What is dementia anyway?


The proofreader for my second second Sophie and Sam mystery happens to be a social worker with a lot of experience in nursing homes. She questioned a scene in which a group of nursing home residents are being wheeled through Bok Tower Gardens. She said nursing homes do not have the money for field trips. My scene was not believable to her. Since it is pivotal to the plot, I changed the wording to make clear these people in wheelchairs were a small group from an Assisted Living facility who were participants in horticultural therapy.

I had been careless in using the term “nursing home” in a general sort of way, without thinking of the stages of care elders now can receive.

What does this have to do with the heading of this blog? Well, it reminds me of how angry I became when my mother was described as having dementia. Previously, she had been diagnosed by a geriatric specialist as “dementia, probably Alzheimer’s.” I know just how this came about. First of all, it was on the record that she had experienced a stroke some years earlier. Secondly, she wouldn’t answer any of the doctor’s questions. Case closed.

Mother at 85

I had witnessed this behavior in her doctor’s office when she was given a “mini-mental” exam. The follow-up test was an idea of another family member who thought she needed to go into a “home.” (See how naturally we revert to the old-fashioned, one-size-fits-all idea of where to put our difficult elders?”)

Let’s go to www.Medicinenet.com for a definition.

“Dementia: Significant loss of intellectual abilities such as memory capacity, severe enough to interfere with social or occupational functioning.

“Criteria for the diagnosis of dementia include impairment of attention, orientation, memory, judgment, language, motor and spatial skills, and function. By definition, dementia is not due to major depression or schizophrenia.

“Dementia is reported in as many as 1% of adults 60 years of age. It has been estimated that the frequency of dementia doubles every five years after 60 years of age.

“Alzheimer’s disease is the most common cause of dementia. There are many other causes of dementia, including (in alphabetical order): AIDS (due to HIV infection), alcoholism (the dementia is due to thiamine deficiency), brain injury, brain tumors, Creutzfeldt-Jakob disease, dementia with Lewy bodies (tiny round structures made of proteins that develop within nerve cells in the brain), drug toxicity, encephalitis, meningitis, Pick disease (a slowly progressive deterioration of social skills and changes in personality leading to impairment of intellect, memory, and language), syphilis, thyroid disease (hypothyroidism) and vascular dementia (damage to the blood vessels leading to the brain).” END OF DEFINITION

There is no doubt that my mother developed vascular dementia in the years that followed her diagnosis, but she did not have Alzheimer’s, and nobody noticed her real problem:  FEAR. Her husband of 60 years had just died, and she was finding it difficult to cope on her own with the house, yet reluctant to leave the environment that tied her to him and which gave her pleasure in her own talent as an interior decorator.

Mother did not like talking about her body or mind with anyone, especially strangers, like doctors. She hadn’t even told me that she had a complete hysterectomy in the 1960s. Dad went along with the idea that it would trouble me to know she had a spot of cancer.  She lost some hearing after her stroke, and that became a barrier to socializing.

There were so many other things the doctor could have found out about my mother before he condemned her with “Dementia, probable Alzheimer’s.”

She was lonely. She and dad had lived in the town just five years and had no real network of friends. The hearing loss was one reason. She had trouble on the phone. She thought she heard water running when it was only a fan. She would call my brother to ask for help again and again. Her fancy new hearing aids required constant attention, and she would take them out. One pair got ground up in the garbage disposal.

Mother was 80 and slowing down. The one companion she had was the sweet dog she and Dad raised from a pup. Dad took him out for walks twice a day. She couldn’t walk him that because it hurt her; it now seems to me she had undiagnosed spinal stenosis.

Mother was depressed, angry, and worried about what would happen to her.  When my husband and I finally persuaded her to live with us, she gradually made a transition into a contented state of mind. She was in fact astonishingly adaptable. She had daytime caregivers Monday through Friday and went to an adult day care program a couple of times a week. She learned she was good at Bingo and lots of other games. She liked the attention of the men.

Mom did not have Alzheimer’s and her dementia was tolerable. She simply was being Mother as we’d always known her, independent and individualistic, only more so.

12 comments to What is dementia anyway?

  • What is dementia anyway? « Moxie Cosmos…

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  • I found a couple of topics worth commenting on in the body of this post.

    First, the use of the words “nursing home” or “home” used in this case points out the need to be more specific in discussions particularly involving the elderly. Many of the patients I visited in my years as a liaison with the Guillain Barre Foundation were sent to what used to be called nursing homes until more sophisticated and specific titles were created: Skilled Nursing Facility or Rehabilitation center for example.

    Second, according to what I’ve read, dementia is an umbrella topic for more specific diseases such as Alzheimers. In the case of Dahood’s mother, dementia was slight and manageable. Our bodies wear out as we age, and our neuropathways tend to become more cluttered as well.

    In the case of my husband, his brain tumors destroyed many of his nuero pathways and more had to be constructed. I have a whole chapter devoted to rebuilding the damaged brain in my latest book. This type of repair takes work and the end result is not quite as strong, never perfect. The same with aging. My view is that what we gain in wisdom as we age should count for something when we look at the total person.

    • admin

      Hi, Ann! Thanks for checking in and adding to the post. My cousin, a social worker, also warned me about the term “nursing home.” I changed some of my next novel to distinguish nursing home from assisted living, and Skilled Nursing is not always the end of the road. I am very concerned that “dementia” is used without further delineation. Many of us are old enough to recall when someone might say, “He’s demented” ( the equivalent of permanent brain damage, useless). Now we know we can restore our brain powers by shifting the load from damaged parts to other lobes. Right? And, of course, as you say, wisdom is valuable, and sometimes a grandma in a ricking chair keeping silent is a good role model. By the way, readers, check out Ann’s latest book written for caregivers, especially. It’s available on Amazon.

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  • A 1960 study by E. Morton Jellinek is the foundation of the modern disease theory of alcoholism. Jellinek’s definition restricted the usage of the word “alcoholism” to those showing a certain natural history. The present day medical definition of alcoholism has been revised numerous times ever since then. The American Medical Association currently uses the word alcoholism to refer to a certain chronic primary disease

    • karen

      I don’t know why you put this comment here, but it gives me the opportunity to pass on information that alcoholism was considered a disease when I worked for Tucson General Hospital, which also operated one of the first alcoholism centers in the SW (West Center), based on that very principle. The idea of it being a disease was in reaction to it being considered a flaw in character. That prevented families from getting help for their alcohol-dependent loved ones. Sadly, many elders living alone don’t have family members nearby to watch for symptoms of this disease. Their friends don’t tell, and may even encourage them. Please alert your friends and (if necessary) their families to the symptoms you see.

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