Dementia has unique challenges for patients, their families and care providers. This paper discusses these challenges and suggests the approaches in meeting those challenges. The affect admission of a person with dementia have on the patient and family will be discussed. Hospital environment, healthcare staff’s attitudes have a profound effect on the care quality given to a person with dementia that will be elaborated. The difference between the traditional model of healthcare known as disease model and the evolving patient-centric model will be discussed. How giving importance to the overall uniqueness of a person’s condition and diversity of relations and social life have a profound impact on care is addressed.
Dementia presents behavioural and psychological signs and symptoms, which will be listed. It will be emphasized to recognise these signs and symptoms as an essential activity to address some needs on the part of the patient. It will be necessitated that it is important to effectively communicate with patient and family and forming therapeutic relationships. There are other comorbidities which are present and other conditions which arise on the admission of a person with dementia and during treatment course in a hospital which will be highlighted and approaches suggested to manage them.
Part 1: 'A hospital admission experience for Barry and his family'
Dementia is an all-encompassing term for symptoms that arise when degenerative disorders affect the brain. There are multiple types of dementia, each type of dementia progressively causes damage to the brain affecting different regions of the brain. These cause a progressive decline in functional abilities. Each person with dementia has unique needs that differ from others (Fazio, Pace, Flinner, & Kallmyer, 2018). It is a challenge for a person with dementia to maintain independence and doing daily tasks as they become more and more dependent on other people, usually family members. There is no one size fits all care option. Moreover, there are several myths and stereotypes about dementia in the general population and even among healthcare providers, which further frustrates the patient and families (Beardon, Patel, Davies, & Ward, 2018). They also note that members of the family who care for a person with dementia may have emotional stress, sadness, poor quality of life and physical health and financial strain.
Patient with dementia are generally admitted for treatment of other co-morbidities where the environment of a hospital can be disorientating and frightening for someone with dementia. The unfamiliar environment and the constant challenge of understanding what is going on faced by a person with dementia is a stressful experience. Hung et al. (2017) studied patients with dementia and found them confused and distracted by noise from co-patients, alarms going off and frantic working of staff. They further state that hospital admission causes disruption in the normal routine life of a patient with dementia, and the patient can perceive it as a threat to their individuality. Patient distrust the staff and hospital settings and refuse medicines and nursing care and they perceive a threat to their independence due to restrictions of hospital settings (Hung et al., 2017).
In the present case, Barry must be feeling very confused with the hospital environment as his daily routine is being disturbed. He is not under the familiar loving care of his family members and his wife, this aspect is troubling for him as is evident from his agitation. His family members would also be worried about him as they would want to take care of him. As stated by Parkinson et al. (2017) under such circumstance a student nurse should provide a reassuring role both for Barry and his family by attentively listening to Barry’s demands and by trying to understand what his needs might be. She should make him feel in control and try to build a caring relationship. She could also take the help of Barry’s family in knowing his likes, dislikes, what his daily routine is, and such things. She could also allow his family members to take care of Barry, in partnership with the nurse, as they are more experienced in this. This would both reassure Barry and his family and help allay the suspicions and confusion.
Part 2: 'Reframing Barry’s care for dementia'
Since antiquity, the healthcare practice has been based on the disease model (Agusti, 2018). This approach concentrates on disease but not on the individual himself. It says that risk factors and causative agents combine to create a disease that has a particular pathology evident in signs and symptoms from which its diagnosis and treatment are designed. In the dementia medical model, the focus will be on brain disorder that causes dementia, and chemical and neurological alterations in the brain itself will be studied. Appropriate treatment which targets these changes are planned. Drugs are given, primarily antipsychotics that inhibit the signs and symptoms of dementia. The treatment will be planned by physicians and the patient and family have less choices. The patient may feel that they have little control over their treatment. The care provided under the disease model is focussed on completion of the task, like giving medication or bed bath at a set time. The focus on the patient’s independence and overall life is not there in the disease model. To manage dementia under disease model, pharmacological interventions are given to control the behavioural signs and symptoms.
To better provide healthcare in dementia, patient-centric model (PCC) is used. PCC focuses on individual rather than disease. Overall quality of life is given more importance than eliminating signs and symptoms. Fazio et al. (2018) defines person-centred care is a philosophy of care which focuses on knowing the needs of an individual by understanding the uniqueness of individual through establishing interpersonal relationship. Wilberforce et al. (2016) have summarized person-centeredness as first, understand the person and their experiences of illness in their uniqueness; second, empowering the patient in decision-making; and third, giving prime importance to interrelationships.
They further cite that providing fast reliable health advice and treatment, involving and supporting family and carers, self-care support education, providing support, showing empathy and respect, and paying attention to meet environmental and physical needs, are the mainstay of person-centred care. A person with dementia can express his unmet needs with his behaviour, which is important to recognize as is evident in Barry’s case. Nurses and healthcare providers can provide PCC care in dementia by involving family, showing empathy and support, providing flexibility in care, empowering patient and carers in decision-making, listening attentively, not prejudging, not rushing to complete tasks, but to focus on improving the overall quality of life of the patient.
Part 3:‘Caring for Barry’s Behavioural and Psychological Symptoms of dementia’
Majority of persons with dementia shows Behavioral and Psychological Symptoms of Dementia (BPSD)(Abraha et al., 2017). The BPSD shown in dementia generally include delusions, hallucinations, agitation, anxiety, aggression, wandering, disrobing, shadowing, depression, withdrawal, tearfulness, hopelessness, and so on, (Macfarlane & O’Connor, 2016). It is to be recognized under person-centric care that BPSD are an expression of unmet needs of a person with dementia. Since there is impairment of normal cognitive abilities, the patient resort to these behaviours to express his needs. So, it is necessary to understand these behaviours to assess the needs of the patient so that on meeting these needs these behaviours can be prevented. Healthcare providers should form an interpersonal therapeutic relationship with the patient. Effective communication is the key to establish a therapeutic relationship.
