Dear Dr. Roach: My 89-year-old husband died two years ago, and it has been a great sorrow and puzzlement to me and his family that his death certificate listed the cause of death as Lewy body disease. Yes, he had some dementia for the last 2 1/2 months of his life, when he was in the hospital and then in a nursing home (where he got C-diff), and hospice, where he died. However, at that time, he had an extremely low body temperature and was taking a lot of medication.
After his death, I asked the hospice and our family doctor why such a cause of death was given, and they said that they get their records from the hospital. They said that there鈥檚 no way to put 鈥渇ailure to thrive鈥� or other such causes now, and intimated that something precise has to be stated. My family and friends have been mystified. My husband was a calm, loving man of good judgment. He never raised his voice or lost his temper, even in the last few months of his life. If he had shown any symptoms of Lewy body, I would not question the cause of death. All I want is the truth. Can Lewy body be diagnosed before death? Is there such a test? Is it ever possible to have the cause of death changed?
P.C.
I am sorry you are still in pain after two years, and hope I can help.
Let me start off with explaining Lewy body dementia. Many people have not heard of it, but it is one of the most common forms of dementia, after Alzheimer鈥檚 disease. In Lewy body disease, dementia 鈥� especially with early loss of visual-spatial abilities (trouble driving and getting lost are common and early symptoms) 鈥� is necessary for the diagnosis. The dementia routinely gets better and worse, sometimes over seconds, sometimes over days. Symptoms can include drowsiness or naps, staring spells and episodes of disorganized speech.
In addition to the fluctuations in mental ability, sleep disturbances, symptoms that resemble those of Parkinson鈥檚 disease and visual hallucinations are now called 鈥渃ore clinical features鈥� of this condition. People with two or more of these core features are likely to have Lewy body disease. There are new, specialized brain, sleep and heart tests that can support the diagnosis. Making the diagnosis early is important, since some medications that sometimes are used for people with Alzheimer鈥檚 disease (such as haloperidol, often used for severe agitation) are dangerous in people with Lewy body disease.
I don鈥檛 have enough information to say whether Lewy body dementia was likely to be present in your husband. However, I would ask you not to let what is written on his death certificate affect your memory of him. Death certificates are, unfortunately, not always accurate. Dementia often leads to overall body frailty and susceptibility to infections. I would not recommend that you spend your energy worrying about what his death certificate says. Your memories of him mean more. Even if he did have Lewy body disease, the fact that he remained a calm, loving man to the end is the appropriate testament to his life.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected].
