DIMENSIONS Summer 2008

Alzheimer's Care in the 21st Century

by Elizabeth Sharpe

Caring for someone with Alzheimer's disease (AD) is a difficult, often overwhelming responsibility. Caregivers often feel alone and unsure of how to handle what happens as their loved one enters advanced stages of this progressive, degenerative disease.

photo of Forum speakers Featured speakers Dr. Linda Teri and Dr. Murray Raskind addressed recent advances in care for Alzheimer's Disease at the 23rd Annual Public Forum on June 18, 2008, which airs on UWTV. Teri is professor and vice-chair of the UW Department of Psychosocial and Community Health as well as director of the Northwest Research Group on Aging. Raskind is professor and vice-chair of the UW Department of Psychiatry and Behavioral Sciences as well as director of the UW ADRC. The Forum, which has been held every year since the ADRC was first founded, offers the public a chance to hear about new evidence-based treatment being used for AD and a chance to raise concerns about the disease.

Alzheimer's disease affects nearly seven million older adults, and that number is expected to grow significantly as the U.S. population ages. The disease is characterized by an individual's loss of memory and language, lapses in judgment, and changes in personality, as well as behavior. Probably the most difficult for both caregivers and care recipients are disturbing behaviors, such as irritability, agitation, anxiety, depression, outbursts of anger, aggression, sleep disruption, and uncooperativeness with necessary care like dressing or eating. These behavioral problems increase as cognitive abilities decrease, explains Teri. Only 8% of people with mild cognitive impairment average three or more behavioral problems while 88% of people with severe cognitive impairment have three or more behavioral problems.

photos of Forum Treatment is necessary, as the behavioral problems may harm others as well as compromise care. Plus, the untreated behavior may contribute to disability as well as increase rates of brain decline. Agitation and anxiety, along with other distressing behaviors that become chronic and may be harmful, are traditionally treated with drugs. The ideal approach, said Raskind, would be to treat the abnormality in the brain the same way people with diabetes are treated-identify what chemical is lacking in the body and then supply it. But the biology behind the brain has not been understood well enough to find that single mechanism that causes agitation, for example, if there is only one, Raskind adds. So instead, drugs used to treat agitation are the same drugs found effective for other kinds of "mental" disorders such as schizophrenia and insomnia.

The problem, Raskind explains, is that these drugs haven't been tremendously effective in older adults with AD. In fact, studies done using randomized placebo-controlled trials found they were little more effective than a placebo (a placebo is also called a sugar pill because it isn't really a drug at all). Puzzling over this disappointing data, Raskind's research team wondered why a drug works to treat agitation in a patient with schizophrenia but doesn't work to treat agitation in a patient with Alzheimer's disease. If the same drug doesn't work for both, then what exactly is different about the brain of a person who has AD?

Through a series of studies, they found a possible answer. Alzheimer's disease damages or destroys brain cells called neurons. So, one suspected cause of agitation is the increased production of a neurochemical called norepinephrine by remaining neurons. The brain reaction to this neurochemical is a little like adrenaline surging through the body during a stressful event-it fires up the person's alertness, explains Raskind. If there are too many continuous "fires," then the person becomes agitated.

Raskind's team tested a commonly used drug for hypertension called prazosin that also blocks the brain's ability to respond to norepinephrine. Would it work to decrease agitation in people with AD, they wondered? In an eight-week-long initial placebo-controlled trial on twenty-one people with suspected AD and frequent agitation, the individuals taking the drug showed significant improvement when compared to the individuals taking the placebo. Although these results were promising, Raskind cautioned that more studies are needed, as are volunteers to participate in the studies. Although behavioral disturbances have historically been treated with drugs, other approaches becoming more common today are non-pharmacological-or non-drug-approaches to care. Increasing evidence shows that psychosocial interventions are effective. According to Teri, these interventions improve the quality of life for the person with dementia and the quality of life for the caregiver, too. More and more, this is the first type of intervention that should be used, before drugs are even considered, agrees Raskind.

Behavioral disturbances place enormous stress on the person with AD but also on the person's caregiver. It's when these behaviors seem "out of control" that the caregiver feels incapable of handling care for a loved one.

The caregiver often places the person in an institution, such as in a nursing home or in an assisted living facility. The goal of her work, Teri said, is to help give caregivers skills to deal with situations that often feel hopeless, decrease the burden of care, and delay the need to place the loved one in a care facility.

Building skills so that caregivers can deal with problem behaviors on their own is key to the protocols Teri has developed. These skills include communicating clearly and with compassion, increasing the number of interactions or events that are pleasurable, maximizing cognitive function with environmental supports and regular exercise, and problem-solving to prevent or stop the chain reaction that sets off problem behaviors.

In controlled clinical trials, Teri reported significant results of non-pharmacologic interventions. Depression in both the person with dementia and the caregiver improved. The physical activity of the person with dementia increased while physical frailty decreased, and the number of people with dementia who were institutionalized because of behavioral problems decreased.

But Teri cautions the protocols have limitations, too. They take significant commitment, time, and patience to make them work. The protocols can't just work in the clinic; they have to be able to work in the home. Even though Teri and her colleagues are working to develop manuals and to lead trainings to broaden access, learning these protocols still requires specialized training.

Ultimately, Teri and Raskind, as well as the other research teams at the ADRC, are working to develop strategies and techniques to overcome the disabilities that prevent people with Alzheimer's disease to enjoy life and to chip away at the burden that caregivers often feel.

So even with the disease looming ever more on the horizon, caregivers and the cared for can still get through difficult times, knowing there are options out there to help.

To find out more or to participate in research studies, contact the study director directly. For research study of prazosin for agitation in dementia, contact Lucy Wang, MD. Ph. 206-277-5089 or by email: lucy.wang@va.gov.

For non-drug research studies related to issues in dementia (NITE-AD Study, Memory Care & Wellness Study, and Early Stage Memory Loss Study), contact Amy Moore, Ph. 206-616-5550 or toll-free at 1-866-292-4464.

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