The Toll of Lewy Body Dementia

It is very annoying when people tell me or anyone else that Mom has Alzheimer’s.  Seriously?  That would be like telling someone that the patient has breast cancer when they really have leukemia or pancreatic cancer.  There is a difference!  They fall under the same umbrella of Dementia, and sometimes the two types mix, but they are different.  

Patients with LBD (Lewy Body Dementia) require more services, resources, and assistance than those with AD.   Their lifespan is shorter, but as the disease is so different for each patient, it’s difficult to really catalog the length the disease takes from diagnosis to completion or death.   

The cause of LBD is stated as being:

DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy bodies, that are found in the nerve cells of the affected parts of the brain. These "abnormal protein structures" were first described in 1912 by Frederich Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the more common form of dementia that bears his name.

Lewy bodies are found throughout the outer layer of the brain (the cerebral cortex) and deep inside the midbrain and brainstem. They are often found in those diagnosed with Alzheimer's, Parkinson's, Down syndrome and other disorders.

The cause of DLB is unknown and no specific risk factors are identified. Cases have appeared among families but there does not seem to be a strong tendency for inheriting the disease. Genetic research may reveal more information about causes and risk in the future. It usually occurs in older adults between 50-85 years old and slightly more men than women have the disease.

Now, Mom went through doctors rapidly.  She fired one for reasons unknown, the second she fired when her driving was questioned, the third was an interim while she waited for an opening with another.  During that time she was strongly urged to see a psychiatrist, which she told me was not going to happen.  “I’m not going to sit in the hallway while you and everyone else discuss what is wrong with me!”  This is a reflection of how the disease warps thinking.

Mom finally did see a psychiatrist, thanks to her friend, Philis.  She was put on a more holistic regimen of medications which she hated as they didn’t have the “kick” of the earlier ones.  At last, she found a doctor who went along with Mom’s suggestion she be put back on to Lorazepam, which she began to take and take and take - without realizing the effects.  

Finally,  there was so much going on that she was referred for hospitalization in order to observe her.  Here, they were able to diagnose her with LBD.

Once they had the diagnosis in hand, we had to find a placement for her in a memory care facility.  The hospital gave us until the end of the week - HA!  It took 2 more days for me to secure the placement (I’d already been searching), but then they had to perform their task in reviewing the needs.  Believe it or not, this can break the deal in many instances.  Many facilities will refuse LBD patients because of the high needs they require, despite that they charge such large fees for care and rent.  

Where Mom ended up, at St. Anthony’s, they lovingly took her in.  They had no idea what they were really receiving.

Mom demonstrated rational thought and not much of a problem in her thinking.  She was quite active and was a bit insufferable.  I would receive calls which I answered as though I were the parent speaking with the principal of the school for my naughty daughter.  

We had to get a regular doctor, as the one on deck at the time was not educated in LBD, and thought it was another term for Alzheimer’s.  I’m sure you know this did not go over well, but Mom was relieved when I stated she didn’t have AD, but LBD - to this she listened but was confused as I “educated” the physician.   Soon, though, through MediCare, we were able to locate one of the best gerontologists in the city.  We also were able to find one of the best neurologists who understood and knew of LBD, and was studying it thoroughly.  

Next came hope through a masseuse.  Due to Mom’s tremors, which happened sporadically, I realized that it might be more calming and could alleviate her anxiety were she to have some way to relax.   Now, Mom is hardly a touchy-feely being, so this was a gamble.  The therapist I found was fantastic until Mom fired her for no real reason - she was done.  

As far as other services? Well, they really had to keep an eye on Mom.  She figured out the security codes for the doors and they caught her taking walks, taking other residents out to help them go home, as well as just not being very cooperative many times.  Soon, however, Mom began to relax and grow fond of the staff.  

She necessitated 1:1 physical therapy, and would take as much time as she possibly could with the therapist - thereby keeping others from having much access.  

While the other ladies in residence were enjoying the arts and conversations, Mom was batting balloons, doing floor exercises, and just keeping busy physically.  She also wanted to keep reading - but that didn’t last more than half a year - when she just stopped, as she couldn’t recall what she’d already read.  

There were also her demands to go out and do things in the community, which was perfectly fine - until she’d verbally attack the waitstaff in a restaurant for taking too long (I guess more than 5 minutes for a meal is just Hell for some, eh?!).  

Her not having a phone was a relief for us, as this way she had limited access to call.  This was a struggle for her and many of her friends (who called me to complain that it was cruel of me to deny her access, but I was thinking of myself and my siblings who would be bombarded with calls about nothing - trust me on this, I lived it for more than a year before she was placed.  

And this goes hand-in-hand with the research.

Research suggests that people with LBD may be more functionally impaired than individuals with Alzheimer’s disease (AD) with the same level of global cognitive impairment. Loss of independence in ability to perform instrumental activities of daily living typically occurs early in LBD, including the inability to manage one’s own medications and finances. Driving may also need to be curtailed early due to changes associated with LBD, i.e. variable levels of attention and alertness, visual hallucinations, slowed of reaction time, and decreased spatial awareness. LBD caregivers need to increasingly supervise and monitor LBD patients as particular symptoms manifest themselves or worsen, including executive impairment (i.e., difficulty planning and completing tasks), fluctuations in alertness, incontinence, intrusive hallucinations, and falls.

The range and intensity of care required for LBD patient means that greater attention to and allocation of resources to assist LBD families are needed. One study compared resource use, cost of care, and determinants of cost of care in patients with dementia with Lewy bodies (DLB) and AD. DLB patients utilized more than twice the amount of resources compared with AD patients. Specifically, DLB patients used greater resources in accommodations (long term residential care), and required more outpatient care, informal care (measured by caregivers’ lost production and lost leisure time), community services and pharmacological therapy. 11 Among neuropsychiatric features, apathy (i.e., loss of motivation to participate in routine activities) was found to be higher in DLB patients than AD patients. In addition, the cost of care for DLB patients with apathy was almost three times as high compared with AD patients with apathy. Thus, apathy is an important behavioral feature in LBD.

Luckily, though, through LBDA.org I was able to locate a support group not far from my home, in which I met so many others and learned so much more.  I have, also, a supportive group at work and friends and family also demonstrate support.

While we rely on the caregivers at the residence, there is still so much to deal with  - bills, insurance, appointments, necessities (toiletries, etc), that cannot be forgotten.   So, while many days are fraught with “Mommy issues”, there are some where a clean break is necessary.  Thank goodness for Hospice and the staff!  They’re such saints.  

Someone once asked, “Why do you give her so much attention?  Does she even remember you?” I have to reply that she is my mother and for good or bad, it is truly our duty to take care of the elders in our community when the challenge arises.

It must be remembered, that “Only by the Grace of God, There Go I.”