Denial

The main topic at our monthly support group recently was about denial:

My dad, Evan, still thinks he can drive. My mom, Lydia, is just as bad. His license would have run out this month, but she managed to get him a year's extension. -- Chris

Evan's delusion is dementia-based. A dementia-damaged brain accepts the first information available about an event and runs with it. Evan has been driving for fifty years. He also feels that driving indentifies him as an adult male. His brain takes these two already present pieces of information and closes shop. It can't--not won't, but can't, accept any more information about this subject. Therefore, he firmly believes he can drive. "But Dad, you didn't even see that stop sign," just doesn't compute. Evan's denial is not a choice; his dementia has taken away his ability to process information about how his driving has deteriorated. In a similar fashion, he is unable to see that he is beginning to have other dementia symptoms.

Lydia's delusion is denial-based. Some people deal with their spouse's dementia by researching it and learning all they can about it. Others deal with it by denying that it is present and doing their best to ignore it. This denial is what Lydia had subconsciously chosen to do. Denial is actually a healthy short-term defense mechanism that buffers the immediate shock of something we don't want to happen. However, when a person clings to the denial, it can be destructive in many ways. It becomes a delusion, an irrational belief, often almost as strong as the dementia-based delusions.

Last week's blog was how stress-based delusions can made a care partner's life even more stressful. Lydia's denial is not so much stress-based as it is emotion-based. Negative emotions, such as Lydia's fear of dementia, often trump fact and cause a person to cling to the denial long after its job is done. Then it becomes destructive. For example, a person may not get the treatment they need.

Dad has been to a urologist, a gastroenterologist and a cardiologist. I've done my homework and know that all of the symptoms he has are related to LBD*, but they refuse to go to a neurologist and see if that is what is bothering him. -- Chris

Trying to find other answers for Evan's dementia symptoms, as Chris's parents have done, is a common way for Lydia to cling to her denial.

The cardiologist told us that all of these symptoms are related to his nervous system and that we should see a neurologist. I hope that I can make that happen now. -- Chris

Because LBD has so many non-cognitive symptoms, such "disease shopping" is easy to do. However, it can be dangerous because as each physician treats their specialties, they may make the LBD worse. Evan and Lydia were fortunate in their choice of cardiologist. Another one might have recommended the installation of a pacemaker. The added stress of the required surgery would likely have increased his symptoms and the pacemaker is seldom much help with the LBD-related low blood pressure on rising.

The difference between dementia-related delusions and denial-related delusions are that the later are not hard-wired. What usually happens is that makes it difficult to ignore the issue any longer. In Florrie's case, last week, it was a definitive diagnosis. It is possible that the same thing could happen for Lydia. The process has already started, with the cardiologist's message. This helped her to She has let down her defenses enough to accept a visit to a neurologist, something she has strongly resisted in the past.

Letting go of buffering delusions is a painful process and Lydia will need her daughter's support and understanding. Chris might also take her mother to her next support group, where she'd get even more support.

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.