Annually, providers struggle with knowing how to best communicate with upmost sensitivity and compassion with patients who have dementia, especially those who suffer from dementia in acute settings.
In order to better understand how to communicate with patients with dementia, we must first consider the unique limitations presented by patients with dementia.
To define dementia, it is important to note that dementia is not a specific disease. Rather it is a broad term that defines a wide range of symptoms, related to a general decline in mental ability. (“What is Dementia” via www.alz.org)
Alzheimer’s is, of course, closely related to dementia though they are not specifically the same condition. Throughout this essay, we will be referring to dementia as a general umbrella term to mean patients who do experience the associated steep mental decline, predominately in the acute stages where mindful and compassionate care is of upmost importance, as with any other serious chronic illness in the latter stages of its progression. (Rehling 2008 via EBSCO)
“Dementia is a chronic disease that requires medical and social services to provide high-quality care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poorer than that for other diseases that affect older persons.” (Reuben et al, 2013 via EBSCO)
Acute setting dementia, of course, is what we are mainly concerned with here. Patients who experience acute setting dementia experience a drastic decline in mobility, mental function, and so on. While researcher Irene van Hunen Bos conflates acute setting dementia and Alzheimer’s disease, she notes that the two conditions are virtually identical in many ways: “In the late phase [of acute setting dementia and Alzheimer’s disease] the person is completely dependent for all aspects of their care and will eventually become unable to control previously voluntary functions. AD is terminal and can have a span of three to twenty years, with the average being eight years.” (2011 via EBSCO)
Care is to be taken in order to know how to effectively ensure that patients are able to receive care for other comorbid conditions and can express their needs with as much dignity as possible. But considering the extent of the patient’s cognitive and/or mental impairment, it has never been simple for providers to accurately communicate. A high level of competence is required in other to better assess potential communication related hurdles and better understand what patients need. (de Vries, 2013, via EBSCOhost)
The stress of attempting to communicate and interact with patients with dementia is not an issue that specifically affects medical providers, whether physicians or nurses. Caregivers, especially relatives and others who remain a close relationship with the patient, experience significant frustrations with attempting to communicate with dementia patients, resulting in, as further studies have revealed, strained relationships and even heightened instances of elder abuse. (Small et al, 2003, via EBSCOhost)
It is distressing for both caregivers in a hospital settings and for loved ones to effectively communicate with a patient who, often times, cannot comprehend the state of their condition or their own mental state. Stress runs rampant amongst personal caregivers (Siemens and Hazelton via Canadian Family Physician and EBSCOhost) and the medical personnel who care for patients with dementia on a daily basis. (Doyle, 2014, via OnDemand services)
Clearly, finding ways to more effectively communicate with patients with dementia in acute settings will have innumerable benefits for both caregivers and the patients with dementia who struggle with making their needs known.
The crux of the issue is, of course, to determine how to communicate with patients with dementia and I hope to provide a more in-depth look at the mechanics that drive the condition and what patients with dementia have positively responded to in the past according to previous studies.
A review of literature was undertaken through various databases and sources, not limited to the EBSCO host database and the Royal College of Nursing. I examined previous issues of journals such as the American Journal of Nursing and Journal of Speech Language and Hearing research, among many others oriented in the health care field. Journals that focused on geriatric care were, of course, specially considered in order to examine current literature.
I conducted database searches with the keyword (s) “dementia communication”. Searching through EBSCO alone returned over five hundred related articles, emphasizing that the need to better understand how to communicate with dementia patients is a dire one. Most of these articles, happily, were relevant to the issues at hand and there was no need for me to revise my search terms in order to find more relevant articles. Searching exclusively for “dementia” still allowed me to settle upon relevant articles, although not all of these related to the specific issue of communicating with dementia patients in a hospital setting and some co-inflated Alzheimer’s with dementia, which, while related, was not specific to the issues I hope to address in this article.
The vast quantity of articles, however, allowed me the opportunity to specifically analyse specific patterns in current literature and consider past implemented models of communication with patients with dementia. And when we consider treating patients with dementia, there are numerous methods, though most emphasise, as we will consider later with a more in-depth analysis, compassion based models of care at their core.
