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Important Decisions for Discussion
With an Alzheimer's disease diagnosis comes important discussions and decisions.
When is it time to stop driving? Should I continue living on my own? When should I tell my family and friends?
The compassionate and knowledgeable staff at Banner Alzheimer's Institute (BAI) are here to help answer these questions and make the decisions and corresponding discussions easier.
Learn more about:
- When is it time to stop driving?
- Clues of Unsafe Driving
- When do we start talking about driving?
- Are there other safety concerns to consider beyond driving?
- How do we plan ahead for the time when decisions can no longer be made?
- What are important health care decisions to be made?
- Do I need to see an attorney to get and sign these forms?
- What if the person never completed health care decisions?
- What are common health care decisions for dementia?
- When should I tell family and friends about the dementia diagnosis?
When is it time to stop driving?
Driving is an activity that must be addressed immediately after memory loss becomes evident. Research shows that the incidence of accidents involving people with dementia rises sharply, even very early in the disease. Driving requires regular scrutiny for as long as the person continues to drive.
Issues beyond memory loss impact driving. Be aware of the following:
- The brain's ability to see or perceive changes can cause problems with depth perception.
- The inability to see moving objects or to recognize familiar places.
- The inability to remember will interfere with determining where the person is coming/going and eventually how to operate the vehicle.
- Judgment is impaired, thus the person will not respond quickly or appropriately when the unexpected occurs.
- Slowed brain processing time will prevent the person with dementia from responding to driving decisions quickly.
- Fender benders and mishaps (unexplained dents and scrapes on the vehicle)
- Hitting parked cars and trees (common when backing up)
- Missed signals such as running a stop sign or red light
- Gross errors in judgment, such as thinking the train should stop, making a left turn on a red light, or turning from the wrong lane
- Getting angry with other drivers
- Becoming lost
- Slowing down or speeding up for no apparent reason
- Driving erratically
- Needing directions in familiar places
- Missing an exit and backing up
- Getting onto the wrong freeway ramp
- Making unsafe U-turns
- Going the wrong way on a one-way street
- Driving on the sidewalk
- Backing out of the garage with the door closed or through the front of the garage
- Falling asleep or having tired spells
- Needing a "co-pilot" in the car
When do we start talking about driving?
As a family, it is important to discuss driving as soon as the disease is diagnosed, or earlier if problems arise. The first discussion should center on the person's illness and the need for safety. We recommend telling the person, "You may not know when you are unsafe, so someone will have to tell you. Who will you trust to tell you when you need to stop driving?"
This discussion informs the person that giving up driving is inevitable and brings the person into the decision-making process. Then choose the decision-maker and ask them to observe the person driving on a regular basis. Check monthly if the person is mildly impaired or weekly if impairment is obvious. Organize family members to take part in the discussion and jointly come to a consensus. The person with early dementia should have a Medic-Alert bracelet in case they are stopped by police. This helps ensure the person is not be arrested if their symptoms of mild confusion are mistaken for DUI. For those who insist that they are still safe to drive, refuse to give up driving, or if the physician or family is unsure about safety, a driving assessment will be necessary. This service tests the individual and makes recommendations to the person with dementia, their family and the physician about continued driving. Ask your physician for a referral.
Expect the person to become upset or angry as driving is discussed and privileges are taken away. Emphasize that it is the disease that is causing the problem, so the person focuses their anger on the disease. Understand that anger is really grief at the unfairness of having dementia. Apologize that they are upset, but remain steadfast that they cannot drive.
Are there other safety concerns to consider beyond
People with dementia can easily fall prey to scams. Family members must provide supervision over such matters as bill paying, bank statements and investments. They should also monitor subscriptions, sweepstakes, possible identity theft or other scams and telemarketers that may be lurking.
Home safety should be reviewed routinely, particularly for those who live alone. While we want to promote independence and function for as long as possible, constant surveillance will allow the family to make necessary changes over time.
Other safety considerations should include removal/locking of guns and power tools, supervision of those who smoke, and automatic shutoff switches on ovens/stoves. Wandering can be an issue for many as the disease progresses. Installing locks in the home is helpful and registration into the Alzheimer's Association Safe Return program is essential.
How do we plan ahead for the time when decisions can no longer be made? Most people with dementia reach a point where they are unable to manage their finances, pay bills and make decisions about their health care and well-being. Prior to this, the person with dementia and their family should identify a person who will be able to make the decisions when such assistance is needed. In addition, the person must designate who can receive information from health care providers and other sources. Due to federal laws regarding confidentiality, medical professionals cannot share information with anyone without either the written consent of the patient or a Durable Health Care Power of Attorney.
Families must take care of certain legal documents early in the disease while the person is still able to communicate their wishes. These legal plans are known as "advanced directives." Many families wrongly assume that the person's written will takes care of who will make the decisions. However, legally a will only applies after a person is deceased.
While every state has laws for establishing advanced directives and Durable Health Care Power of Attorney, each varies slightly on how they are established and implemented. Families are encouraged to seek legal counsel for the specifics in the state where the person resides. Families should look for attorneys who specialize in one of the following types of practice: elder law, probate law or family law.
What are important health care decisions to be
Alzheimer's disease and related dementias are progressive in nature, meaning that the person will continue to lose abilities over time, including the ability to make decisions about future medical treatment and care. Dementia is now a leading cause of death among older Americans. Therefore, it is important for the person with dementia to begin discussing issues of care with trusted family and friends.
More importantly, it is essential for the person with dementia to complete advance directives and appoint a health care decision-maker when they lose the ability to make decisions on their own. Typically, a Durable Health Care Power of Attorney and Durable Mental Health Power of Attorney will be named to make future health care decisions. When identifying who the Health Care Power of Attorney should be, the person with dementia should make the choice based on who is best suited to speak on their behalf and represent their wishes should it become necessary.
When developing legal documents, the person must be early enough in the disease to fully understand what he/she is signing. If an attorney does not feel the person is able to understand, the family will need to pursue a court-ordered guardianship, which gives the guardian responsibilities in making decisions about the person's health and living arrangements. A conservatorship gives power to make decisions about the person's finances. In most states, conservators and guardians must file routine reports to the court of all money spent and how the person's needs are being met.
Do I need to see an attorney to get and sign these
Attorneys are not required to implement health care decisions. The Arizona Attorney General provides a very comprehensive "Life Care Planning" packet free of charge that includes detailed instructions about health care decisions along with specific forms that can be signed. Forms include the Durable Health Care Power of Attorney, the Durable Mental Health Care Power of Attorney, Living Will, Letter to my Agent and the Pre-Hospital Medical Directive. The materials, available in English and Spanish, can be downloaded on the computer or requested via phone and then submitted by mail. To obtain these documents, you can call (602) 542-2123 or go to www.azag.gov/life_care.
What if the person never completed a health care
If the person does not have advance directives or never named a Health Care Power of Attorney, Arizona law allows "surrogate" or default decision-makers to make most health care decisions. A surrogate decision-maker may include a spouse, adult child, sibling, domestic partner, etc. Surrogates are responsible for serving as a substitute decision-maker for the person and making decisions that are consistent with what they believe the person would want. If the person is unable to make decisions, only a Durable Health Care Power of Attorney or court-appointed guardian can decide to stop feeding tubes, unless there is a medical reason to do so.
What are common health care decisions for
Common health care decisions that people with dementia and their decision-makers face as the disease becomes more severe include the use of:
- Cardiopulmonary resuscitation (CPR)
- Feeding tubes
- Intravenous (IV) hydration
- Antibiotics to treat pneumonia and urinary tract or other infections
Cardiopulmonary resuscitation (CPR) involves efforts to maintain heart and breathing functions usually in the event of cardiac arrest. However, CPR also can include the use of respirators or ventilators when a person has problems breathing. These efforts may or may not succeed in restarting the heart and breathing, and may be painful and even cause bodily injury. If successful, life may be extended on life-supporting devices with the risk for substantially reduced quality of life. If the person or a surrogate decision-maker chooses not to pursue resuscitation, the person's physician will be asked to complete and sign a Do Not Resuscitate (DNR) order, which is then placed in the person's medical record. A DNR order is limited to resuscitation and does not rule out the provision of other medical interventions and quality long-term care services.
Feeding tubes usually become a consideration in advanced dementia as eating and swallowing difficulties can occur, leading to weight loss. Most studies provide little evidence that feeding tubes extend life, prevent infections or improve comfort. Some studies have shown higher levels of aspiration, pneumonia, diarrhea and the use of physical restraints. Careful feeding programs are alternatives to tube feeding.
Hospitalization is an important consideration since changes in the environment can be stressful and disruptive for a person with dementia, even for those in the early stages. Hospitals are particularly challenging environments because they typically lack the calmness, familiarity and predictability of settings that are beneficial for the person. Alternatives to hospitalization include the delivery of services in a long-term care facility or home.
Intravenous hydration may provide temporary fluid replacement, however, it cannot maintain nutrition and likely will decrease comfort. In the absence of nutrition and hydration, the body develops endorphins, which are morphine-like substances that blunt nerve endings. Research indicates that this form of death is comfortable and can be enhanced by supplemental pain management approaches.
Antibiotics may or may not improve infections, which are common in advanced dementia. Pneumonia, often a result of problems with swallowing, and urinary tract infections are common. Pneumonia is often the most common cause of death in dementia patients. If a person decides against the use of antibiotics, pain medications and other comfort approaches can effectively manage discomfort.
Brain autopsy remains the only way to confirm that an individual had Alzheimer's disease or another type of dementia. Arrangements for brain autopsy should be set-up well in advance of the person's death.
Health care decisions should be reviewed as dementia progresses or when significant changes occur in the person's health. It is important to ask questions or get clarification about any of the health care inquiries you may have.
When should I tell family and friends about the dementia
While receiving a diagnosis of Alzheimer's disease or related dementia will be disappointing, most patients and family caregivers feel relieved to get a proper diagnosis.
Unfortunately, dementia carries an unwanted stigma that may result in family and friends avoiding the person with dementia. It is important that families and friends get information, but how the information is given and when, will vary from person to person. Early in the disease, the person affected should be allowed to share the diagnosis in the way that is best for that individual. Some will be very open with both family and friends calling the disease by name while others may be more comfortable talking about "memory changes." Be positive when talking about the diagnosis and stress what is still possible rather than changes or losses.
As the disease progresses or problems in communication and behavior become more apparent, family caregivers will often need to explain gently that their loved one has a memory problem or dementia. Being honest is helpful for most people, particularly when it is coupled with "how you can help me/us" along the way. As discussed previously, people with dementia do best when the disease is talked about openly and respectfully. When we hide talking about the disease, the person with dementia is likely to feel that we are plotting against him/her. Banner Alzheimer's Institute offers a business card that can be used when out in public to quietly alert strangers to unusual behaviors.