For effective communication language used by a healthcare provider is an important component which is used to build trust between him and the patient. Dementia language guidelines issued by Dementia Australia (2018) can be of immense help while conversing with patient. Language can have a considerable impact on treating people with dementia. Appropriate language should be used when talking to people of dementia or about them that should be non-stigmatising, respectful, empowering, accurate and inclusive. The words which stigmatise dementia when speaking of an individual with dementia, like, dementing illness, senility, senile dementia, affliction, demented should not be used.
Appropriate words in these cases are, dementia, or other forms of dementia, Alzheimer’s disease, or type of dementia, symptoms of dementia. There are further examples of words which can be stigmatizing like, sufferer/suffering, empty shell, someone who has lost their mind, inmates, demented person, dements, victim, and likes. More appropriate words to describe a person with dementia will be, a person/people with dementia. For pre-senile dementia or early-onset dementia, appropriate words will be younger-onset dementia. (Dementia Australia, 2017)
Loss of linguistic abilities, Language difficulties, difficulties of word-finding, especially when naming people or objects, forgetting friends and family members’ names, confusion over family relationships are some of the communication difficulties observed in a person with dementia (Banovic, Zunic, & Sinanovic, 2018). They further cite that verbal communication is difficult in Alzheimer’s disease but nonverbal communication is mostly present and caregiver must adapt to the abilities of the patient. The various strategies suggested by The Alzheimer’s Association can be used in Barry’s case, like, approaching Barry from the front in a non-threatening way, touching reassuringly, looking in the eyes at an equal level, smiling, speaking slowly, listening attentively, addressing by Barry’s name, treating him as an adult, giving enough time to respond and express, encouraging, avoiding judging, and so on. Avoiding confrontation and conflicts with Barry will help in understanding his needs and controlling BPSDs (“Communication | Alzheimer’s Association,” n.d.).
Part 4:‘Barry's nursing care in an acute hospital’
A person with dementia may be admitted in the hospital for other conditions, such as heart disease, breathing difficulty, diabetes, chronic obstructive airways disease, and other health problems. In a hospital, people with dementia are at greater risk of falling, delirium (Murray et al., 2019) and urinary tract infection and chest infection. Because of cognitive impairment, people with dementia are at greater risk as their comorbid conditions remain unassessed or under-assessed. There are several issues in acute care settings of a person with dementia that gets less attention such as assessing physical functioning, planning for discharge, elimination needs, risks of fall and functional dependency. Assessing physical functioning is important because the patient is unable to verbally communicate his difficulties. Observations by seeing, smelling, hearing, touching can provide vital clues about his conditions.
Multidisciplinary discharge plan with the involvement of the patient and the family should be done at the time of admission as per the National Framework for Action on Dementia. Falls risk increases in dementia due to various functional impairment (Fernando, Fraser, Hendriksen, Kim, & Muir-Hunter, 2017). People with dementia are functionally dependent on others which causes immobility, less self-care, unnecessary restrictions. Other conditions which arise for dementia patient in acute care settings are issues of pain, hydration and nutrition, pressure ulcers, oral health care, and sleeping problems.
Hydration and malnourishment are common problems due to several causes, such as, loss of appetite and satiety, swallowing difficulty, not enough staff to help, unappetising taste and presentation, dentures not fitting, stress, noise, and so on (Prizer & Zimmerman, 2018). Pressure ulcers are another risk which have many underlying causes, like, advanced age, mobility restriction, urinary incontinence, and others (Jaul, Factor, Karni, Schiffmiller, & Meiron, 2019). Sleep disturbances are also common due to variety of reasons, like stress, and others (Benca & Teodorescu, 2019). For patients with dementia, pain is frequently underdiagnosed and undertreated due to lack of communication (Feast et al., 2018).
In the present case, Barry has increased likelihood of facing all these problems due to advanced age. So, regular and appropriate assessment is necessary to evaluate the risks and manage the problem before complications arise. Falls risk assessment and nutritional assessment for both nutritional problems and pressure ulcer risks is recommended for Barry. To minimize the risks for different complications, an active therapeutic partnership between the nurse and the patient and family is a must which will allow an effective assessment of the problems.
Dementia is a very debilitating condition which is caused by a variety of reasons and every individual who is affected experience it uniquely. It hurts both the patient and family members as well as carers. When admitted to hospitals people with dementia feel great uncertainty and fear. In the acute care hospital setting, typically a model of care that emphasized disease rather than the patient is followed. For dementia, person-centric model is more useful as it emphasized empowering patient and family members/ carers in decision-making, actual needs of the patient are given importance, family is involved, interpersonal communications are a priority. Person with dementia shows behaviour and psychological symptoms, which are in essence, the expression of unmet needs.
Recognition of those needs gives the tool to manage these BPSDs. Person admitted in acute care hospitals have other conditions which require attention but these are frequently ignored. Applying patient-centric philosophy helps in active assessment of these problems and their management. It can be said that even in patients with dementia, by application of patient-centric principles quality of life can be improved. Recognising the individuality of the patient, valuing their independence, sharing their perspective, developing relationships, earning trust, engaging families form the cornerstone of care of the person with dementia.
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