Getting by with a little help
Sara Larson and Nancy Swanson have had plenty of experience dealing with the effects of Alzheimer's disease and dementia - not only in their professional lives, but in their personal lives as well.
Larson, a senior resource specialist for St. Brigid's at Hi-Park, and Swanson, executive director of the Red Wing Senior Center, both have parents afflicted by degenerative brain disorders.
Caring for a family member with dementia can be a daunting and emotionally taxing responsibility. And with the number of diagnosed cases of Alzheimer's - the leading cause of dementia - on the rise, it is a task more and more Minnesotans will have to face in the coming years, according to a new report by the Alzheimer's Association.
There were 88,000 cases of Alzheimer's in Minnesota in 2000. That number is expected to increase to 110,000 cases by 2025, according to the March 19 report. Nationally, one-third of seniors have Alzheimer's or some form of dementia when they die.
Larson, whose father has Alzheimer's, and Swanson, whose mother has dementia, provide information and support to dementia patients and their families, both through their work and at monthly support groups held at St. Brigid's and the Senior Center.
With years of experience caring for people with dementia, Larson and Swanson have a number of tips for family members and friends taking on the role of caregiver.
Both Larson and Swanson agree that family caregivers should reach out to community support groups for help, even if that means opening up about personal struggles to strangers.
There is a stigma around degenerative brain disorders, Swanson added. "Children and spouses can get very protective and try to hide it," she said.
"If you're diagnosed with cancer, you'd be more than willing to tell your family and friends, and lean on your family to help you through it," Larson said. "But with dementia you just don't want to say anything or admit it."
Care for Alzheimer's patients often falls on family members and other unpaid caregivers. Nearly 240,000 Minnesotans provided 277 million hours of unpaid care for Alzheimer's patients in 2012, the Alzheimer's Association says. That averages to around 20 hours of unpaid care a week per caregiver.
"Coming to a support group is a chance for people just to vent and socialize," Larson said.
There is also a 24-hour, toll-free support line provided by the Alzheimer's Association to assist caregivers.
"That number is a godsend to a lot of people" Larson said. "If it's two o'clock in the morning and your loved one is driving you nuts and you don't know how to resolve it, call them - they're trained experts."
Find humor in sadness
The added stress of caring for someone with dementia can risk sapping the health of caregivers.
More than 30 percent of caregivers reported having symptoms of depression last year, according to the Alzheimer's Association. Caregivers also accrued $9.1 billion of health care costs nationally for themselves because of "the physical and emotional toll of caregiving."
Larson and Swanson said it is important for caregivers to manage stress by finding humor or enjoyment wherever they can.
"Try to enjoy the stories or the funny things that they do," Larson said. "If you find the milk in the freezer, you just have to laugh."
Larson said she has learned a great deal more about her father after listening to him tell stories from his youth, many of which she had never heard before.
"Sometimes they're just funny stories, and you can't help but laugh," she said. "If you don't laugh, you'd be crying constantly."
Don't sweat the small stuff
Caring for someone with dementia can be especially difficult if a loved one becomes uncooperative. Larson and Swanson said caregivers need to pick their battles to avoid arguments.
Using words like "no" or "don't" can make conversations confrontational, Swanson said. Arguments can add stress and frustration to an already difficult situation.
"If they don't want to eat their lunch, get them a piece of cake," Larson said. "Who cares? Caring for someone with dementia is all about quality of life."
When it comes to prohibiting activities or behaviors, Larson said it is a good idea to leave patients with a sense of control. For example, instead of telling a patient they can no longer drive, she suggested giving them a set of fake car keys or disabling the engine on their car.
"Just take it day by day," Larson said. "You never know what tomorrow will bring."
Keep the routine
Maintaining a regular routine is crucial for dementia caregivers, Larson and Swanson said.
"They like the same routine, and if things get thrown of, they'll get thrown off," Larson said.
Holidays can be the most difficult when it comes to keeping a routine. Family celebrations can bring more activity, flashing lights and rearranging of furniture.
"Hosting a holiday at their home is one of the worst things you can do for a dementia patient," Larson said. She suggested instead bringing the patient to a party hosted elsewhere and limit exposure to the increased stimulation.
Although the routine is important, it is still important to keep people with dementia active, Swanson said.
Calm activities like listening to familiar music or strolling through a garden are both good options, Larson said.
St. Brigid's at Hi-Park has a specially designed "calming garden" with gradually curving paths and tall grasses that can blow in the wind. Larson said the curves are important because sharp corners can make dementia patients feel like they might fall over the edges.
Taking dementia patients outside can be helpful, especially in long-term care or assisted living facilities, Larson said.
"Getting some sunlight can help reset their body's natural alarm," she said.
Learn 'therapeutic fibbing'
As dementia patients begin to lose their memory, they will sometimes start to inquire about deceased family members or pets. This puts caregivers in the difficult position of lying to keep from upsetting them.
It is called "therapeutic fibbing," Swanson said, adding that becoming comfortable lying was the hardest part of coping with her mother's dementia.
People have been taught their whole lives, especially by their parents, not to lie, so therapeutic fibbing can be a difficult tool to use, Larson said. But ultimately it is the lesser of two evils.
"If I were to tell a patient that their loved one died, they'll go through the grieving process all over again," Larson said. "What good does that do? That actually harms them, makes them sad."
Larson and Swanson said the key to therapeutic fibbing is to avoid outright lying by playing ignorant. For instance, if a patient asks about a deceased loved one, a caregiver can say they simply have not seen the person that day.
"It's not that we want to treat dementia patients as babies," Larson said. "You definitely want to respect them."
"As children we have views of our parents that we hold onto that we just have to let go," Swanson said.
The Alzheimer's Association offers a 24-hour helpline for dementia patients and caregivers at 1-800-272-3900.
Contact Sara Larson at St. Brigid's for more information about Alzheimer's and dementia support groups at 651-388-1234.