Interprofessional Aspects of Dementia Care:
Working Together for Quality of Life

by Melinda Waldrop, MD, Alan Armstrong, MD, and
Suzann Ogland-Hand, PhD

As health care professionals working in a psychiatric setting, we often have to remind ourselves that a dementia like Alzheimer's disease is a neurological disease, and not a primary psychiatric disorder. Yet, in order to help persons with dementia and their family members work together for quality of life, collaboration among a variety of health care providers is critical.

Health professionals in the field of aging advocate for early diagnosis and treatment of dementia. Again, the hope is to maintain the highest quality of life for the person with dementia and their family members. By obtaining early diagnosis and treatment, persons with dementia and their family have time to adjust to the diagnosis and understand the illness as well as its possible impacts on the future.

Early diagnosis also allows time to plan for the future. Once a person and a family have accepted the diagnosis, families are able to do longer-term planning, in terms of legal, health, and quality of life issues.

Depression and anxiety are common for both persons with dementia as well as their caregivers. Early diagnosis allows for prevention and better management of these and other mental health conditions.

Early Diagnosis Is Very Important
The earlier the illness is diagnosed and treated, the better the outcome. Generally, persons with possible cognitive loss and their family members usually contact their primary care physicians. Someone may start to be aware of and concerned about a decline in their functioning or memory. Other times, family members are the first to notice a change in their loved one. Reversible causes of dementia do exist, so clearly the first step is to rule out the reversible causes. With early detection of a problem, the outcome is better for all involved. A dementia work-up is complicated and requires more time than spending a few minutes in an office setting with a doctor. Generally, a dementia work-up includes a very thorough history, as well as a number of laboratory studies and tests. A thorough history in the setting of dementia is a time consuming process. Health care professionals will rely to a great extent on the history provided by the family. Generally, blood work will be done to look at kidney function, liver function, lung function, sugar control, thyroid function, parathyroid function, vitamin B12 levels, and venereal disease. Other blood work will be performed if needed. Basic heart function is assessed by an electrocardiogram, and often a chest x-ray will be done to assess basic lung function. Brain structure can be evaluated with an x-ray (CT or MRI) to determine the possibility of a brain tumor, or other structural brain disease.

In dementia evaluation, the findings from these studies are often normal or considered "not clinically significant," meaning that reversible causes of dementia have been excluded. Currently, no diagnostic laboratory or blood test exists for Alzheimer's disease or many other types of progressive dementias. In research for dementia of the Alzheimer's type, autopsy is the only reliable diagnostic test because it can tell us the location and size of cell death in the brain.

Other syndromes may have Alzheimer's-like symptoms, including normal pressure hydrocephalus (water on the brain), under-active thyroid, multiple strokes, over-active parathyroid, low B12, and subdural hematoma (blood clot on the brain). Also, many different medical conditions may be accompanied by dementia, such as strokes, uncontrolled diabetes, uncontrolled hypertension, Parkinson's disease, Huntington's disease, Down's Syndrome, alcohol dependence, benzodiazepine dependence, anoxic events (prolonged lack of oxygen), and head trauma.

Your doctor is an important resource in determining the cause of the decline. If the presentation is unusual, or if the person with dementia or their family members are interested in learning more about the cognitive strengths and weaknesses, neuropsychological testing will better define the deficits in memory and cognition. If the decline is very subtle but suspicious for Alzheimer's, a physician might order a PET scan, which actually looks at brain function (rather than structure, which is seen in CT and MRI scans). Primary care physicians, psychiatrists and psychologists all offer expertise in the diagnosis and management of the behavioral disturbances associated with dementia.

MANY HEALTH CARE PROFESSIONALS:
TREATMENT AND SUPPORT
The course of dementia illness can be variable. In Alzheimer's disease, for example, it is described as an insidious illness, which means the starting point is difficult to determine. Thus, persons with Alzheimer's and their family members are rarely in agreement as to "when it started," exactly. The duration of Alzheimer's disease is typically about 7 years, but can be anywhere from 1 to 20 years. Various types of dementia have different courses.

