CRITICAL READ: Dementias Have Personality Identifiers

IF ONLY I had known this article existed when we needed it:

  

Personality Changes May Help Detect Form of Dementia

https://source.wustl.edu/2007/05/personality-changes-may-help-detect-form-of-dementia/#.UG2PJYp39wY.email.

It was published in 2007 by Washington University St Louis in one of their publications usually not accessed by the "general public" in the early years of this century and before many people had continual access to computers.

None of Mom's Dr's ever guided or counseled me or my daughter or really brought up the subject of Dementia.

"Back in the day" even the first decade and longer in the 21st Century, Dementia was seen as a "disease" of someone who could no longer function, had to be constantly supervised or they could do themselves and/or others great harm.

I'd witnessed and stories were told about "behaviors" of my maternal grandmother. 

I was a child in a time when that meant we did not question and "seen but not heard" was the philosophy of the day.

Mentioned at the top of this post and worth a second time:

Personality Changes May Help Detect Form of Dementia was published  before Mom went into a facility. 

Most importantly, It was less available to the general public as Computers weren't in homes or libraries and Search Engines were in their infancy.

Mom's Doctors, those accredited by her Long Term Care Facility to provide medical care for her in both the first and second location, did not have a clue to what Lewy Body Dementia was.

We were told by a Social Worker with the DHSS (Department of Health and Social Services) with a Master's in Sociology:

"Doctors who care for men and women in Long Term Care Facilities, work in what are determined by the United States Federal Government DHSS and the State DHSS to be "medical facilities" and therefore, by practice, if not by certification or accreditation, are in the field of "Gerontology" based on the clients/patients they serve, the records they are required to keep and the focus of their practice with the facility do not allow time to do individual or independent research".

In other words, if it's not provided to them, required of them, they have no way of knowing what medical challenges have been discovered -- even if the work is being done in facilities in their immediate area.

It's interesting looking back and seeing now how one of our Nation's leading Educational Institutions with a World Class Medical Hospital, BJC Healthcare, affiliated with its medical program, is apparently ignored by physicians practicing in the field of providing healthcare treatment to the aged in permanent living facilities. 

Why? Because they, who "visit" and are not based in any specific Long Term Care but because it's more "lucrative financially" to "hit and run" meaning to "stop by and see" and possibly even "create notes without actual in person visitation but walking through the doors of rooms and notating a "visitation" and even an "examination".

WHO TAKES THE TIME TO CERTIFY THE RECORDS ARE ACCURATE when "they" have so much work to do and "they" see a "professional" (albeit often one with the ability to create and craft information from the resident's records or a "drop in" 

or "pass by".

Many LTC's are focused on the bottom line (profitability) and create their own chain of supply from food to medicine and everything the LTC uses and the people who work there use and the "residents" use.

The business of "supply chain control and manipulation".

We were "isolated" from communication with the Dr who saw Mom; he came to the facility and since she was the "primary" person, even though we had a Health Care POA, and was not considered "sedentary", she could make her own decisions and therefore we were "out of the loop".

Consider how profitable it is NOT to have a diagnosis of Dementia in a facility. Without it, the person can and should be allowed to make their own decisions. And yet if it's truly there, many are easily manipulated and controlled with the right choice of words and a little "encouragement" from someone who wears clothing symbolizing "authority" -- like a Doctor or Nurse.

What does that tell me about the quality of medical service given by Mom's "caregivers" in Long Term Care?

It tells me they're not really interested in providing care giving that doesn't involve prescriptions and that might lead to involving other medical personnel for whom there might not be the provision of medications or other charges the facility can use to add to its bottom line.

Sound like a leap?  Not really if you read other entries in this Blog.

It's the experience of watching Mom's level of medical care going from highly personalized, individualized care when we (myself and my daughter) were her care givers and advocates to being INSTITUTIONALIZED and becoming a "recipient" of "streamlined care" based on a degree of need having to be highly demonstrated (fever lasting for certain amount of time, noticeable infection (that wasn't always true) or demonstrated critical care need. 

We ensured Mom's health was monitored, the facilities are charged with monitoring but those who do the checking vary in their care, concern and even ability to carry out many procedures they're assigned. 

YOU SHOULD BE AWARE, in many States, Missouri where we live included, "on the job training" meaning learn through practicing on patients whether someone is beside you or on your own, in a facility where they sign the paperwork "certifying" the training and create the work records to "substantiate". 

