Time and again, people newly diagnosed with these conditions describe feeling subsequently overcome by hopelessness.
In their new book, “Better Living With Dementia,” Laura Gitlin and Nancy Hodgson—two of the nation’s leading experts on care for people with cognitive impairment—argue forcefully that it’s time for this “cycle of despair” to be broken.
“There is no cure for Alzheimer’s but there are many things that can be done to make life better for people with dementia and their caregivers,” said Gitlin, dean of the College of Nursing and Health Professions at Drexel University and chair of the Department of Health and Human Services advisory council on Alzheimer’s Research, Care and Human Services.
Most people with Alzheimer’s and other types of dementia live at home—an estimated 70 percent. But few professionals inquire about patients’ living conditions, even though these environments play a major role in shaping people’s safety and well-being. (The remainder live in nursing homes or assisted living residences.)
More often than not, professionals don’t help families anticipate what to expect as dementia progresses. Left to their own devices, individuals with dementia and their caregivers “tend to move inwards and away from their communities, which fosters isolation, which worsens their sense of despair,” Hodgson said.
Attend to the Home
As people with dementia become more impaired, attention to their home environment needs to become a priority.In one study cited in Gitlin and Hodgson’s book, safety issues—cleaning agents under the sink, knives and other sharp objects, guns, and ovens that can be turned on and left running, for instance—were discovered in 90 percent of homes where people with dementia lived. Another study found an average of eight hazards in these residences.
Create a Routine
People with dementia need predictability and well-structured routines that minimize uncertainty and help them get through the day.“A routine helps people with dementia know what to expect,” Hodgson said. “That lowers their anxiety and stress and makes it easier for them to negotiate their environments. If change is introduced regularly, they’re just not going to do as well.”
After lunch, people may need to rest, but they shouldn’t nap too long. “You want to have some physical activity in the afternoon, as more and more research is showing the importance of exercise for people with dementia,” Hodgson noted.
Around sunset, it’s time for relaxation and helping people settle down. Playing music or lighting a scented candle can set the mood. Good sleep hygiene—no caffeine at the end of the day, darkness, quiet, and comfortable temperatures in the bedroom—is recommended at night, as sleep problems are common in people with dementia.
Know What to Expect
Individuals with dementia and their caregivers will find their needs changing as their illness progresses.Depression and anxiety may need to be addressed, as people struggle with the reality of a diagnosis, withdraw from work or social activities, and worry about the future. Finding ways to keep people engaged with meaningful activities starts to become a challenge.
When individuals progress to moderate dementia, they may need more supervision and assistance with dressing, bathing, grooming and taking medications. This is when families often hire caregivers if they can afford it. Communication may become compromised and problematic behaviors such as wandering, agitation, or aggression may emerge.
Often, someone with dementia is unable to express her needs and resorts to difficult behaviors. A person may be bored, afraid, in pain, constipated, overwhelmed or distressed, for example. To cope, caregivers are urged to try to understand the triggers for troublesome behaviors and take steps to address them.
In the final stage, severe dementia, people need sensory stimulation—a foot massage, music they enjoy, a fragrant bouquet of flowers. Addressing distress, discomfort and pain are key care challenges. Even if the person with dementia can’t acknowledge it, the presence of family and friends remains important. Throughout every stage of this illness, “it’s important to let people with dementia know that they belong and surround them with a feeling of warmth and affection,” Hodgson said.