“Be Unique, Live Unique” A New Approach to Behavioral Cognitive Programming for Residents with Atypical Dementias
About the Authors
Lisa Jacobs, RN
Chief Executive Officer
Golden Pond Assisted Living
50 West Main Street
Hopkinton, MA 01748
Fax (508) 435-2213
Lisa Jacobs, RN has been a nurse for nearly 30 years. She received her nursing degree at Boston College and went on to obtain her Master’s degree shortly thereafter. Ms. Jacobs is also a legal nurse consultant and works closely with other medical professionals to assure best practices and regulations to meet the ongoing and ever-changing needs of special populations, including seniors and those with traumatic brain injuries. Over the past three decades, Ms. Jacobs has utilized her specialty in neurobehavioral programming and as a nursing executive across many different settings including hospitals, skilled nursing facilities and assisted living communities. She originally worked at Golden Pond as the Wellness Nurse from 1996-2000. While there, she opened the first behavioral health program within an assisted living facility in New England. She has currently returned to Golden Pond as the Executive Director where she has had the opportunity to develop and implement unique programs for residents who live with atypical dementias.
Jennifer Pilcher Warren, PhD, CMC
Senior Executive Director
Overlook CARE Management
99 Derby Street
Hingham, MA 02043
Jennifer Pilcher Warren, PhD, CMC was awarded her doctoral degree in Gerontology from the University of Massachusetts in Boston. Her professional experience has focused primarily on care and housing arrangements for elders with Alzheimer’s disease and related dementias, including policy and fundraising work for the Alzheimer’s Association of Eastern Massachusetts, the Alzheimer’s Association of Utah and the Massachusetts Association of Older Americans. She has held several positions on the board of the New England Chapter of the Aging Life Care Association and is currently the Editor in Chief for the Journal of Aging Life Care. For seven years, Ms. Pilcher Warren was affiliated with Hearthstone Alzheimer Care Assisted Living programs in Massachusetts and New York, where she held a number of management positions. For 8 years, Ms. Pilcher Warren worked both as a Geriatric Care Manager and as the Director of Operations for AZA Care Management of Boston. She currently holds the position of Senior Executive Director of Care Management for Overlook C.A.R.E., a non-profit Life Care Management practice with offices located in Hingham, Dedham, Plymouth, and Charlton, MA.
Lisa Jacobs, RN, and Jennifer Pilcher-Warren, PhD, CMC
In the western suburbs of Boston, Golden Pond, a stand-alone assisted living community, has designed a groundbreaking 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 Concussion Syndrome. 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.
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 these populations 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, families of people with atypical dementias had extreme difficulty in finding appropriate placement. Second, when placement was found, often their loved ones were bounced from placement to placement because their behavior was labeled as “problematic” or “aggressive”. Third, if a new resident could not adjust to the facility, they were seen as failing and were hospitalized and, most often, over medicated. Fourth, these residents often ended up with multiple hospitalizations and were then rejected by even more facilities. These realities often meant that a family was faced with placing their loved one in their 40’s or 50’s in a skilled nursing home facility.
Armed with this information, Jacobs and her team went to work on designing a program that could meet the specific needs of younger people with atypical dementias and neurological disorders. What they created is a therapeutic community that offers 3 types of engagement: meaningful, purposeful and passive engagement. For each resident, an individualized program is created that specifically targets how the staff will engage the residents in these three different ways.
The team focuses on person-centered engagement, i.e. evaluating what kind of activity is meaningful to the individual person. For example, one of the residents that 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 or to sit on a motorcycle that is brought in by one of the staff. Another resident is a former professor who can quote Shakespeare and loves the Rocky Horror Picture Show. His program is based on encouraging these interests and finding ways for him to continue to engage in those activities.
The program’s success is credited to the collaborative team of clinicians and therapists, including Speech and Language therapists, to design individual plans. One resident might be working on executive function, while another may be experiencing aphasia and is working on best communication strategies. Each resident works weekly with the Speech Therapist 1:1 to evaluate functioning and practice skills. One resident at Golden Pond worked with the therapist on communication strategies. The resident wrote a poignant piece about who he was and what he needed from others in order to communicate more effectively with them (see below). His writing is an example of how the program helps these residents engage in a different kind of discussion about their impairments.
My name is Gerald and I have a brain injury. I was riding my motorcycle and I crashed. It was terrible. Before my accident I was running a company. I worked and had lots of friends. I have done more in my life than most people.
After the accident, I thought I was okay. I thought I could do everything I used to do, except for my memory. I put on my clothes and I double check what I do. I don’t always get everything right. I do everything I can possibly do to get myself better. Twenty times at a time, I get frustrated. If I can help myself, why not?
