There are currently 5.5 million people across the United States living with Alzheimer’s disease. It is the third leading cause of death in North Dakota and second leading cause of death for the country.
By Zak Wellerman
According to the Alzheimer’s Association, Alzheimer’s disease is a form of dementia, meaning memory loss and a loss of other cognitive abilities hindering everyday life. The disease gets worse over time and it’s not connected to aging. Although some treatments can slow the worsening, there is no cure.
“Someone who is diagnosed with Alzheimer’s can be a completely different person as the disease progresses. They could have been very kind all their lives and nice to people. Now, it could be a little bit different. They could be a little angrier because they’re not aware of what’s actually going on with them,” Donna Rohr, social services at Hilltop Home for Comfort in Killdeer, said. “I’ve had the comment to me before that with family members it’s almost like losing their loved one twice because as they lose their memory they forget who their family is. Some of them, not of all of them. And again when they pass.”
November is both Alzheimer’s and Family Caregivers Awareness month and professionals say the biggest issue is the lack of education about the disease.
Nikki Wegner, Western North Dakota program manager for the Alzheimers Association, and her team work to spread information about the disease through educational programs and offer their services to caregivers in need of assistance.
“I think the number one thing people should know about Alzheimer’s disease is that it’s very common, especially in North Dakota. We’re second in the nation for Alzheimer’s related deaths,” Wegner said. “I don’t know what it is if it’s the stigma of the disease or just lack of knowledge. There are other things that can cause those symptoms but are treatable. I just don’t think that it’s talked about enough and so it’s important to learn more about the disease and other causes of those symptoms.”
There are 10 major warning signs of Alzheimer’s. The signs are memory loss that
disrupts daily life, challenges in planning or solving problems, difficulty completing familiar tasks at home and work, confusion with time or place, trouble understanding visual images and spatial relationships, new problems with words in speaking or writing, misplacing things and losing the ability to retrace steps, decreased or poor judgment, withdrawal from work or social activities and changes in mood and personality.
Wegner emphasizes the need to go to the doctor when having warning signs to find out what the issue is for certain.
“Just know it’s really important to go to the doctor because 10 percent of the time it’s not Alzheimer’s or dementia sometimes it’s something that can be reversible,” Wegner said. “Certain things that cause dementia symptoms are treatable. We don’t just want to assume it’s something like Alzheimer’s and then goes on to have worse symptoms of dementia. So it is important to be talking to your doctor about it and we’re not really good at that as North Dakotans.”
Alzheimer’s is not a disease for just people over the age of 65. Young people can show signs under the 65, and youngest person in North Dakota to have the disease is 30 years old.
“When you’re younger, we tend to think it’s stress or I’m just trying to do too much at one time. So it’s hard because even for people who are older they don’t notice,” Wegner said. “So that might be another reason why people aren’t talking to their doctor about it because it’s just so subtle at first.”
Wegner’s department will also have support services for dementia patients and family caregivers. North Dakota caregivers can also contact the Alzheimer’s Association for free to answers and make a plan for themselves and the patient.
Hilltop Home for Comfort
Those at the Hilltop Home for Comfort have seen the complexities and struggles an Alzheimer’s patient goes through and what it takes to care for them.
Director of Nursing Tara Bohmbach said caring for a patient comes with both challenges and rewards.
“I always say you focus on not on the amount of time you have, but the moments you get with them. There are times when they are completely lucid for two minutes and you get a smile from and they recollect something from their past and you make that moment,” Bohmbach said. “And the next moment, they might be very confused again, and so I find it really rewarding taking care of patients with dementia and Alzheimer’s, but it also comes with its challenges too.”
As the disease progresses, it becomes harder for the patient to understand why they’re losing their abilities and families lose their loved one slowly as they pass on, Bohmbach said.
Hilltop has special care unit for Alzheimer’s patients to help with activities and provide a slower paced setting and the staff does not have to worry about getting out of the rooms, Bohmbach said.
“It’s been a blessing I feel in our whole facility,” Rohr said. “It keeps people them in that area so the other people in that area don’t mind if they’re in and out of the room. In the other part of the facility, it could cause a problem.”
The staff tries to get to know the patient to take care of them whether it’s the family member or themselves. Topics like their hobbies, childhood memories, music and pictures from past can be very helpful and rewarding, Rohr and Bohmbach said.
For those concerned about themselves or a family, Bohmbach said if you’re sensing the warning signs go to the doctor for important tests, no matter what your age.
“I would encourage anyone that’s having any kind of symptoms that they should seek their doctor because they will be able to run memory tests to help diagnose what’s going on because there are other things that could be causing the memory loss as well. It can happen to anyone,” Bohmbach said. “It’s an unfortunate disease kind of like cancer it doesn’t care how old you are, what race you are, what sex you are, how you’ve lived your life.”
In addition to being a patient, there is also the aspect of being a caregiver for a loved one, which can come with stress.
A caregiver is considered someone who assists the patient and could assist them 24/7 at some points. Although there are paid services, they are often unpaid and work many hours. According to the Alzheimer’s Association, there were 30,000 caregivers in North Dakota working a total of 35 million unpaid hours together.
“If the caregiver is able to do it [care for a loved one], then great by all means. It’s a 24/7 job. But ask for help. Don’t be afraid to ask for help and don’t feel like you failed if you need us for help because it’s hard, it’s taxing and there’s 85 of us that run a facility and there’s one of them at times,” Bohmbach said. “So 85 of us can manage this, but day in and day out 24 hours, seven days a week it’s strenuous and they can’t have guilt. That’s a lot of work.”
Rohr advises to work with the patient and not argue with them as they lose their memory.
“Just be there for them. Not arguing with them about something the loved one feels that is right. Correcting them is always not the right thing to do because we always go along with what the resident is usually saying if it’s something we can do. Because it just creates agitation if you correct them and tell them that they’re wrong,” Rohr said.
It’s also important to not allow them to lose hope as patients go through Alzheimer’s, Bohmbach said.
“Never let them lose hope and give them a hug because that’s basically all you can do is be there for them, love them through it and don’t let them lose hope. And what I mean about losing hope too is that they’re here and they say ‘I’m going to go home tomorrow’ say ‘okay well we’ll talk about it tomorrow.’ You kind of have to just play the day out because tomorrow might bring a whole new thing or the exact same thing all over,” Bohmbach said.
Wegner added caregivers can be helpful for visits to the doctor to ensure the doctor has the full picture.
“We definitely want to be encouraging people to go to the doctor and get a diagnosis of what’s going on and that takes the caregiver to also provide information to the doctor because when dealing with something like memory loss the person may not be able to tell the doctor,” Wegner said. “So it’s important that the caregiver goes with them to the doctor visits to help make sure the doctor has the whole picture of the patient.”