Living With Alzheimer's Disease – Your Questions Answered

In each issue of our Johns Hopkins Memory Bulletin, leading neurologists answer readers' questions about Alzheimer's disease, memory, and dementia. Here are two recent examples.

Alzheimer's Disease Question 1: My 86-year-old father lives with us and has had Alzheimer's disease for three years. My wife and I are planning a trip by car (six hours) with my father to Jackson Hole, Wyoming. We are wondering if there is anything special we should be aware of during this two-week holiday when we will be far away from home with someone with Alzheimer's disease. Via e-mail.

Answer: If his Alzheimer's is relatively mild -- and especially if your father has enjoyed traveling in the past -- things should go well, if you remember a few things.

• First, travel itself is tiring, especially these days, so make sure you don't expect too much. If your father appears fatigued, make use of a wheelchair.
• Second, remember that people with Alzheimer's disease do best in familiar settings, so going to an unfamiliar place can "bring out" underlying cognitive impairments. You can minimize this by frequently reminding him where you are and what is going on ("Dad, isn't it great to be here in Jackson Hole for vacation?").
• Third, you should not leave him alone, even if things are going well -- the unfamiliarity of the new environment can suddenly trigger disorientation, fear, and distress in someone with Alzheimer's.

If you hire a stranger to be with him while you go out and explore the area, the person should frequently (even every five or 10 minutes) remind him who they are, where they are, and what is happening.

Alzheimer's Disease Question 2: It seems like every mealtime is highly questionable for my 79-year-old father who has Alzheimer's disease. Many times he will start to eat and then abruptly stop, sometimes after just two minutes. On average, he eats half of his meals. Even after coaxing him to eat more, he always refuses. Dad used to have a hearty appetite, but now, with his refusal to eat, he is starting to lose weight and this has me concerned. Your counsel would be greatly appreciated. Montreal, Canada

Answer: The average person with Alzheimer's disease loses 1-2 pounds per year. If your father is generally keeping his weight steady, I wouldn't worry. If your father is losing more than 1-2 pounds per year, he should be assessed for depression, medications that suppress appetite, dental disease, and swallowing problems. If any of these is present, they should be directly addressed. Cancer is an uncommon but serious cause of poor appetite that needs to be considered.

In addition, make sure that he has plenty of time to eat. Some individuals are just slow eaters, or Alzheimer's disease seems to slow them down, but there is rarely any hurry to eat. Let him go at his own pace if he eventually eats enough but it takes one hour. Does he have favorite foods or things that are easier for him to eat? These might make a difference.