Consult an experienced Woods Cross Utah family lawyer if anyone close to you has been diagnosed with Alzheimer’s. It’s important that the person take certain decision as he may lose the ability to do so as the disease progresses. It’s important to take steps to preserve his legal right and his right to self-determination.

Alzheimer’s disease is a condition in which some common symptoms of aging in the central nervous system are seen at an earlier age than in most of the population, and in an accelerated and virulent manner. In his original published description, in the first decade of this century, Alzheimer defined the syndrome by the occurrence of certain characteristic markers, called tangles and plaques, found in high concentrations in certain areas of the brain at post mortem examination. There are also characteristic behaviors, and a typical clinical course, that can be used to make a diagnosis of Alzheimer’s disease while the person is still alive.
The most common early symptoms are related to rapid decrements of short-term memory. Short-term memory regularly and predictably falls off with increasing age, but with Alzheimer’s the losses are marked and sudden. Inability to learn names of new acquaintances, loss of favorite and important items of personal use (such as keys or billfold), and stopping in mid-action, unable to remember what project had been started, are commonly observed. Increasing poverty of language, with difficulty finding words to complete an idea or sentence, is also an early symptom. Confusion in the midst of familiar tasks (emptying the dishwasher, making lunch, doing personal laundry) is often the first symptom.

The second stage of Alzheimer’s disease is marked by more alarming changes. Pacing is common; wandering away from residence or workshop (with or without a specific destination in mind) is worrisome, especially if the person becomes repeatedly lost. There is usually some confusion about the names of familiar people, although the ability visually to distinguish strangers remains for a longer time. Urinary incontinence becomes frequent and fecal incontinence follows. A regular toileting schedule is helpful for a while, then a need for diapers is usual. The same repetitive remarks are made over and over, and the same conversations will be initiated.

As short-term memory is less and less functional, the ability to learn also is lost; one cannot learn if memory will not sustain the new material. Episodes of hitting or other physical assault can appear in this second stage when the person is confused and overwhelmed by too much stimulation or too high expectations. Simplification of the environment and of expected performance becomes essential to prevent these dangerous “catastrophic reactions.”

Abilities to perform activities of self-care–toileting, dressing, bathing, feeding–are lost gradually. There may be episodes of choking on food; early in the second stage choking is usually related to an increased appetite and stuffing food into the mouth (and chewing inefficiently); later the choking is related more to dysfunctions of swallowing, throat clearing, and coughing. An additional common symptom of the second stage is wakefulness at night. Usually the person will go to bed at an ordinary hour and fall asleep without difficulty, only to waken around midnight and not be able to go back to sleep; often the person will arise, dress, and attempt to leave for work or the day program.

This second phase again can go by rather fast–over as short a period as six months–or can be drawn out over six years or so. The third stage of the disease is marked by loss of the ability to walk; the person becomes chair–and bed-bound. There is no treatment for Alzheimer’s disease at this time. Psychoactive drugs are rarely needed to manage hyper-aggressive hitting or kicking. Antidepressant medication will sometimes relieve a concomitant depression. No drug treatment has been found that will reliably reverse, or even significantly slow, the course of this debilitating disease.

In our concern for the safety and physical well-being of a person with Alzheimer’s, it is easy to overlook the rights of the patient to self-determination. Protecting the rights of people with Alzheimer’s disease requires care and planning so that patients’ wishes may be honored when they can no longer make these wishes known. Speak to an experienced Woods Cross Utah family lawyer to know how you can assist you relative with Alzheimer’s.

Two topics relating to patient rights have particular relevance to the person with mental retardation who has Alzheimer’s disease: competence and informed consent.

Competence

The whole issue of competence and what it means has been repeatedly debated, and different experts use very different tests to arrive at a judgment. (See Chapter 23) In the case of Alzheimer’s disease, “the notions of limited competence and intermittent competence are useful, because they require a statement of the precise decisions a person can make, while avoiding the false dichotomy of ‘either competent or incompetent.’ Use of these notions preserves maximum autonomy, justifying intervention only in those instances where a person clearly is of questionable competence.” 1
In evaluating the competence of the person with mental retardation who has Alzheimer’s, special consideration must be given to possible limitations in life experience that might falsely suggest incompetence. Past institutionalization, little or no opportunity for education, and the relatively controlled environment in which many people with mental retardation have lived, may limit an individual’s knowledge but should not be interpreted as incompetence. Any adult may appear incompetent to respond when unfamiliar language is used to describe situations that have no parallel in prior experience or observation.

In assessing the competence of a person with mental retardation who may have Alzheimer’s, effort should be made to communicate in terms that the client himself has used in the past. If new information is introduced, such as alternative living arrangements or proposed medical testing, the use of examples that relate to the client’s own experiences would help to clarify explanations. Caregivers are vitally important in the preservation of client rights because they can explain to unfamiliar professionals the client’s usual style of communication, her current experiences, and her past history. Thus, competencies may be judged within the context of the individual’s life experience.

