Blue Ridge Dementia Care Conference

Caregiving experts and vendors came together in Purcellville recently for the 2022 Blue Ridge Dementia Care Conference to help those caring for, or beginning to care for, dementia patients.

AARP Virginia helped sponsor the conference, which was presented by Carducci Caregiving Consulting.

Mike Carducci, a certified music therapist, kicked off the conference with a lively discussion about how music can affect the mood of care partners.

“Music,” said Carducci, “is universal, but rhythm is even more universal.”

We are introduced to rhythms in the womb through heartbeats, breathing, and chewing, and these rhythms are stored at the core of the brain.

Patients with brain diseases like dementia, however, remember older memories, including music, while they lose the ability to recall more recent events. The key, said Carducci, is to understand where the care partner is and orient yourself to that point. He compared the brain of dementia patients to bad blocks on a hard drive or a record with a scratch that skips. The information may be there, but the patient can’t access it.

Carducci suggested using music that has meaning to the patient. Lyrics are less important than the genre, provided the genre has meaning and the patient can relate it to their memories. He recommended using an MP3 or portable CD player with large headphones rather than earbuds to help block out other noise. He also recommended using sing-a-longs, especially with kids.

Dependent upon their mood and the type of music selected, “Music can be both a pick-me-up and have a calming effect on your care partner,” Carducci said.

When Loretta Veney’s mother was diagnosed with dementia in 2006, she said, “Other than dying, what’s worse than not being able to remember anything?” As her caregiver, Veney immersed herself into learning everything she could about the disease. Now an inspirational speaker and caregiver advocate, her presentation focused on what she learned during her caregiver journey, as recounted in her book, Being My Mom’s Mom.

“Forgiveness,” said Veney, “is mandatory” for all caregivers, who must learn to forgive others as well as themselves. Overcoming guilt about what one can or cannot do is also critical.

Some of the challenges of dealing with dementia patients include their wandering, refusing, eating, and accusing. Veney used GPS trackers in her mother’s shoe, so she’d know if she was wandering beyond safe boundaries. She learned to know when to let things go and not push her mother too far. To help with her mother losing things, she kept duplicate items like purses and keys available.

Veney’s tips for communicating include setting a positive mood, getting the person’s attention, stating messages clearly, asking answerable questions, and breaking instructions into small steps.

As for learning patience, Veney suggests knowing one’s own triggers and adopting a positive attitude, even when the care partner is really trying one’s patience. Repetition, either saying or doing the same thing over and over, is an issue with many dementia patients and can be trying for caregivers. Fidget toys can help the patient break the repetition. Veney successfully used Lego blocks with her mother.

Veney’s motto for dementia is “Have No Expectations.” She said one never knows what might or might not happen, and it’s the memories that keep one going.

Dr. Chiadi Onyike, a specialist in neuropsychiatry who focuses on care of individuals with neurodegenerative dementia, addressed whether ethnicity affects dementia care.

Studies show the highest proportion of individuals with Alzheimer’s disease are African and Native Americans, he said. Some of the Alzheimer’s risk factors, such as hypertension, also trend higher in people of African descent, not just in the United Stated, but throughout the world.

Ethno-cultural differences in care can be a factor. African, Native, and Hispanic Americans are less likely than Whites to use formal services and are thus more likely to receive diagnoses later in the progression of the disease. Poverty and infrastructure also are barriers to some groups receiving timely care, he said.

While research in ethnicity and dementia is currently limited, the goal is to reach more diagnoses more quickly and provide patients with needed resources.

“Experts and scientists need to look at how heritage affects dementia from a genetic and socio-cultural standpoint,” he said.

Melanie Chadwick, a gerontological nurse practitioner at the Georgetown University Memory Disorders Program, discussed the current and upcoming status of Alzheimer’s research. She said that currently there is no standard diagnostic test for Alzheimer’s, but that is improving. Diagnosis typically begins with the primary care physician to rule out other issues, then progresses to more thorough workups and testing.

While no new Alzheimer’s drugs have been introduced since 1993, the disease is more recognized and has been subject to ongoing research. Improvements in brain imaging have helped researchers understand the processes that cause dementia.

Between 2002-2019, she said, 99 percent of clinical trials for new drugs failed, mainly because testing involved the wrong factors. Four new medications, however, are currently progressing through clinical trials at Georgetown. Georgetown is also looking at prevention trials for those with risk factors and conducting observational studies to help understand why some people develop early onset symptoms.

Future research, said Chadwick, will focus on earlier detection with new tests as well as better treatments to help modify the disease through a combination of drugs. Researchers are also looking at prevention techniques to treat those at risk before symptoms appear. Preventative measures such as following the Mediterranean Diet, exercising for 20 to 30 minutes at least three days a week, and being socially engaged have been shown to help prevent Alzheimer’s.

Clinical trials for persons with mild to normal risk factors can last from 18 months to four years. Other qualification requirements apply. All trials at Georgetown are random and double-blind, meaning participants don’t know whether they are in a control or trial group. For more interest in clinical trials, Chadwick recommended contacting the National Institutes of Health website clinicaltrials.gov or Georgetown’s Memory Disorders Program.

Karen Johnson’s caregiving journey began when her in-laws were diagnosed with dementia, beginning with in-home care and ultimately moving to assisted living. A physical therapist who is also a dementia care specialist, Johnson shared her caregiving experience with attendees.

Caregivers, said Johnson, must understand there is no set formula or pattern to their care journey, nor is there a predictable outcome. Some of the considerations to choosing the method of care include the patient’s social well-being, their reaction to stress and changes, and their personality and ability to accept care.

Choices include having the care partner live with family, which may involve modifications to the home; having them continue to live at home with in-home care; or moving them to a care facility. Johnson recommended keeping all options open, because what might seem best at one point in time may change later as the disease progresses.

“Don’t make false promises,” said Johnson, because you cannot guarantee they can be kept. Caregivers may find themselves overwhelmed, trying to manage everything.

Some of the considerations for in-home care include safety and accessibility; the ability of the person to handle financial affairs, medication, and food; and providing social, cognitive, and physical stimulation.

Sometimes a care facility is the best choice. Based on the patient’s needs, options include full nursing care, assisted living with provisions for multi-level care, and memory care.

Johnson recommended visiting different facilities to see what is available before the need arises. Have several options available and be willing to change as needed. Most importantly, caregivers must care for themselves as they care for their care partner.

Bobbi Carducci closed out the conference with an interactive presentation inviting participants to discuss their caregiving challenges and share ideas. Caregivers, said Carducci, often get frustrated with their care partners because they can’t understand why they don’t act “normal.” Caregivers need to understand that the patient cannot control how their brain works and they can’t expect them to behave the same way they did in the past.

One participant expressed guilt for considering placing their loved one in a care home. Carducci acknowledged the guilt will be there, so it’s best to feel it and move on. Caregivers need to take care of themselves so they can take care of their care partners. But, said Carducci, “don’t tell me to take care of myself unless you do something to ease the burden.” Caregivers should ask for help, then assign tasks, such as picking up groceries or mowing the lawn.

As for lying or not being entirely truthful to dementia patients, Carducci asked, “Do you want to be right or make them feel safe?” In dementia patients’ brains, stories go on like bad dreams, and they are often stuck in the past. Don’t insist they have children if they say they don’t, for example. Instead, validate the person and ask them about what they see, or ask about their past. For more information about caregiving resources, see AARP’s Family Caregiving Guides.