Person-Centered Care in the Context of Dementia and Delirium
Five qualitative themes that demonstrate PCC in the context of a larger research study are discussed, followed by barriers to implementing PCC in an acute care setting for individuals with dementia and delirium. Qualitative analysis revealed five themes related to PCC including: (a) Knowing the Patient's Baseline; (b) Knowing the Patient's Interests and Values; (c) Enhancing Sensory Abilities to Communicate; (d) Individualizing Cognitive Stimulation; and (e) Enhancing Behavioral Approaches to Comfort and Sleep. In addition to themes of PCC, barriers to providing PCC in this population and setting were also identified and included: (a) Failure to Recognize the Patient First and (b) Not Enough Time.
Knowing the Patient's Baseline. The ability to provide individualized care is a key aspect of PCC and allows for a foundational understanding of the individual and his/her family so that goals for care can be established (AGS Expert Panel on Person-Centered Care, 2016). To provide this type of care, formal health care providers need to be aware of an individual's baseline cognitive and physical function, as well as his/her preferences for care (Curyto, Van Haitsma, & Towsley, 2016; Van Haitsma et al., 2013). This baseline knowledge is particularly important to individuals with dementia who may develop delirium. The ability to assess for delirium rests on understanding prior cognitive and physical function.
Because establishing baseline in an acute care setting is often difficult, the current study emphasized the need to talk with family members and/or facility staff to determine the patient's normal function and cognition. The importance of taking the time to determine a patient's baseline is illustrated by the following report during a round:
“The nurse called the skilled nursing facility the patient has been living in and spoke to the nurse there. She obtained the patient's baseline functional status and was able to determine a change from her baseline.”
On another round, it was reported that a noted change in mental status contributed to a change in medication:
“MD stopped Seroquel® today after notice of changes in mental status by nursing staff.”
Knowing the Patient's Interests and Values. Knowing what is important to patients, what they value, their interests, and their hobbies was considered to be a crucial aspect of PCC. This knowledge helps patients maintain their sense of self and also provides a means of establishing a connection and bond of trust between nursing staff and patients and allows for individualized care. Research study staff provided the following quote while completing rounds with nursing staff:
“88-year-old, did MMSE [Mini-Mental State Examination] (Folstein, Folstein, & McHugh, 1975) [had RN score]. Asked him what he did formerly [claims adjustor] and [he stated that he] enjoyed classical music. MMSE score 8/30…. The unit supervisor to follow up with RN with cognitive activity/sensory board, cards, sleep kit, and music.”
On another round, the nurse reported that she was taking the time to find out what interested the patient and was going to record it on a whiteboard in the patient's room for other staff:
“Nurse stated she is getting a whiteboard and will write down patient's interests—music, writing letters. Discussed what she liked—grandchildren, country music.”
Enhancing Sensory Abilities to Communicate. For many patients with dementia, communicating is often difficult, especially in a hospital setting. Patients' hearing aids and glasses are often not brought with them to the hospital and the environment is starkly different than what they are used to. The current study promoted the use of an amplified hearing device in conversations between nursing staff and patients and implemented the All About Me Board (Fick, DiMeglio, McDowell, & Mathis-Halpin, 2013). These tools improved the ability of patients to communicate and allowed them more understanding and input into their medical care. A nurse reported the following during one of the nursing rounds:
“We went into the patient's room and gave her an amplified hearing device. It made the patient very happy and the CNA [certified nursing assistant] noted how much better they could communicate. The RN will do the MMSE later in the shift using the hearing device.”
Individualizing Cognitive Stimulation. Nursing rounds focused on tailoring activities and cognitive stimulation for each patient by determining what interests and activities the patient engaged in before being admitted to the hospital. From one of the rounding forms:
“Rounded on 87-year-old male with Parkinson's disease who stated, 'I love word searches and country music.' Discussed with his daughter, whom he lives with, keeping his mind and body active while in hospital.”
To encourage individualized cognitive stimulation, “activity kits” were stocked with a wide range of activities on each treatment unit of the hospital. Nurses were encouraged to use the kits to engage patients in the particular type of activity they enjoyed. For example:
“Found out patient liked puzzles.”
