Lewy Body Dementia is the second most common form of dementia, right behind Alzheimer’s. Taking into account that Dementia is more a syndrome than an actual condition, one must note that caregiving for any dementia sufferer is quite difficult. While one patient may have what is presumed a definitive diagnosis, there is still room for the dementias to mix, combine, or what have you.
If you recall in my post dating April 3, 2014, I went through the differences between the various forms of dementia. Remember, Dementia is an umbrella term used for a variety of symptoms. when enough of the symptoms reflect a particular form of dementia on the spectrum, then the diagnosis is created. However, nothing is certain until an autopsy is performed.
Recently, I wrote a post about some facilities rejecting LBD patients for various reasons, some being the added amount of caregiving in relation to those with AD; the Lewy Body patients require so much more than those with Alzheimer’s.
As stated in the article Lewy Body Dementia: The Under-Recognized But Common … (DANA.org and Cerebrum. 10/2013), LBD is generally underdiagnosed or not properly diagnosed for quite some time; in fact, it may take longer for a clinician or doctor to recognize and understand the symptoms and put them together. And while all this is going on, the family is struggling to understand the Parkinsonisms, the hallucinations, the body’s failing motor skills, and the other symptoms that factor into the condition.
I can tell you, with great certainty, that understanding what is going on with the patient in the initial stages (which are actually further into the dementia’s development than we actually thought) is quite cryptic. While Mom’s confusion may have seemed obvious, there have been instances where this was also a gambit to have family members come to visit, or to have a reason to chat. On the other hand, no one wishes to believe their parent/partner could possibly have a mental condition that would affect them that badly.
While we weren’t sure what was going on with Mom, her friends and doctors seemed to have the same worries. Yet, I was 250 miles from her and working, and they were much closer - especially the doctors, who had more information and a greater proximity to her than did I, for that matter.
Putting Mom into a facility was something her medical evaluation team had ordered. There were no thoughts that any one facility might deny her access. We had no clue that working with someone in her condition would warrant so much from the staff, either; we figured Mom would be high needs, just because she was - well, Mom. However, with other LBD sufferers, it is a pattern.
According to The Gerontologist, caregiver burden amongst those caring for LBD patients is very high - due to the nature of the condition. There is so much more than with the AD patient. There are the sleep disorders, which do not allow the caregiver much chance to have a good night’s sleep - unless someone else is able to come in and care for the patient while they find a safe unencumbered spot that is safe and secure. The caregiver must also deal with the hallucinations. (Stress and Burden Among Caregivers of LBD Patients)
One man I know has a wife who sees cats in the house. So, they both go about the house trying to catch the cats. He finds humor in this, but it’s also becoming a great sadness for him. Mom is on Quetiapine, which inhibits hallucinations - which for her are those of people entering her house and taking her things, or holding her hostage. These are just some examples. Others might see people, animals, or objects, and they are so very real to them the caregivers need to see them as well (through imagination, I suppose).
Mobility issues are also at hand. The LBD patient can lose their balance at any given time and fall, which could precipitate other issues like broken bones and the like. Mom, however, seems to believe she needs no help, no walker, no aide (unless it’s one of the ones she likes). But she’s too weak to do it herself. That’s why there is an alarm on her bed, and there is always someone close by to help her.
With ADLs, or Activities of Daily Living, LBD patients believe they can function, but they need more help. They require help dressing, bathing, changing, and even toileting. However, they can also become combative.
All in all, LBD patients are a challenge unto themselves. The caregiving burden is greater than that for someone dealing with an AD patient, as AD has fewer complications surrounding the diagnosis. With LBD, there are so many different symptoms and conditions on the spectrum with which the caregiver must handle, that the burnout can be even greater.
And, let us not forget the roller coaster that doesn't allow much room for prediction. One never knows what is next.
And, let us not forget the roller coaster that doesn't allow much room for prediction. One never knows what is next.
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