For many families, placing a loved one in a nursing facility is a dreaded choice made only when every last option (and caregiver) is exhausted. But a move may be necessary once a person’s medical needs exceed our expertise and stamina. Care in a nursing home can still be very personal if family members visit often and get involved. Here’s a story of how one loving caregiver enriched the lives of dementia patients at her mom’s skilled nursing residence by starting a “dream fulfillment” program.
Ms. Z. began her work by persuading the facility to add more cultural activities that resonated with the lives of the residents. That meant putting rice and beans and soul food on the dining menu for the home’s many Latino and African American patients. She helped find volunteers to paint bright, live-affirming murals in the drab hallways. Then, after completing these smaller scale projects, Ms. Z helped launch a campaign to raise funds for a Second Wind Dream program. This program is operated by a national organization headquartered in Atlanta, GA. Second Wind Dreams works with communities to discover and fulfill the dreams of elders living in nursing homes, assisted living facilities, and hospice centers. A primary goal of the Second Wind program is to change the perception of aging.
According to the organization, “A Second Wind Dream® is when a group of visionary believers enable an elder to awaken their dreams, often hidden or forgotten.” When such a dream is fulfilled, it “renews hope and champions further dreaming.” The program works with member communities to discover and fulfill the dreams of elders at the member site. In the facility where Ms. Z.’s mom lives, they were able to get a local philanthropist to donate the fee required for membership in the national network. To fulfill one resident’s dream, the group had Mario Andretti visit the site for an afternoon. To link the resident’s dream to other community activities, they also had a mural of Mario Andretti, Larry Holmes, and Chuck Bednarik — local heroes for the home’s Lehigh Valley residents — painted in the hallway. Staff and volunteers developed a process to get elders to tell them their dreams which are now fulfilled once or twice per month. In addition, the facility now has a “dream celebration” every three months.
The volunteer group has organized fundraising events to pay for some of the dreams which have included flying family members in for visits or taking a resident to Niagara Falls. But the nursing home has a multi-ethnic population and some dreams have been as simple as having a favorite childhood food — like collard greens or sweetbreads — served on a special day. One resident had an eyelid that never went down and was able to get a new prosthesis to help her lower the eyelid. You can read more about fulfilled dreams at www.cedarbrookdreamcatchers.org , the URL for the Pennsylvania site. Second Wind Dreams is celebrating a national anniversary on January 13th ,2011 and hopes to fulfill the dreams of many people across the country that day.
For Ms. Z.’s mom, the dream was seeing her whole family together. This involved transporting 25 people from around the U.S. to celebrate her “half birthday” in July, when snow could not ruin their travel plans. What a joyful day that must have been! Fulfillment of a dream like this make our waking lives more vivid and rich. Consider helping an elder realize a long-held dream at this emotion-filled time of year. Next week I’m taking my mom to see the Christmas tree at Rockefeller Center. It may be our last chance to make this trip, and I want her to be as happy as possible. Plus, she’s not the only dreamer in the house.
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!