“Pray, do not mock me:
I am a very foolish, fond old man,
Fourscore and upward, not an hour more nor less;
And, to deal plainly,
I fear I am not in my perfect mind.
Methinks I should know you, and know this man;
Yet I am doubtful for I am mainly ignorant
What place this is; and all the skill I have
Remembers not these garments; nor I know not
Where I did lodge last night ...”
— King Lear, Act IV, Scene 7¹

This quote from King Lear is analogous to many individuals’ accounts of experiencing dementia. In his first-person account, Losing My Mind: An Intimate Look at Life with Alzheimer’s, Thomas DeBaggio wrote, “I sense reality slipping away, and words become slippery sand … my life is turning into a dun-coloured kaleidoscope.”²

Symptoms of dementia are devastating both to the individual diagnosed with a condition and those who are involved in the individual’s life. Dementia negatively impacts daily activities, communication, cognition and interpersonal relationships. Additionally, dementia and conditions associated with it have a significant time and financial impact on caregivers and represent a major utilization of healthcare dollars and resources. Between 2005 and 2009, the worldwide cost of dementia increased by 34%.³

Dementia is increasingly more evident in our lives — personally, professionally or both. According to the 2010 Facts and Figures Report from the Alzheimer’s Association,⁴ one in four Americans knows someone with a form of dementia, and one in 10 individuals has had a close or distant relative with a dementing condition. Alzheimer’s affects more than 5 million Americans and their loved ones, and by 2050, this number is predicted to increase to 13.5 million. Alzheimer’s disease (or complications due to the disease) is the seventh leading cause of death in the U.S. One in eight people age 65 and older (13%) will have Alzheimer’s disease. Additionally, dementia impacts the family caregivers and costs associated with healthcare. There are also an estimated 11 million family members providing unpaid care to a person with dementia. Therefore, family caregivers need support and training from skilled and knowledgeable practitioners. Those individuals diagnosed with dementia are higher users of the healthcare system and are more likely to have extended or repeat admissions to acute care hospitals, skilled nursing care facilities and home healthcare agencies. As the baby boomers age and the population grows, the number of individuals with dementia will also incrementally increase.⁵ These increases speak to the need for additional skilled practitioners to work with these individuals. Research shows individualized therapy intervention is effective for both caregivers and clients diagnosed with Alzheimer’s disease.⁶

Diagnosis of Dementia

Dementia is a term used to describe an aggregate of conditions and symptoms that affect brain functioning. The cornerstone for all diagnoses of dementia is the presence of memory impairment. According to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, dementia is the development of multiple cognitive deficits, including memory impairment and at least one of the following cognitive disturbances: aphasia, agnosia, apraxia, or a disturbance in executive functioning. Furthermore, these deficits must impair the individual’s daily functioning, such as his/her work or social interactions. However, a diagnosis of dementia cannot be made when the individual is experiencing delirium.⁷

Memory deficits are the hallmark of all dementias. This memory deficit may vary in severity or state of onset. Psychologist Larry Squire8 described memory systems as declarative and nondeclarative. Declarative memories include facts and events, world knowledge, vocabulary and autobiographical information. Declarative memory is often called explicit memory because it involves conscious, intentional remembering. Declarative memory stores and retrieves who, what, when and where information: the capital of a state or current President of the United States, for example. This is generally the type of memory that is lost or diminished with dementias, head injuries and amnesia. Nondeclarative memory, which includes procedural memory, overlearned habits and skills, location learning, conditioning and repetition priming, is the last in which an individual with dementia would show deficits. Examples of nondeclarative memory may include riding a bicycle, brushing your teeth, or driving to work without thinking about your route. Predominately, nondeclarative memory is non-conscious and more automatic, relying on performance instead of introspective thought processes. Therefore, this is an important memory system to access when working with those who have dementia.

Both expressive and receptive communication becomes impaired in an individual with dementia. The individual with dementia may exhibit the inability to name objects, recall names of people, or recall words during a conversation. Individuals will use filler words, such as “what’s-her-name,” “thing” or “whatchmacallit,” as they point to the item or act out a motion when they are unable to find the correct word. In later stages, language deteriorates to echolalia or perseveration — that is, repeating words, phrases or sounds. Eventually the individual becomes non-verbal. Receptively, as the condition advances, individuals have more difficulty understanding and responding to conversations and directions from caregivers.

