Coping with a memory disorder is stressful enough—don’t let these 7 common misconceptions further complicate caring for a loved one with Alzheimer’s or another dementia.
Myth #1: He or she is acting this way to annoy me.
Fact: He or she can’t help it.
Why knowing this helps: “Get mad at the disease, not each other” should be the caregiver mantra, says Duke University social worker Lisa Gwyther, co-author of The Alzheimer’s Action Plan. Repetitiveness, paranoia, hallucinations, wandering, and verbal or physical aggression are all symptoms (usually responses to unmet needs), not behaviors that someone with dementia can turn off or on at will.
Myth #2: It can’t really be Alzheimer’s because she remembers lots of things.
Fact: The ability to form and retain new memories is lost first.
Why knowing this helps: Understanding the typical progression helps you plan ahead: Someone with mild to moderate dementia usually retains longer-standing memories, but forgets things that recently took place. Early in the disease, seize the opportunity to work on estate planning, end of life preferences, or family histories together before memory and decision-making ability starts declining.
Myth #3: There’s no effective treatment for dementia.
Fact: There’s no cure yet, but many drug and nondrug therapies can slow declines and improve quality of life.
Why knowing this helps: Don’t let anyone say “nothing” can be done for someone with Alzheimer’s, Gwyther says. Optimal care that can slow the decline includes: creating a daily routine of physical exercise and social stimulation, proper medication (including pain management and eliminating unnecessary meds), and consistent nurturing.
Myth #4: It’s best to correct people with dementia when they get things wrong.
Fact: Sometimes the truth hurts.
Why knowing this helps: It’s okay to gently re-orient someone who’s confused, but skip this if it creates upset. Logic is useless with someone who’s lost the cognitive ability to reason; avoid battles of wills over accuracy. Better: Accept the person’s reality in the moment—even if this involves little white lies—as the moment will pass.
Myth #5: Medications can slow or stop Alzheimer’s progress.
Fact: In some people, for some period of time, medications can slow Alzheimer’s.
Why knowing this helps: Realistic expectations can save you heartache and money. The current drugs can’t cure or stop brain changes, but that doesn’t mean they’re not worth trying. Some work well for many people, but tend to lose effectiveness over time and don’t work at all for some dementias, Gwyther says.
Myth #6: Outings and special experiences are no longer important because they won’t be remembered.
Fact: The positive emotions that special events bring outlast the memory of the event.
Why knowing this helps: Happiness is worth creating, because feelings linger longer than facts in dementia. Many difficult behaviors flare up when the person feels insecure, frightened, frustrated, or otherwise upset.
Myth #7: Good caregivers always keep a loved one at home.
Fact: Many factors can make out-of-home care preferable; every situation is different.
Why knowing this helps: Guilt can lock caregivers into situations that are unhealthy for them or their loved one, such as when care is physically stressful or there isn’t enough help, or when there’s incontinence, aggression, or sleep disruption. Avoid rigid “always” and “never” attitudes. “About the only thing you know for sure about dementia care is that you can’t ever quite know anything for sure,” Gwyther says.