Last weekend I rushed over to the Lewy Body Dementia Support Group in my area. These are springing up all around the country as people are realizing their loved ones are afflicted with a disease/syndrome (the jury is out as to whether it is one or the other at this time) that they know very little about. I always learn something new at these meetings while able to share our experience with Mom.
As we chatted someone brought up F.A.S.T. and how it helps determine the stage of dementia the patient is experiencing. Now, this was news to me! I’d never heard of such a thing - in fact, I was told many times there was nothing definitive about LBD having actual stages, other than onset and near-death. Hmmmmm.
I knew there would be something I learned that day that would make an interesting post that I could share with others who might not be aware. So, I looked it up. It’s actually quite simple, but I’m sure it took some doing to keep it simple and direct. However, once again, it pertains to those with Alzheimer’s, but it’s still interesting to see some of the similarities to LBD.
Here, I cut and pasted a sample form for your viewing:
FAST SCALE ADMINISTRATION The FAST scale is a functional scale designed to evaluate patients at the more moderate-severe stages of dementia when the MMSE no longer can reflect changes in a meaningful clinical way. In the early stages the patient may be able to participate in the FAST administration but usually the information should be collected from a caregiver or, in the case of nursing home care, the nursing home staff. The FAST scale has seven stages:
1 which is normal adult
2 which is normal older adult
3 which is early dementia
4 which is mild dementia
5 which is moderate dementia
6 which is moderately severe dementia
7 which is severe dementia FAST Functional Milestones.
FAST stage 1 is the normal adult with no cognitive decline.
FAST stage 2 is the normal older adult with very mild memory loss.
Stage 3 is early dementia. Here memory loss becomes apparent to co-workers and family. The patient may be unable to remember names of persons just introduced to them.
Stage 4 is mild dementia. Persons in this stage may have difficulty with finances, counting money, and travel to new locations. Memory loss increases. The person's knowledge of current and recent events decreases.
Stage 5 is moderate dementia. In this stage, the person needs more help to survive. They do not need assistance with toileting or eating, but do need help choosing clothing. The person displays increased difficulty with serial subtraction. The patient may not know the date and year or where they live. However, they do know who they are and the names of their family and friends.
Stage 6 is moderately severe dementia. The person may begin to forget the names of family members or friends. The person requires more assistance with activities of daily living, such as bathing, toileting, and eating. Patients in this stage may develop delusions, hallucinations, or obsessions. Patients show increased anxiety and may become violent. The person in this stage begins to sleep during the day and stay awake at night.
Stage 7 is severe dementia. In this stage, all speech is lost. Patients lose urinary and bowel control. They lose the ability to walk. Most become bedridden and die of sepsis or pneumonia.
(fast scale administration)
While this may seem rather general in its approach, it’s recognized as the most validated measure of AD (FAST).
The following is taken from DLB at www.alznc.org, and discusses the fundamentals of how Lewy Body Dementia progresses (Look for the possible similarities and differences, if you can):
How Does It Progress?
Average length of life after symptoms appear is 5-7 years with a range of 2-20 years.
It tends to progress from infrequent episodes to a more consistent and gradually worsening picture. Symptoms still vary in intensity and severity, but as the disease advances, they are typically present most of the time. First symptoms typically involve hallucinations, falls or movement problems, and some confusion about reality.
By the middle of the disease, mobility skills are very impaired (a walker or even a wheelchair may be needed), functional skills are very limited (help is needed for almost all fine motor tasks), there are more problems with hallucinations and delusions, sensory intolerance (especially around the mouth, on the palms and fingers, soles of the feet, and in the genital region), and disturbances in sleep and wake patterns can be marked and challenging. Weight loss is common as is difficulty with swallowing, chewing, and speaking clearly and showing facial emotions clearly. By this time, it is common that falls have resulted in fractures and head wounds.
By the end of the disease, the person will typically be bedbound or will need specialized seating in a reclining seating system. Rigidity and stiffness are very common and make movement and care very difficult for both the caregiver and the person with DLB. The person is able to move little, and requires major amounts of physical help for all care and engagement in preferred activities. The person may find touch uncomfortable and painful, even if it is delivered slowly and gently. The person typically has a very difficult time communicating. Speech is very soft and indistinct and often off target or repetitive in nature.
Death is typically a result of pneumonia or other infection, which the body cannot fight off even with the use of antibiotics. Pneumonia is typically caused by aspiration (food or liquids getting into the airway due to problems with eating or drinking and breathing regulation). Other infections can be localized (repeated UTIs (urinary tract infections), open pressure ulcers or wounds (caused by the inability to move or friction with repeated movements), skin injuries (when hitting a hard or sharp surfaces or skin exposure to urine or feces), or contractures (tightening and shortening of muscles that keep body parts closed together), the use of tubes or catheters (feeding tubes or urinary catheters). Still other infections can be or systemic, called sepsis, an infection in the blood stream. Other causes of death include malnutrition and dehydration, complications following falls (head injury or fractures), pulmonary emboli (clots that travel to the lungs due to prolonged immobility), or heart failure.
Pretty sobering - right?! According to this information, Mom is in the middle of the disease, not toward the end; however, in all the reading I’ve done, I’ve not found anyone who went into such a fatal decline as is described above - in fact, they began the final stages around where Mom is at this time, and with the doctor concurring, I’ll have to take the above with a few shakers of salt. This doesn’t mean it isn’t accurate, but LBD is so individualized, that it’s quite difficult to know what comes next.
So, what do we do with the above information? Store it. Keep it handy. There are people who may actually benefit from reading it and begin their understanding of where their loved ones are.
I hope this helps answer some questions and furthers the discussion. My brain is now whirling with questions - but I’ll save you the torture - for now.
