Dementia is a term that describes the loss of cognitive function, usually because of damaged brain cells. It includes memory loss and at least one of the following: difficulty with language, impaired movement, and inability to plan and initiate appropriate behaviors socially or at work. People with dementia may not be able to care for themselves by getting dressed or eating; they may have trouble balancing their checkbook and may get lost in familiar settings. One consequence of dementia may be a limited capacity to express or indicate preferences concerning matters of great personal significance. Examples of such matters include decisions about where to reside, how to distribute or manage property, whether to drive, whether to agree to pharmacological or surgical treatments, whether to participate in clinical research, whether to authorize a “do not resuscitate” order, or whether to decline other life-prolonging measures.
The burden of disease from dementia worldwide is great and is only increasing. It creates a "substantial burden on persons with dementia, their loved ones, caregivers, healthcare providers, and the institutions in which they are cared for" (Allen, 2020).
The ethical principle of non-malificence requires the consideration of the psychological impact the diagnosis may have on the patient. There has been a concern that patients receiving a diagnosis may experience psychological harm (Pinner & Bouman, 2003; Pucci et al., 2003; Smith & Beattie, 2001). This harm may occur in the form of depression (Smith & Beattie, 2001; Waite, Bebbington, Skelton-Robinson, & Orrell, 2004) and/or suicidal ideation (Carpenter & Dave, 2004; Jha, Tabet, & Orrell, 2001). Although this concern is widely held, there is no significant evidence that being told a dementia diagnosis causes depression.
Deontology is to decide if an action is right or wrong by deciding whether it is the sort of thing you ought to do as a duty. Autonomy is often defined as the freedom to make your own choices, but people rarely make decisions in isolation. Autonomy can be promoted in people with dementia by encouraging relationships that are important to the person, and by supporting the person in maintaining their sense of self and expressing their values. A person’s well-being includes both their moment-to-moment experience of pleasure, and more objective factors such as their level of mental ability.
People with dementia have interests, both in their autonomy and their wellbeing. Promoting autonomy involves enabling and fostering relationships that are important to the person, and supporting them in maintaining their sense of self and expressing their values. Autonomy is not simply to be equated with the ability to make rational decisions. A person's wellbeing includes both their moment-to-moment experiences of contentment or pleasure, and more objective factors such as their level of cognitive functioning. The separate interests of carers must be recognized and promoted.
A related ethical consideration that should be made regarding dementia is a greater focus on long-term care. Preferably in early stage dementia, health centers or homes that take care of Dementia patients need to be trained to better ensure that dementia patients meet their nutritional needs, as this can help the prognosis of dementia in the later stages. Ensuring the presence of "nutritional champions" (Wilson, 2011) in every home will help delay Dementia issues related to lack of nutrition because these nutritional champions can "recognize oral feeding difficulties early through their knowledge, understanding and development in nutritional practices (Wilson, 2011). In doing this, the prognosis of dementia will be less severe, and allow more autonomy for Dementia patients. Such an emphasis on increased autonomy allows dementia patients to better perform of their duties of being healthier, more responsible citizens and this pays respect to the principles of deonotology.
Another ethical consideration that needs to be made early is end of life planning. This needs to be done early, while the patient suffering from dementia is still relatively coherent so that they have the "decisional capacity to comprehend possible end of life scenarios, to reflect on what types of medical care she would want to accept or to refuse,and at what point(s) in disease progression she would want her directives to be implemented" (Allen, 2020). This again relates to the principles of autonomy and deontology because doing this early gives the patient the agency to decide for themselves how they want to spend the remainder of their days while they are still able to make those kinds of decisions. It also relates to the liberty principle because the patient is taking charge of themselves before they harm someone else, and making decisions before they reach the stage of disease where their mental health becomes too damaged. At that point, someone else might have to stop them, but if "advance care planning" (Allen, 2020) works as intended, and the patient makes the arrangements early on, the patient can rest well knowing that when they reach that stage everything will be taken care of the way they want it to be taken care of.'
In medical care: Autonomy is ethically valuable.
