Category Archives: J.L Hede

Master’s Degree in Speech Pathology who has worked over 20 years with Dementia/Alzheimers

His blog:

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.