By tailoring the activities to patients' specific interests, patients were more likely to remain engaged and show cognitive improvement:
“Family noted as saying to nurse last week that leisure activities and cards created moments of normalcy.”
This theme has some overlap with the previous theme identified in the data of Knowing the Patient's Interests and Values, but it was specific to the type of intervention model used in the parent research study.
Enhancing Behavioral Approaches to Comfort and Sleep. The current study addressed issues of unmet needs during rounds and encouraged nursing staff to view agitation as a presenting symptom for an often-unrecognized, underlying condition or unmet need, such as infection, pain, or hunger. Behavioral interventions to respond to agitation in patients were promoted versus using medications to calm them. Thus, reducing the number of psychoactive medications a patient was receiving and increasing behavioral approaches in response to acts of agitation were critical aspects of PCC in the hospital setting. This response is exemplified by the following quote during one of the nursing rounds:
“Nurse will try non-pharm sleep protocol.”
Nurse facilitators advocated review of the medications lists of each patient enrolled in the study and made as-needed suggestions for changes to the unit champions and nursing staff. They educated the nurses about potentially inappropriate medications, using tools such as the AGS Beer's criteria (AGS 2015 Beers Criteria Update Expert Panel, 2015), and encouraged limiting medications that may have harmful effects in patients with dementia. Non-drug approaches also extended to sleep enhancement:
“We have one patient who has been very agitated at night. We have tried everything we can think of and haven't wanted to use medications. Last night we gave her a baby doll [used based on an assessment of preferences] to hold and she immediately became a new person! She was very calm and then slept the whole night!”
An intervention component for the current research study was conceptualized as an individual approach to avoiding medications. Although not typically an essential element of PCC, in the acute care setting, agitation, restlessness, and other behavioral symptoms of dementia are often managed pharmacologically. However, these behavioral symptoms are often the result of unmet needs, such as thirst, hunger, or pain (Algase et al., 1996; Kolanowski, Van Haitsma, Resnick, & Boltz, 2014; Whall & Kolanowski, 2004). The intervention encouraged assessing for and meeting unmet needs with non-drug approaches prior to administering drugs.
Barriers to Person-Centered Care
In the process of identifying instances where PCC was implemented by hospital and nursing staff, the data also revealed several examples where PCC could have been improved. Two primary categories were found: (a) Failure to Recognize the Patient First and (b) Not Enough Time.
Failure to Recognize the Patient First. The data revealed instances where PCC would have been promoted if the patient had been fully included in the discussion. By not including the patient, nurses overlooked his/her opinions and ability to make decisions. An example of this situation is when a patient's family members were consulted to ascertain the patient's preferences and interests as they related to cognitive stimulation and activities. Nursing staff approached the family to determine what the patient liked, when preferences could have been asked of the patient first; however, it is not known from the rounding forms whether nursing staff tried to ask the patient but, due to impaired cognitive or altered communication, he/she was unable to answer.
Not Enough Time. A majority of the observed areas where PCC could have been improved related to time as a deterrent, as demonstrated by the following quote during rounds:
“Unit champion present but busy, expressing concern, does not have time (sometimes) to help peers, patients with dementia take time to implement non-drug alternatives.”
Occasionally, the resources for individualizing cognitive stimulation were also not used due to time constraints, as illustrated below:
“Nurse said she had never used the cognitive stimulation kit due to time demand.”
Nurses also reported not having time to perform formal cognitive testing, such as the MMSE (Folstein et al., 1975), or baseline cognitive evaluation on the patient. A baseline and routine evaluation of cognition is critical in helping prevent and treat delirium in patients with dementia, which is also critical to knowing the individual in PCC:
“Nurse states that she doesn't have the time to establish a baseline understanding of her patients.”
In addition, there was also repeated documentation of nurses and unit champions being too busy or lacking the time to fully participate in the rounds or use the study screens, as noted:
“Saw patient [non-study] but nurse was very busy. Patient was delirious with history of dementia according to MD. Nurse said she would try to activate computer screens but ‘too busy now.’”