My October interview with Dr. Roy Hamilton provided lots of food for thought. In honor of Thanksgiving, I’m offering Part II as a second course for caregivers seeking helpful strategies they can incorporate into their daily routine.
I asked Dr. Hamilton, who sees a diverse group of patients at Penn’s Memory Center, if he notes any differences in the effectiveness of care practices used by families of different cultural backgrounds. In his research on this issue, Dr. Hamilton found that in certain Latino and African American populations, families are less likely to pursue assisted living or nursing home care and prefer to care for family members at home. His review of studies on the topic of home care revealed that there is some evidence – but nothing conclusive – to suggest that there are lower mortality hazards associated with caring for family members at home. Although not all studies agree with this finding, it does offer some moral support for those of us providing home care for dementia patients.
On the topic of non-medical strategies that caregivers can adopt, Dr. Hamilton offered the following advice, “It’s important to make nutritional and lifestyle changes. A heart healthy diet rich in antioxidants can be useful for maintaining overall cognitive health.” Furthermore, he warns that, “Those who don’t follow this path risk exacerbating the accumulation of vascular disease in the brain.” This can make things even worse for a dementia patient. Dr. Hamilton also mentioned that, “Aerobic exercise helps to preserve cognition for just about everyone — and patients benefit from a regular aerobic exercise regimen and hobbies that keep them mentally active.” Dementia patients also do better when they have a high degree of social engagement. Those who make friends and stay connected with other people fare better than patients who have become socially isolated. It is good to remember this as we approach the winter holidays. Now is the time to arrange visits with friends and family members who may not always remember to stay in touch. And if you and your loved one are eating lots of rich holiday foods, try to work some exercise into your schedule.
On a related note, Dr. Hamilton mentioned that, “The prevalence of depression is much higher among dementia patients than it is within the general population.” If depression is left unaddressed, it can promote faster cognitive decline. Keeping your loved one active and engaged with other people may help to reduce the impact of depression. To help my mom, I try to: 1) Take at least two long walks every week, 2) Organize at least one weekly dinner or lunch with friends, and 3) Encourage Mom’s friends to call her and share information about their lives. Although she doesn’t have a lot to say, she is so happy when she gets a call that shows people still care about her. As a busy caregiver, these scheduled walks and calls from others also help me feel healthier and more supported as we navigate the strange path of this disease. Despite the daily ups and downs, we are planning to have a Happy Thanksgiving and hope that you will too!
Providing companionship to a person with dementia is not easy. Memory lapses disrupt communication and can make the caregiver feel like they live in an echo chamber. Despite these barriers, I believe that I have developed a strong ability to understand my mom and enjoy quality time with her. Although I have learned a lot through trial and error, I talked with Maris Krasnegor, the director of the Communicare program at the Community Outreach Partnership (CORP), to get her advice on building a strong relationship with a fragile elder. In her 21 years of matching Communicare volunteers with elders in Philadelphia, she’s learned to identify some behaviors that can help a younger person foster a deep connection with a fragile or impaired elder.
I asked Maris to list some qualities that can help someone cultivate a strong bond with a fragile elder. She cited, “Patience, careful and compassionate listening, a non-judgmental attitude and a focus on the specific needs of the elder.” There are many issues that can derail your efforts if you are not careful about the way you approach problems. Maris notes that some common obstacles include, “Unanticipated time conflicts. People don’t always realize at the beginning that it is necessary to devote time to the relationship even when other things come up.” This has certainly been true in my experience. Time takes on a different dimension when you are helping someone with cognitive impairments. It took me months to give up my “let’s solve this problem” attitude and adapt to the rhythm of my mom’s real needs – which are not what I originally anticipated.
In the Communicare program, many of the elders have outlived their family members and need help getting health care or other services. Maris functions as sort of a coach who helps the volunteers learn how to help their elder match get what they need to improve their quality of life. She is also a bit of a marriage counselor who coaches elders and volunteers to resolve conflicts that arise in the relationship. I’m sure I’m not the only caregiver who wishes I had this kind of help! Caregivers are often exhausted by the effort it takes to distract their loved one from a problem that has no instant solution. A coach like Maris might help me find more patience when it is most urgently needed.
Maris feels that elders with dementia symptoms are best-served by volunteers who are older or have significant life experience. She says that it’s important to have “the ability to meet the older person where they are and to accept the person and not judge them.” This has been true in my experience. People who have the hardest time appreciating my mom are those who look at her through the lens of who she once was, instead of accepting her as she is now. The most supportive relationships, according to Maris, develop when the younger person encourages the elder to get involved in activities they can still manage and have conversations that do not focus solely on the elder’s problems. This reflects one of my basic strategies: When my mom just seems stuck and lost, I try to shift her focus to something that will stimulate her senses. Despite her many impairments, she still loves the color of a flower, the beat of a dance tune, or the sound of a bird outside our window.
In the Communicare program, Maris has seen volunteers connect so deeply with their elder that they helped plan the funeral or attended a family memorial as an honored guest. These relationships crossed religious, cultural, and racial boundaries. If a volunteer can create this kind of deep bond with an elder, we can also do this within our families. In spite of the many frustrations, finding a way to deepen ties with an impaired family member can be one of the most rewarding experiences in life.