It’s tough to think ahead when you are in the middle of a caregiver crisis. We constantly respond to the needs of our loved ones, yet seldom have time to learn better ways of solving problems. Today, however, there are pioneering research studies underway to help caregivers find new techniques for managing stress and reacting to common dementia care problems. To learn more about one study, I interviewed Jennifer Merrilees, RN, Ph.D., who is part of an international team now working with caregivers in the United States and Australia.
The U.S. section of the research group works out of the Memory and Aging Center of the University of California, San Francisco. But because the work is done over the Internet, caregivers from any part of the country can participate in their study. Sessions are carried out using online technology that is adaptable to any computer with a webcam. The only restriction for participants is that the dementia patient they care for must have a confirmed diagnosis of Frontal Temporal Degeneration (FTD). This includes people diagnosed with Corticobasal Syndrome, Pick’s Disease, and other variants of FTD. Click here to learn more about definitions of FTD.
This study is unique because it helps the caregiver learn to focus on skills that may help them reduce stress and find new meaning in their role. Facilitators from the study help caregivers identify — and focus on — small things that are valued and helpful in the course of a given day. The general theory underlying the study is that if caregivers focus on specific skills, it could help them cope better. The strategies employed in this study have already been used successfully by Judith Moskowitz in her work with people who have HIV. By offering new tools for managing problems, researchers hope to help reduce stresses that might affect caregivers of different ages and backgrounds.
After an interview with Judy Mastick, the project’s research coordinator, participating caregivers are assigned to one of two groups. One group is interviewed and receives support around life events, while the other gets instruction on the “skill-building” approach. Caregivers engage in one hour online sessions every week for five weeks. Sessions cover a different set of issues and techniques which caregivers can practice between meetings. The U.S. team is seeking 20 caregivers from across the country and would love to get a diverse group of caregivers of all ages.
Jennifer and Judy have extensive clinical experience in the dementia field. Jennifer earned her Ph.D. last year and has spent a dozen years providing dementia care. She also has a faculty position educating nursing students for the field. Judy is a Family Nurse Practitioner and has been involved in research studies for over 15 years. Both of them really understand the impact of dementia on patients and families. The Memory and Aging Center — where the study operates — is a national leader in training doctors, nurses, and pharmacists for positions in the dementia field. You can learn more about research at Memory and Aging Center by viewing their YouTube links.
If you’d like to participate in the study, do what I did: send an email to firstname.lastname@example.org. I did it because I want to learn better ways to take care of my mom — and myself. I also hope that my experience will benefit other caregivers who share my challenges today …or will face them in the future.
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.