The daughter of a patient recently asked me a question about Alzheimer's drugs that families often bring up. She wondered if the medications were still helping her father, who had been taking them for years and was now entering late-stage disease. "I feel guilty to even ask this," she told me. "But all the many drugs he takes are so expensive, and I'm not sure these dementia drugs are helping. How can I tell if he still really needs them?" When a Caring.com reader posed a similar question last summer, many fellow caregivers quickly chimed in with their stories. It's so common for interest in modern medications to swirl together with doubts about effectiveness, worries about money, and maybe even guilt for even asking the questions. This can be especially true when a dementia such as Alzheimer's disease has gotten pretty advanced.
I was glad this daughter brought her concern to my attention. The four points below are what we discussed. It's what I encourage all families in my practice to consider before continuing cholinesterase inhibitors, such as donepezil (Aricept) and memantine (Namenda):
Four things to consider before continuing Alzheimer's medications
1. These drugs have been shown to slow down the decline caused by dementias such as Alzheimer's, but only by a little bit. In other words, we think these drugs work, but it's unrealistic to expect that they will make a huge difference. In studies of people with dementia (which are mostly funded by the drug makers), at the end of the study period, those who take the drugs tend to have lost a little less mental function than those who didn't take them.
2. Experts continue to debate whether the improvements seen in research studies are really meaningful. Even if researchers find that taking these drugs means better scores on a special mental quiz, that doesn't necessarily turn into noticeably better quality of life for people with dementia or their caregivers. This could be because the impact of the drugs tends to be small. If you have a loved one taking these medicines, and you've found yourself wondering if they're really helping, you're not alone. Often families feel that these medicines don't have much effect, an intuition confirmed by a 2008 evidence review, which described the benefit of these drugs as "marginal".
3. We don't know much about how well these drugs work when used for years and years, or in people with very advanced dementia. This is because most of the research is done on people with mild to moderate dementia, and studies almost never last for more than a year. So far, there's no reason to think that these drugs might work better in advanced dementia, and some experts think they're less useful.
4. These drugs do seem to help certain people with behavior and function. Although the consensus is that overall these drugs have only a small effect, in some people they seem to make more of a difference. Unfortunately, researchers haven't yet figured out how we can identify those people ahead of time. For now, the only way to know whether the drugs will help your loved one is to give them a try: You might be one of the lucky ones that then notices an improvement in sleeping or less irritability.
Know that these medicines may or may not help, and if they do help, a small effect is much more common than a dramatic effect. The American College of Physicians and the American Academy of Family Physicians have posted a summary for patients.
Consider a trial period. For a person who's been taking these drugs for a while, consider asking the doctor to stop them, and see what happens. Often things don't get any worse, and sometimes a person's diarrhea or dizziness gets better. If your loved one does seem much worse after you've given the medicines a few weeks to wash out, you can always ask to resume the medications.
If the cost of medications is an issue, schedule a special visit with your loved one's doctor, to review the purpose of each medication, and see if any medicines can be eliminated.
Don't feel too guilty if the cost of the medications is the little nudge that results in a trial off drugs like donepezil and memantine. Taking care of an older person with dementia is difficult and expensive. I wouldn't be surprised if you find that the money you were spending on dementia drugs ends up better spent on extra help around the house or other things that can more directly improve the quality of life for a family struggling with dementia.
Given all the uncertainty about the benefits of medicines like donepezil and memantine, it's simply smart caregiving to review their use as dementia progresses. What's your experience been? Are you wondering about this, too? Are you considering a trial off these medications? Or do you believe your loved one is thriving thanks to the drugs?
Did you find this information helpful? Why or why not? Dr. Kernisan wants to know, so she can keep improving this blog and better serve this community of caregivers. Your comments and e-mails to her will be very much appreciated.