Probably the most important aspect of protecting the rights of the person developing Alzheimer’s is discussion about and selection of an appropriate surrogate decision-maker for a future time when the client may not be considered competent. In the very early stages of dementia the individual could name a person whom she knows well, trusts, and who is capable, willing, and available to make decisions for her, consistent with her wishes. The surrogate could be a relative, a caregiver, an advocate–basically, someone known to the client who would spend time learning what she would want and what she would refuse regarding care and medical treatment. The client may clearly state her desires, and a written record may be established at this time for future reference. For example, an individual may express the wish to continue working as long as possible, or may wish to retire early to pursue enjoyable hobbies. Living arrangements can be discussed, and the client may describe those relationships that are most important in her life. Close friendships and the many years of companionship of a roommate or housemate are important factors in considering environmental changes. While competent, the person should be asked what she wants for herself and should also be offered realistic alternatives.

The client may formalize his choice of a surrogate decision-maker through execution of a Power of Attorney. To execute a valid Power of Attorney, a person must be competent. Thus, it is important to address this issue in the early stages of suspected Alzheimer’s disease, before competence is seriously challenged. The concept of “limited” competencies recognizes that a person may be competent to appoint a trusted friend to make medical decisions for him while, at the same time, be incompetent to give his own adequately informed consent to treatment. In today’s world of complex medical technology it is difficult for many patients, especially under the stress of illness, to comprehend full explanations of proposed diagnostic and treatment procedures, purposes, and possible consequences. It is, therefore, particularly helpful to the person with mental retardation to appoint a trusted representative to make medical decisions for him when he is incapacitated due to intermittent symptoms of Alzheimer’s, or simply when medical information is too complex.

The Power of Attorney provides greater autonomy to the client than other forms of proxy decision-making because the person who may later become incompetent may choose the surrogate herself, may authorize specific types of decisions, and may discuss and document her wishes before she becomes incapacitated. The Power of Attorney also allows her to nominate her own conservator or guardian for the time when she can no longer handle her estate or personal decisions. Other proxy decision-makers are usually appointed when the client has already been found incompetent.

Legally authorized guardians are responsible for making decisions in the “best interest” of the ward rather than by considering what the previously competent person would want on the basis of past history and preferences, expressed or implied, prior to dementia (i.e., substituted judgment).
Presently there are no clear regulations that govern decision-making for people with Alzheimer’s disease. Since the illness develops gradually and erratically, it is inappropriate to seek a finding of incompetence and the appointment of a guardian while periods of confusion occur only sporadically. Since there is as yet no real treatment for Alzheimer’s disease, one may assume that the term medical “treatment” includes experimental approaches, psychotropic medications to control behavior, and therapy for intercurrent illnesses such as pneumonias. Under such circumstances it becomes particularly important that the Alzheimer’s patient have a spokesperson to represent her wishes as faithfully as possible. Ideally the competent patient should make as many important decisions as possible regarding health care while competence is not challenged, and these decisions should be respected.

Informed Consent

Non-emergency medical treatment requires the informed consent of the patient; this is a matter of particular concern in protecting the rights of people with mental retardation who have Alzheimer’s disease. To be valid, informed consent requires three conditions: first, the patient must be competent; second, consent must be voluntary; third, the patient must be informed of all the risks, benefits, discomforts, and all other likely consequences of the treatment.

The first requirement of informed, competent consent has already been discussed, and every effort should be made to allow the patient to make his own decisions as long as periods of competence continue.

The second requirement, voluntariness, presents a problem for people who are old and live in nursing homes, other institutional settings, or as a household dependent. Authority figures, even family members, may convey a sense of coercion to an elderly person who may also fear punitive consequences for refusal of treatment.

The third component of informed consent requires that the patient be told all the risks, benefits, discomforts, and other likely consequences of the treatment.

Estate Planning

If your near and dear one has been diagnosed with Alzheimer’s, you should consult an experienced Woods Cross Utah family lawyer so that the patient can take certain decisions that could impact his or her life as well as yours. The patient should be made aware of the estate planning tools available and how he or she can use them. Of course, it is the patient’s decision whether or not to use them. Just because someone is suffering from Alzheimer’s it does not necessarily mean that he or she should have a will or a trust set up. However, having them does help.

An experienced Woods Cross Utah family lawyer will seek information from the patient, as well. Several brief interviews are more likely to elicit a full array of information than is a single prolonged examination. Brief interviews can be conducted in any setting–the client’s residence or workshop, while taking a walk. The client may be more comfortable and more revealing in a setting that is familiar to her.

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