Apraxia — the inability to perform a movement, especially when instructed to do a movement or simulate a task in the absence of a sensory or motor impairment, such as localized nerve damage — is exhibited in a variety of ways. Apraxia can be observed when an individual has difficulty putting on a sweater, brushing teeth or using a walker. Some types of apraxia are as follows:⁹

• Motor apraxia is the inability to perform movements necessary to use objects properly, although the names and purposes of the objects are known and understood.
• Dressing apraxia is the inability to dress due to a patient’s deficient knowledge of the spatial relations of his or her body.
• Ideational or sensory apraxia is the misuse of objects due to inability to perceive their correct use.
• Constructional apraxia is the inability to draw or construct two- or three-dimensional forms or figures and impairment in the ability to integrate perception into kinesthetic images.

Difficulties in executive functioning are often the precipitant to identify an individual who can no longer live alone and needs to move into a higher level of care, such as an assisted living facility. Using language from the Occupational Therapy Practice Framework, skills associated with executive functioning can include judgment, concept formation, metacognition, cognitive flexibility, insight, categorization, generalization, logical/coherent thought, coping and behavioral regulation.¹⁰ An individual with difficulties in this area no longer can manage his or her finances (e.g., pay bills), prepare meals safely, participate in household management that requires multiple steps or divided attention (e.g., grocery shopping or looking up a number in the phonebook and dialing that number). These individuals also have difficulty in shifting cognitive sets and responding effectively to novel verbal or nonverbal items (e.g., serial subtractions or trail-making tests).

Understanding the definition of dementia is important, but it is equally important to know differential diagnoses, the various types of dementias and the related symptoms. By having an appreciation of differential diagnosis and the different types of dementias and their primary symptoms and by using evidence-based practice as a foundation, therapists are better prepared to address the needs of individuals with dementia.

Differential Diagnosis

Generally, the therapy practitioner is a member of a treatment team when identifying patients with a differential diagnosis of depression, delirium or early signs of dementia. Symptoms common to depression, delirium and dementia can include impaired concentration, memory loss, apathy, sleep disturbance and confusion or disorientation.¹¹ This does not mean these conditions cannot be present at the same time. Sometimes individuals can have dementia and be depressed or experience sudden onset of delirium. The following describes the key characteristics of depression and delirium.¹¹

A depressed person may have a flattened affect, an indifferent or depressive mood, decreased physical activity, changes in appetite, dehydration, decline in personal hygiene or an increase in somatic complaints. The practitioner should determine whether the person recently experienced a loss (family member, friend or pet) or the anniversary of a significant loss. Relocating, such as moving to a new residence or changing rooms, can also bring on depression. Inquire about recent medication changes in case depression is a side effect, and ask if the person has stopped taking an antidepressant. Generally, depression is a gradual onset.

Delirium is generally characterized by a sudden or short onset of confusion, extreme disorientation, psychosis or agitation. In older adults it is most often associated with a cognitive change, such as confusion. Delirium may occur after anesthesia, a recent medication change, dehydration, bowel impaction, significant weight loss or malnutrition, extreme fatigue or loss of sleep, infection, exposure to toxins or poisons, and illegal drugs or alcohol.¹¹ In the older adult, the cause is often anesthesia or medication (prescription or over the counter). When a sudden change in behavior or cognitive status is observed, the patient should seek medical attention.

It is important the healthcare team identify whether a patient is experiencing depression, delirium or dementia. Delirium is often easily treated with timely identification. But when it’s left untreated, it can have lasting cognitive changes and can lead to additional medical problems. There are many successful interventions for treating depression in the elderly; however, detection and willingness to accept treatment are key to these success factors. Intervention for depressed older adults includes low-dose medication and behavioral and lifestyle changes.

Types of Dementia

Vascular dementia, formerly referred to as multi-infarct dementia, is a result of a reduced blood flow to the brain due to either blocked or ruptured blood vessels. Small, symptom-free strokes cause cumulative damage and death to neurons in the brain that, over time, may result in vascular dementia.¹² Vascular dementia is the second most common cause of dementia (after Alzheimer’s disease), and it affects men more often than women.¹² Symptoms are consistent with those associated with dementia and the location in the brain of the stroke (or multiple strokes). Vision deficits may include hemianopsia and peripheral visual field inattention.^12,13

Frontotemporal dementia (also known as Pick’s disease) is a degenerative disease affecting the frontal and temporal lobes. FTD affects social skills, emotions, personal conduct, and self-awareness. Deficits in these functions most often reflect damage to specific regions within the frontal and temporal lobes. Those with predominant frontal involvement display changes in affect, such as disinhibition, impulsivity or apathy; poor social behavior; distractibility; and agitation. Individuals with FTD have a general lack of insight to social behavior, nuances and pragmatics. Those with temporal deficits have issues associated with language, including expressive and receptive communication. Behavioral and personality issues may also be present. Memory is less affected. FTD tends to have a close genetic link.¹⁴

