors that create threats to the individual’s health and safety. Examples of these behaviors include leaving home alone and getting lost; ingesting spoiled food or toxic substances; using household appliances and sharp objects in an unsafe manner; and failing to follow instructions for needed medical care, e.g. instructions about the amounts of and schedule for taking prescribed medications. Such behaviors can lead to serious injury and death. To avoid these negative outcomes, long-term services and supports, including services often referred to as “supervision” or “monitoring,” may be needed.

The impact of cognitive impairment on an individual’s need for long-term services and supports varies greatly depending on many factors. These factors include how many and which particular cognitive abilities are affected and how severely they are affected; whether the cognitive impairment was present at birth or occurred in childhood or later in life; whether it occurred suddenly or gradually; and whether it is stable, worsening, or improving over time. For a few diseases and conditions that cause cognitive impairment, there is little or no variation among individuals who have the disease or condition with respect to a few of these factors. For example, all people with cognitive impairment due to Down’s syndrome have had the condition since birth. Likewise, almost all people with cognitive impairment due to an accident or a stroke have experienced a sudden onset of cognitive impairment, whereas almost all people with cognitive impairment due to degenerative dementias, such as Alzheimer’s disease, have experienced a gradual onset. As a rule, however, there is considerable variation among individuals with cognitive impairment due to any particular disease or condition in terms of these and other factors that affect the individual’s need for long-term services and supports.

Many individuals with cognitive impairment also have physical impairments. Their cognitive impairment is likely to limit their capacity to compensate for their physical impairments and, therefore, further reduce their ability to perform self-care and other activities that are essential for normal, independent functioning. For these individuals, need for long-term services and supports is affected by both their cognitive and physical impairments and the often complex interactions between the impairments.

Lastly, of course, an individual’s need for long-term services and supports depends on many characteristics of the individual’s family and social environment that are not determined by the disease or condition that is causing his or her cognitive impairment.

The following discussion focuses on the need for and use of long-term services and supports by older people with cognitive impairment and dementia. This focus addresses an important segment of the population of Americans with cognitive impairment, and the segment for which there is the most available information to evaluate the implications of the CLASS Program benefit triggers. Comparable information is needed to evaluate the implications of the triggers for nonelderly adults and people with cognitive impairment due to other diseases and conditions.

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