Today, I like to help people in Golden Pond. I love talking about cars and motorcycles. Sometimes, I have trouble thinking of a word. I just need extra time to come up with it. If you do not clearly understand a story I am telling you, please ask questions to clarify. I hope my story can help others.
Like for typical dementia residents, passive experience is yet another way for these atypical residents to engage with the program. Simply sitting in the kitchen while staff is preparing food, experiencing aromas and finding successful connection with others by sharing a meal is extremely important for combating the anxiety and isolation these residents have often experienced in the larger community.
The BCAT (Brief Cognitive Assessment Tool) Approach
The BCAT Test System is comprised of five unique assessment tools that are used to assess current cognitive and mood functioning. The primary test, the Brief Cognitive Assessment Tool (BCAT), can be administered in 10-15 minutes or less. The BCAT was designed to assess orientation, verbal recall, visual recognition, visual recall, attention, abstraction, language, executive functions, and visuospatial reasoning. The test is sensitive to the full spectrum of cognitive functioning (i.e. can determine normal, MCI, or dementia) and provides separate Memory Factor and Executive Functions Factor scores. The BCAT has been proven to help predict the need for basic and instrumental activities of daily living, determine service needs, aid in fall prevention, and lower risk of hospitalization and utilization of pharmacological interventions.
Additional tests 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 assesses and provides separate scores on anxiety and depression. BADS is ideal for providers that want to track mood status over time. KPT includes an illustration of a kitchen scene in which three potentially dangerous situations are shown. Residents are asked to describe the scene, identify the three problem situations, rank the order of importance of each situation, and offer solutions that would resolve the three problems.
Lastly, the Brief Cognitive Impairment Scale (BCIS), is used to assess cognitive functioning. The BCIS is an 11-item, 14-point scale. It was developed not only to track cognitive changes, but also to provide information to better manage behavior problems. These other screening instruments take less than 3 minutes each to complete. All BCAT Test System tools are designed for rapid administration and should be repeated to track progress over time.
Using these tools, the staff can quickly and easily track the functional ability as well as changes in mood or emotional status. Most importantly for the population they are serving, the BCAT approach provides information that helps the team manage behavior problems – the primary issue that is expressed by families of these atypical residents.
Golden Pond is a Gold Level BCAT Certified community and it is the only assisted living facility in New England to carry this distinguished certification. Their unique cognitive behavioral programming is based on the necessity for meaningful engagement, effective communication skills, and proven best practices for behavioral management. Success in the program is defined minute to minute, allowing the residents and their caregiver’s infinite opportunity to adjust and adapt.
The Clinical Team
Jacobs’ team includes two full-time nurses, two full-time activities staff, and a 1:6 direct care staff to resident ratio. Her clinical team also includes a Neuropsychologist who does 1:1 therapy with the residents, a rehab team that includes Physical Therapy, Occupational Therapy, and Speech/Language Therapy, and a Psychiatrist and Nurse Practitioner who work hand in hand with the staff. The teams meet once a week to share results of the BCAT screenings and to brainstorm around individual care plans for their residents. In these meetings, they are looking not only at cognitive health, but also at physical, behavioral, psychosocial, medication, and other health issues that might impact the residents’ behavior and success in their program. The team reviews whether med changes are working, if there are behaviors to address, and how the family is doing with the adjustment to the program.
In addition to using the BCAT Approach, Jacobs admits that running a program like this requires being committed, intentional and proactive in de-escalating behaviors or issues before they become large issues. Moreover, the interdisciplinary clinical team is able to make rapid med changes and implement effective behavior plans on site, reducing the need for in-patient psychiatric placements. In her program, the aides are trained to become the “change agents” – changing their approach and the environment rather than expecting the resident to change his/her behavior.
Lessons for Care Management
What can the success of this program teach us as Aging Life Care Professionals? First, that it is possible to do this kind of unique programming for this underserved population in the private pay environment. Often Aging Life Care Managers hear from providers that there just isn’t enough volume of potential residents that are able to pay privately for this kind of program. However, by combining those with atypical dementias with people with other neurological diseases, it is possible and can be both successful and profitable. In Golden Pond’s case, the demand has only increased. The original program included 21 beds and is now being expanded to add on four more.
Second, in order to be successful at running a program like this, a provider has to be organized, creative, educated, and well-staffed with psychiatric support. As Aging Life Care Managers know well, it is one thing to say you will accept these residents; it is another to truly care for them.
Third, Aging Life Care Managers should investigate how the BCAT Approach could be used in their daily work, with clients in their homes or in communities. Even if a community was not utilizing the approach, Aging Life Care Managers could utilize these instruments to help work with the staff at a facility to inform their approach to dealing with difficult behavior.