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When They Just Aren't Acting Like ThemselvesLoading...
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Practical Knowledge Sharing for Overcoming the Daily Challenges of Living with ALS
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By St. Louis ALS Association Caregivers for ALS Caregivers
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Overview
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Introduction
When They Just Aren't
Acting Like Themselves
Acting Like Themselves
THIS BOOK WILL BENEFIT: People with ALS experiencing more than just progressive physical challenges. This includes those experiencing "emotional mismatch" or not thinking clearly.
THIS BOOK INCLUDES:
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Who We Are
We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
The Purpose of This Book
What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/3/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/3/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Assessment
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Identification
Identification (Continued)
◼ Only about half of the pALS experience cognitive and behavioral challenges. Some caregivers have noticed that this is more common with bulbar onset of the disease.
◼ Many pALS also develop FTD “frontotemporal dementia”. A small percentage get moderate to severe symptoms which normally occur before or soon after the first muscle-related symptoms occur.
◼ Genetic testing has identified cognitive and behavior risk factors associated with certain genes.
◼ Brain imaging studies and biomarker studies can also be used to provide tangible explanations for changes in the way a pALS may think and act.
◼ The pALS may be referred to a neuropsychologist for evaluation.
◼ It is very important to bring up changes in thinking or how the pALS is acting to your ALS clinic team. They can help.
◼ pALS baseline comparison is looked at for changes in behavior. Do you find yourself saying “they used to never be like this”?
◼ Many pALS also develop FTD “frontotemporal dementia”. A small percentage get moderate to severe symptoms which normally occur before or soon after the first muscle-related symptoms occur.
◼ Genetic testing has identified cognitive and behavior risk factors associated with certain genes.
◼ Brain imaging studies and biomarker studies can also be used to provide tangible explanations for changes in the way a pALS may think and act.
◼ The pALS may be referred to a neuropsychologist for evaluation.
◼ It is very important to bring up changes in thinking or how the pALS is acting to your ALS clinic team. They can help.
◼ pALS baseline comparison is looked at for changes in behavior. Do you find yourself saying “they used to never be like this”?
◼ While the diagnosis doesn’t change the situation, it does provide relief to caregivers as to why the person is acting abnormally.
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Identification (Continued)
◼ While the diagnosis doesn’t change the situation, it does provide relief to caregivers as to why the person is acting abnormally.
Video: Neurologist Perspective
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Assessment (Continued)
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Common Signs of Impaired Behavior or Thinking
Assessment Outcomes
◼ The pALS behavior becomes embarrassing, childlike, or inappropriate (pseudobulbar affect).
◼ The pALS loses their “appropriateness filter” when making comments.
◼ The pALS binges on sweets, or only one type of food to the exclusion of a more balanced diet.
◼ The pALS has decreased attention to hygiene such as toileting, bathing, grooming, etc.
◼ The pALS has a lack of concern for others (emotional blunting)
◼ The pALS is unable to concentrate.
◼ The pALS has Increased aggression
◼ The pALS writes or says words in the wrong order.
◼ The pALS thinks of the word they want to use but cant get it out in conversation.
◼ The pALS cannot follow instructions.
◼ The pALS has difficulty remembering what they intended to do.
◼ The pALS loses their “appropriateness filter” when making comments.
◼ The pALS binges on sweets, or only one type of food to the exclusion of a more balanced diet.
◼ The pALS has decreased attention to hygiene such as toileting, bathing, grooming, etc.
◼ The pALS has a lack of concern for others (emotional blunting)
◼ The pALS is unable to concentrate.
◼ The pALS has Increased aggression
◼ The pALS writes or says words in the wrong order.
◼ The pALS thinks of the word they want to use but cant get it out in conversation.
◼ The pALS cannot follow instructions.
◼ The pALS has difficulty remembering what they intended to do.
◼ Impairment in thinking and behavior for a person with ALS could be due to factors like insufficient breathing (too little oxygen or too much carbon dioxide), medication side effects, depression or anxiety. By raising the pALS symptoms to your clinic team, they can see if these symptoms might be caused by something that could be addressed and these symptoms reversed.
◼ If the impairment is directly tied to the disease and the pALS is able to "understand" the situation, it is important to prioritize completing advanced directives and all other legal documents to ensure their wishes / intentions are clear. Like other ALS symptoms, this impairment will worsen over time as well.
◼ If the impairment is directly tied to the disease and the pALS is unable to "understand" the situation, it is important for the caregiver and family to set realistic expectations for the pALS. The pALS should not be "expected" to change their behavior. The environment around the pALS must change aligning with their current ability level.
◼ If the impairment is directly tied to the disease and the pALS is able to "understand" the situation, it is important to prioritize completing advanced directives and all other legal documents to ensure their wishes / intentions are clear. Like other ALS symptoms, this impairment will worsen over time as well.
◼ If the impairment is directly tied to the disease and the pALS is unable to "understand" the situation, it is important for the caregiver and family to set realistic expectations for the pALS. The pALS should not be "expected" to change their behavior. The environment around the pALS must change aligning with their current ability level.