I’m known in my family as the “forgetful kid.” As the oldest of five children, I’ve had plenty of things to occupy my mind. I can’t tell you how many times I’ve lost my keys, forgotten it was my turn for carpool or misplaced my purse. I attribute my absent-mindedness to leading a busy life.
But for millions of Americans, what appear to be normal memory lapses can develop into Alzheimer’s disease and other types of dementia.
Researchers at Rush Medical Center in Chicago estimate that about half of people who reach 85 years old will experience dementia. And of those who develop the disease, 60 percent will be diagnosed with Alzheimer’s. In fact, experts predict that by the year 2050, 30 million Americans will be diagnosed with dementia or Alzheimer’s.
Doctors can’t pinpoint for certain what causes dementia, but its prevalence is a growing financial and emotional hardship for people whose loved ones suffer from it. The Alzheimer’s Association, for example, estimates that Alzheimer’s patients receive over 18 billion hours of unpaid care, usually provided by a family member. Family caregivers must also deal with the emotional challenges often associated with the decline of someone they love.
Knowing that your loved one has dementia is difficult enough, but when that person -- or other family members -- refuses to accept their changing needs and abilities, it creates an even greater burden. Sometimes it’s the caregiver who refuses to accept the declining behavior of a loved one, but more often, it is the person with dementia who fails to see the warning signs.
Denial over a loved one's dementia diagnosis is both normal and common, according to Helene Bergman, LCSW, founder and director of geriatric care management company Elder Care Alternatives.
The important thing, she says, is to make sure that the denial doesn’t lead to neglect of the care needs of the person with dementia.
If you’re caring for someone with dementia who is in denial about it, or are possibly in denial yourself, the five following steps can help you move forward.
1. Talk about it.
Open communication among family and close friends is essential for designing a cohesive support system and strategy to deal with your loved one’s illness. For some family members, the realization that their loved one’s condition won’t improve can trigger feelings of guilt or anger, which should be shared and resolved.
Others may be concerned about the financial strain of care. By facilitating a frank discussion about shared responsibilities and concerns, family and friends can eliminate any misunderstandings and reinforce a united, supportive front to provide their loved one with the care he or she needs.
This is easier said than done. A close friend of mine is currently experiencing dementia denial. She knows, logically, that her husband’s mind is impaired—but her heart is not ready to accept it. Truly accepting that her spouse has dementia means accepting the fact that their marriage is fundamentally changing. She still loves him, but she is moving into a caregiver role with different expectations—and that is not easy to do. As a friend, my job is to understand, support and encourage without pushing or judging her actions. I am here to help her talk about it and resolve it in her own way.
Beth Spencer, a social worker and co-author of “Coping with Behavior Change in Dementia,” suggests focusing your discussion on specific issues of concern.
“The most likely might be driving, safety at home, finances,” says Spencer. “Instead of trying to get your relatives to admit and talk about Alzheimer's, pick one concern you have and work on that with them. In general that's the best way to approach this issue with family members who may not be ready to face a diagnosis of Alzheimer's.”
2. Set up a reminder system.
During the early onset of dementia, your loved one may be quick to blame his or her forgetfulness on other people or circumstances. Rather than making matters worse with accusations, encourage your loved one to adopt a reminder system. Author and Alzheimer’s caregiving expert Paula Spencer Scott suggests placing a large calendar in a central location in the home. You can then add important dates, phone numbers, and other reminder cues for your loved one to see.
3. Spend time together in person.
During the early stages of dementia, small tweaks like using a pillbox for medications or stocking the refrigerator with prepared meals may be adequate, but, as mental faculties decline, your loved one may become more restless, agitated, confused or uncooperative. As a non-confrontational way to check on your loved one, you may want to schedule a visit to exercise, garden or even dance together.
These types of activities may provide the added benefit of slowing the progression of dementia. “Studies show regular exercise can slow the progression of dementia,” says Jennifer Orr, RN, Director of Nursing Services at Parke View Rehabilitation and Care Center in Burley, Idaho. While you’re with your loved one, you can dispense medication, prepare a meal or straighten up their home.
Spencer Scott suggests inviting those who have doubts to spend longer periods of time with your loved one to give them a better picture of the cognitive issues he or she is facing.
4. Avoid arguments.
Trying to convince loved ones to acknowledge that they’re in the early stages of dementia or Alzheimer’s when they’re not ready to accept it is almost impossible. Abstract arguments aren’t helpful. But calmly expressing concerns about recent events, such as a traffic accident, excessive purchases, weight loss due to lack of eating, or hygiene issues is a more constructive way to encourage changes. Regardless of whether your loved one accepts the diagnosis, you can help ensure that he or has protective measures in place.
Sometimes, people with dementia may become agitated in public places. Unless they’re causing harm to themselves or others, it’s also best not to engage in an argument. Do what you can to soothe and calm your loved one, and walk away if you need to. Especially in the early stages of dementia, it may be embarrassing to go out in public and cause a scene. But I know from experience that people tend to be understanding and sympathetic.
5. Keep records
Keeping records of the cognitive and memory changes your loved one is experiencing can be an invaluable way to help them and others overcome dementia denial. Spencer Scott advises keeping a written log of the changes, jotting down worrisome incidents in a notebook along with the date and time.
She notes that keeping audio and visual records of the changes your loved one is going through can be even more persuasive, and suggests using a cell phone for recordings.
“You'll be able to record a worsening condition by comparing video taken at different times ("See how much more pronounced Dad's limp is becoming?’),” she says. “Or you can record a confused conversation with your mom, confirming for disbelieving siblings that "’I'm not making this up!’"
6. Rely on automation.
Regardless of whether a loved one can come to terms with the changes to his or her health, setting up automated payments to their bank account along with an allowance that limits access to additional funds can help lower the risk of fraud, hoarding or overspending. Your loved one likely views paying bills as a sign of independence and may resent the change. But if presented in a positive way, he or she may come to appreciate the time saved. The key is to replace things you are removing from your loved one’s routine with positive additions. In this case, you can emphasize that your loved one doesn’t have to worry about finances. Instead, he or she can focus on enjoying time with friends and family.
7. Seek help
If you’ve tried the above steps and are still struggling with dementia denial on the part of the loved one with the disease or others, it may be time to call in some help.
“It is absolutely legal to call social services in any situation in which you are concerned about the health or well-being of another person,” says Maria Basso Lipani, creator of GeriatricCareManagement.com. “It is especially important to do so when the adult in question has dementia or another illness that impairs judgment.”
Or if possible, Basso Lipano advises trying to speak with your loved one’s doctor to explain your concerns, the steps you’ve taken and how they’ve panned out, which could motivate the doctor to take additional steps during your loved one’s next appointment.
Dementia can challenge even the most loving and supportive of relationships, especially when you and your loved one are not ready to face the road ahead. While you may not know what lies ahead, designing an encouraging and positive support system lets your loved one know that you’ll be there every step of the way.