Author Archives: jlhede

A Tale of Two Scientists


I haven’t posted here in a while, as I’ve been busy building my new site, designed for the support of caregivers. I invite you to check it out at

In 1907, two very important papers were published. The author of one paper went down in history, as the saying goes, while the other eventually faded into relative obscurity until just recently.

The first of these two men was Dr. Alois Alzheimer, famous for his work in helping to define the disorder that now bears his name. He was born in Bavaria, and earned his medical degree at Wurzberg University in Germany. Soon after graduating, he began work in the Asylum for Lunatics and Epileptics in Frankfurt. In 1901, he observed a patient who exhibited symptoms very similar to those observed in someone with senile dementia. However, Auguste Deter was only 51 years old.

Alzheimer spent a great deal of time in the ensuing years observing Frau Deter and chronicling the development of her disease. Eventually, he moved to Munich, and in 1902 began work at the Royal Psychiatric Clinic there. When Frau Deter died in 1906, he requested that her medical records and her brain be sent to him for further study. Upon autopsy, he discovered the now-characteristic shrinking of the cerebral cortex as well as the presence of neurofibrillary tangles and neuritic plaques.

Going on to publish a paper on the subject, in 1907, Alzheimer described Deter’s case at some length. He was not the one to name this newly-discovered disease after himself, however. That honor fell to Dr. Emil Kraepelin, Director of the clinic where Alzheimer worked at the time of his discovery, when he published his textbook “Psychiatry” in 1910. Kraepelin is a well-respected name in the scientific community, in his own right, for his work in the fledgling field of neuropsychiatry – specifically in the study of schizophrenia and other disorders.

At around the same time period that Alzheimer was doing his research, a scientist named Dr. Oskar Fischer, was working at the German University in Prague. From 1900 to 1909, he worked first in the Department of Pathological Anatomy, and then later moved to the Department of Psychology. He investigated sixteen cases of senile dementia – particularly the cerebral cortexes of these patients – using a number of different staining techniques. He not only described the presence of plaques in 12 of these individuals, but also was the first person to describe what is now known as the neuritic plaque. Plaques were not observed in the brains of 10 control cases, 10 psychotic individuals, and 45 patients with neurosyphilis.
Fischer went on to describe the appearance of these plaques, both as he initially observed them and also as they grew in size. His use of the word “neurofibrils” to describe the appearance of certain components of the plaques has persisted to this day, found in the modern term “neurofibrillary tangles.”

Moving on in his research, Fischer then began to investigate whether the clinical symptoms of these 12 individuals with senile dementia differentiated them from the other test cases. He linked the presence of plaques with a diagnosis of presbyophrenia, a diagnosis commonly used in the early years of the 20th century. This was considered to be a form of dementia, including behaviors such as confabulation, significant memory loss, hyperactivity, disorientation, elevated mood, and a preservation of “social graces.” It was thought to be either a form of Korsakoff’s psychosis or senile dementia. However, the term has vanished from current usage. Those four individuals who did not have plaques were considered to have exhibited senile dementia, thus identifying the two conditions as separate diseases.

In subsequent research, Fischer went on to describe eight stages of plaque development. He likened plaque formation to the inflammatory process, especially interesting now in view of the current research in that vein. (It was only when the state of immunohistochemistry had evolved sufficiently that Fisher’s theories were able to be validated.)

The work of Alzheimer and that of Fischer are considered to complement each other, with their use of staining techniques to identify the neuritic plaques and neurofibrillary tangles being the major point that made their work stand out over that of others. Interestingly, Alzheimer also discovered what later became known as “Pick’s bodies” in what later became known as Pick’s disease or frontotemporal dementia. (The director of the clinic where Fischer did the bulk of his work was Dr. Arnold Pick, now famous for his work in the definition of FTD.)

The two scientists disagreed on a number of matters. For instance, Alzheimer took issue with Fischer’s theory that the plaques had a link with presbyophrenic dementia. While he agreed that plaques were a distinctive feature of senile dementia, he did not think that they actually caused the disease, as Fischer did. Alzheimer did actually give Fischer credit for helping to draw attention to plaques in the diagnosis of senile dementia. He considered that the cases of presenile dementia that he and Fischer had both described to be a sub-type of senile dementia, rather than an entirely new disease. Fischer also disagreed that a new disease was being reported. The two men differed in their opinion on the formation and the significance of the tangles.

So, why do we speak of Alzheimer’s disease, and not Fisher’s disease? In the years immediately following the work of both men, we do find references in the literature to “Fischer’s plaques.” Alzheimer himself actually used the term in a paper he wrote in 1911. The terms presbyophrenic dementia and Alzheimer’s disease were both in usage as late as 1949. However, by 1955, textbooks that had previously used Fischer’s name to denote the disease had been changed to use the term Alzheimer’s disease exclusively. Fisher’s work was reported as being obsolete.

Some credit other factors as playing a part in Fischer’s legacy. Despite teaching there for 17 years, Fischer was never awarded tenure at the German University, and in fact his appointment was revoked in 1939 as the university began to quietly remove all Jewish faculty in anticipation of the Nazi take-over. Fischer attempted to continue a private practice until 1941, when he was arrested by the Gestapo. This eventually led to his imprisonment and death in a Nazi concentration camp in 1942. The German University, where he had done so much work, was likewise closed down in 1945. Fischer did not have any students who continued his work, as Alzheimer did.

