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  • Lisa Jacobs

Live Unique, Be Unique: A New Approach to Behavioral Cognitive Programming for Atypical Dementias

In the western suburbs of Boston, Golden Pond, a stand-alone assisted living community, has designed a ground-breaking approach to serving residents with atypical dementias and other progressive neurological disorders. This program addresses the unique needs of these clients who most often suffer from Frontal Temporal Lobe Dementia (FTD), Parkinson’s disease, Multiple Sclerosis, Traumatic Brain Injury, and/or Chronic Concussive Disorder. The program has adopted the tag line: “Be Unique, Live Unique” to emphasize their dedication to providing customized, person centered care as well as accentuate their distinctive clinical assessment and behavioral management approaches.

Lisa Jacobs, the program’s founder and a psychiatric nurse by training, initiated this program after identifying a need in her own community. After becoming Executive Director in 2015, Jacobs observed that her current residents fell into two distinctive categories: (1) Traditional memory care residents, average age 84 with moderate to end stage dementia, and (2) a smaller subcategory of younger residents who presented with atypical dementias.

These residents each had a presentation that did not fit the mold of the typical Alzheimer’s resident. They were younger, more mobile and appeared to have more cognition and ability to engage than their counterparts.

What Jacobs quickly assessed was that these residents were not benefitting from the current programming as it was geared toward those with moderate to severe cognitive impairment. In researching these atypical dementias as well as other neurological disorders, Jacobs discovered that while these diagnoses and diseases where distinctively different, she found common threads regarding the intellect and ability that were less common in typical dementia residents. A pattern began to emerge illustrating the need for unique programming for these younger, more mobile and differently abled residents. From there, Jacobs reached out to community partners, who she then asked to educate her on the specific needs of these potential residents and their families. What she learned was that specific programming and resources for this unique population were seriously lacking. Jacobs learned that these families experienced grief, loss and profound hopelessness while trying to care for their loved ones at home. She uncovered some realities the Aging Life Care Management industry has been aware of for some time.

First, these families had extreme difficulty in finding appropriate placement, Second, when placement was found, often their loved ones were quickly bounced from facility to hospital because their behavioral symptoms were labeled as “problematic” or “aggressive”. Third, if a resident did not quickly adjust to the new environment, they were seen as failing and were again hospitalized and, most often over medicated. Fourth, these residents now had multiple hospitalizations and were then rejected by other assisted living memory care programs. These realities often meant that a family had no other choice but to place their loved one who was most likely under the age of 65 in skilled nursing facilities.

Armed with this information, Jacobs and her team went to work on designing a program that could meet the specific emotional and psychological needs of the younger population with atypical dementias and neurological disorders. What they created is a therapeutic milieu and community that offers 3 types of life enrichment and engagement: meaningful, purposeful and passive engagement. For each resident, an individualized program is created to specifically target how the resident care team will engage with the residents in these three types of engagement.

Meaningful Engagement

The team focuses on person centered interactions, i.e. evaluating what kind of activity has significance to the individual. For example, one of the residents who currently lives at Golden Pond is a former CIA agent who loves to ride motorcycles. His meaningful engagement plan is to work with the maintenance team on engine repair and he gets to sit on a motorcycle of one of the team members and share some stories about his Ducati. Another resident is a former professor who taught English and would often quote Shakespeare. His daily engagement is more focused on the arts and literature.

Purposeful Engagement

The Special Care Residence at Golden Pond’s success is credited to the collaborative team of clinicians and therapists, including Licensed Independent Social Workers, Psychiatrists and Nurse Practitioners, Speech & Language, Physical Therapy and Occupational Therapy and the Golden Pond Resident Care team to design individual plans.

One resident might be require resources to promote executive functioning, while another may be experiencing aphasia and is working on communication skills and strategies. Each resident is assessed to determine their strengths and how the community can build upon them to promote dignity and a sense of control. One resident worked with a speech therapist on communication struggles and he wrote a poignant piece about who he was and what he needed from others in order to communicate more effectively with them. His writing is an example of how the Special Care Residence at Golden Pond helps each person engage in a different kind of discussion about their symptoms.

