Why Your Loved One Doesn’t See It
When I call to introduce myself to prospective RAFT dementia support families, I am often greeted with enthusiasm:
“Oh, you’re the person who is going to come and explain to my husband that he has dementia.”
I bite my lip. “So, your husband doesn’t believe he has dementia. Has he been told that he has dementia?”
“Oh, absolutely, the primary care doctor told him that he suspected dementia. It was confirmed by his neurologist.”
“So he has been told at least twice”
“Definitely, and I remind him every morning when he asks me where his car keys are.”
“And how does he respond?”
Silence followed by a half-chuckle.
“On his good days, he tells me, “I should get my head checked out.” And on his bad days, he stares right through me, stonewalling for hours on end.
“Sounds like he doesn’t take it very well. Have you heard of the term anosognosia?” I ask.
Some people who are living with dementia have anosognosia or lack awareness of their own diagnosis. It also occurs in individuals living with mental illness. It doesn’t matter how many times a person with anosognosia is told that he or she schizophrenia. The person will continue to reject medication on the grounds that he or she does not have a disorder.
It’s not clear how common anosognosia is, estimates vary. It’s possible that somewhere deep inside a person may know they have dementia but they maybe in denial. Since awareness is on a spectrum, it’s also possible that they are aware that something has changed but are not sure what. These individuals may be more comfortable with terms like “memory impairment”, rather than dementia or a specific type of dementia.
I often hear a sense of relief on the other line, as the caregiver understands that their loved one’s lack of awareness may be a symptom of dementia itself, rather than a caregiver shortcoming.
If you think your loved one might be experiencing denial or anosognosia, here are some tips you might find helpful:
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Focus on values, not shortcomings: Work alongside the person to maintain safety and dignity. Focus on what is most important to them, whatever that might be: spending time with family, being involved in the arts, or enjoying time outside.
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Adjust communication: Avoid mentioning the diagnosis. “You had a tough morning; I will drive so you can rest up” may be more palatable than “I will drive you for the rest of your life because you have dementia.” Some families have found success by shifting to positive language, explaining that “a loved one will be your chauffer” or that “a grandson wants to spend more time with him”.
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Rely on authority or third parties: Shift blame to an external source can reduce conflict. A doctor’s recommendation or letter stating that driving is no longer safe can be a way to remove yourself from conflict.
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Consider using the LEAP Method: Dr. Amador’s LEAP method is comprised of the components: Listen, Empathize, Agree, Partner. The last component calls for finding common ground. Can you both agree that financial security is important? Driving with a dementia diagnosis, even if it is a misdiagnosis, may be at odds with the DMV Cognitive Impairment Policy and jeopardize the person’s car insurance coverage (check with the provider).
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Modify the environment: Secure the car keys somewhere safe where they will not be found. Move the car elsewhere or disconnect the car battery.
(Editor’s note: If you rely on one of these strategies, just be sure your loved one doesn’t call the police to report a stolen vehicle or call a mechanic to repair their car.)
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 While family caregiving can be a rewarding experience, it can also come with many challenges. One of those challenges is trying to navigate the different systems of care. This was especially true for Leigha Hollis, who is family caregiver for her mother.
Leigha's experience as a caregiver led her to create Legacy House, a vetted directory of professionals for families navigating some of life's hardest moments: elder care, estate planning, hospice, senior housing, grief support, and more. It launched on June 15 - on what would have been her grandmother's 100th birthday.
All of the professionals listed on Legacy House are vetted. Before approving any profile, they manually verify the license through the relevant licensing authority: FINRA BrokerCheck for financial professionals, state bar associations for attorneys, and state licensing portals for care managers, social workers, and other practitioners. They confirm the license is active and in good standing with no disciplinary actions, suspensions, or complaints on record. They are no paid listings or paid reviews.
The professionals listed on Legacy House cover ten categories: elder care, estate planning, financial planning, life insurance, retirement planning, caregiver support, hospice and grief, funeral and memorial, senior housing, and special needs planning.
Leigha wants to help other family caregivers find the needed resources without the same hassle, confusion, and frustration that she experienced.
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