By contrast, Alzheimer worked under Dr. Kraepelin, who not only named the disease after him, but was also one of the most influential psychiatrists of his time. The Munich institute continued for many years, and when Alzheimer ceased his work there in 1912, he was succeeded by Spielmeyer, one of the most respected histopathologists of his time. It has also been speculated that, because the schools where the two men worked were rivals, Kraepelin was quick to gain recognition for his school as well as for Alzheimer. However, even though Kraepelin coined the term Alzheimer’s disease in 1910, it was not until the 1970s that the term became widely used to describe patients with senile dementia. “Presbyophrenia: the rise and fall of a concept”
“Oskar Fischer and the study of dementia,” by Michel Goedert, in Brain, 2009, 132.
“Oskar Fischer,” Wikipedia
“Prague: What Say You, Alois – Should it be ‘Alzheimer-Fischer’ Disease?” Gabrielle Strobel,

Dementia and Schizophrenia


confusedFrequently, in my practice as a speech-language pathologist, I have encountered individuals who carry a diagnosis of dementia as well as a psychiatric disorder such as schizophrenia.  I’ve often wondered which came first — kind of a “chicken or the egg” type of question.  So today I decided to do a little research, and I thought I would share with my readers a little bit of what I found.  I’ll start with a brief discussion of the early work of classifying schizophrenia as a distinct disorder, leading up to how the two disorders have been found to be distinct from each other, and yet at times connected.  Please bear in mind that I am not a psychologist or psychiatrist.

History is full of descriptions of people who appeared to show symptoms consistent with what we now call schizophrenia.  In 1886 a Swiss physician named Heinrich Schule, who worked in an asylum, described a disorder which he termed dementia praecox (early-appearing dementia).  He used this term to refer to individuals who showed symptoms of an acute dementia early in life, seemingly hereditary in nature.

In 1899, Emil Kraepelin differentiated between dementia praecox and mood disorders, arguing that dementia praecox was caused by a metabolic process which began relatively early in life and affected the entire body, eventually leading to significant deterioration and loss of function.  Interestingly, this was several years before Alois Alzheimer described the form of dementia which later came to bear his name.  Kraepelin pointed out that dementia praecox primarily affected younger patients, whereas Alzheimer’s disease was found mainly in the elderly.

A number of physicians and other researchers continued the work of describing this new disorder, and differentiating it from other maladies.  Eugen Bleuler first coined the term schizophrenia in 1908, in an attempt to describe the separation of function between personality, thinking, memory, and perception.  He reasoned that the disorder was not a true dementia, as some of his patients improved rather than deteriorated.  Work has continued in this area, until now dementia and schizophrenia are generally regarded as two distinct disorders.

That said, it has long been recognized that cognitive impairments can exist in persons diagnosed with schizophrenia.  In May of 2000, a study was conducted to determine whether this phenomenon was due to the schizophrenia, or to a separate dementia-causing illness.  A group of institutionalized patients who were diagnosed with chronic schizophrenia were identified, aged 65 years or younger, who did not display any organic risk factors for dementia.  They were screened for the presence of disorientation, and those who showed this trait were studied further — neuropsychological testing, physical examinations, and neuroimaging, as well as a description of behaviors by caregivers.  In every case where a study participant was identified as having disorientation, the presence of a separate entity causing the cognitive symptoms was identified, of a type similar to frontotemporal dementia, with pervasive deficits in memory and executive function noted in particular.

Other experts report that schizophrenia may lead to a true dementia in later life, either as a direct consequence of the disease itself, or as a reversible side-effect of medications used to treat it.  It has been shown that some persons with schizophrenia do demonstrate a progressive deterioration in the ability to perform basic activities of daily living.  Some individuals develop a form of cognitive impairment many years after the onset of schizophrenia, which is invariably terminal in nature (as with other forms of dementia).  Others show a form of dementia which may potentially be reversible, and is related to the psychopathology associated with periods of active schizophrenia.

Researchers showed renewed interest in the relationship between schizophrenia and dementia with the development of improved neuroimaging techniques in the 1970s.  Early studies showed that schizophrenic patients with long-standing significant intellectual impairments showed widespread cortical atrophy.  Subsequent post-mortem studies confirmed the loss of tissue in the anterior and mid-temporal lobes of the brain.

Chronic schizophrenia patients who also demonstrate dementia tend to show the following symptoms.  They often will underestimate their own ages, by about 5 years or more.  They show an overwhelming lack of initiative, at times spending hours in bed staring at the ceiling.  Orientation is often relatively intact, and they are usually able to respond appropriately to simple questions.  They often demonstrate involuntary movements of the head and face, or even of the entire body.

Some persons with schizophrenia are said to demonstrate a “pseudodementia,” especially in those who are significantly depressed.  Treating this depression with medication appears to remedy this situation in most cases.  However, it has been argued that these people should be treated as having dementia while the symptoms are present.

There are some cognitive symptoms which are judged to be characteristic of many individuals diagnosed with chronic schizophrenia, and which are not determined to be due to an accompanying dementia.  These symptoms include difficulties with attention and executive functioning, as well as learning and memory, with verbal knowledge and visual perception remaining relatively intact.

