In a comfortable homelike setting, a large room packed with attentive community members gathered last week to listen, learn, and share an evening with dementia expert, Dr. Douglas P. Wornell. The agenda included topics such as defining dementia, addressing diagnosis and treatment of the disease, and offering updates on what is new in dementia care.

Speaking to a larger-than-classroom size audience at Weatherly Inn in Covington, Dr. Wornell made it immediately clear that dementia is non-reversible, “It’s a neurological disease that goes on and on and on.” He reported that UCLA is now engaged in a dementia reversal study where participants in the study group did go back to a better lifestyle. Calling Alzheimer’s “the Kleenex of dementias,” he said that lots of dementias eventually reside in the Alzheimer’s category. “The number one risk factor for Alzheimer’s is simply age, “ he said. “At age 90 to 100, we all have dementia; the brain shrinks as you age,” he explained.

When one reaches age 71, Medicare pays for a brain scan (MRI) that can identify brain loss. An MRI in the earlier years indicates brain status while one is still young in the aging process, and still active. However the disease is most often not diagnosed early and simply gets more severe as aging occurs. Dr. Wornell noted that it is often the youngest child in the family who becomes the caregiver because the effects of Alzheimer’s have taken a long time to be recognized by others. Information from the medical community in general (regular general practitioners) and their information regarding these geriatric issues is not much help, he noted. “They are too generalized with the field; not familiar with the length of symptoms. See a geriatric specialist.” He also put a cap on DNA testing saying “No [don’t do it], families go crazy. It offers too much information and patterns and diagnosis possibilities.”

The beginning or First Stage of Alzheimer’s is short-term memory loss. A 30-question test for such a loss is given in an MD’s office. ”It’s the first memory loss in the brain, and a scary experience,” Wornell said. The patient becomes silent, quiet at activities, and the spouse may collude in the silence. “It’s a social anxiety because the person is uncomfortable to not know names,” he said. “In driving, the person gets lost and the driving routine seems different. The patient may struggle with tracking in the checkbook.”

Middle Stage occurs more than ten years after Alzheimer’s disease progressive brain loss has begun. The person begins to lose their Activities of Daily Living (ADL), as in toileting and safe cooking. Over 20 years into the disease, symptoms of aggression now appear; often a psychosis – like thinking there is poison in your soup so you won’t eat it; misunderstanding family positions as in calling one’s wife “mom”; and missing names of family members. Sun downing, often referred to as afternoon depression, is worse in the mid-afternoon for those with dementia.

Late Stage Alzheimer’s comes third in the fatal neurological disease. One can see it demonstrated. The brain can’t signal the person to walk, or swallow. Then other medical issues are derived from those symptoms…injuries from falling, and pneumonia from choking, or simply failing to eat at all. Dr. Wornell told his attentive audience, “Remember, they don’t die because they stop eating. They stop eating because they are dying.” He cautioned listeners, “This is a key issue to deal with when tube feeding is suggested.”

Alzheimer’s risk factors include diabetes, high blood pressure and high cholesterol. The doctor suggested changing one’s lifestyle early in life: a Mediterranean diet, lots of fish, meditating, low dose aspirin, exercise, not eating within six hours of bedtime. He said that those with dementia should avoid anti-psychotic medications like those designed for schizophrenia and avoid anxiety meds. He supported use of small doses of anti-depressants for aged patients. “They are depressed for good reason,” he proclaimed. Mood stabilizers were also encouraged. In respectful opinion, the doctor punctuated the phenomenon of the illness, “The brain is dying, let the dementia person die.”

As to being an effective caregiver, two easy, workable options that are soothing for both family members and memory care facilitators were offered. Use the techniques “validation” and “redirection” when working with dementia. His first example was in a case where the spouse refers to his partner as “mom.” Dr. Wornell said, “Don’t take offense. Mom was a person they loved, who told them what to do, who taught them skills, who did things for them like banking, cooking, changing diapers and dirty clothes, the one who did the driving. Consider it a compliment.”

Another option was redirection. How does one solve an escalating family issue where the parent living at a mental care facility repeatedly pleads, “I want to go home”? One audience member said her family did indeed take their parent back home to live and the parent continued to repeat the plea, “I want to go home.” Home apparently needed a more precise definition. It was shared that redirection meant to divert a conversation like asking, “Where is home?” It could be Germany the country of heritage, or Wisconsin where the family initially resided. “Home has a broad definition” it was noted. It can offer other avenues for conversation. Another audience member had success with redirection when she gave her mom a chore to work on, “You can come home, mom, when you are able to find and use the bathroom.” That seemed to give the mother hope and her repetitiveness stopped while she pursued that possibility.

The last question from the audience was, “Can you offer comment on the medicinal effects with THC (marijuana) and dementia.” Dr. Wornell emphatically replied, “I’m all for it. It has medicinal effects for Parkinson’s. It’s a good alternative for mood impairments.”

A concise, but difficult summary concluded the evening. Dementia is a disease that severely impacts families and ultimately projects pretty despicable behavior/enormous cost/destruction of relationships. No one would want family to witness or live with this. No patient would want to offer this condition as a last family memory. But, it’s also too close to euthanasia for hospitals, doctors, and some families to suggest termination.