Patients with dementia face barriers to care, particularly for underserved communities. One possible solution is a community-based partnership approach and expansion of existing institutional and local resources.
“We need to expand our reach outside the brick and mortar of the [health] center,” says María de los Ángeles Ortega, DNP, APRN, GNP-BC, PMHNP-BC, director of the Louis and Anne Green Memory and Wellness Center (MWC) and professor at the Christian E. Lynn College of Nursing of Florida Atlantic University (FAU). She also is an assistant professor of clinical biomedical science (Secondary) and coordinator of the FAU Memory Disorder Clinic in the Alzheimer’s disease initiative.
One tactic is to expand reach through grants. “We were fortunate to receive a grant that allowed us to do home visits and also to reach out to communities of diverse cultures and underserved communities with no access to specialized dementia care, as we provide at the center,” Ortega says.
The MWC, which is part of FAU’s College of Nursing, began classes and added more diverse staff to build a connection with the community. The center provides memory evaluation, neuropsychological testing, driving evaluation, an adult day center, and counseling and psychotherapy. It also offers caregiver and yoga programs.
“We also partnered with faith-based communities, gaining an entry into what the community tells us matters to them,” she notes. “That’s how we started and continued our efforts.”
The idea of developing a relationship with people with memory disorders and with their primary caregivers is based on caring science — the nursing body of knowledge formed through research.
“We apply this theory and have a relationship with the person,” Ortega says.
The goal is to bridge the gap to providing specialized dementia care, including integrating mental health aspects, as well as memory and wellness evaluation.
“We also focus on the needs of the family caregiver as a unique individual,” Ortega says. “We look to the person behind the caregiver role and address that person’s needs, which enhances the caregiver’s quality of life and enhances their ability to give care to their loved ones.”
The dementia care model faced multiple challenges, even before the onset of the COVID-19 pandemic. One challenge was determining what people with memory disorders and their caregivers actually needed.
“We had individual sessions with the caregivers, an intentional behavioral intervention that helped people have psychological and educational support,” Ortega says. “It also guided them through the disease process of their loved ones.”
Professional support came from the intra-professional team of psychiatric mental health practitioners, a neuropsychologist, and a social worker.
“That’s proven to be very beneficial and effective,” Ortega says. “We also realized that support groups need ongoing and an individualized approach, so we have one-on-one sessions with caregivers, and that continues.”
The individual sessions sometimes are called health and wellness coaching. “That helps with the continuity of care and addresses the needs of the person with dementia and the individual needs of the caregiver,” she says. “In most of the support groups, the health coach is there.”
Coaches guide caregivers to seeing their own health as a priority. For instance, if caregivers say they are very stressed, cannot sleep, and do not know what to do, the health coach will ask the person about the issues that matter most to them. If the caregiver shows signs of depression and anxiety, the coach might ask if he or she would like to meet with a psychotherapist.
“They develop a health and wellness plan or goals with them, based on what caregivers feel is most important to their health,” Ortega says.
At times when the health coach is unavailable, another team member will discuss the identified need with the health coach, who will follow up with the caregiver.
“Within the team, we share and find out whoever is the best person to reach out to the caregiver and go from there,” Ortega explains.
The supportive platform helps people in need of health coaching, whether they are in the support groups, at a day center program, or were identified from a memory and wellness evaluation or driving evaluation program.
“We’re always attentive to both the patient and the family, and we respond by tailoring the services needed by that patient or family or both,” Ortega says.
Support groups are created based on identified need, using input from the people with dementia and their caregivers. For example, some support groups are for people whose loved one developed dementia at a younger age. Another is for caregivers who recently lost their loved ones and need a bereavement or grief group.
“The group honors their loved ones, and also helps them transition to an independent life other than being a caregiver. That’s been very supportive,” Ortega says.
The adult day program is for people with a memory disorder diagnosis. Attendees receive cognitive stimulation and social interaction, including engagement with students, for one day or half a day. This program was interrupted during the COVID-19 pandemic.
“Following COVID guidance and protocols, we have fewer people coming in,” Ortega says.
Case managers help patients transition to the outpatient program. “Our partnering approach also extends to the providers in the community,” Ortega adds. “We work with them as a team.”
The center’s team sees patients and offers their primary care physicians (PCPs) their own impressions, sharing their reports, treatment plans, and findings with PCPs, becoming part of ongoing care. For example, center staff help guide families when it is time to place the patient in an assisted living facility, providing information about organizations that might serve the family’s needs.
“We work with geriatric case managers, who are key in helping to address and follow up on the aspect of ongoing care and coordination of care, and they’re very important,” Ortega says. “A lot of people complain the care is so fragmented, where they go to one provider and then to another. We try to integrate care and keep that communication open for all the providers, addressing the needs of the caregivers, who go through a lot, physically and emotionally.”
Caregiver support targets vulnerable communities with specific educational sessions. Staff are culturally educated for diverse communities, such as the Haitian community. For instance, a Haitian older adult support group meets on Mondays, and another meets on Thursdays. There also is general caregiver support group in Spanish for family caregivers, and a young-onset support group for caregivers of people diagnosed with a memory disorder before age 65 years.
Caregivers provide each other with advice and tips they do not receive from clinicians.
“Support group members are a great source of information for each other,” Ortega says.
Patients with dementia face barriers to care, particularly for underserved communities. One possible solution is a community-based partnership approach and expansion of existing institutional and local resources.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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