Research in all of these areas is currently on-going, with scientists continuing to work toward making more definite distinctions between the disorders of schizophrenia and dementia, as well as better identifying physical and cognitive characteristics of both conditions — and treatment of the same.  The significance for me, and for other rehabilitation professionals, is to understand that some schizophrenic persons can demonstrate symptoms that may indeed be related to a dementing illness.  A complete cognitive evaluation can provide information to assist the patient’s physician in making an appropriate diagnosis, and also assist in determining a plan of treatment.

Persons who have been diagnosed with schizophrenia, and their loved ones/caregivers, should also take note that physical/cognitive symptoms may or may not be directly related to the disorder.  Any change in behavior should lead to a consultation with the person’s physician, which may lead to further evaluation to determine the source of this change.  There are health care professionals who can help to develop strategies for dealing with this behavior, and helping to understand it.


Wikipedia:  History of Schizophrenia

Use of the Allen Cognitive Levels in Dementia Care


This is the system of dementia staging that I like best, and that best coincides with my goals as a therapist.  I’ve spent a fair amount of time studying it, and have tried to incorporate it into my daily work.  It was first devised by Claudia Allen, an occupational therapist, and her colleagues in the late 1960s, in their work with patients who had mental disorders.  The theory has been well-known to occupational therapists for quite some time, but in the last several years has gotten the attention of other disciplines as well.  Others have continued the research started over 50 years ago, and the field of dementia care has been transformed as a result.

One major hallmark of the Allen Cognitive Levels is their focus on the person’s remaining abilities.  So, rather than focusing on what the person can no longer do, we instead look at what they are still able to accomplish, and how we can use those abilities to enhance their overall function.  The six levels were initially conceptualized as a sequence of sensorimotor abilities something akin to Jean Piaget’s developmental levels of cognition.  As Allen observed the function of her patients and other individuals, she theorized that this same sequence was present in those with mental illness, dementia, and fatigue in adults.

As research continued, a test was devised which involved the use of three increasingly complex sewing stitches on a piece of leather, known as the Allen Cognitive Levels Screening (ACLS).  This measure was standardized in 1978, and successive studies established inter-rater reliability, as well as correlations between the ACLS and other standardized psychological assessments.  The standardized directions for administration of the ACLS were first published in 1985, and have been revised several times since then.  In 1992, an alternate form of the test was made available for those with visual impairments and impaired hand function.

The original six cognitive levels have been expanded to include a number of different sub-levels, or modes, for each.  Additional assessments, as well as publications further delineating the levels and how to use them therapeutically, have been (and continue to be) produced by a number of individuals.  Currently, the cognitive disability model first proposed by Claudia Allen and her colleagues are being utilized by therapists working in the fields of mental health, forensic psychology, rehabilitative medicine, and geriatric care.  These professionals use the model to develop functional goals for individuals in a wide variety of settings.  But, regardless of where they are used or who uses them, they have proven invaluable in helping individuals maintain a sense of optimism (and realism) in their daily lives.

I was taught to look at the Allen Cognitive Disabilities Model as an explanation for how our brains process information.  One of the key concepts utilized is that of “functional cognition,” which takes in both what our brains pay attention to, and how it determines what it needs to in order to enable us to do certain tasks.  Through use of this model, we can learn more about how the person’s brain, through processing the signals it receives from the environment, controls his actions.  To a large extent, this is determined by what parts of the environment his brain pays attention to.  Hence, by analyzing how the person perceives the environment, and using that information, we can enhance his behavioral responses to that environment.

This is a very cursory explanation of how the model works, but I hope it’s enough to give the reader some understanding of the Allen Cognitive Levels, which I describe below.

There are six levels in the Allen model, as in another commonly-used system of dementia staging.  However, whereas that other system considers an individual functioning at level #1 to have “normal” cognitive functioning, the Allen model reverses that and ranks that same individual as being at level #6.  In addition to the basic six levels, the Allen model also describes 5 “modes,” or sub-levels, each one further describing the brain’s movement from one level to the next.

Allen Level 1:  Automatic Actions (The person at this level will require total care.)

1.0 — withdraws from stimuli (this is usually noxious, or unpleasant, stimuli)

1.2 — can respond to stimuli (this can be pleasurable stimuli)

1.4 — can locate stimuli (tries to determine where the stimuli is coming from)

1.6 — can move around in bed, usually without a specific purpose

1.8 — can raise body parts voluntarily

Level 2:  Postural Actions  (The person at this level will require maximum to extensive assistance, with constant cues.)

2.0 — can overcome gravity (can sit up without support)

2.2 — can stand up

2.4 — can walk, with support

2.6 — can walk to a particular location

2.8 — can use environmental objects for support

Level 3:  Manual Actions  (The person at this level will require moderate to limited assistance, with constant to intermittent cues.)

3.0 — can grasp and release objects with a purpose

3.2 — can determine how to correctly grasp different objects

3.4 — can sustain actions on objects

3.6 — can identify the effects his actions have on objects

3.8 — can use all objects and all senses to complete an activity (even if there may be errors in that completion)

Level 4:  Goal-Directed Activity (The person at this level will require minimum assistance, or close supervision.)

