Dementia can be an emotionally painful and mentally taxing disease—for those who suffer from it as well as for those who care for the afflicted.
Despite the difficulties that dementia presents, caregivers can help patients feel more comfortable and more in control, and take care of themselves in the process, said nurse Carolyn Nystrom, with Ketchum-based Hospice & Palliative Care of the Wood River Valley.
Nystrom offered information about dementia, ways to recognize it and methods for coping during a Brown Bag lunch presentation Wednesday at St. Luke's Hailey clinic.
The good news and the bad news, she said, are that life spans continue to increase.
"We're living longer, so we're more susceptible to those illnesses in aging populations," she said.
Get informed, get support
Hospice & Palliative Care of the Wood River Valley in Ketchum maintains a library for community use that offers information on dementia, end-of-life decisions and other issues. The organization hosts a caregivers support group, which meets from 10:30-11:45 a.m. on the first Tuesday of every month at the Senior Connection in Hailey. Hospice doesn't charge for any of its services. For more information, call 726-8464.
However, she said, "dementia is not part of the aging process. Just because you're getting older doesn't mean you're going to get dementia. But it does mean you're more susceptible."
Forgetfulness is a normal part of aging; dementia is not.
Dementia—a term that includes many cognitive-loss conditions—is a disease. Alzheimer's disease is the most common type of dementia. While conditions in some types of dementia are reversible, Alzheimer's is a chronic, progressive, irreversible brain disorder caused by damage to nerves in the brain. There is no cure.
Many dementia sufferers have a sense that something is wrong with their memory, Nystrom said. Those in the early stages can hide it. But, as conditions worsen, coping methods may prove inadequate, leading to increased aggravation.
"A lot of people with dementia get very frustrated," she said. "Anything you can do to help them with that, ... to let them feel more in control is the key."
Dementia symptoms can include confusion and disorientation, impaired judgment, difficulty completing familiar tasks and mood changes.
"There are simple things you can do to make their life more comforting and less frustrating," Nystrom said.
One tactic to help the sufferer feel more in control in his home, and thereby bring down the level of frustration, is labeling cabinets and drawers with their contents, or, in later stages, placing pictures of contents on cabinet or closet doors.
Caregivers should help patients have a clutter-free and safe environment, Nystrom said, but without making big changes like buying new furniture. Keep living quarters as well as daily routines predictable.
Communication with dementia patients in later stages can require a different approach. Though it may be frustrating for a loved one to not get the same answers or reactions that he or she is used to, issuing commands may not yield positive results.
"Phrase things in a way that makes them feel they have a choice," Nystrom said.
For example, ask the patient if she wants to sit on the deck with family members or friends, rather than telling her she can't sit inside all day.
Frustration for everyone can lessen when loved ones allow a dementia sufferer to be in his world, Nystrom said, rather than making him be in yours.
"Have the relationship be the very best it can be at that level, whatever it is," she said.
If emotions take a turn for the worse, music can be effective in elevating someone's mood.
Dancing, singing or just listening to music can have a therapeutic effect.
"Music is really the ideal therapy for changing people's moods," Nystrom said. "Music is very powerful."
Care for the caregiver
Primary caregivers often are family members whose attachment to the dementia sufferer makes the disease's protracted toll especially difficult. But caregivers shouldn't neglect their own needs, Nystrom said.
"Caring for someone who has dementia is a real caregiving challenge," she said. "You really have to care for yourself."
Know your strengths as well as your limits, seek balance, acknowledge when you are frustrated or angry, and be grateful.
"The less stressed you are," Nystrom said, "the more creative you're going to be able to be in caring for this person."
Rebecca Meany: firstname.lastname@example.org