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 lifeprolonging
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
The ethicalprinciple 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
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.
Autonomy: The right to be free to make our
own decisions and behave as we desireMedical care: Autonomy is ethical value
– Four Principles of Informed Consent (law)
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
non begin to slowly outweigh the ethical principle of
– Legal principle of parens patriae comes into play
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 is not the same as 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
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
Start with autonomous elder
Family starts to make decisions as cognitive impairment
First decisions are made in line with elder’s autonomous
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
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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