4.0 — can sequence self through the steps required to do simple, familiar activities (regardless of quality)

4.2 — can make distinctions between the component parts of an activity

4.4 — can complete a goal (with good quality)

4.6 — can scan the environment

4.8 — can memorize and learn steps of a new task

Level 5:  Independent Learning Activity (The person requires distant supervision for novel activities, or will be independent for familiar activities.)

5.0 — can understand the primary effects of his behavior, but not always the possible consequences, and can learn to improve that behavior

5.2 — can learn to improve the finer points of his behavior, and its consequences

5.4 — can learn independently

5.6 — can consider social norms, as well as the secondary effects of behaviors

5.8 — can take into account other people’s opinions on behaviors

Level 6:  Planned Activities (The person is independent in all things.)

To fully understand what these levels mean for the individual, and to determine how to use them to improve that person’s life, requires a more in-depth analysis, as well as a more detailed explanation of what each level means.  I hope to give more information about these things in future posts.  However, there are many other resources that will also provide information, and I will be pointing to them as well.

Why Therapy For Behavior Problems?


emotiguyBehaviors are things that we do.  Those who work in the rehabilitation field — physical, occupational, and speech therapists, recreational therapists, and others — work with behaviors all the time.  I might teach a person who has had a stroke what to do when he can’t think of the word he wants to say.  An occupational therapist might help that same person learn how to button his shirt with one hand.  And a physical therapist might show him how to do exercises to make his leg muscles stronger.  These are all aspects of our professions that most people are familiar with.

Therapists occasionally encounter people who wonder what therapists can do for someone with dementia.  Well, we can address behaviors with this population just as we might with any of our patients.  Sometimes that might mean teaching a person a new behavior — for example, I might help a man learn to use strategies for remembering his daily routine.  Or an occupational therapist might help him organize his medications, so that he can take them properly.  This kind of therapy usually takes place in the early stages of the disease process, and is designed to help an individual live independently for as long as possible.


But there comes a time, in the progression of the disease, when the individual with dementia is no longer capable of learning new behaviors.  That doesn’t mean the person is stuck, doomed to stay where he is or descend into a bottomless pit of despair and lack of function.  It does mean, however, that often the goals of our therapy will need to focus on helping the person retain what skills he still has, for as long as possible, and adapt to the demands of his environment.  Many times this is accomplished by modifying this environment, or by teaching caregivers how they can best support the person with dementia.  This might be by helping them to break down a task into discrete steps, or it might be learning the best way to cook for someone who has no teeth.

There is another kind of behavior that we are often called upon to deal with, however. Sometimes the person with dementia will exhibit behaviors that we would like them to stop, or at least be controlled to some extent.  These can include wandering, rummaging through other persons’ belongings, striking out at a caretaker who is trying to give a bath, asking repetitive questions, and other similar actions.  It’s not uncommon, in a long-term care facility, for the therapy department to get a request from the nursing staff, for example, to see if we can get Mrs. Jones to stop yelling for help and use her call light.

Usually, one of the first steps in handling one of these undesirable behaviors is determining why it is occurring.  This involves gathering historical information, looking at reports from his physician as well as any lab-work, completing a cognitive evaluation, talking to caregivers to determine what has been done in the past, and any other evaluations that might be pertinent to a particular case.  Then we might try various strategies, to see which ones have a positive effect.  We might also make referrals to other professionals, such as a physician or an audiologist.

I once heard a statistic that 95% of behaviors were a form of communication.  Some of the messages that a person might be trying to convey could include (1) expressing a need or a want, such as going to the bathroom, (2) telling caregivers that he is in pain, (3) indicating a desire to leave a situation, (4) stating that he is confused about something, or afraid, and (4) making an attempt to socialize.  For example, the woman who is sitting in her room calling out may have forgotten how to use her call light, and needs someone to help her to the bathroom.  Or perhaps she has a toothache.

Sometimes behaviors can manifest as remnants of old habits or personality traits.  I once knew a woman who, when she was younger, worked two jobs and was always busy doing something.  I met her when I was asked to help find a way to stop her incessant wandering from place to place, as if she was looking for something.  Another woman was asked to leave one facility, because she would wander into other residents’ rooms at night.  But what we discovered was that she had been a nurse for many years, working the night shift.  Something compelled her to continue making her rounds, making sure that everyone was in bed and safe.  Since she never bothered anyone and trying to make her stop only upset her, the staff decided to allow her to continue her routine, watching her from afar, and helping her back to bed when she was finished.  They even made up a mock chart for her to look at, and write in, and this would keep her busy for hours.

Now, I’m not trying to say that therapists are the only people who can figure out how to deal with these problems.  Yes, we do have training in how to deal with physical and cognitive issues that our patients demonstrate.  But quite often I’ve encountered caregivers, whether they be family members or nurse’s aides, who have spent a lot of time with the individuals who have dementia.  And many times they instinctively know how to address the problem.  Often I’ve learned as much from them as they have from me.  However, in a long-term care facility, that aide who is so perceptive has a dozen other residents she has to deal with, and sometimes she just doesn’t have the time to spend trying one thing and then another, to find something that works.  And, too, it often ends up being a group effort.  More than once the speech therapist, the occupational therapist, the aide, the daughter, and sometimes even the housekeeper, all put their heads together to come up with a workable solution.

