17:03 The cognitive learning ALS Association | |
If you had asked doctors about ALS 15 years ago, the majority of providers would have told you that ALS only affects the motor and breathing functions of the body but that the mind remains normal.Cognitive learning theory in the classroom thinking and behavior changes were observed in individuals with ALS and documented in scientific and clinical papers back in the 1800s. Despite these reports, though, early research and clinical care in ALS was importantly focused on establishing the diagnosis of the disease, identifying and testing techniques allowing early diagnosis of ALS physical symptoms, and the development of clinical trials and programs allowing individuals to live higher qualities of life with the progressive physical challenges of the disease.Cognitive learning theory in the classroom Within the last 15 years, and within the last 10 years particularly, thinking and behavior symptoms are increasingly recognized in people with ALS.Cognitive learning theory in the classroom our knowledge is rapidly growing about how thinking and behavior are affected in ALS. Specifically, we are all learning how thinking and behavior changes impact disease course, symptom management, and decision making throughout the illness.Cognitive learning theory in the classroom genetic discovery, brain imaging studies, and biomarker studies now provide tangible explanations for why changes in thinking and in behavior can be symptoms of ALS.Cognitive learning theory in the classroom research on the highly variable presentation of symptoms in ALS has grown significantly and further work is underway to address how to predict who will develop thinking and behavior symptoms and how we can improve care and clinical trials for individuals with those symptoms.Cognitive learning theory in the classroom The presentation of ALS varies from person to person. Some people with ALS will never develop changes in thinking or behavior. For others with ALS, there will be mild changes in how they think or behave but they are still able to function independently and make informed decisions about their care.Cognitive learning theory in the classroom finally, for some people with ALS, changes in thinking and behavior are quite significant and severe such that these people are challenged to make informed decisions about their care and activities and require others to act on their behalf.Cognitive learning theory in the classroom educating people about thinking and behavior changes unique to ALS helps to empower a person with ALS, to validate the experience of caregivers and family members, and to educate providers working with an affected person so that decisions are made in a manner consistent with honoring the individual’s longstanding values, preferences, and desires.Cognitive learning theory in the classroom how many people with ALS experiencing changes in thinking and behavior? Current research data suggest that up to 50% of people with ALS will never develop significant changes in thinking or behavior, over and beyond normal psychological reaction to diagnosis and symptoms.Cognitive learning theory in the classroom that said up to 50% of people with ALS will experience some degree of change in thinking or behavior, with approximately 25% of those people with ALS developing a full blown dementia.Cognitive learning theory in the classroom what is the difference between “impairment” and “dementia”? Healthcare providers may refer to “impairment” or “dementia” when discussing thinking and behavior symptoms.Cognitive learning theory in the classroom “impairment” recognizes that the person with ALS is acting in a way that is different than who he/she has always been but not to the extent that he/she cannot still complete activities and think through decisions as he/she has always has done.Cognitive learning theory in the classroom “dementia” recognizes that the person with ALS is acting in a way that is different than who he/she has always been AND he/she can no longer complete activities and think through decisions as he/she has always done.Cognitive learning theory in the classroom different diseases can cause dementia. We now know that ALS can, but does not always, result in dementia. The type of thinking and behavioral impairment observed in ALS is often different than the rapid forgetting that marks the onset of alzheimer’s type dementia.Cognitive learning theory in the classroom what do thinking and behavior changes in ALS look like? Impairment in thinking and behavior within ALS can be due to the manifestation of the disease but can also relate to other factors such as insufficient breathing mechanics (too little oxygen or too much carbon dioxide), medication side effects, depression or anxiety, sleep disturbance, or pre-existing psychiatric or neurologic disease.Cognitive learning theory in the classroom it is important to bring any symptoms to the medical providers so that providers can begin to evaluate the cause of the impairment, particularly if there is any chance that it can be reversed.Cognitive learning theory in the classroom risk factors for cognitive and behavioral impairment in ALS Although older age, bulbar onset disease, family history of dementia, and pre-ALS neurologic injury have been cited as risk factors for developing cognitive and behavioral impairment in ALS, there are examples of individuals who develop the symptoms without these risk factors.Cognitive learning theory