Tag Archives: caregivers

The Latest on Drugs, Treatments, and Scientific Views of Dementia

While some families are eager to get their loved ones into drug trials, my family has avoided that path. We had some horrible experiences with current FDA approved treatments and don’t believe that the potential benefits of unproven drugs outweigh risks that are hard to predict. Nevertheless, we are optimistic that science will eventually reveal the mysteries of dementia and produce more reliable treatment options. In my interview with Dr. Roy Hamilton of Penn’s Memory Center, I asked him to comment on the range of approaches currently being explored.

Before we took my Mom to the Memory Center, our family pursued some alternative approaches to fighting her symptoms. These included chelations and nutritional supplements. I asked Dr. Hamilton to assess the value of these and other homeopathic regimens for fighting the disease. He said, “Allopathic doctors – those who are educated in the Western medical tradition — must remain a little skeptical about these approaches” mainly because there is insufficient data to show if they are truly effective. But he agrees that this lack of data also makes it hard to say that alternative treatments have no value. From his perspective, it’s important to remember that even if alternative regimens are helpful to a dementia patient, “You can still have side effects or interactions with other aspects of your treatment. You need to consider that when combining them with other items prescribed by your doctor.”

Among drugs on the market today, the most effective include two FDA approved medications which are acetylcholinesterase inhibitors. Drugs in this category include Aricept, Exelon, and Razadyne. Gastrointestinal problems are the most common side effect of these drugs. Another treatment uses an NMDA receptor antagonist. This drug affects the receptor in the brain that is associated with neuroplasticity. Mementine is one drug which has fewer side effects but may be less efficacious in combating symptoms. Dr. Hamilton says that the general outlook for medication development has not been encouraging. Scientists are now experimenting with monoclonal antibodies which attack the protein that causes Alzheimer’s disease. Although these drugs are now in the last phase of clinical trials, some serious clinical side effects have been observed. One new line of research focuses on using resveratrol, a polyphenyl antioxidant from red-wine. The research in this area is too new to assess its potential value and weary caregivers, please note: Red wine is not a medicine!

I asked Dr. Hamilton how caregivers should deal with their own health in light of the common fear that we may get the disease ourselves. His advice is, “Stay intellectually active, physically active, and socially active. Follow a healthy diet. This is a good prescription to help anyone maintain cognitive function.” He also suggests joining a support group. Being a caregiver can be a very isolating experience, which “can be borne more easily when shared.” He advises caregivers to take a structured break with time off from the family member. This practice is good for caregivers, but it also improves care when we returned to our loved one feeling refreshed. Respite care and adult daycare programs can help caregivers get needed breaks.

Dr. Hamilton doesn’t feel that it’s imperative for family members of dementia patients to get tested for genetic markers of the disease since most cases are “polygenetic” and you can’t predict your odds of getting the disease by determining that you have just one genetic marker. He also thinks that the cost of genetic testing would be unjustified since it’s not clear what you could do to modify your disease if you discovered that you were susceptible. Finally, Dr. Hamilton reminded me that since about 40% of all people over the age of 80 have the dementia profile – everybody should make a long-term care plan!

Holiday bargains: Anybody find a sale on patience?

It’s Sunday, overcast — there’s a tiny chill in the air. This is perfect writing weather. Grey skies like these helped Dickens and the Bronte sisters write their classics. But all I want to do is get a few pages down before my caregiver routine begins. Got my paper, my pen, the laptop — and I’m trying to be quiet as a mouse so I won’t wake Mom. Three sentences in, I hear the door squeak, the sneakers flopping toward me. I know now that my quiet Sunday has come to an end. I want to shriek with aggravation, but it’s Sunday, so instead I’m praying for patience.

They sell so much junk at this time of year. I’ve seen sales on plastic candles that have no scent or real light. Stores are full of enormous blow up Santas that look like they blew away from the Macy’s parade. But if I could find a store selling extra large quantities of patience, I would max out every credit card, empty the bank account, and buy as much as I could.

During the month of December there is so much to do. Even a simple trip to the grocery store turns into a NASCAR event as drivers try to zip past you for a parking space or air kiss your fenders while they chat on the phone. Things that I am normally able to manage without complaint, like my mom’s five hundred requests to buy Christmas cards, start to feel more irritating than usual. My search for a few minutes of peace — or a bit of silence — never seems to bear fruit.

If you happen to come across a store or website where caregivers can purchase a giant economy-size carton of patience, let me know. It would be my favorite holiday gift and I’d be more than happy to share.