Training Persons with Dementia to Be Group. Activity Leaders
Who were the investigators, and what was the aim of the study? Dementia is marked by progressive and severe cognitive decline. But despite these losses, can people with dementia be trained to be group leaders? Most people might think the answer is "no," but Cameron Camp and Michael Skrajner (2005) decided to find out by using a training technique based on the Montessori method.
How did the investigators measure the topic of interest? The Montessori method is based on self-paced learning and developmentally appropriate activities. As Camp and Skrajner point out, many techniques used in rehabilitation (e. g., task breakdown, guided repetition, moving from simple to complex and concrete to abstract) and in intervention programs with people who have dementia (e. g., use of external cues and implicit memory) are consistent with the Montessori method.
For this study, a program was developed to train group leaders for Memory Bingo (see Camp, 1999a and 1999b, for details about this game). Group leaders had to learn which cards to pick for the game, where the answers were located on the card, where to "discard" the used (but not the winning) cards, and where to put the winning cards. Success in the program was measured by research staff raters, who made ratings of the type and quality of engagement in the task shown by the group leader.
Who were the participants in the study? Camp and Skrajner tested four people who had been diagnosed as probably having dementia who were also residents of a special care unit of a nursing home.
What was the design of the study? The study used a longitudinal design so that Camp and Skrajner could track participants’ performance over several weeks.
Were there ethical concerns with the study? Having persons with dementia as research participants raises important issues with informed consent. Because of their serious cognitive impairments, these individuals may not fully understand the procedures. Thus, family members such as a spouse or adult child caregiver are also asked to give informed consent. Additionally, researchers must pay careful attention to participants’ emotions; if participants become agitated or frustrated, the training or testing session must be stopped. Camp and Skrajner took all these precautions.
What were the results? Results showed that at least partial adherence to the established game protocols was achieved at a very high rate. Indeed, staff assistance was not required at all for most of the game sessions for any leader. All of the leaders said that they enjoyed their role, and one recruited another resident to become a leader in the next phase of the project.
What did the investigators conclude? It appears that persons with dementia can be taught to be group activity leaders through a procedure based on the Montessori method. This is important as it provides a way for such individuals to become more engaged in an activity and to be more productive.
Although more work is needed to continue refining the technique, applications of the Montessori method offer a promising intervention approach for people with cognitive impairments.
can consist of in-home care provided by professionals or temporary placement in a residential facility. In-home care typically is used to allow caregivers to do errands or to have a few hours free, whereas temporary residential placement is usually reserved for a more extended respite, such as a weekend. Research documents that using respite care is a help to caregivers (Roberto & Jarrott, 2008; Zarit & Femia, 2008).
Clinical Assessment, Mental Health, and Mental Disorders 387
Adult day care provides placement and programing for frail older adults during the day. The goal of adult day care is to delay institutionalization, enhance self-esteem, and encourage socialization (ElderCare. gov, 2005). Adult day care typically provides more intensive intervention than respite care. This option is used most often by adult children who are employed. In general, adult day care is an effective approach for caregivers (Roberto & Jarrott, 2008).
The demand for respite and adult day care far exceeds their availability, making them limited options. An additional problem is that many insurance programs do not pay for these services, making them too expensive for caregivers with limited finances. Clearly, with the increase in numbers of people who have dementia, ways to provide support for assistance to family caregivers must be found.
Other Forms of Dementia. As we have noted, dementia is a family of different diseases. We consider several of them briefly.
Vascular Dementia Until it was discovered that Alzheimer’s disease was not rare, most physicians and researchers believed that most cases of dementia resulted from cerebral arteriosclerosis and its consequent restriction of oxygen to the brain. As described in Chapter 3, arteriosclerosis is a family of diseases that, if untreated, may result in heart attacks or strokes. For the present discussion it is the stroke, or cerebrovascular accident (CVA), that concerns us. CVAs (see Chapter 3) result from a disruption of the blood flow, called an infarct, which may be caused by a blockage or hemorrhage.
A large CVA may produce severe cognitive decline, but this loss is almost always limited to specific abilities. This pattern is different from the classic, global deterioration seen in dementia. Numerous small cerebral vascular accidents can result in a disease termed vascular dementia. Vascular dementia may have a sudden onset after a CVA, and its progression is described as stepwise. This is in contrast to the slow onset
388 CHAPTER 10 and gradual progression of Alzheimer’s disease. The symptom pattern in vascular dementia is highly variable, especially early in the disease. Again, this is in contrast to the similar cluster of cognitive problems shown by Alzheimer’s disease patients. Most people who have vascular dementia have a history of cerebrovascular disease, and typical symptoms include hypertension, specific and extensive alterations on an MRI, and differential impairment on neuropsychological tests (a pattern of scores showing some functions intact and others significantly below average) that assess the ability to establish or maintain a mental set (i. e., the ability to keep focused on a particular task or situation) and visual imagery, with relatively higher scores on tests of delayed recognition memory (Cosentino et al., 2004). Individuals’ specific symptom patterns may vary a great deal, depending on which specific areas of the brain are damaged. In some cases, vascular dementia has a much faster course than Alzheimer’s disease, resulting in death an average of 2 to 3 years after onset; in others, the disease may progress much more slowly with idiosyncratic symptom patterns.