So, the next time you see a person with dementia who is doing something that you feel is not appropriate, or that causes a problem, remember that there are a number of people who are willing and able to act as a resource.  Maybe you’ve tried everything you can think of to remedy the situation.  Or maybe you’re just so busy with your job and your family, and other matters, that you can’t take the time to figure out why Grandma won’t let you give her a bath.  Too many times, the easiest answer to such problems is to give Grandma a pill, when it could be that the water is too cold, or she thinks that the mirror over the sink is a window and she worries that someone will be watching her.

What is Retrogenesis?


Retrogenesis is a term that has been applied in recent years to dementia — Alzheimer’s disease in particular — to describe the progression by which a person loses skills.  A great deal of work on this concept has been done by Dr. Barry Reisberg and others over the last 30 years.

When a child grows and develops, from infancy onward, it passes through a series of well-documented landmarks or developmental milestones.  These have been studied in detail, and it is possible to determine how far along the child is in her development by observing and measuring certain behaviors, and comparing them to landmarks demonstrated by other children.  An example of an early landmark is the ability to hold her head up independently, and these progress through the ability to sit up, to eat solid food, to walk, to speak, to perform complicated mathematical operations, and so on through to adulthood.  It is possible for a person who is familiar with these landmarks to predict what stage a child will progress through next, and if she is developing at an expected rate.

Dr. Reisberg and others have been able to demonstrate that persons with certain forms of dementia, including Alzheimer’s disease, lose skills in the reverse order that they are developed by children.  For example, a person with dementia may lose the power of abstract thought, and later the ability to dress herself, followed by the ability to feed herself independently, and so on.  Certain behaviors exhibited by the individual have been shown to correlate with specific stages of dementia, so that it is possible to predict what skills she will have difficulty with next.  This applies not only to physical function, but also to thought processes.

There are occasions, however, in which a person with dementia will not show a pattern of regression that is totally in line with what would be expected. This can usually be credited to other disease processes that might be present in the individual.  For example, if she has severe rheumatoid arthritis, she might lose the ability to walk independently sooner than might be expected.

The similarities between the acquisition of skills in childhood and the deterioration of those same skills in a person with dementia is observable not only in their order, but also in the temporal sequence.  Most children take about 20 years to develop from infancy to young adulthood.  Likewise, the interval from the time a person shows the first clinical indications of Alzheimer’s to the time they become totally dependent on others usually spans about 20 years.

It is possible to relate behaviors observable in a person with dementia to a specific developmental stage exhibited by a child.  This allows health care professionals to conjecture, on the basis of observable (and measurable) behaviors, those which are not readily apparent with regards to linguistic and emotional factors.  For instance, if an individual displays grooming skills equivalent to those typically seen in a 3-year-old child, it might also be extrapolated that she would understand language at the same level.  As a result, a caregiver might do well to keep instructions simple, and refrain from using too many abstract concepts.

There are some important points to remember, however, when considering the process of retrogenesis.  For one thing, while the person with dementia may show a regression in physical/functional, cognitive, and linguistic skills, she will not show an actual physical regression.  Therefore, while it is quite common for a person with Alzheimer’s, who is at the end stage (and near death) to show a grasp reflex such as might be seen in an infant, it is important to remember that the individual is still a 6-foot-tall man who worked all his life as a farmer — and quite likely has a very firm grip.  It is equally as important to remember that these individuals need to be accorded the same respect that would ordinarily be given to any adult.  Even if she may have the linguistic skills of a 5-year-old, it would be wrong to “talk down” to her.

It is not known why this retrogenesis occurs with Alzheimer’s disease and other dementias.  It has been theorized that the myelin, or white matter covering the axonal processes that extend out from the nerve is injured.  This myelin is produced continually through the life of the individual.  It may be that the myelin which develops later deteriorates first, with the older myelin breaking down later on in the process.


Hallucinations in Dementia


scratchWhen some individuals are in the mid to latter stages of dementia, it is not unusual for them to experience hallucinations.  (Although not everyone with dementia will experience hallucinations.)  Most often these are visual, but they can affect all of the senses.  They can be very upsetting to caregivers, and to the person with dementia, but I hope that by providing a little information about what is going on, as well as some suggestions for how to handle them, may be of help.  This information is taken from a fact sheet provided on the Alzheimer’s Society‘s website.

It should be noted that a person with dementia will experience changes in visual perception.  These are not actually hallucinations, but are instead “mistakes” made by the brain in interpreting (or making sense out of) what it sees.  One good example of this from personal experience — A resident of a long-term care facility once reported me that a particular nurse and aide were having sexual relations in her room on the night previous.  Even though it’s not outside the boundaries of possibility for such things to happen, I thought it highly improbable in this case given what I knew about the two people that were named.  What I eventually figured out was that the two staff members had come into the room during the night to provide care for the resident’s roommate, without turning on the overhead lights.  It was very reasonable for the woman to see two silhouettes moving around behind a curtain in low light, hearing them talking softly, and assume that another kind of activity was taking place.

