Many people think of dementia solely as a condition that causes memory loss.
That's one reason family caregivers may be so surprised and upset when older relatives start having major psychiatric symptoms such as hallucinations, delusions or paranoia, even though they are common features of dementia.
Another reason, said Linda Shumaker, a nurse who works with older adults with behavioral health problems, is that stigma has kept advocates and caregivers from talking openly about psychiatric problems that can increase stress and result in earlier placement in a nursing home.
Shumaker, who works as outreach coordinator for the Pennsylvania Behavioral Health and Aging Coalition, a Harrisburg-based group seeking better care for elders with mental illness and addictions, was a speaker at a conference this spring for dementia caregivers sponsored by the Alzheimer's Association. She believes that services are inadequate and that both professional and lay caregivers need more education.
Shumaker said that 70 percent to 90 percent of people with dementia have psychiatric symptoms at some point. Depression and anxiety are common early in dementia, and delusions and hallucinations can become frequent, especially in the later stages. Common delusions – false beliefs – are the idea that a spouse is having an affair or that someone is stealing from the dementia patient. People can also become aggressive or agitated, or engage in repetitive behaviors, such as dressing and undressing. Psychiatric problems occur in all types of dementia, although people with vascular dementia are at lower risk for psychotic symptoms and at great risk for depression. Hallucinations are among the first signs of Lewy body dementia, she said.
Depression may seem to be the least serious of those problems, but Shumaker says it should be taken seriously. It can speed the rate at which patients become unable to take care of themselves, and it contributes to caregiver burnout.
About half of people with dementia can get delirium, or sudden and severe confusion, she said. In that case, doctors should consider another medical cause, such as a urinary tract infection.
Even though all of these psychiatric problems are related to the brain damage that goes along with dementia, stigma still prevents many families from seeking help, Shumaker said. When they do, they may find there aren't enough geriatric psychiatrists to go around.
Olga Achildi, a geriatric psychiatrist who is in charge of inpatient and outpatient geriatric behavioral services at Pennsylvania Hospital, agreed that there is a "huge shortage" of geriatric psychiatrists. But delays in seeking help, she added, go well beyond stigma. Many families simply don't want to accept that a loved one has a progressive, deadly disease that affects the brain. Families go into "collective denial," she said. "They don't want to interpret somebody's agitation as a psychiatric symptom of dementia."
She urges caregivers to seek help before symptoms are severe. "The earlier that somebody seeks help, the better," she said, "because it's a lot easier to manage these psychiatric symptoms earlier on without them getting out of control."
She and Shumaker agreed that caregivers should keep in mind that many with dementia are not capable of reasoning. Fighting about a false belief may make a person cling to it more tightly. "You won't be able to say, 'Mom, I didn't steal your dentures,' " Shumaker said.
If a parent says something that sounds crazy, remember "it's the disease talking," she said. "You just say firmly, 'Mom, I'm not talking with you about that right now.' "
Achildi suggests changing the subject. "The easiest way to approach that is to try to roll with it and to try to shift the attention to something else that's not distressing," she said.
The sad thing about accusations of theft is that sometimes they're true, Achildi said. She likes it when family members work together to manage finances and make their work as transparent as possible. Frequent updates and records of financial transactions can keep some older people from jumping to conclusions.
Caregivers can try to figure out what is triggering a loved one's fears and strange behavior. "Behaviors are our most honest form of communication," Shumaker said. Many older adults become fearful when they're confused. That may lead them to strike out — literally.
"I can't tell you how many times I've been hit by an 85-year-old gentleman," she said. "He doesn't understand what you're doing so he's hitting you." When someone is acting out, think about possible unmet needs. Does he need to go to the toilet? Is he in pain? Is he missing someone?
Although antipsychotic drugs are not recommended for this population due to side effects, other medications can help, Shumaker said. Some people may need more intensive attention in an inpatient unit.
Charles Altman, a general psychiatrist who is medical director of Chestnut Hill Hospital's senior behavioral health program, said patients come to his 20-bed unit at "pivotal moments" when family members are overwhelmed. People with dementia start "throwing punches," calling 911 every night or staying up all night. Some become extremely paranoid. Sometimes there's an underlying medical cause that can be addressed quickly. At other times, medications can improve dementia-related behavior enough that family members can keep someone at home another year, postponing the need for nursing home care, he said.
Miguel Aguilo-Seara, a neuropsychiatrist who is medical director of Haven Behavioral Hospital of Philadelphia, a 36-bed geriatric psychiatry facility, said diagnosing elderly patients with behavioral problems is complex. Although some symptoms look like mental illness, he said, they actually are caused by dementia and don't respond to drugs usually used to treat, say, psychosis. On the other hand, people with dementia can also have such mental illnesses as depression. And, people who have had schizophrenia all their lives can also develop dementia.
Some families find that the dementia-related behaviors are too difficult to manage at home and move their relatives to assisted-living facilities or nursing homes with special expertise in memory care, Aguilo-Seara said. "The most important thing I tell the families when they want to keep the patient in their house," he said, "is you need to keep a simple routine."
Shumaker offered some tips for managing problems, either at home or in an institution.
Maintaining social contact is important, Shumaker said. Some people respond well to structured activities, such as time in an adult day-care program.
Good sleep hygiene is crucial. Dementia patients should go to sleep and wake up at the same time every day. Avoid caffeine and alcohol. Spending time outside can tune circadian rhythms. Try to avoid sleeping pills, but melatonin can help some people.
Music can soothe agitation. A lifelong reader may respond well to being handed a book, even if that person won't read much of it. Many enjoy reminiscing. If someone is fearful, consider what's on the television. You might need to change channels or unplug it completely.
Choice is a big one. Let people do what they can still do. The less productive and powerful they feel, the more likely they are to experience depression or apathy. "I don't care how impaired the individual is," Shumaker said, "they can decide whether to wear a pink or a blue sweater or what pair of shoes."