Parkinson’s Disease Parkinson’s disease is known primarily for its characteristic motor symptoms: very slow walking, difficulty getting into and out of chairs, and a slow hand tremor. These problems are caused by a deterioration of neurons in the midbrain that produce the neurotransmitter dopamine. Former boxing champion Muhammad Ali and actor Michael J. Fox are some of the more famous individuals who have Parkinson’s disease. Parkinson’s disease occurs in about 1 in 100 people over age 60, the average age of diagnosis, with less than 10% of cases occurring in people under age 40 (National Parkinson’s Foundation, 2007).
Symptoms are treated effectively with several medications (Parkinson’s Disease Foundation,
2005) ; the most popular are levodopa, which raises the functional level of dopamine in the brain; Sinemet® (a combination of levodopa and carbi – dopa), which gets more levodopa to the brain;
and Stalevo® (a combination of Sinemet® and entacapone), which extends the effective dosage time of Sinemet®. Recent research indicates that a device called a neurostimulator, which acts like a brain pacemaker by regulating brain activity when implanted deep inside the brain, may prove effective in significantly reducing the tremors, shaking, rigidity, stiffness, and walking problems when medications fail (National Institute of Neurological Disorders and Stroke, 2007). For reasons we do not yet understand, roughly 30% to 50% of the time Parkinson’s disease also involves severe cognitive impairment and eventually dementia (Schapira & Olanow, 2004).
Huntington’s Disease As noted earlier in the discussion of genetic testing, Huntington’s disease is an autosomal dominant disorder that usually begins between ages 30 and 45 (Sharon et al., 2007). The disease generally manifests itself through involuntary flicking movements of the arms and legs; the inability to sustain a motor act such as sticking out one’s tongue; prominent psychiatric disturbances
such as hallucinations, paranoia, and depression; and clear personality changes, such as swings from apathy to manic behavior.
Cognitive impairments typically do not appear until late in the disease. The onset of these symptoms is very gradual. The course of Huntington’s disease is progressive; patients ultimately lose the ability to care for themselves physically and mentally. Walking becomes impossible, swallowing is difficult, and cognitive loss becomes profound. Changes in the brain thought to underlie the behavioral losses include degeneration of the caudate nucleus and the small-cell population, as well as substantial decreases in the neurotransmitters g-aminobutyric acid (GABA) and substance P. As noted earlier, a test is available to determine whether someone has the marker for the Huntington’s disease gene.
Alcohol-Related Dementia Chronic alcohol abuse or dependence may result in cognitive decline, ranging from limited forms of amnesia or mild cognitive impairment to dementia (Kapaki, 2006).
The causes of these memory problems include deficiency of nutritional factors (such as B-complex vitamins) that cause Wernicke-Koraskoff’s syndrome, and/or other problems such as cerebrovascular disease. However, progressive cognitive impairment can occur in the absence of syndromes such as Wernicke-Korsakoff’s, and has been attributed to the direct toxic effect of ethanol on the brain.
One key symptom of alcohol-related dementia is confabulation, in which the person makes up what sounds to be very believable, but completely fictitious, stories that cover the gaps in memory. Other symptoms include personality changes (e. g., frustration, anger, suspicion, and jealousy), loss of problem-solving skills, communication problems (e. g., word-finding difficulty), and disorientation to time and place. Early in the course of the disease, the memory problems may be reduced or reversed if the person stops drinking alcohol, eats a well-balanced diet, and is given vitamin replacements (especially thiamine and vitamin B1). Thiamine, which limits some of the toxic effects of alcohol, is an important supplement for heavy drinkers.
AIDS Dementia Complex AIDS dementia complex (ADC), or HIV-associated encephalopathy, occurs primarily in persons with more advanced HIV infection (National Institute of Neurological Disorders and Stroke, 2008b). The virus does not appear to directly invade nerve cells, but it jeopardizes their health and function. The resulting inflammation may damage the brain and spinal cord and cause symptoms such as confusion and forgetfulness, behavioral changes (e. g., apathy, loss of spontaneity, depression, social withdrawal, and personality changes), severe headaches, progressive weakness, loss of sensation in the arms and legs, and stroke. Cognitive motor impairment or damage to the peripheral nerves is also common. Research has shown that the HIV infection can significantly alter the size of certain brain structures involved in learning and information processing. Symptoms include encephalitis
(inflammation of the brain), behavioral changes, and a gradual decline in cognitive function, including trouble with concentration, memory, and attention. Persons with ADC also show progressive slowing of motor function and loss of dexterity and coordination. When left untreated, ADC can be fatal. In the terminal phase of ADC, patients are bedridden, stare vacantly, and have minimal social and cognitive interaction. Because HIV infection is largely preventable, ADC can be reduced through the practice of safe sex.
1. How does depression in older adults differ from depression in younger adults? How do these differences affect treatment?
2. What are the characteristics of delirium?
3. What are the underlying causes and changes in Alzheimer’s disease? What can be done to help patients?