Individuals with dementia may, at some point during the progression of the disease, experience difficulty expressing themselves.  They may have a hard time finding the words to describe what they are seeing.  It is important to keep this in mind when attempting to interpret a person’s story about his experience.  Note, too, that these persons may be particularly upset or frightened by hallucinations that persist for a long period of time or frequently.  Such symptoms can be particularly troublesome, both for those experiencing them, and for caregivers and others in his environment.  They can significantly affect behaviors and interactions with others.

A true visual hallucination involves seeing things that are not there.  They can be experienced by people who do not have dementia as well, often as a side effect of certain medications.  For instance, when I was coming out from under anesthesia after a recent surgery, I thought that my room was full of cats.  Persons with Lewy-Body Dementia are prone to a very particular kind of visual hallucination, often of small children or animals.  There are also some reports that those with LBD experience hallucinations at an earlier stage of the disease than do those with Alzheimer’s.

In our culture, hallucinations are often associated with mental instability, and so those who are experiencing them may be reluctant to report or discuss them.  They can be a temporary symptom, not causing any significant problems in the long run.  However, they may also indicate that there is a serious problem that needs intervention. A person who is having visual hallucinations may see only shadows or flashes of light.  Or he may see persons (known or unknown), animals, distorted faces, landscapes, or bizarre situations.  It should be stressed that there are other causes of hallucinations, including seizures, headaches, infection, and strokes, which may temporarily affect the portions of the brain controlling visual perception.  Other types of injury and illness, as well as some medications, can also cause hallucinations.  I have also known of persons who were near death to report seeing people and places, although my own belief system leads me to wonder if this is a true hallucination.  The causality of these manifestations should be investigated by the person’s physician.

Here are some other possibilities that need to be investigated, which might explain what the person with dementia is reporting:

1.  It’s not uncommon for persons with dementia to misinterpret what they see, due to lighting in the environment.  He may see a reflection in a mirror, or a photograph on the wall, as an intruder looking through a window at him.  I’ve seen a person think that flecks on the linoleum are insects to be swatted or picked up.  And a common strategy used to discourage wandering is to put a large black rug in front of a door.  Some individuals with dementia will see this as a large hole in the ground, and hence stay away from the door.

2.  It could be that the problem lies more in the person’s use of language, perception of time, or memory lapses.  For instance, it’s not uncommon for a person with word-finding problems to substitute one word for another.  And if a person has to go in search of a caregiver to report seeing something, he may not remember accurately just what it was that he did see.

3.  Consider a medical evaluation to determine if there might be some other reason to account for the hallucinations other than the dementia.

4.  Could the culprit be a medication side effect or interaction?

5.  Be sure that the person has had a recent check of visual acuity.  The solution may be as simple as needing new glasses.

Going back to the issue of visual perception, it is possible that the changes may be related to the normal aging process or to other health problems.  Some strategies that can possibly help here include:

1.  Ensure that the environment is adequately lighted.  This can also be beneficial in preventing falls, as well as other problems.

2.  Reduce shadows in the environment, or surfaces with busy patterns.  (I once worked in a facility where the floor in the therapy gym was patterned with dark stripes.  One of our patients very deliberately took large exaggerated steps over the stripes, seeing them as obstacles to be overcome.)  Some people may find mirrors and television screens a problem.  (For instance, one resident told me about the woman on the television who kept talking to her.)

3.  Be sure that the person’s eyes are checked regularly.  Also ensure that he wears his glasses, and that they are clean and in good repair.  (Are the glasses he’s wearing his, or do they belong to his roommate?)  If he has cataracts, perhaps consider the appropriateness of having them surgically removed.

Auditory hallucinations can involve hearing voices, or it can be a matter of hearing sounds or distortions of sounds where none exist.  They are actually rather rare in individuals with dementia, and are more commonly found in mental illnesses such as schizophrenia.  As with visual hallucinations, it is important to determine whether they might be due to illnesses other than dementia, or be caused by medications.  Make sure that the person’s hearing is adequate, and if his hearing aid is working.

Consider whether the person may be experiencing tinnitus.  This is a condition that is found in persons with increasing age, or who have certain health problems.  It is often perceived as hallucinations.  I am plagued with tinnitus myself, and I can vouch for the fact that it can be quite distracting.

One possible indication that a person may be having auditory hallucinations is if he appears to be having a conversation with someone who is not there.  Be careful, though.  It’s not uncommon for “normal” people to talk to themselves from time to time.

A person is less likely to have auditory hallucinations, or pay attention to them, if he has company.  One possible strategy for dealing with this symptom is to provide a companion for the person, or give him something else to listen to — such as a television or radio.

Other, less common, sensory hallucinations include gustatory (taste), olfactory (smell), and tactile (feeling something on or under the skin or in the mouth).  Again, it is important to determine if there is another possible explanation for what the person is reporting.  Many medications can alter the person’s sense of taste or smell, or can alter the person’s ability to sweat.

Some people do experience hallucinations that affect multiple senses at the same time.  It should be noted that this condition is usually due to a serious toxic or infectious illness, or can be experienced due to acute involvement of alcohol or other medications.  It is usually a medical problem that should receive immediate attention.