Huntington’s disease-related dementia is secondary to Huntington’s disease and like all dementias involves some degree of memory impairment. Huntington’s disease is an inherited disease transmitted genetically. Often there are personality changes that include progressive irritability, anxiety and depression. These individuals sometimes display psychotic behavior. Chorea movements are the hallmark of this condition, as observed in involuntary erratic, arrhythmic movements of the body, muscle weakness, clumsiness, and gait disturbances. These individuals often have issues with falling due to the movement disorder. Disorganized, incoherent speech may also be a symptom.¹⁵

Transmissible spongiform encephalopathies, also known as prion diseases, are a group of rare degenerative brain disorders characterized by tiny holes that give the brain a “spongy” appearance. These holes can be seen when brain tissue is viewed under a microscope. Creutzfeldt-Jakob disease is the most well known of the human TSEs. Symptoms include muscular incoordination, personality changes, and impaired vision, memory and judgment.¹⁶ People with CJD may also experience insomnia, depression or unusual sensations. Early signs include neurological symptoms such as unsteady gait, hallucinations, and sudden jerking movements. People with CJD also have an increased risk for falls. Cattle can get a disease related to CJD called bovine spongiform encephalopathy or “mad cow disease.”

Binswanger’s disease, also called subcortical vascular dementia, is caused by widespread damage to the deep layers of white matter in the brain. The damage is the result of thickening and narrowing (atherosclerosis) of arteries that feed the subcortical areas of the brain. Characteristics of this disease include psychomotor slowness, clumsiness and increased instances of falling. Affect is either observed as irritability or as apathy and/or depression. Decline in memory is present but not as profound as seen in Alzheimer’s dementia. These clients also have earlier signs of urinary incontinence than other dementia’s urinary symptoms. Diagnosis can sometimes be made by imaging and scanning the subcortical areas of the brain where the lesions would be evident.¹⁷

Dementia with Lewy bodies is a progressive dementia with ongoing cognitive decline. The symptoms are thought to occur because of the collection of Lewy bodies, accumulated proteins, in the nuclei of neurons in the brain. Dementia with Lewy bodies is often confused with Parkinson’s dementia. Individuals have Parkinson’s-like movement with rigidity only; tremors associated with Parkinson’s disease are not present.

Other important characteristics include progressive cognitive decline, fluctuations in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech; recurrent visual hallucinations; motor rigidity; and the loss of spontaneous movement.¹⁸ Early signs of this disease often go undetected, and the changes in alertness may be confused with tiredness. These individuals have a severe sensitivity to neuroleptics, such as haloperidol (Haldol); these types of medications can be fatal.

Because those in early Dementia with Lewy bodies experience visual hallucinations, this symptom is often used to distinguish this form of dementia from others.¹⁹ A systematic review and meta-analysis indicated that those individuals diagnosed with Dementia with Lewy bodies had significantly more profound visual-perceptual and attentional-executive impairments and less memory deficits compared with those individuals diagnosed with Alzheimer’s disease.²⁰ Practitioners working with these individuals should remember that, in the early stage of the disease process, they will have difficulty understanding and interpreting visual representations of objects/target items and the spatial relationship between those items. Visuospatial impairments are more evident in early Dementia with Lewy bodies than in Alzheimer’s disease; however, individuals with Alzheimer’s have a higher incidence of this condition when compared with the same age, healthy peer group.²¹

On the other hand, Parkinson’s-related dementia is relatively uncommon. Less than 50% of those diagnosed with Parkinson’s disease actually develop dementia. Generally, those who do develop Parkinson’s-related dementia have had Parkinson’s disease for 15 to 20 years. Common complaints of those with early signs of Parkinson’s-related dementia are slowness in thinking, difficulty with word finding, visual-perceptual difficulties with measuring distance and depth perception, and depression.

Alzheimer’s disease is the most commonly occurring dementia. There are approximately 5.3 million Americans living with Alzheimer’s disease today.³ Alzheimer’s disease can only be diagnosed once the etiologies, other types or reasons for dementia, are ruled out. The primary symptom is progressive memory loss. Other symptoms may include visual/spatial difficulty, language deficits, and behavior changes. Judgment and the ability to think abstractly are noticeably impaired. The disease is slow and progressive. Initial signs are forgetfulness, slight personality changes and possible changes in psychomotor functioning. Generally, basic self-care is intact in the early stages. In the moderate stage, more disruptive behaviors may appear and patients may have problems managing money, finding their way around the community, and managing medications. On a Mini-Mental State Exam (MMSE), an individual with Alzheimer’s disease generally will lose three to four points per year.

