Aging can be tough, but adding dementia to it - particularly when living in a small town like Perham - can create a lonely, stressful, heartbreaking situation. Small towns are often where everybody knows your business, and when it comes to this subject, not everybody with this diagnoses feels like broadcasting that business.
The Alzheimer's Association held a community forum at the PACC on Wednesday, Jan. 23 where approximately 20 people showed up to learn about the disease and how to better care for their loved ones. Although attendees were able to share their struggles there among those who are in the trenches with them, most weren't comfortable making their names public.
"There's a fear of being labeled as having Alzheimer's, even if it isn't very bad," one attendee said, not wanting to give their name, either.
The group discussed that stigma, felt even more so in a small community. In addition to living with that, some said they felt there is a lack of services in small towns for those suffering from the disease.
Dawn Edvall, whose mother is 94, attended the forum and said there's a glaring need for services that allow aging seniors to stay in their home by providing someone to help them out a few times a week. Edvall said she was shocked more people didn't attend the forum. "With the aging population, so many of us are already dealing with someone that needs help," she said.
Edvall said the pressure of taking care of an aging parent "can be incredible". While her mother lives with her brother in North Dakota, she and her siblings take turns going there to give him a break for a few days. When it's her turn to fill in, Edvall said she races through running her mom's errands because she can't stand to think of leaving her mom home alone. Even getting a good night's sleep is disrupted when being a caretaker. "It's almost like having an infant, you're always listening to make sure they got up okay and are moving around," she said. "You're never truly free. A part of your mind is always going to be thinking of them."
Program Manager Kendra Lund, who led the forum, said she got involved with the program after seeing her grandma suffer from Alzheimer's for more than ten years.
Lund gave an interactive presentation that described the different varieties of dementia, how it impacts the brain, the disease risk factors and what treatments are currently available.
After Lund's presentation, the group discussed their experiences helping loved ones suffering from the disease and how to improve care in the area. Community members said there's a general lack of awareness about what services the organization offers. The group recommended healthcare providers work more closely with the Alzheimer's Association to promote their free care consultation service and 24/7 helpline.
Every Alzheimer's patient requires an average of 2.9 unpaid caretakers, which ranges from spouses and siblings working in the home to a neighbor mowing the lawn. All this help is estimated to add up to 18 billion hours of care every year. With the US having half the number of certified geriatricians it currently needs, more of this responsibility is going to fall on loved ones.
When to put someone in a nursing home is different for every individual. It's important to plan in advance before making arrangements in a crisis, Lund said. "Caregivers' wellbeing has to be taken into consideration as well," she said. "Even if you want them home, it's not best for everyone."
The risk, the struggle
With 5.7 million Americans currently living with Alzheimer's and that number projected to more than double by 2050, it's important to know about the normal aging process and where things are abnormal.
Dementia is a general term for a group of symptoms that are severe enough to impact daily life, with Alzheimer's being the most common form of dementia. Symptoms include difficulties with memory, language and problem solving. Alzheimer's kills nerve cells leading to brain shrinkage, which causes changes in memory, thinking and behavior becoming progressively more severe.
Lund emphasized that Alzheimer's and dementia are not a normal part of aging. While it's common for people to forget things occasionally, people should be able to retrace their steps and find what they're looking for. This isn't the case for Alzheimer's sufferers, who lose the ability to access certain memories and brain functions.
Age is the greatest known risk factor for Alzheimer's. While it's possible for it to develop in middle-age, the risk doubles every five years after the age of 65. Women are also at a greater risk, with two thirds of all Americans with the disease being women. Having a grandparent with the disease doesn't increase your risk while having a parent or sibling with it does.
Alzheimer's develops in three distinct stages, but everyone experiences each stage at a different rate. In the early stage, a patient is able to function independently, but has memory lapses, problems concentrating and trouble remembering new information. In the moderate stage, personality and behavior begins to change, along with forgetting personal history. Late stage requires round the clock care as the person loses awareness of their surroundings and can no longer function independently. While the disease has no cure, there are a few FDA approved drugs that can manage symptoms.