By the way, the typos and errors in the text I copied I decided not to edit (for those purists out there), so please leave me alone if you've the urge to point them out - I already know and am shuddering.
As we chatted someone brought up F.A.S.T. and how it helps determine the stage of dementia the patient is experiencing. Now, this was news to me! I’d never heard of such a thing - in fact, I was told many times there was nothing definitive about LBD having actual stages, other than onset and near-death. Hmmmmm.
I knew there would be something I learned that day that would make an interesting post that I could share with others who might not be aware. So, I looked it up. It’s actually quite simple, but I’m sure it took some doing to keep it simple and direct. However, once again, it pertains to those with Alzheimer’s, but it’s still interesting to see some of the similarities to LBD.
Here, I cut and pasted a sample form for your viewing:
FAST SCALE ADMINISTRATION The FAST scale is a functional scale designed to evaluate patients at the more moderate-severe stages of dementia when the MMSE no longer can reflect changes in a meaningful clinical way. In the early stages the patient may be able to participate in the FAST administration but usually the information should be collected from a caregiver or, in the case of nursing home care, the nursing home staff. The FAST scale has seven stages:
1 which is normal adult
2 which is normal older adult
3 which is early dementia
4 which is mild dementia
5 which is moderate dementia
6 which is moderately severe dementia
7 which is severe dementia FAST Functional Milestones.
FAST stage 1 is the normal adult with no cognitive decline.
FAST stage 2 is the normal older adult with very mild memory loss.
Stage 3 is early dementia. Here memory loss becomes apparent to co-workers and family. The patient may be unable to remember names of persons just introduced to them.
Stage 4 is mild dementia. Persons in this stage may have difficulty with finances, counting money, and travel to new locations. Memory loss increases. The person's knowledge of current and recent events decreases.
Stage 5 is moderate dementia. In this stage, the person needs more help to survive. They do not need assistance with toileting or eating, but do need help choosing clothing. The person displays increased difficulty with serial subtraction. The patient may not know the date and year or where they live. However, they do know who they are and the names of their family and friends.
Stage 6 is moderately severe dementia. The person may begin to forget the names of family members or friends. The person requires more assistance with activities of daily living, such as bathing, toileting, and eating. Patients in this stage may develop delusions, hallucinations, or obsessions. Patients show increased anxiety and may become violent. The person in this stage begins to sleep during the day and stay awake at night.
Stage 7 is severe dementia. In this stage, all speech is lost. Patients lose urinary and bowel control. They lose the ability to walk. Most become bedridden and die of sepsis or pneumonia.
(fast scale administration)
While this may seem rather general in its approach, it’s recognized as the most validated measure of AD (FAST).
The following is taken from DLB at www.alznc.org, and discusses the fundamentals of how Lewy Body Dementia progresses (Look for the possible similarities and differences, if you can):
How Does It Progress?
Average length of life after symptoms appear is 5-7 years with a range of 2-20 years.
It tends to progress from infrequent episodes to a more consistent and gradually worsening picture. Symptoms still vary in intensity and severity, but as the disease advances, they are typically present most of the time. First symptoms typically involve hallucinations, falls or movement problems, and some confusion about reality.
By the middle of the disease, mobility skills are very impaired (a walker or even a wheelchair may be needed), functional skills are very limited (help is needed for almost all fine motor tasks), there are more problems with hallucinations and delusions, sensory intolerance (especially around the mouth, on the palms and fingers, soles of the feet, and in the genital region), and disturbances in sleep and wake patterns can be marked and challenging. Weight loss is common as is difficulty with swallowing, chewing, and speaking clearly and showing facial emotions clearly. By this time, it is common that falls have resulted in fractures and head wounds.
By the end of the disease, the person will typically be bedbound or will need specialized seating in a reclining seating system. Rigidity and stiffness are very common and make movement and care very difficult for both the caregiver and the person with DLB. The person is able to move little, and requires major amounts of physical help for all care and engagement in preferred activities. The person may find touch uncomfortable and painful, even if it is delivered slowly and gently. The person typically has a very difficult time communicating. Speech is very soft and indistinct and often off target or repetitive in nature.
Death is typically a result of pneumonia or other infection, which the body cannot fight off even with the use of antibiotics. Pneumonia is typically caused by aspiration (food or liquids getting into the airway due to problems with eating or drinking and breathing regulation). Other infections can be localized (repeated UTIs (urinary tract infections), open pressure ulcers or wounds (caused by the inability to move or friction with repeated movements), skin injuries (when hitting a hard or sharp surfaces or skin exposure to urine or feces), or contractures (tightening and shortening of muscles that keep body parts closed together), the use of tubes or catheters (feeding tubes or urinary catheters). Still other infections can be or systemic, called sepsis, an infection in the blood stream. Other causes of death include malnutrition and dehydration, complications following falls (head injury or fractures), pulmonary emboli (clots that travel to the lungs due to prolonged immobility), or heart failure.
Pretty sobering - right?! According to this information, Mom is in the middle of the disease, not toward the end; however, in all the reading I’ve done, I’ve not found anyone who went into such a fatal decline as is described above - in fact, they began the final stages around where Mom is at this time, and with the doctor concurring, I’ll have to take the above with a few shakers of salt. This doesn’t mean it isn’t accurate, but LBD is so individualized, that it’s quite difficult to know what comes next.
So, what do we do with the above information? Store it. Keep it handy. There are people who may actually benefit from reading it and begin their understanding of where their loved ones are.
I hope this helps answer some questions and furthers the discussion. My brain is now whirling with questions - but I’ll save you the torture - for now.
By the way, the typos and errors in the text I copied I decided not to edit (for those purists out there), so please leave me alone if you've the urge to point them out - I already know and am shuddering.
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