If you suspect that a person is actually hallucinating, try to engage them in a calm and reasoned conversation about what they are experiencing.  Is the person able to tell you what it is that they are seeing/hearing?  Can he understand that this is not really happening?  At some point, however, it’s going to be unlikely that you will be able to reason with the person, and any effort to do so will be met with argument and irritability.  This isn’t constructive, and can lead to an outbreak of temper on one or both sides.

Sometimes the best approach is reassurance, with distraction.  Stay with the person, and try to calm him down if they’re frightened or agitated.  Change the lighting, turn on/off the television, take him to a different room, or provide him with some activity to otherwise occupy their attention.  If the hallucinations involve multiple senses, if they are severe or causing the person a great deal of fear, or if they frequently recur or elicit extreme behavioral responses, consult a physician.  If you do decide to seek medical advice, be sure to let the doctor know about the following:

1.  Observe, and take accurate notes about what the person reported seeing or sensing, when it occurred and if there was a particular event that happened prior to it, where it occurred, how long it occurred, how the person responded, and the words that were used to describe it.

2.  Current and recent medications (including self-prescribed ones)

3.  Recent and past physical health problems

4.  Recent bereavements or other emotionally upsetting events

5.  Information about visual or hearing acuity problems, and glasses or hearing aids

6.  Use of alcohol or other recreational drugs, including overdoses

For Fat Patients and Their Doctors


This doesn’t pertain to the topic I usually write about here, but I thought it very informative and useful. Please be sure to read to the end, and check out the research studies cited.

Dances With Fat

If you are here for the evidence list, it’s at the end of the post!

Two patients have high blood pressure.  One is thin, one is fat.

The thin person goes to the doctor and receives recommendations for interventions that, evidence shows, are likely to lower blood pressure.  When that person goes back for a check-up, the doctor will test their blood pressure to determine if the interventions are working.

The fat person goes to the doctor, and research tells them that there is a greater than 50% chance that the doctor will view them as awkward, unattractive, ugly, and noncompliant, and a nearly 30% chance that the nurse will be “repulsed” by them.  (All of the evidence is linked at the bottom of this post)

The doctor recommends weight loss to “cure” the high blood pressure, but does not tell the person that the vast majority of the time people gain…

View original post 2,258 more words

What Is Digital Dementia?


smartphones(Originally posted 7/4/13 on my own blog.)  In the last few days, I’ve been reading about some interesting research coming out of the Balance Brain Centre in Seoul, Korea.  They have identified something called digital dementia, which a recent study was shown to affect some smartphone users and cause them to exhibit symptoms similar to those seen in other forms of dementia.

Smartphones have already been blamed for many ills.  These include addictions, cancer, and a decline in face-to-face social interaction.  These problems only increase as society’s dependence on technology grows with each passing year.

According to Dr. Byun Gi-Won, persons who use smartphones rely heavily on the left side of the brain.  The left side of our brain governs language, reasoning, and logic.  The right side, on the other hand, is responsible for creativity, concentration, and emotion.  This lop-sided use of the brain, so to speak, can result in a significant imbalance that leads to memory problems (particularly for details, such as telephone numbers), shortened attention spans, and emotional flattening.  The reduction in social interaction can lead to problems initiating or carrying on a conversation, or forming friendships.

It has been estimated that close to 20 percent of smartphone users are between the ages of 10 and 19.  Because the brain is not fully developed during this period, this places youngsters at a significant risk for negative effects which can become permanent and influence their academic, social, and emotional growth.  As many as 15 percent of this group is at serious risk of developing digital dementia.

Some experts have classified digital dementia as a form of early onset of a more lasting and serious form of the disorder.  However, a lot more research needs to be done before we can be sure about the long-term effects of this new condition.  It is recommended, however, that smartphone users consider the possible risks that can accompany a dependence on these devices until more is known about them.

Digital dementia has become so prevalent in South Korea that a number of clinics have been established to deal with the problem.  Experts have already called for internet addiction to be classified as a mental disorder; the emergence of this condition only intensifies the outcry for moderation of smartphone use.


Still a Hero, After All This Time


The article on heroes, posted earlier today, got me to thinking of a few of the heroes that I’ve encountered.  I work as a speech-language pathologist, in nursing homes, and have had the great privilege of coming into contact with a number of men AND women that I consider to be an inspiration to all of us.  At the very basest level, they are all excellent examples of the fact that all of these nursing home residents have a story to tell.  All of them have a rich history of experiences that we can learn so much from, if we only take the time to listen.

A few years ago, I met a man who saw his buddy killed, just feet from him, as they came ashore as part of the first wave of the invasion of Normandy.  Another man, along with his company, had the task of repairing bridges destroyed by the Nazis as they retreated from Italy.  Yet another joined the Marines at the tender age of 17, and participated in the evacuation of Americans from Saigon.  Then there was the 97-year-old gentleman who spoke so proudly of his experiences on Iwo Jima.  And so many more.

One thing stands out, for me, with all of these veterans.  So many years after their term of service to their country has ended, they are still displaying the courage and the concern for others that they did back then, sometimes as long as 70 years ago.  It shows in the way they deal with so many of the trials that they have faced over the years — the loss of friends and loved ones, strokes, crippling arthritis, dementia, and so many more.  There’s also a quality about them that’s hard to describe, that comes out in the way they deal with those around them.