Communicating with Dementia Patients: Things to Consider
There are numerous things providers must consider, chiefly among them how well the patient is capable of expressing their needs depending on the development of their condition.
“It becomes more difficult for a person with dementia to understand what is being said to them or to respond so that others can understand them, therefore the language used, tone and volume of words spoken and also non-verbal communication become increasingly important.” (Williams and Hermann 2011, as cited in de Vries, 2013, via EBSCOhost)
Proper communication is, of course, key. While some dementia patients still retain an ability to communicate verbally, others don’t. (Bush 2003, via Nursing Times) And being able to communicate with these patients through observation and non-verbal cues is the mission that nurses and other medical practitioners must undertake, or so to speak. (Miller 2008 via American Journal of Nursing), though it can present unique challenges in a hospital setting when time is of the essence and practitioners do not always have the luxury of extensive time to spend with their patients.
Due to the unique memory challenges presented by the condition, asking patients about their day or their needs can often be difficult. Researchers seem to suggest that it may be more helpful for practitioners to focus less on the patient’s ability to recall information versus other criteria: “Communication is more successful when questions emphasise interpretation of a word, sentence or other language form, rather than episodic memory of the person with dementia; that is, people can successfully respond to open-ended questions when the response does not require them to recall past information.” (Smalls and Perry 2005 via de Vries)
Yemm and Eisner suggest a model of communication that relies upon focusing on the patient’s strengths- their cultural background, their personality, and the communication channels they are cognitive enough to utilize, versus focusing on the patient’s deficiencies in this regard in order to obtain more positive communication results and understand the patient’s needs in a more effective manner. (Yemm and Eisner 2016, via Dementia)
And this, primarily, seems to be the focus of many practitioners in hospital settings when one must consider the development of models of communication, which we will discuss in further depth in a moment.
The temptation is considerable to infantilize patients, especially those who are incapable of washing or feeding themselves, as those who are in particularly advanced stages of dementia must horrifically deal with. But research has found that patients, even with acute and non-verbal dementia, react poorly to being infantilized by medical practitioners, often by screaming or crying. (Wilson et al. 2010)
And so we will consider the models of communication put forth by various researchers and practitioners and how these models strive to bridge the communication gap between researchers and dementia patients.
Knowing how to best communicate with patients with dementia is key in order to minimize potential stress exuberated by the lack of communication. “Confusion is extremely stressful for the confused individual and complicates all personal interactions, including provision of necessary care. Because we do not have an effective cure that will eliminate the confusion caused by…most other bran dysfunction, comforting the confused is a major goal of care.” (Hoffman, 2001 via EPBSCO)
Many researchers emphasize the importance of forming personal connections with the patient with dementia, which is especially key when the patient is suffering from the acute stages of the condition, regardless of the nature of alternate care that the patient must receive due to comorbid conditions. (Hackman et al 2013, via Google Scholar)
For patients who are still capable of verbal communication, this does not necessarily mean that it is easy to communicate with them. Often, as the condition progresses, patients will often have difficulties finding words to describe their true intent. It is the goal of practitioners, whether in hospital settings or elsewhere, to be able to communicate with patients on an intimate level and attempt to decipher what a patient intends with certain statements, which may or should not always be taken literally when the patient’s inability to find the right words to describe a situation or feeling arise. (Kerr 2007, via EBSCO)
Kerr continues to emphasise the importance of proper communication, stressing that practitioners should take care to avoid communicating with patients in high stress situations and to do whatever is possible to provide a calm environment where the patient’s inability to communicate will not be aggravated by external or internal stressors. (p 63)
When a patient struggles with communication issues related to the onset of their issues, it becomes more and more difficult to determine the patient’s needs or to determine whether the patient is experiencing undue pain or discomfort. The pressure to understand how to communicate properly with a patient increases especially when the patient is non-verbal and in particularly acute stages when the patient may be unable to express themselves beyond a child-like level. (Kovach et al 2005, via EBSCO)
Being able to assess the level of pain patients are in is key. An article published in the American Journal of Nursing suggests using what is known as the PAINAD scale, which allows nurses and doctors to assess five areas for indicators of pain in patients who are non-verbal and have severe dementia. Among the five areas considered: “breathing: labored breathing or hyperventilating; vocalization: moaning or crying; facial expression: frowning or grimacing; body language: clenching fists or pushing away caregivers; consolability: an inability to be scored.” The practitioner is to then rate each area on a 0 to 2 scale and to add up each area, which should then result in a 0 to 10 pain rating scale. (Horgas 2008, American Journal of Nursing)
While this relies purely on observation, it does allow for the nurse or practitioner to observe the patient and utilize non-verbal communication in order to decide how severe the patient’s pain is.