in the classroom currently the only consistently documented risk factor for the evolution of cognitive or behavioral impairment in ALS is the presence of abnormal repeats in a gene called “ C9ORF72.” diagnosis of cognitive and behavioral impairment in ALS cognitive learning theory in the classroom In order to evaluate whether the cognitive and behavioral symptoms you see are related to ALS or another process, you will be referred to a neuropsychologist for cognitive evaluation.Cognitive learning theory in the classroom the neuropsychologist will give you various paper and pencil tests to determine how you process information. You may be asked to recite as many words as you can, beginning with a specific letter of the alphabet.Cognitive learning theory in the classroom you may be asked to remember words or stories and say these back to the examiner. You may be asked to spell some words. The data collected are compared to normative data for people of your same age and education and compared to estimates of your longstanding level of function.Cognitive learning theory in the classroom this helps to determine if there is impairment and what type it could be. The neuropsychologist may speak to the person with ALS and also a caregiver or family member who knows the person well.Cognitive learning theory in the classroom what happens after cognitive or behavioral impairment has been diagnosed? If impairment is diagnosed, this may come as a relief to family or caregivers.Cognitive learning theory in the classroom often times when a person has cognitive and behavioral changes in ALS, it can be a relief to know that the person is not acting abnormally due to psychological reasons or trying to be oppositional or challenging to others.Cognitive learning theory in the classroom if insight and self-awareness is present, an impaired person can make sure that he/she attends to advanced directives and documents wishes and intentions for later on in the disease process.Cognitive learning theory in the classroom this is particularly important because cognitive and behavioral impairments, like other symptoms of ALS, advance with disease progression and worsen over time.Cognitive learning theory in the classroom If insight and self-awareness are absent, it becomes very important for family members, caregivers, and even health providers to set realistic expectations for the person.Cognitive learning theory in the classroom without insight, a person cannot be expected to change his/her behavior. The environment around the impaired person must change. Expectations for the person should match the person’s ability level.Cognitive learning theory in the classroom if the cognitively/behaviorally impaired person starts to withdraw or starts to become agitated in the face of requests for certain action, these can be signs that the expectations of the situation exceed ability.Cognitive learning theory in the classroom likewise, if a family member, caregiver, or care provider starts to experience more frustration or irritation in working with the impaired individual, then expectations of the situation may have to be simplified.Cognitive learning theory in the classroom in the context of dementia, speech therapists, occupational therapists, physical therapists, neurologists, and others working with the affected person should direct all education and interventions towards the caregivers and family as the affected person will not and cannot be expected to change on his/her own.Cognitive learning theory in the classroom Family members or caregivers dealing with frustration in the context of cognitive and behavioral impairment in ALS may benefit from supportive counseling, support groups, spiritual counseling, or increasing their own focus on taking care of themselves so that they have more resources (physical and emotional) to offer the person with ALS.Cognitive learning theory in the classroom how do these additional symptoms impact ALS disease course and treatment? There are data showing that people with cognitive and/or behavioral impairment in ALS live a shorter life span than people without such impairment in ALS.Cognitive learning theory in the classroom many studies are actively in process to determine if the presence versus absence of cognitive/behavioral impairment impacts the effectiveness of medications, treatments, or other procedures in ALS management.Cognitive learning theory in the classroom this is an important area of research. A word about pseudobulbar affect Some people with ALS develop an unusual symptom called “pseudobulbar affect.” they may cry or laugh at inappropriate times or discuss how once they start feeling an emotion, it is difficult to shut it off.Cognitive learning theory in the classroom sometimes, pseudobulbar affect can be present when a person feels more emotionally reactive in general, with more intensity to the emotion that is experienced than normal.Cognitive learning theory in the classroom pseudobulbar affect is common in ALS and is the result of a brain reflex that is no longer working correctly. It does not necessarily mean that a person is feeling anxious, sad, depressed, or emotionally distraught.Cognitive learning theory in the classroom people with ALS can have pseudobulbar affect and no other cognitive, behavioral, or psychological symptoms. Recommendations for care and support of someone with ALS and cognitive or behavioral impairment: | |
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