Four Principles of Informed Consent:
- Medical information to be given clearly
- Ensure that patient understands information well
- Freedom to decide without coercion
- Capacity to make decision
- Dementia results in the progressive loss of capacities on which autonomy and informed consent are based
- Ethical principles of beneficence and non-maleficence begin to slowly outweigh the ethical principle of autonomy
- Legal principle of Parens patriae or "parent of the nation" comes into play to protect people who are not able to protect themselves
- Legal system developed mechanisms for intervening in lives of non-autonomous people without their current consent
- Legal determinations of Incompetence/Conservatorships
- Self-planning: Durable powers of attorney, Living Trusts, etc.
Competency vs. Capacity
Person may not be legally competent to make decisions but may have transitory capacity. Families and professionals may erroneously assume that dementia patients have no capacity at given time. Constant tension between not causing distress for person (non-maleficence) and giving person as much control as possible (autonomy)
When person loses capacity to make own decisions, family gradually takes over. Starts with autonomous elder. Family starts to make decisions as cognitive impairment increases First decisions are made in line with elder’s autonomous wishes. As impairment worsens, family begins to make decisions that encroach on autonomy of elder, based on best interests of elder (beneficence) Final phase - beneficence is key: preserve dignity, alleviate suffering, decline aggressive or intrusive medical care
People with dementia are less often told the diagnosis People with dementia are given euphemisms (memory loss) Family members often prefer the person not be told, Despite agreeing they would want to know if they were in that situation
Family members feel person will be distressed by the information and will not understand anyway BUT: People with early dementia who have been told the diagnosis generally feel this is preferable, even though they may find it upsetting. People with dementia have described distress, confusion, and harm caused by not knowing the diagnosis
Dementia has many different causes, some of which are difficult to tell apart. Many medical conditions can cause dementia symptoms, especially in older people.
•The causes of dementia include various diseases and infections, strokes, head injuries, drugs, and nutritional deficiencies.
•All dementias reflect dysfunction in the cerebral cortex, or brain tissue. Some disease processes damage the cortex directly; others disrupt subcortical areas that normally regulate the function of the cortex.
•When the underlying process does not permanently damage the cortical tissue, the dementia may sometimes be stopped or reversed.
•In classifying dementias, medical professionals may either separate cortical or subcortical dementias or divide reversible and irreversible dementias.
•Word-finding difficulty - May be able to compensate by using synonyms or defining the word
•Forgetting names, appointments, or whether or not the person has done something; losing things
•Difficulty performing familiar tasks - Driving, cooking a meal, household chores, managing personal finances
•Personality changes (for example, sociable person becomes withdrawn or a quiet person is coarse and silly)
•Mood swings, often with brief periods of anger or rage
•Behavior disorders - Paranoia and suspiciousness
•Decline in level of functioning but able to follow established routines at home
•Confusion, disorientation in unfamiliar surroundings - May wander, trying to return to familiar surroundings
•Worsening of symptoms seen in early dementia, with less ability to compensate
•Unable to carry out activities of daily living (eg, bathing, dressing, grooming, feeding, using the toilet) without help
•Disrupted sleep (often napping in the daytime, up at night)
•Unable to learn new information
•Increasing disorientation and confusion even in familiar surroundings
•Greater risk of falls and accidents due to poor judgment and confusion
•Behavior disorders - Paranoid delusions, aggressiveness, agitation, inappropriate sexual behavior
•Confabulation (believing the person has done or experienced things that never happened)
•Inattention, poor concentration, loss of interest in the outside world
•Abnormal moods (anxiety, depression)
•Worsening of symptoms seen in early and intermediate dementia
•Complete dependence on others for activities of daily living
•May be unable to walk or move from place to place unassisted
•Impairment of other movements such as swallowing - Increases risk of malnutrition, choking, and aspiration (inhaling foods and beverages, saliva, or mucus into lungs)
•Complete loss of short- and long-term memory - May be unable to recognize even close relatives and friends
•Complications - Dehydration, malnutrition, problems with bladder control, infections, aspiration, seizures, pressure sores, injuries from accidents or falls
Most causes of dementia are not preventable. Quitting smoking and controlling high blood pressure and diabetes can help you reduce your risk of vascular dementia. This is dementia caused by a series of small strokes. Eating a low-fat diet and exercising regularly may also reduce the risk of vascular dementia.
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