The reliance of non-verbal communication rated on a scale is also suggested by another publication, with what is known as the Edinburgh Feeding Evaluation in Dementia Scale. Referred to as EdFED, the scale once again asks practitioners in both hospital settings and nursing homes to observe certain behaviours on part of the patient. With the EdFED, practitioners are to consider and rate on a scale from a list of 11 specific behaviours in order to determine whether a patient is struggling to consume food and how they are behaving at meal time, with special consideration given for patients who must be spoon fed versus those who still have the capacity to self-feed. (Watson 2001, Clin Eff Nurse)
You’ll note that with the EdFED and the PAINAD scale, along with particularly relevant acronyms as the medical field is infamous for, both models successfully allow practitioners to address the concerns of acute setting patients without relying on verbal communication or consent that may or may not be able to successfully be retrieved, as is the case with many acute patients.
Staff at hospitals may even find success utilizing alternative methods of communication, such as music or tactical objects, to aid understanding and mitigate the potential for miscommunication between the patient and staff. (Kerr p. 64)
But it is the quality of care and the ability of practitioners to successfully communicate with patients in some regard in order to provide high quality standards of care that truly impacts the outlook of patients, as we begin to see from further reviews of literature.
Quality of Care
We see from existing literature that the quality of care a dementia patient receives often depends on how well staff is able to communicate with the patient and coordinate their care throughout the hospital. The ability of hospital staff to successfully communicate with dementia patients and understand their needs has a direct relationship to the patient’s resulting experiences with discharge and post-discharge health. (Stoneley 2012 via EBSCO)
When staff are not able to communicate effectively with patients who have dementia or are unable to create an environment where these patients may thrive and prosper, the results can be dire. Impersonal relationships with patients in hospital settings, especially with patients with dementia or who do not have the mental capacity to comprehend their situation beyond what is happening in the immediate moment, can have detrimental effects on the patient’s personal experience with their care and even with their ability to receive proper care in the first place. (Say 2003 via EBSCO)
Author Diana Kerr emphasises that the environment a patient is in can have effects on their hospital experience and their ability to successfully communicate with hospital staff. She emphasizes that an environment for patients with dementia should take several aspects into consideration. “The environment must be: calm and stress free; predictable and make sense; familiar; suitable stimulating; safe.” (p. 136)
Researcher Irene van Hunen Bos continues to emphasise that treating patients with dementia requires possessing a compassionate attitude and modeling behavior that acknowledges the patient as an individual, while avoiding infantilizing and high-stress scenarios. “It is helpful for nurses to use the patient’s name frequently and to face them directly; nurses should provide one-step instructions and be aware of their tone and body language. Dementia patients may not be able to fully process the verbal information but they can interpret tone. A friendly approach is vital, and infantile language or speaking about the person as if they are not in the room is inappropriate.” (2011)
The right interventions and models can have tremendous impact on the recovery of a patient. “Individualized interventions [or those that operate within a patient-first model that acknowledges the patient’s needs] that use problem solving and behaviour management offer the best evidence of effectiveness. However, few such interventions exist to assist integrated care delivery and these lack good evidence on their effectiveness.” (Leavey et. al 2016 via EBSCO)
Patients who receive poor care that does not address their needs are often more likely to develop mental illnesses such as depression, which can then worsen their cognitive symptoms related to dementia. (Hoffman p. 87) Truly, it can be a vicious cycle when caretakers do not provide proper communication or supportive, affirming environments for their patients. But it is a cycle that can be reversed, at least at an institution level. And much of this will have to do with the staff at any given hospital when it comes to receiving the proper training for caring for patients with dementia and understanding how to enact compassionate, patient-first models of care and communication at all levels of patient interaction and the hospital infrastructure.