Vision is greatly impacted. In one study, patients with Alzheimer’s disease had an increased rate of visual inattention and impaired visual scanning.⁴ When engaged in “symbol” scanning tasks, research subjects used an unsystematic search pattern and demonstrated both omission and commission errors (incorrect responses). In this same study, those diagnosed with Alzheimer’s disease took more time on both the letter and symbol cancellations tests compared with the control group. This study showed that those with Alzheimer’s disease have visuospatial neglect, a symptom that could be related to damage in the left hemisphere, right hemisphere and bilaterally in both hemispheres. Spatial attention and peripheral visual scanning is described globally as visual exploration. The ability to scan and visual fix (fixation) on an object is necessary to read or locate objects. Individuals with Alzheimer’s disease have a marked impairment in saccades (scanning and fixing from one object to another), fixation, execution time (longer search time), visuospatial planning and problem-solving.^23,24 Results from studies like this can help direct our therapy sessions,²⁵ give us an improved understanding of how to set up activities for patients diagnosed with dementia, and teach us how to optimize our patients’ remaining abilities

Stages of Dementia

When therapists know the type of dementia, they are more informed and better able to understand the unique strengths, weaknesses and needs of a person. However, understanding the type of dementia is not enough: The stage of dementia the person presents is equally important since each stage presents differently. By aligning the person’s remaining abilities (strengths) with your understanding of the type of dementia, you are able to create a more successful intervention plan.

There are various scales or assessments available to measure and label the stage of dementia. Global scales are more efficacious in clinical trials and treatment for categorizing dementia than mental status and psychometric assessments.²⁶ Global scales are less influenced by factors such as education, occupation, practice effects, personal background, cultural factors and linguistic factors; are more sensitive in measuring the subtle changes of the dementia process; and have been found to identify improvements in functioning, such as improved cognition and functioning following medication.

As therapists using the Occupational Therapy Practice Framework, global scales provide us with the foundation to initiate a holistic assessment of a person. Reisberg initially defined global scales as assessing cognition, behavior and function; however, the more current definition of global scales states, “Global scales seek to assess clinically meaningful progressive changes in dementia based upon validated clinical markers of dementia progression. These may be comprehensive or multidimensional assessments, or clinical assessments of progressive dementia in terms of cognition and/or functioning.” For example, the popular global scale Functional Assessment Staging (FAST)²⁷ describes progressive changes that occur in dementias in everyday nomenclature that describe everyday function, including language such as progressive loss of the ability to put on clothing, to bathe (shower) independently, to toilet independently, to maintain continence, to speak and to walk. This is understandable language that professionals and caregivers can equally understand.

Conversely, the MMSE and psychometric assessments used for assessing dementia do not have that level of specificity to discern specific functional or cognitive losses, which is a strength of the global scales. For example, according to Reisberg’s research,²⁶ the Global Deterioration Scale (DGS) was found to identify changes due to medication intervention in patients with dementia from moderate to mild, whereas the MMSE did not have that same level of sensitivity to identify positive changes in the patients. Multiple research studies have demonstrated that global scales are more sensitive when assessing pharmacological interventions.²⁸ They are also more sensitive to identifying the very earliest sign of possible dementia — subjective cognitive impairment (SCI) or subjective cognitive complaints. According to research, older adults with SCI develop dementia (within 15 years) at a greater rate than those who do not have subjective complaints.^28,29 This is meaningful because global scales measure subjective concerns, whereas the MMSE and psychometric assessments do not. Additionally, practitioners are increasingly faced with clients presenting with mild cognitive impairment. The global scales are able to identify slight functional declines; however, the MMSE is subject to ceiling effects in the mild cognitive impairment stage.²⁸

There is a similar issue with the late stages of dementia. For example, global scales can distinguish gradual decline, which may last seven years and span two or possibly three stages over time, whereas the MMSE would rate that same person over seven years as a zero. Clearly the number zero tells a practitioner very little compared with the FAST, which would describe the person’s speech ability as limited to the use of a single intelligible word/word repetition and note the person’s inability to walk or sit up without assistance and the need for lateral supports or armrests. A final example as to why therapists should use global scales is that global scales use functional, meaningful, universally understandable language. Thus, they are more meaningful to caregivers. Someone at stage 5 on FAST would be described as someone who requires assistance in choosing proper clothing to wear for the day, season, or occasion; the same person on the MMSE would be scored at 12 to 14 and moderate dementia.

The chart is a side-by-side description of the Global Deterioration Scale and Functional Assessment Stages. The stages are described using functional language consistent with the language used in therapy.

Global scales are an effective tool for staging dementia and developing therapeutic intervention. These scales do not have the biasing factors of the MMSE, and these psychometric assessments and global scales are found to be much more sensitive and descriptive of subtle functional changes in the dementia process. We have explored the various types of dementia and have gained an appreciation for unique features of each of these dementias and how knowing these features will prepare practitioners to meet the needs of their clients diagnosed with dementia.