Passive Engagement

Like for typical dementia residents, passive experience is yet another way for these non traditional assisted living residents to engage with others. Simply sitting in the kitchen while resident care team members are preparing food, experiencing aromas and finding positive connections while sharing a meal is so helpful to combat feelings of anxiety and isolation these individuals often experience in assisted living settings.

The BCAT (Brief Cognitive Assessment Tool) Approach

The Resident Care team at Golden Pond has collaborated with Dr. Mansbach at the BCAT Institute and have become premier providers in the principles of the BCAT approach. The BCAT Approach is an applied concept for assessing and working with people who have memory and other cognitive impairments. It is designed for clinical and residential settings where cognitive functioning and impairment are central issues.

The BCAT Test System is comprised of five unique assessment tools that are used to evaluate current cognition and mood. The primary test, the Brief Cognitive Assessment Tool (BCAT), can be administered within 10-15 minutes. The testing gauges an individual’s orientation, verbal recall, visual recognition, visual recall, attention, abstraction, language, executive functioning and visual-spatial reasoning. The test is sensitive to and can help determine cognitive functioning along a continuum (normal, mild cognitive impairment, dementia) and can provide predictors of Memory and Executive Functioning. The BCAT has been proven to accurately predict the need for basic and instrumental activities of daily living, deficits in care abilities and risks such as falls and lower the risk of hospitalizations and utilization of psychopharmacologic interventions.

Additional test include the Brief Anxiety and Depression Scale (BADS) for evaluating mood impairment and the Kitchen Picture Test of Judgment (KPT) as a visually presented test of practical judgment. BADS is a screening mechanism that rapidly provides scores for anxiety and depression. BADS is ideal for providers that want to monitor mood status over time. KPT includes an illustration of a kitchen scene in which three potentially dangerous situations are shown. The participant is asked to describe the scene, identify the three high risk situations, rank the order of importance of the three and offer solutions that may resolve the situations.

Lastly, the Brief Cognitive Impairment Scale (BCIS), is used to gauge cognitive functioning. The BCIS is an 11-item, 14 point scale to capture cognitive changes over time and to help care providers determine the best approach to minimize symptoms. If the person scores on the low side, it is indicative that the resident lacks the ability to change his or her behavior on their own so the environment/community needs to change the response to the symptoms. All the above mentioned screenings take less than 3 minutes to complete thus not causing much stress to the participant. All BCAT test tools are designed for rapid administration and are repeated in time intervals to track progress over time. Using these tools, the resident care team members can efficiently track the functional ability, mood, and emotional status.

Golden Pond is a Gold Level BCAT certified community and it is the only assisted living community in New England to carry this distinguished certification. Their unique cognitive behavioral programming is based on the necessity for meaningful engagement, effective communication and proven best practices for behavioral management. All necessary components for providing a new quality of life for residents and their caregivers.

In addition to using the BCAT Approach, ongoing management of this unique special care residence takes intentional commitment to and proactive training of all resident care team members, strong collaborative relationships with all outside professional providers and the fluidity to adapt to the ever changing presentation of this population.

Lessons for Care Management

What can the success of Legacy Village at Golden Pond teach us as Aging Life Professionals? First, that it is possible to this kind of unique, boutique programming for this underserved population within a private pay setting such as an Assisted Living Community. Often, Aging Life Care Managers hear from providers that there just isn’t enough volume of potential residents that are able to afford this level of care and services. However, by combining those with atypical dementias with others who have similar presentations due to other neurological disorders, it is possible and can be both successful and profitable. In Golden Pond’s case, the demand has only increased because of the success in providing a safe, therapeutic and life enhancing daily experience for this population. As Aging Life Care Managers know well, it is one thing to say you will accept this type o resident, it is another to truly care for them.

Pilcher, Warren, Jennifer, PhD, CMC; Jacobs, Lisa, RN, MA. Be Unique, Live Unique. Journal of Aging Life Care, Spring 2017, 17-20

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