This week Being Patient was at the Alzheimer’s Association International Conference in London, where over 5000 leaders in dementia research gathered to discuss the latest thinking on the cause, prevention and treatment of the disease. We asked our readers what they wanted to know and got the answers from the experts.
What’s the latest thinking on the duration of each stage of dementia?
We asked Keith Fargo, neuroscientist and Director of Scientific Programs at the Alzheimer’s Association and Claudia Kawas, Professor of Neurobiology and Behavior at University of California, Irvine and leader of the groundbreaking 90+ Study. Here’s what they said:
Dr. Fargo: There’s no consensus on how long each stage of the disease lasts. The average life expectancy is four to eight years but it can be up to 20 years if someone is younger when they’re diagnosed. People also get diagnosed at different stages of the disease and they progress from losing the ability to make new memories, to behavioral problems like trouble sleeping, depression, agitation, anxiety and aggression and finally losing the ability to perform the most basic tasks like walking, swallowing or breathing, as the brain tissue is eaten away. The rate of progression depends on factors like genetics or gender. For example, if you have the ApoE4 gene and you’re a woman then you’ll progress faster.
Dr. Kawas: The question is actually difficult to answer because of the huge variability [among patients]. Some patients appear to remain stable with little decline for four or more years, while others progress through several stages in the same timeframe, and [you get] everything in between. The drugs we have do not change this much, if any. In addition, how long you live with the disease, in total, is mostly dependent on how old you are when you get it. Younger elderly have a longer duration compared to very old people. One of the best ways to estimate what is ahead is by the rate of change that you’ve observed in the past year or two.
What are the top resources for non-drug management of symptoms such as agitation, anxiety, and hallucinations?
We asked Séverine Samson, a clinical neuropsychologist at University of Lille, Paris. Dr. Samson has conducted the first randomized control trials to test whether musical activities can improve the behavior and mood of dementia patients and has found evidence that they do.
Dr. Samson: Any pleasant, group-based activity with social interaction will be very helpful. Patients often experience social isolation because of the decline in their senses and their motor system. Depending on what the patient likes, you can try several activities with them. If it’s a musical activity, even just listening and finding playlists that they like is helpful. If you can combine those activities with physical movement, it’s probably much more effective. It’s important to get people moving and it’s well known that music can help to initiate physical movement. You don’t necessarily even need to do it for a very long time.
What’s the current thinking on cannabis as treatment for dementia? What kind, for what symptoms, and if you use cannabis, must you discontinue other treatments, or can it be used as an adjunct therapy?
We asked Keith Fargo and Chiadikaobi Onyike, Associate Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University. He directs their Frontotemporal Dementia and Young-Onset Dementias Program.
Dr. Onyike: The general view is that it may be useful for the mental aspects of the disease, such as irritability, agitation and aggressive behaviors. There are studies suggesting that cannabis derivatives may ameliorate agitation and aggression in dementia. My colleague, Paul Rosenberg [a psychiatrist at Johns Hopkins] is leading a study to investigate the effectiveness of dronabinol [a cannabinoid] to treat agitation and aggression in dementia. Regarding drug interactions, I cannot advise anyone to insist on cannabis over other prescriptions – the decision has to be made in conjunction with their physician.
Dr. Fargo: There isn’t a great deal of research on cannabis and dementia – the studies that have been done are very small-scale. They found that there is some potential benefit to mood but it has not been shown to have a benefit on cognition. The problem with marijuana is that it has a number of undesirable side effects. Chronic users have problems with their memory and can become demotivated. We really need to do some clinical trials before we can make a recommendation one way or the other. We’re not recommending that people use it [at this stage]. We think it’s far too early for that. There could be significant health drawbacks and legal consequences, given that it’s still illegal at the federal level in the U.S.
One thought on “You Asked, We Got the Answers”
Hi. As a caregiver to my wife with dementia i discovered her interest to large print book reading light romances etc. has developed where she can spend an hour with a book. I don,t know how much is retained however often she get emotional with characters in the book which strikes me as evidence that some meaning is being retained. My interest now is to find a solution to get her to slow down reading and skipping lines and even pages.
Perhaps impatient to get to the next interesting piece. So the question is ,say with an e-book can a line in a page be made to move up to suggest that this the next line one reads and not rush off to the next paragraph. To those up with what one can do with computer print or what ever please work on this .