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Dementia Care: A View from the Other Side

Dementia robs our loved ones of precious memories and their ability to communicate. My 82-year-old stepfather has Alzheimer’s disease and has had a steady decline. My 80-year-old mother, who is also a nurse, has been his primary caregiver in their home. When they had to go through a major transition, I learned some valuable lessons on the resident and family side of long-term and post-acute care (LTPAC) that I think directors of nursing services (DNSs) can take back to their skilled nursing facilities (SNFs) to help improve their approach to dementia care.

A major life change

In August of 2021, my stepfather and mother contracted COVID-19. Due to the severity of the illness, my stepfather required hospitalization, and as one would expect, the change in environment along with his illness caused him to experience delirium in addition to his already diminished cognition. Due to his decline and my mother’s own health, it was decided that she could no longer care for him at home, so we began the hunt for long-term care placement.

Restraint use in the hospital: An added challenge

Due to his repeated attempts to take out his IV early in his hospital stay, physical restraints were applied by the staff. Although I understood the need to protect the IV, it was still hard to witness, knowing the negative side effects that physical restraints can cause. As his condition improved and the delirium became less severe, I expected the physical restraints to be removed. Disappointingly, I had to advocate for their removal, which the hospital begrudgingly did, and put a sitter in place instead.

Staffing places strain on SNF admissions

After 10 days in transmission-based precautions, my stepfather was ready for discharge. Having been in the long-term care industry for more years than I would like to admit, I thought the transition to a (SNF would be smooth. However, due to staffing shortages, most facilities in the area had either stopped admissions or decreased bed size. This, along with the use of physical restraints and the sitter at the hospital, hampered his placement greatly. Eventually, after 21 days in the hospital, he was transferred to a secured dementia unit in a local SNF.

When the going gets tough, some facilities give up

I have always been one of long-term care’s (LTC) biggest cheerleaders and was confident that once my stepfather was in a SNF, things would go smoother. For the first couple of weeks, it did go well. He seemed to adjust to the new environment without issue, and my mother could rest knowing he was receiving good care. Then something changed, and he became aggressive with staff and even had a few resident-to-resident altercations. His medications were changed multiple times, including multiple psychotropic medication changes to improve his behavior. Then, my mother received a call from the DNS stating they could no longer handle his behavior, and he would need to be placed elsewhere. When my mother called me crying, I immediately called the DNS to request a meeting.

Staff incompetent in redirection are unprepared to handle behaviors related to dementia

When I arrived at the facility, the DNS came out of his office and told me to come with him because my stepfather was currently in the middle of an “incident.” We went to the unit, and my stepfather was leaning nonchalantly against the door with a pudding cup in his hand. He was surrounded by at least five staff members, all of which were unsure of what to do next. I walked up to him and asked what he was up to. He did not recognize me and told me he was going to church; he is a retired minister. I said to him, “That sounds nice, but you’re eating pudding right now.” He responded, “Yes, and it is very good!” I said, “Let’s go to the dining room and sit at a table so you can enjoy it.” He followed me to the dining room without issue. Once he was settled, I returned to the office for my meeting with the DNS.

An improper root cause analysis misses key solutions

We discussed the behaviors and the incidents that occurred. I asked if a root cause analysis (RCA) had been completed to see if there were any trends or if they could identify what changed. The answer was that the incidents were investigated; it was his Alzheimer’s disease, and my stepfather doesn’t like to be told no. Upon further questioning, it was apparent that a true RCA had not been completed. I offered to assist with an RCA, but the offer was turned down.

After witnessing the incident that occurred while I was there, it was evident that the staff did not understand how to redirect a resident with dementia, and this was discussed as well. The DNS agreed with this but did not have plans to remedy the situation. What the facility did not realize is that their lack of communication with my family regarding his preferences and habits meant they had no arsenal of interventions to use to redirect him when he became anxious, and then he acted out. It was apparent that although this SNF said they offered memory and dementia care in a secured unit, this was not the case, and we were going to have to find a new place for my stepfather. 

Inappropriate interventions can make things worse

The following day, my stepfather became aggressive again, and facility staff utilized Florida’s Baker Act to discharge him to a psychiatric hospital. For those not familiar with this act, it allows for a person to be involuntarily hospitalized if they exhibit extreme behavior that may result in harm to themselves or others. He was placed in the back of a sheriff’s car and taken to the local psychiatric hospital, where he spent the next 10 days before being released back to the facility.

Although I understood the aggression must be dealt with to keep everyone safe, placing an 82-year-old man with Alzheimer’s disease and a recent hospitalization that caused considerable deconditioning and delirium in a police car was a very poor choice of interventions. The facility’s lack of understanding for how to care for residents experiencing dementia and their lack of communication with my family resulted in this choice, which could have been avoided.

A much-needed care conference

Within 24 hours of my stepfather’s return to the SNF, I was notified his medications were again changed. I called to speak to the DNS and learned that the DNS position had turned over because an interim DNS took my call. She was very engaging and agreed with me that we needed a care conference sooner than later so we could all be on the same page and provide him with the best possible care. The care conference occurred a few days later and changed things for the better because the DNS understood three important things:

  • My stepfather’s care should be individualized and person-centered, and family members can be key in gathering the information needed for this care if a resident experiencing dementia cannot express their habits, preferences, professional history, and other important details.
  • Staff must have specialized competence and talents to care for people with dementia.
  • The addition of psychotropic medications and frequent changes in the medications compounded the negative effects he was experiencing from deconditioning, delirium, a change in the environment and routine, altered sleep patterns, and Alzheimer’s disease.


We don’t always look at things from the other side—no judging here, I am guilty of this too! However, reflecting on the experiences of residents and families can sometimes help to look at things differently. I hope my story helps DNSs take another look at their approach to residents who are experiencing dementia and ensure they have everything needed in place to provide these residents with the best quality of life and care. They deserve our understanding, a personalized approach, and care by staff with appropriate training, just like any other resident does.

AAPACN members can read the companion article to this story, where I cover more in-depth strategies the DNS can apply to decrease the struggles that staff, residents, and families face when a resident experiences dementia, “Strategies for Overcoming the Struggles of Dementia Care.”

Additional AAPACN resources for implementing proper dementia care: