Rights of Alzheimer’s Patients

Because there are so many legal and ethical questions bound up with having Alzheimer’s disease, it’s important to draw the lines with rights and responsibilities as carefully as possible. In the interest of compassion, it is also desirable to be as clear as possible about each person’s responsibilities at each stage of the disease.

Here’s a partial list of the patient’s rights and what they mean to his dignity and well-being.

The Right to Know

A “conspiracy of silence” has been found to be detrimental for all
serious diseases — Alzheimer’s is no exception. Generally, patients in the early stages know something is wrong, and, when they ask, they deserve to be told precisely what it is. This can help allay their fears and uncertainties.

When the patient knows what is happening to him, he can exercise informed choice about the care he will receive. While still capable of making decisions (in the earliest stages of the illness), he should be given control over what is being done with his body, and he should be granted a right to his own privacy. If he is conscious or aware of the fundamental choices to be made regarding terminal care and life-
support systems, he should be consulted. Informed consent is the
key element to giving the patient as much dignity and individuality as he can handle.

The Right to Grieve

Give the patient every opportunity to share his feelings and sadness with his family, friends and other caregivers. Patients can benefit from an outpouring of love and care — and assurances of constancy — from the family. Patients and family have the right to say “goodbye.”

The Right to Quality Care

The patient deserves the very best in care, whether at home or in a nursing facility. Not only should the environment be free of hazards (physical dangers, possibility of wandering off), it should also be conducive to the patient’s emotional well-being. Whenever possible, the patient should not be excessively constrained by medications such as tranquilizers or restrained physically for any length of time — at least, not as an alternative to well-designed, proper long-term care. The patient has a right to stimulation, whether through personal attention or programmed activities.

In the early stage of Alzheimer’s, the patient can help make the decision as to the best nursing home. If he accompanies the family as they visit potential homes and has input in the decision-making process, the family will not feel as burdened by the decision to put him in a home.

The Right to Manage Assets

Early on, the patient and family should plan financial affairs carefully, to allow for the inevitable admission of the patient to a long-term care facility and to ensure that payment for this care won’t impoverish the spouse and dependent children. You should talk to a financial advisor at the onset of symptoms. Also, have papers drawn up to designate power-of-attorney to the responsible caregiver. Prior planning in matters such as these is essential to peace of mind in the years ahead. In this way, your loved one can also be part of the decision-making process.

The Right to Consider All Health Care Options

Since an Alzheimer’s patient may eventually be put on life-support machines, the patient should make decisions early on regarding the prolongation of life. Creating a living will or granting a power-of-attorney will facilitate actions the family has to take down the road — based on decisions the patient has already made. Of course, regulations regarding the prolongation and/or termination of life vary widely according to the geographic jurisdiction you fall under. You should find out about the regulations in effect in your area, so you understand the latitude you and your family have with regard to these decisions.

The Right to Participate in Research Projects

Often, participation in Alzheimer’s research projects can give patients an added sense of purpose or meaning to their suffering and pain. Patients must give their consent to be subjects at an early stage, again in the form of a power of attorney or an appointed representative. In many cases, the family will be required to sign a release. Often, discussion with the patient and family is initiated in the early stage of Alzheimer’s; the decision itself is dictated by the timing of the research proposal.

Just as the patients have certain rights, so the families must also bear certain responsibilities. Carrying these out not only serves the loved one who has Alzheimer’s, but also helps to set limits and preserve the lives of the individual members of the family. Where possible, families should try to confront the disease with the patient and share in the grieving. They must be courageous and honest with the patient. Families must also safeguard their own self-interests, maintaining the proper balance between the demands of their own lives and those of their loved one.

The role of professional caregivers is essential to the protection and maintenance of these rights and responsibilities. In order that both the patients and the family feel they can act courageously and decisively, they must be fully aware of the support and infrastructure provided by professional caregivers. Likewise, professionals who understand the range of problems connected with the disease can help families come to appropriate decisions and resolve emotional conflicts.