Memory Assessment Clinic Counseling Center
Patients who seek a diagnosis from the Memory Assessment Clinic at the J. Paul Sticht Center on Aging now receive more than medical advice. The MAC Counseling Center provides free support and mental health services to help cushion the shock of a dementia diagnosis and ease the journey of patients and families as the disease progresses.
"Having been a cancer doctor for 23 years, I would say that dementia can be a worse diagnosis than cancer," said the co-director of the counseling center, Edward G. Shaw, MD, MA, who conceived the program after his wife's diagnosis in 2008 of Alzheimer's disease stunned his family and sparked a career change.
"The dementia journey is difficult for patients and families," said Shaw. "That's why counseling is so important."
The MAC Counseling Center is a collaborative effort between the Section on Gerontology and Geriatric Medicine and the Wake Forest University Department of Counseling. Co-directors Shaw and licensed professional counselors Philip Clarke, PhD, and Nathaniel Ivers, PhD, have joint faculty appointments with both departments. Program coordinator Rabeena Alli, MA, is also a licensed professional counselor.
Shaw and Clarke spent about a year designing the program, starting with research on existing counseling programs around the world that support patients and family members affected by mild cognitive impairment (often a precursor to dementia), Alzheimer's disease, and other dementias.
"What we found was that no program existed that was exactly like the one we wanted to establish," Shaw said. "This is a resource that is unmatched by any other in the United States or the developed world."
The program operates with an annual budget of $125,000, so it is a very lean operation, Shaw said. "Existing donated funds helped us launch the center for its initial three years; we are actively trying to raise additional money to support the Counseling Center."
The program began in the fall of 2011. Today, it is actively serving more than 100 families, all at no charge, while receiving one or two new referrals weekly. The decision to rely solely on philanthropy was dictated by the nature of health care reimbursements and by compassion.
"Mental health services are not covered very well for patients, let alone for family members who receive counseling," Shaw said. "We didn't want to add to the burden that they were already experiencing."
The MAC Counseling Center offers individual counseling to Medical Center patients and their families and facilitates six support groups, some of which are open to the community. Three groups that average about a dozen participants meet for 90 minutes weekly for 10 weeks, and three maintenance groups meet monthly for participants who desire additional support.
The Early Journey Group is for patients with mild cognitive impairment or early Alzheimer's disease and their primary caregiver, usually a spouse or adult child. Sessions are counselor-led and mix peer support and education. Doctors explain brain function and medical research, and lawyers discuss advanced care directives and estate planning. Breakout sessions divide caregivers and patients into separate groups to discuss their experiences.
"Dementia is a very isolating disease," Shaw noted. "We give patients and caregivers who are on this journey the opportunity to talk to others in a similar situation as well as a trained counselor. This is how our program is unique."
Knowing They're Not Alone
Caregivers transition from the Early Journey Group to the Caregiver Support Group, while patients move on to the Brain Fitness Group, which meets concurrently.
"Caregivers, for the most part, spend time away from family and friends, so they don't have anyone to talk to," Shaw said. "By participating in these groups, they have a place to share their burdens and learn from one another."
Kaycee Sink, MD, medical director of the Memory Assessment Clinic, along with medical students Bryan Neth and Gerard Colmer, created the Brain Fitness Group, funded by a grant from the Schweitzer Foundation. Along with counselors from the counseling center, they found that many caregivers could not attend their group without a place to take their loved ones with dementia.
Christina Hugenschmidt, PhD, an instructor in Gerontology and Geriatric Medicine, Daniel Hall, MA, a licensed professional counselor and counseling graduate student, and the medical students help lead patients in activities such as memory games, tasks involving hand-eye coordination, or arts and crafts. For example, patients make clay models of favorite pets and try to recall fond memories that they share with the group.
"The general philosophy on maintaining the brain is 'use it or lose it,'" Hugenschmidt said. "Our activities also try to foster conversation between people and encourage social interaction."
"You can definitely see the positive effects of what we're doing," Hall said. "People enjoy it and do things they haven't done in a long time."
Spreading the Word
While the counselors continue to fine-tune the program, they have begun presenting their results at conferences and have several papers in development for future publication.
"We're developing a wellness-based, holistic model to care for the patient, the caregiver and the family that can be duplicated by other medical centers and communities," Shaw said. "For most dementia patients and caregivers, comprehensive support and mental health services just don't exist. We are trying to meet this need."