By: Luc Rinaldi
Mom has Alzheimer's disease, your siblings refuse to talk to one another, and your kids are too busy to lend a helping hand.
Somehow, all the caregiving duties have been left to you. What to do?
Call an elder mediator.
You may not have heard the term before, but, with an aging population, the emerging practice of elder mediation could soon become a staple in age-related care.
The practice is much like other forms of mediation: An objective, arm's-length party helps resolve family disputes regarding the care of an aging loved one (anything from housing and finances to caregiving routines and end-of-life planning).
Elder mediators bring together circles of care -- anyone from brothers or daughters to best friends or church colleagues -- to have essential yet difficult conversations in a balanced, focused fashion. The ideal results are improved communication, evenly divided responsibilities, and the best possible care for the loved one.
As long as they come to the table, [an elder mediator] can facilitate the process.
"The first thing that everybody has in common is that, wow, you're all here," says Judy M. Beranger, an elder mediator in St. John's, Nfld. "You've gone out of your way to get here because you all care about what happens to your loved one ... As long as they come to the table, [an elder mediator] can facilitate the process."
Beranger has been facilitating these processes since the early 1990s, when she noticed many families dealing with Alzheimer's were being referred to counselling. "The families needed a conversation more than they needed counselling," she says. Elder mediation was virtually unheard of in North America.
Alzheimer's disease, Beranger says, adds a sensitive layer to the mediation process.
While it may be psychologically harmful to exclude elders from the discussion, those with dementia may not be fit to participate and therefore may need a spouse, best friend or sibling to serve as their voice.
Referrals up for Elder Mediators
While Beranger still calls elder mediation the industry's "best-kept secret," the practice has grown steadily since she began over 20 years ago.
Today, there are roughly two dozen certified elder mediators in Canada (many others are in training, while some offer the service without specific certification).
Elder mediation is complementary to elder law, and covers: Health care matters, estate planning, living arrangements with adult children, assistance with finances or other caregiving issues, conflicts between an older adult and a service provider, decisions about moving into assisted living or long term care.
There is a handful of Canadian studies and programs (such as those in British Columbia, Waterloo, and Cornwall, Ont.), and many organizations focused on the practice, such as the Elder Mediation International Network. The network, of which Beranger is World Summits Chair, held its seventh summit in Halifax in late June.
Beranger authored a 2010 report on the role of elder mediation in preventing abuse, for the Department of Justice, and has published a couple of caregiver guidebooks.
"Certification, calling it a practice, and having the summits has brought it to a new level," Beranger says. With elder mediation standards -- including the need for conflict-resolution, intergenerational, and dementia-focused training -- Beranger says physicians and organizations such as the Alzheimer Society are more willing to refer people to elder mediators.
Still, she says that mediators need to make themselves more visible to physicians and specialists so that families in need of mediation don't bounce between dozens of professionals before even hearing about the practice.
"[Elder mediation] is just leaving the embryonic stage in many senses," Beranger says. "But with our aging population, it's going to change the face of health care as we know it."
For elder mediators in the United States, go to EldercareMediators.com.
Luc Rinaldi is a Toronto-based freelancer.
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The Alzheimer's Association says that people who have the illness will find it difficult to complete daily tasks - this could range from cleaning to forgetting the rules of a game played regularly.
The Alzheimer's Association says that people who have the condition can lose track of time, dates and seasons. Sufferers may have trouble understanding things if they are not happening promptly. They may also lose track of where they are and how they got there.
According to the Alzheimer's Association, people suffering from this type of dementia may find it difficult joining a conversation - they may also stop in the middle of conversations and don't know how to start again Writing coherently can also be a problem.
The Alzheimer's Association claim that people may find it hard to read or understand certain images if suffering from the disease. They also may find it difficult to determine colour or contrast, which may stop them from driving.
Sufferers may feel changes in their ability to follow a plan or work with numbers. They'll probably have trouble following a basic recipe, or keeping track of monthly bills. They might find it difficult to concentrate and take much longer to do things than they did before. Source: Alzheimer's Association
Someone with Alzheimer's may remove themselves from certain hobbies/interests and social activities.
According to the Alzheimer's Association, one of the most seen symptoms is memory loss (especially recently processed info). For example: forgetting important dates or events; asking for the same information over and over again and needing memory aides( electronic reminders).
The mood and personalities of people with Alzheimer's disease can change, they can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. Source: Alzheimer's Association
People with Alzheimer's may have poor judgment. This can include confusion over how much money they should spend. They may also pay less attention to grooming, and cleaning themselves regularly. Source: Alzheimer's Association
Many people with Alzheimer’s experience sundowning, or increased confusion and anxiety as evening approaches. For the best chance at communicating, call between mid-morning and mid-afternoon, recommends Lori Fleming, cognitive educator at Friends Fellowship Community in Richmond, Ind. “The evenings and early mornings are not good because their minds get wired up throughout the evening and, occasionally, it causes people with sundowners to kind of stay up really late,” says Fleming.
Regular communication is the most crucial and valuable component in keeping the relationship ongoing and strong. During conversations, keep the sentences and dialogue short and simple. Keep the call itself short, too. “Little two-, three- and four-minute phone calls are probably better than 15-minute phone calls,” says Angela Lunde, dementia education specialist at Mayo Clinic in Rochester, Minn.
Don’t pressure the loved one with Alzheimer’s to recognize you. Simply say who you are and why you’re calling. You might be tempted to ask the Alzheimer’s sufferer if they know with whom they’re speaking. Don’t. This question can cause discomfort and anxiety. If they don’t make the connection, just continue talking to them.
Family members will often notice that their relative suffering from Alzheimer’s is saying things that obviously aren’t grounded in reality. Don’t correct them. "In Grandpa’s eyes, it’s his life, his story, and that’s his reality in that moment,” explains Lunde. Going along with the incorrect stories isn’t contributing to “Grandpa’s” delusions or supporting his “lies.” In her support groups, Lunde doesn’t use the word “lying;” instead, she and the group members call it “therapeutical fibbing.”
Long-distance family members shouldn’t overlook snail mail. Loved ones with Alzheimer’s respond extremely well to letters and cards because they can read and look at them every day. “They’re a constant reminder that they have a connection to somebody, and that’s what I think makes it probably even more valuable than a phone call,” says Lunde.
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