Alzheimer's group here sees increase in requests
INW chapter sponsors support groups, classes; stresses early diagnosis
By Treva Lind
Journal of Business
October 11, 2012
Staff members at the Alzheimer's Association Inland Northwest Chapter in Spokane say they are seeing a rise in demand for support services and information in recent years, in part because of better awareness and diagnosis of the disease.
Joan Acres, a Spokane-based chapter outreach coordinator, says that while the chapter hasn't tracked the total number of people it serves annually, more people are seeking help from the group for such free services as support groups and educational classes.
While based in Spokane, the chapter serves 26 counties in Eastern Washington and North Idaho.
"We probably have more than 150 people at education sessions in a month," Acres says. "I think there's more reaching out among the baby boomer generation, and they're computer literate, so they find us and ask for help. Also, diagnosis is more accurate now."
A majority of people with Alzheimer's disease are older than 65, and oftentimes a spouse or adult child steps into the caregiver role for someone afflicted with the disease.
"It's estimated that there are 35,000 people who have Alzheimer's in the 26-county region," says Garry Matlow, the chapter's operations assistant. "Half the people with Alzheimer's aren't yet diagnosed."
Examples of Alz-heimer's-related courses offered in the Spokane area include a class on legal and financial planning as well as another session called "Know the 10 Signs of Alzheimer's Disease," Matlow says.
Each of the chapter's classes typically runs for two hours and is held once or twice a month at different locations around the Spokane area. Some are held at senior centers, long-term care or hospital facilities, at libraries, or at the Deaconess Health and Education Center.
The chapter has its headquarter offices inside that building, at 910 W. Fifth. It also has a Coeur d'Alene office at 1042 W. Mill Ave. With an annual budget of about $300,000, the chapter relies financially on donations and fundraisers, Matlow says, including an annual dinner and auction held in the spring.
In the U.S., the Alzheimer's Association estimates that 5.4 million have the disease, and 15 million unpaid caregivers—mostly family members—care for the majority of them. The association also estimates that Alzheimer's cases in the U.S. will soar to 16 million by 2050.
Early diagnosis is crucial, Matlow says, adding that it's important to schedule a doctor's appointment for someone who begins showing possible signs of the disease.
"If Alzheimer's is diagnosed early, it gives you more options," he says. "You can still make informed decisions, put your financial house in order, and direct how you want to be treated in later stages."
He adds, "We encourage people to visit an elder care law specialist early." If family members don't have clear legal and financial directives during advanced stages, "people will struggle with these decisions, unless they know what mom or dad wanted," he says.
The association's early detection list compares and contrasts what are typical signs of Alzheimer's with more minor age-related changes. For example, one sign is the inability to follow a familiar recipe or to keep track of monthly bills, as opposed to making occasional checkbook errors. Another sign is a pattern of withdrawal, versus occasionally feeling weary of work, family, and social obligations.
More people are being diagnosed in earlier stages because of improved diagnostic tools, such as with magnetic resonance imaging scanners, as well as better public awareness, Matlow says.
While people might avoid seeking help early because of fear or denial, if they address future care issues while they can still make decisions, it ultimately will help a spouse or other caregivers, he says. While Alzheimer's is ultimately fatal and there isn't a cure, people with Alzheimer's live an average of eight years after their symptoms become noticeable to others, the association says. However, survival can range from four to 20 years, depending on age and other health factors.
"Alzheimer's ranks up there with cancer among people's big fears," Matlow says. "They don't see themselves living out life in a nursing home unable to communicate. It's especially hard when you're caring for a spouse."
He adds, "In a large percentage of cases, the caregiver dies before the person with Alzheimer's because of the stress of caregiving for the spouse, sleepless nights, added workload, plus the spouse providing the care is usually in their 70s or 80s with health issues of their own."
People in the caregiver role are encouraged by chapter members to join one of about 10 Spokane-area support groups. Each has an average size of 10 to 12 people with at least one trained facilitator, Matlow says, although some groups are smaller.
The support groups also can help caregivers who are watching over people who have other forms of dementia, perhaps because of a stroke or other health issues.
"Most of the groups meet monthly," Matlow says. "Some people attend more than one group, and some still attend after their spouse dies."
Most of the support groups have an open attendance, meaning that participants come and go, with the exception of one "early-stage" group. The chapter screens members of that group, which is for people recently diagnosed with Alzheimer's who come with their caregivers.
"We screen members of the early-stage group, which usually at that stage, the person diagnosed with Alzheimer's is still driving and may still be working," Matlow says. "There are two facilitators, and they start with an overall presentation, and then have breakout sessions for the caregivers or the people diagnosed."
Generally, Alzheimer's is described in three stages: early, middle, and late. It causes problems with memory, thinking, and behavior. Although symptoms can vary widely, the association says the first problem many people notice early is forgetfulness severe enough to affect the ability to function at home or at work, or to enjoy lifelong hobbies.
"Not everyone goes through the same symptoms on the same timetable, or in the same order," Matlow says.
Although current Alzheimer's treatments can't stop the disease from progressing, they can temporarily slow the worsening of dementia symptoms and improve the quality of life for those with Alzheimer's and their caregivers, the association says.
While awareness of the disease has grown, Matlow says that its symptoms still are dismissed sometimes under the broad category of old age, although Alzheimer's isn't part of normal aging. A majority of Alzheimer's patients are over age 65, but the association says up to 5 percent of people with the disease have an early-onset form of Alzheimer's that can appear when someone is in their 40s or 50s.
The Alzheimer's Association offers a toll-free, 24-hour phone help line and a number of free online information resources. In January, it also launched an online caregiver certification program starting at $24.95 for professional caregivers as well as for family and friends who provide unpaid care.
Acres says the chapter's staff and support groups often offer tips that can help caregivers as well. Sometimes, a person with Alzheimer's may get agitated or show aggressive behavior because they are trying to communicate something and can't find the words, she adds.
"Someone may call and say, 'Every afternoon around 4 p.m., our dad gets very agitated,' and we can suggest that it might be that he's tired and needs to nap, or because there's too many people around, or maybe he's hungry," Acres says.
Many spouses and family caregivers try to keep people with Alzheimer's in their own homes for as long as possible, Acres adds.
"The home environment is typically the best one for care where there is some familiarity, for as long as the caregiver is able to give care, or get some family assistance or paid in-home care if they can afford it," she says.
However, Matlow says that at some point, the care may become too physically demanding for the caregiver, especially for an elderly spouse, and that's often when families consider a memory-care facility that specializes in patients with Alzheimer's and other dementia-causing disorders. Memory care facilities usually have waiting lists, Acres adds.
"The facilities have staff that receive a lot of training about Alzheimer's disease, and understand the behaviors, and the environment is set up for dementia patients," Matlow says.
Contact Treva Lind at (509) 344-1267 or via email at firstname.lastname@example.org.