Here's what we should have been advised concerning LBD:

Washington University St Louis

"Personality changes may help detect form of dementia"

May 29, 2007                  By Michael Purdy

"A simple personality test could help doctors more quickly detect dementia with Lewy bodies, a form of dementia often confused with Alzheimer’s disease, according to a study led by researchers at Washington University School of Medicine in St. Louis.

"Dementia with Lewy bodies is the second most common neurodegenerative cause of dementia. It shares many characteristics with both Alzheimer’s and Parkinson’s disease.

"Getting the correct diagnosis is important because some medications used to treat the mental health symptoms of Alzheimer’s disease can be potentially dangerous for people with dementia with Lewy bodies."

“Patients with Lewy body dementia often have hallucinations and other behavioral problems, so they’re frequently treated with antipsychotic drugs early in the course of their illness,” says lead author James Galvin, M.D., assistant professor of neurology." 

“However, some types of antipsychotic drugs may put them at risk of serious side effects, so it’s important for physicians to be able to quickly determine who has Lewy body dementia.”

"Such side effects include neuroleptic malignant syndrome, a condition where muscles become rigid and the body’s ability to regulate its own heat production breaks down. This can lead to renal failure and death."

The study appears in the May 29 issue of Neurology, the scientific journal of the American Academy of Neurology.

In Alzheimer’s disease, a protein known as amyloid accumulates in the brain. 

Amyloid is also often found in the brain in patients with Lewy body dementias, but the key diagnostic indicator is the presence of aggregates of the protein alpha-synuclein in brain cells. These clumps are called Lewy bodies.

Lewy body dementia can cause fainting, hallucinations, Parkinson’s-like symptoms such as tremor, rigidity and motor impairment, intermittent alterations in attention and awareness, and memory loss.

The study involved 290 people who were part of a larger study and were tested every year for an average of about five years.

By the end of the study, 128 of the participants had confirmed cases of dementia with Lewy bodies, 128 had Alzheimer’s and 34 had no form of dementia. 

Researchers followed the participants through death, including autopsy results. 

During annual interviews, participants or their family members were asked about changes in personality, interests and drives.

Even prior to diagnosis, researchers more often found passive personality changes in people with dementia with Lewy bodies than people with Alzheimer’s. 

Such changes included diminished emotional response, disinterest in hobbies, repetitive behaviors, and growing apathy, or lack of interest.

People with dementia with Lewy bodies were two times more likely to have passive personality traits at the time of the first evaluation than people with Alzheimer’s disease. 

By the time of death, up to 75 percent of those with dementia with Lewy bodies had passive personality changes compared to 45 percent of those with Alzheimer’s disease.

I created these writings mostly to give myself a way to cope with the time daughter and I were going through with an unrecognized "Elder Abuser" to get through another day and eventually look back from a future when I believed we would be more informed, aware and capable.

WRITING THIS BLOG GAVE ME HOPE. It didn't matter if few saw it, read it or cared enough to comment. 

It wasn't  and isn't easy -- "washing and drying your dirty linen in public" which is what generations before would say about sharing personal information when I was growing up.

Turning a blog written almost as a Diary gives some release to times that were critical in the lives of our family with no resources, no direction and mostly conjecture AND has given me the ability to move forward not "spinning in place".

It has given me peace to know it was ignorance and policies in place locally, regionally and nationally that did not include the realities of Living With Dementia in assessing family relationships and individual lives.

What Is Needed Today and In The Future? (side note, reading and writing additional info in 2023) the doors to knowledge continue to be hard to find.

Groups and organizations who can provide are short staffed, under funded and working against many odds.

What's Needed?

Medical & Social Personnel at Long Term Care Facilities      

should present programs on the challenges & possibilities

of aging to the families of their residents.

Instead, even the RN who "runs" a facility usually spends time getting Continuing Education credits on many subjects not related to direct residential care but rather to record keeping and updates on State Regs.

Who will fill the information gap? 

Where will we find direction when wanted and needed?

Where are today's sites for family and caregivers that you don't have to wade through to find just a small scrap of information and instead arrange information in categories that are easy to understand for quick reference?

PLEASE HELP SHINE THE LIGHT INTO THE DARKNESS.

PLEASE ADD YOUR EXPERIENCES AND COMMENTS.