Here’s a news story that I came across last year, and wrote about on my own blog.  It does such a wonderful job of illustrating what I’ve been talking about here.  Just a word of warning, though — you may want to have a tissue handy.  (The link does open in a new window.)


Dealing With Infidelity In the Nursing Home


couple(This was originally published on my own blog on 1/8/13.)  A year or so back, I remember there was some attention paid in the media to the case of the husband of Justice Sandra Day O’Connor, of the U.S. Supreme Court.  It seems that he was living in a nursing home due to dementia, and had a girlfriend.  There was some puzzlement in some facets of the media when it became clear that Justice O’Connor was not particularly upset by this situation.  She understood that it was the dementia which was prompting her husband to do things that he might not otherwise do, and chose to overlook his behavior.

This reminds me somewhat of a situation which occurred in a facility I was working in a couple of years ago.  The facility had a self-contained dementia unit.  There were three female residents of this unit who acted out sexually with a high level of frequency.  Most of this behavior manifested itself in verbal bantering with various male staff members and visitors, some of which got rather explicit.  And these men learned very early on how to avert any problems, either through ignoring the culprit or by re-directing her to some other, more appropriate, form of interaction.  But there was one male resident of the unit who often became the target of these women’s advances, and he was usually quite willing to respond in kind.  It was not unusual to see him sitting on the couch holding hands with one of these women, or with her leaning her head on his shoulder.  Sometimes two of the women were involved, one on each side, neither one exhibiting any kind of jealousy toward the other.

This was all really kind of cute to watch.  The staff carefully diverted those involved from taking their desires any further, smilingly suggesting that it was time for a snack or a trip to the bathroom.  One problem existed, though — the man in question was married.  But his wife wasn’t too concerned about the state of affairs, and more than once I would see her sitting in a chair across the public room from her husband who was holding hands with one of his “girlfriends.”  She told me, herself, that she knew it never went any further, and that her husband frankly didn’t even remember that he was married.  He was quite willing to spread his attentions around to anyone available, including staff members or his wife when she was present.  But he had also apparently forgotten how to take the relationship to the next step.

Earlier today, I came across a discussion of just such a “problem” in a publication called “Practical Ethics,” put out by the University of Oxford.  The paper describes the case of a man living in a Swedish nursing home, who has engaged in an on-going liaison with another of the home’s residents.  The man’s wife and children do not approve of this, and have asked the facility staff to keep them apart.  However, when the situation was brought up before the ethics committee of the National Board of Health and Welfare in Sweden, this body recommended that the staff not try to interfere in the relationship.  They stated that the man’s autonomy is more important than the wishes of his family.  In an earlier case, the same body ruled that it was inappropriate to medicate a man, and separate him from his girlfriend, despite his wife’s wishes.

One issue to be debated in such matters is whether these nursing home romances can be considered authentic, and whether they relate to desires expressed earlier in life.  The author makes it clear that he believes these residents do have autonomy, and are able to make choices for themselves.  However, can they be said to make the right choices if they consistently confuse another person with his/her spouse?

The question also arises as to whether a person with dementia can truly come to love a person, in a romantic sense.  Attraction from one person toward another can occur, certainly.  However, many believe that romantic love is an expression of the whole person, involving many levels.  And some will argue that a person at a certain level of dementia is not able to use his cognitive abilities at all possible levels.  And, there are recorded instances where a person’s affections and predilections are effected by neurological impairment.  For instance, there is a known case of a person with a brain tumor who showed pedophilic tendencies, which were eliminated once the tumor had been removed.

The point is made that some persons with dementia can be said to have regressed to an earlier stage of life.  If this is so, might not a person have also regressed to memories and personality traits from their youth, and act on these?  I’m going to quote a sentence from the original article, because it really made me think.  “If we cannot recall past promises (and cannot avoid forgetting them), we are not morally bound by them.”  Hmm, something to think about.  It is entirely probable that a person will have fallen in love and married, with every intention of remaining faithful to his/her spouse throughout life.  But, if people without dementia can change in this conviction, isn’t it all the more likely that those who are afflicted with the cognitive changes that take place in dementia might all the more discover that their prior determination toward marital fidelity might be altered?  And, is it really the place of a nursing home’s staff to enforce those marriage vows?

The issue was also raised of the possibility of making an advanced directive specifying that, for instance, we want the nursing home staff to ensure that we remain faithful to our spouses.  But can this carry the same kind of weight that an advanced directive has against a feeding tube, for example?  One thing about autonomy — it allows us room to change our minds.

I have to admit this article has caused me to think about some things, perhaps in a different way.  But, the fact remains that if the family of a nursing home resident — who has previously been determined to be mentally incompetent, requests that their father be discouraged from making romantic gestures toward a woman who is not his wife, there are some who will see it as their responsibility to do just that.  And I do feel it is the right of that same staff to take measures to prevent outward displays of sexual activity that might be upsetting to other residents.  (Like the woman I once knew who would often use her hand to pleasure her boyfriend, while sitting in the public areas of the facility.  In this case, the amorous couple was escorted to a room where the door could be closed to allow them some privacy.)

What do you think?  I’m curious to find out what others have experienced, or what opinions they hold on this matter.

Jami L. Hede,  M.S., CCC/SLP