My husband presents with mostly motor symptoms. He has tremors, stiffness, freezing of gait, balance and speech issues. He does have mild cognitive impairment, which may be related to his diagnosis of PD or to his age, he is in his 80’s now. The physical challenges are easier to diagnose and treat. He controls many of his challenges with medication and through deep brain stimulation. However, my father was a classic example of what the non-motor symptoms of Parkinson’s can do to the thought processes of the brain. He was fully engulfed in hallucinations, delusions and paranoia early on. There were no medications to help him find reality in his days and it was extremely challenging for all of us as we tried to make sense of what was happening.

Thankfully, much has happened in the world of dementia and Parkinson’s research since my father was diagnosed back in the 1980s. A lot has been done looking into Alzheimer’s Disease and much of that applies to PD Dementia too. Some of the best work is in recognizing, understanding and supporting mental health for everyone with Parkinson’s and their loved ones. There are medications and behavioral treatments that can be useful for some. Life with PD Dementia or Lewy Body Dementia does not have to be the same nightmare it was for my parents.

The essential component here has to be communication. Even though I know it must be terrifying for my husband to consider what might be coming, I have to be willing to talk honestly with him about his mental health whether it’s anxiety or more serious concerns about dementia. He needs to know that it scares me too. If he does develop hallucinations or delusions, it is not my job to keep him connected to reality but instead to walk alongside him in whatever reality he is experiencing to make sure he is safe and calm. It is my responsibility to let his medical team know what I am seeing. He may not always be able to accurately assess his cognitive challenges, I need to watch and report so the best treatment plan can be created. Then I need to try my best to be patient and understanding as I help him follow it.

For  more information, see the section of the Parkinson’s Foundation website simply entitled Dementia.