Families and Community Care Staff: Working Together to Achieve Person-Centered FTD Care

Husband and wife talking to community care worker

Partners in FTD Care, Summer 2022
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By Sandra Grow, RN
During a loved one’s transition to a residential facility or care community, most family caregivers will want and expect that the care they receive is as individualized and person-centered as the care they provided for years at home. In FTD this can be particularly challenging. To achieve this goal, family caregivers will need to be strong advocates for their loved ones, teaching healthcare professionals ways to manage FTD’s unique symptoms and explaining that their behaviors are not willful, but byproducts of their dementia (which, given the younger age of onset in FTD, can be difficult for providers to understand). The following is a personal account of how one FTD family caregiver learned to successfully partner with facility staff to talk about challenges, try creative solutions, and achieve person-centered care.

At the age of 54, Karl, my physically fit, active husband of 35 years was diagnosed with behavioral variant FTD. His symptoms included poor judgment, impulsivity, and an inability to recognize that anything was wrong with his actions. For these reasons – combined with newfound time on his hands due to the loss of his job – Karl presented safety concerns while he was home alone and I had to work. An adult day program provided supervision and activity for Karl for a few years. When his care needs progressed, I was faced with the difficult task of seeking a facility for 24-hour care. Some of the staff at the facility I chose had never heard of FTD, and although Karl was in a secure unit with other residents living with dementia, staff were not accustomed to some of his behaviors. I worked to learn the names and roles of the staff members, collaborated with them on his care plan, and put up photos and information about Karl so they could know the person he was.

Caring for the person he had become was the next step in the journey, one that required me to partner with the facility to respond to the day-to-day challenges. First, I learned that the plan of care was often several pages long, and that the direct care staff primarily relied on the Kardex tool, or assignment sheets, for guidance on his care.

Karl had a very strong grasping reflex. Once he grabbed an object, he was often unable to release it. This caused problems. For example, while Karl was willing to shower, he would often grab the showerhead’s hose and refuse to let go, spraying staff members in the ensuing struggle. I knew I needed to educate the staff that his grasping reflex was not done out of aggression but was rather a symptom of his FTD. I also brought in rubber toys to put in his hands before he got in the shower, making sure that this intervention was noted on his care Kardex for bathing and dressing.

This became my two-stage approach to any of Karl’s behavioral issues – first, educating staff to help them understand his behaviors, and second, collaboratively brainstorming until we agreed on a successful, easily repeatable care strategy. While this may sound simple, it often took a good deal of trial and error to find the right person-centered solutions, to think of the best way to communicate them, and to ensure that they are used consistently. When I became frustrated, I worked on recognizing and acknowledging my feelings of grief and loss as the disease progressed. Patience was also important in helping with teamwork and collaboration.

As Karl’s disease progressed, we continued learning how to adjust his changing care needs from all the facility disciplines. Dietary helped with eating issues and provided adaptive options. Speech therapy had tools to help with communication as Karl lost the ability to speak. Physical therapy helped keep Karl safe as mobility issues arose. Options for palliative care and, eventually, hospice in the facility setting came from the social worker.

My training and work as a nurse did not prepare me for this diagnosis. A physician referred me to the AFTD website to get information specific to this disease. I continued to use AFTD resources to help educate the staff about Karl’s disease and to gain ideas about dealing with different behaviors.

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