Staff Attitudes and Understanding
Talk of establishing patient-centric communication models matters few when little is being done to train and educate hospital staff and medical students on how to best treat and communicate with patients who have dementia.
Enacting policies that ensure better quality of holistic care for patients who have dementia begins at a systematic level. By introducing models for ideal communication to all hospital staff who have direct interaction with patients, the odds of being able to put forward a more dementia inclusive environment in hospitals becomes easier and more obtainable.
And it may very well be an uphill climb, or so to speak. A survey of hospital staff revealed that two thirds of respondents believed their training for managing how to care for and treat patients with dementia was inadequate or unsubstantial. (Limb 2011 via EBSCO)
Further evidence suggests that healthcare staff are often apprehensive about attempting to communicate with patients with dementia and are often scared or unwilling to work with patients who have dementia, especially when the lack of substantial training received on their part is considered. (Houghton et. al 2016 via EBSCO) The results can be horrific. Frustrations and stress abound and rates of poor treatment and even patient abuse can rise when providers are unable to properly communicate with patients. (Cunningham and Archibald 2006 via EBSCO)
Substantial training models that teach nurse aids strategies for how to care for and communicate with patients who have dementia have been shown to harbor high chances for success and offers a strong potential to improve the quality of life of people with dementia under their care. (Beer, Hutchinson and Skala-Cordes 2012 via Taylor and Francis Online)
Time and time again, literature suggests that enacting comprehensive training and dementia-inclusive policies in the hospital setting do much to improve patients’ quality of life and care regardless of whether their stay in the hospital is short or long term. (Ryan et al. 2011 via EBSCO)
Proper staff education and ensuring staff members at hospitals have the proper tools to communicate with patients with dementia appears to be influential in reducing instances of patient and even staff aggression directed at staff members and other patients, especially those who have substantial daily interactions with the patients, such as aides and nurses. (Bostrom et. al 2012 via EBSCO)
Creating a more inclusive environment does not simply rest upon staff education. Comprehensive policies and reaffirming care principles have much to do with enacting a hospital model that is more affirming and better able to serve the vulnerable population of patients with acute dementia around the globe. (Takechi, Mori, Hashimoto, and Nakamura 2014 via Karger)
While staff may be aware of the existence of dementia, not all staff members, especially younger staff with little personal experience with the condition, are familiar with how to holistically care for patients or truly understand the value of enacting substantial changes on part of how wards are organised and patients are addressed. As the elderly population begins to climb, so do rates of dementia development. And it is ever key to ensure that staff are aware of how to properly address and communicate with patients who have acute dementia, whether it is by requiring mandatory training classes or that staff members watch educational films in order to familiarize themselves with the condition and the specific implications that surround the development and long-term care of dementia and its advances. (Duffin 2013, via EBSCO)
Ideally, the goal is to impact long-term cultural changes on part of hospital staff, to communicate with patients in holistic, substantial ways that leave lasting impacts on part of the patient’s welfare. (Karasik 2012 via EBSCO)
It is clear from a review of literature and an analysis of previous studies that much is to be done when it concerns care and communication with patients who have acute setting dementia. (Banks et al. 2013 via EBSCO)
A multi-faceted condition, dementia concerns the mental and cognitive decline that patients may experience either due to aging or comorbid with various conditions. It is a challenging condition for caretakers, whether related to the patient or encountered through a medical setting, to help care for, especially when it concerns communicating with patients in a way that ensures that the patient’s needs are met and addressed.
In the case of non-verbal patients or patients whose cognitive abilities have deteriorated to the point where they are unable to communicate their needs openly or easily, we have seen that the use of metric scaling systems such as EdFED and PAINAID can be helpful, though both may rely on outside observations in order to potentially determine how a patient is responding to food and whether they need assistance consuming meals or the severity of pain a patient is experiencing respectively.
Staff at many hospitals may express a reluctance to both interact with dementia patients and a lack of knowledge concerning how to properly care for dementia patients. Research is particularly promising in demonstrating that training models and in-depth classes may be helpful in ensuring staff are adequately trained in communication methods concerning patients with dementia.
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