It is important to become knowledgeable about whatever type of health condition you have, including which type of dementia you or your loved one has. Helpful resources include the Alzheimer's Association (even for dementia conditions that are not Alzheimer's disease), and websites with 'health condition' libraries such as Family Caregiver Alliance (www.caregiver.org; see "Facts Sheets & Publications" tab, and then select "Health Conditions.")

No medications to date have an effect on the underlying neurodegenerative disease, which means no cure for the disease of dementia currently exists. However, once an accurate diagnosis of dementia has been made, some medications exist that may be helpful. These few medications can sometimes help preserve a person's function and memory for a longer period of time, and reduce the symptoms of the disease. (See "Dementia Medications" on page 6) Again, the real goal of treatment is to improve quality of life.

Because the course of dementia is typically long, the potential strain that families may experience is dramatic. Thus, it is common to involve health care providers such as social workers or psychologists to discuss issues of stress management and how to prevent depression and anxiety, which are commonly seen. It may be helpful to access mental health professionals during the process of the dementia evaluation and work-up, as for many people, this can be a frightening time of waiting. Social workers or case managers may be good sources of community information, answering questions like: where do I find medical equipment? Is respite available? Who can help us with financial planning?

Attorneys with expertise in aging are helpful resources as well. We encourage all adults - those with dementia and those with no dementia - to have a power of attorney for health care in place. It's important for all of us to make our wishes known while we are able. A power of attorney for health care would be activated only when two physicians feel that a person is not able to make their own decisions. If a power of attorney for health care is not in place, and a quick decision is needed about medical care, families sometimes have to pursue guardianship, which is a time consuming and expensive process.

SPECIFIC AREAS OF CONCERN
Behavioral Problems
("Need-Driven Behaviors")
Some individuals are pleasantly confused in the later stages of a dementia, and unfortunately, others have severe behavioral problems, called "need-driven behaviors." These behavioral disturbances are the result of brain damage from the illness and not a primary psychiatric disorder. Comprehensive treatment includes medications and behavioral approaches. Physicians and psychiatrists tend to treat the cluster of symptoms of need-driven behaviors with medication. Careful thought needs to go into the choice of medications to minimize side effects and drug-drug interactions. There should also be an understanding of the effect on pre-existing medical conditions, the effects on a person's balance and potential fall risks, the cost, and a person's adherence to medication (that is, are they taking what is prescribed in the way it needs to be taken). A primary treatment rule with medication for seniors is to "start low and go slow" with medical trials.

Psychologists and occupational therapists are trained to address need-driven behaviors as well. Psychologists typically try to understand the links between the behavior, the person, and triggers in the environment to reduce a person's difficulties and maximize functioning. Occupational therapists are skilled at assessing the environment to maximize a person's function. Recreational therapists are very helpful in identifying leisure enjoyment and coordinating meaningful, enjoyable activity.

It is critical for various members of the health care team to collaborate closely together. They need to be aware of the "big picture," and how each member of the treatment team is contributing to help the person with dementia and their family members have a better quality of life.

Acute confusion ("delirium")
A question of medical illness arises when a person with dementia experiences a marked and rapid decline or sudden onset of behavioral issues. Often this sudden change, which is called "delirium," may be due to an identifiable problem such as an uncomplicated urinary tract infection, mild dehydration, pain, constipation, a common cold, a sore throat, itchy skin, or lack of sleep. Because a person with dementia already has damage to their brain, they can very easily experience acute confusion and become delirious. In delirium, the major treatable causes need to be considered. This usually means having diagnostic blood work, brain imaging, possibly x-rays, or other tests. Unfortunately, the delirium will often linger after the cause is resolved. So, seek help immediately if you notice a sudden change in yourself or your loved one with dementia.

WORKING TOGETHER FOR QUALITY OF LIFE
Dementia is a complicated and chronic problem. Therefore, it is essential that health care providers communicate and collaborate together in assessment and treatment over time. In most communities, high levels of communication, coordination and collaboration between health care professionals is uncommon. Care can be fragmented and not well-coordinated. The person with dementia often needs a family advocate. Also, once the diagnosis is made, people need to be in treatment centers experienced in managing these difficult conditions.

For a person with dementia and their family members, the illness is a challenging one. Choices have to be made that keep everyone healthy. With health care professionals communicating and collaborating, we work together for quality of life for the families we serve.