When your employees are caregivers to Alzheimer’s patients

It’s more than common forgetfulness, more than not remembering where you put the car keys or what you did last Friday night. Alzheimer’s disease robs patients of their self-knowledge and identity, as well as their health. It’s a hard disease to have and to care for, and it’s currently both incurable and frightfully common.

“This is a crazy-high number, but Alzheimer’s disease affects 10.9 percent of Americans ages 65 and older, one in nine seniors” said Dr. Joe Rose, a medical director for Arkansas Blue Cross and Blue Shield. “That’s nearly seven million people, about 2% of our population. And 73% of Alzheimer’s patients are over age 75. That means that even if you or a family member does not have Alzheimer’s, you almost certainly know someone affected by it.”

While Alzheimer’s primarily affects people who have aged out of the workforce, it “absolutely” affects their still-working families. “Many people of working age have parents with an Alzheimer’s diagnosis,” Rose said. “They may be the primary caregiver or closely connected to their care. Caring for someone with Alzheimer’s and other forms of dementia is a major stress, and that can affect their productivity and quality of life.”

Understanding what it is and isn’t

The disease is the most common form of dementia. Rose said that everyone has times of forgetfulness, and not every occurrence of confusion or memory loss is an indication a person has dementia. The Alzheimer’s Association identifies the top 10 signs that changes could be Alzheimer’s:

• Memory loss that disrupts daily life
• Challenges in planning or solving problems
• Difficulty completing familiar tasks
• Confusion with time or place
• Trouble understanding visual images and spatial relationships
• New problems with words in speaking and writing
• Misplacing things without being able to retrace steps
• Decreased or poor judgment
• Withdrawal from work or social activities
• Changes in mood and personality.

“It’s important to see a doctor to get professionally evaluated,” Rose advised. “The evaluation can help give patients and their loved ones insight into the symptoms or may help identify another cause. If the tests determine it is Alzheimer’s, having the official diagnosis may open up some support options for patients and their caregivers.”

He said the Alzheimer’s Association and the Alzheimer’s Foundation of America are good places to find solid, accurate information about the disease, its progression, clinical trials and what help may be available.

“Currently, we have few real treatment options for Alzheimer’s,” Rose said. Aduhelm, an FDA-approved drug that at first seemed like a major breakthrough, was taken off the market this year. “At best, we can modestly treat some of the symptoms in some patients, maybe slow progression down a bit,” Rose said. “But there are a number of promising things in the pipeline for possible approval in the next five to 10 years. So, we remain hopeful.”

While research towards a cure or more effective treatments advances, Rose said the medical community’s focus is on providing support to those affected by the diagnosis and helping people prevent the disease in the first place.

Caring for caregivers

“The demands on caregivers of people with Alzheimer’s are huge,” Rose said. “When someone loses their cognitive function, they can’t be left alone. They can wander, get lost, hurt themselves. They need constant attention. It’s hard for the caregiver to get other normal things done like a trip to the grocery store or taking time to go have lunch with friends. Eventually, with Alzheimer’s, the patient can’t even really go out in public. This is a highly isolating disease, emotionally and physically.”

Rose said Alzheimer’s takes a toll on caregivers’ health, too. “With all the demands on them, they’re taking care of their loved one and not necessarily looking after themselves. They may not be free to get to the gym or even to their own doctor. Caregiving is enormously hard work, and sometimes they have no energy left for anything that doesn’t seem essential.”

He said that there’s a high incidence of depression and anxiety among caregivers of Alzheimer’s patients, and that too often those go untreated, compounding the difficulty and stress.

Supporting your caregiving employees

“When employers learn an employee is coping with a family member’s Alzheimer’s diagnosis, it’s important to understand they may require additional flexibility and support. They may need to work from home or may not be available to put in long hours after-hours if they’re responsible for the patient then. I suggest asking them what would be helpful.”

He said whether offers of help come from an employer, colleague, family member, neighbor or friend, they are typically needed and very appreciated. “Maybe it’s just taking them dinner or offering to pick up groceries, walk the dog. Maybe if it’s someone you know well, you can offer them a break while you watch the patient. Anything that relieves a burden on the caregiver helps,” he said.

He said that in the workplace, help may include passing on information about available resources, including the company’s Employee Assistance Program or encouraging them to explore virtual or in-person support groups. The Alzheimer’s Foundation has a 24/7 helpline (1-866-232-8484). Some local Alzheimer’s organizations like Alzheimer’s Arkansas offer respite care grants so the primary caregiver can have a break, whether it’s hours or a weekend off. Their site also has many connections to resources and education that can be valuable aids.

Prevention

Science is learning to identify Alzheimer’s earlier, Rose said, and some day those early detection tests may be mainstream and widely available. It’s good to understand your or your loved ones’ chances of developing it. Risk factors for Alzheimer’s include:

• Age
• Genetics (it runs in the family)
• Conditions like hypertension, type 2 diabetes, cardiovascular disease, high cholesterol and peripheral vascular disease
• Smoking
• Poor diets
• Sedentary lifestyles and obesity
• Brain trauma
• Second-hand smoke and air pollution
• Certain medications

Of course, in the absence of a cure, the best approach is doing all we can to prevent the disease, Rose said. It can’t always be prevented, especially when there is a strong genetic history of the disease in the family, but living healthily definitely helps.

“The good thing is the same lifestyles that help prevent things like heart disease and stroke also help prevent Alzheimer’s.” He explained strategies that help keep the brain’s blood vessels clear and unblocked are useful in preventing Alzheimer’s. Those include choices like eating a well-balanced diet of mostly whole, unprocessed foods; exercising regularly; getting good sleep; not smoking; maintaining a healthy weight and blood pressure. Also helpful, especially for seniors: mental stimulation including continuing education, learning new skills, making art or completing puzzles.

“People generally know what we mean by healthy choices,” Rose said, “but perhaps understanding that they can also affect their likelihood of developing Alzheimer’s can provide additional motivation to adopt them. It’s not a disease anyone wants or wants to take over their loved ones’ lives. Personally, if eating well, getting some exercise and not smoking help me avoid Alzheimer’s, I’m all in.”