Alzheimer's & Dementia For Dummies
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Talking about end-of-life care options may seem a bit disheartening, especially because the end may still be many years away. But now, as soon as possible after diagnosis, is the time to discuss your loved one's wishes for her end-of-life care. You're going to have to make more decisions than you might think, so you want to start early.

If a patient is in the early stages of a memory disorder, she should be asked her wishes and make her own decisions (as much as she is able). Her caregivers should then carry out her wishes. Depending on the severity of your loved one's dementia at the time of diagnosis, she may still be capable of participating in the decision-making process in a meaningful way. You can consult an attorney to have any necessary documents drawn up for signature, if your loved one is still mentally competent to sign.

To make sure that the patient's choices for end-of-life care are carried out according to her wishes, advance directives are necessary documents. When a patient hasn't prepared an advance directive and is no longer capable of making such choices, the family caregiver must make these decisions for the patient.

Many patients succumb to physical ailments other than dementia or Alzheimer's disease (AD), such as heart attack, stroke, or complications of diabetes. In fact, most people with a memory disorder don't die from the dementia but rather from a complication of the disease, such as aspiration pneumonia or urinary tract infections. No matter how excellent their care has been, as their disease progresses, dementia and AD patients are unable to make decisions for themselves. That's why you should discuss these issues as much as possible while your loved one can still make her wishes known.

When your loved one is in advanced stages of dementia or AD, she may experience a life-threatening medical crisis, such as pneumonia, and you must decide what sort of care will be provided. In this sort of situation, you have three major choices available: letting nature take its course, palliative care, or aggressive care.

Letting nature take its course

When you've lived with a patient with a memory disorder for many years, as you near the end of the road, you may decide that you'll ride out whatever happens and let nature prevail. If you choose this course (based on your knowledge of your loved one's wishes), you absolutely must make these wishes known to your healthcare provider by signing a DNR (Do Not Resuscitate) order. All this order means is that when your loved one is dying, the medical care facility and its staff will allow that natural process to proceed without interfering.

Only doctors can complete DNR forms, but only competent patients or their power of attorney (POA) can request them. If you do ask for a DNR, the doctor will sign and ask the patient (if she is capable) or whoever is legally empowered to represent the patient to sign the document as well. Different states have different options for DNR orders, so ask your doctor what these are where you live. The DNR, which is a binding, legal document, is then put into the patient's medical record so anyone who provides care knows what to do if the patient experiences a life-threatening crisis. However, realize that this DNR form usually will need to be re-created each time your loved one is admitted to a hospital or nursing home.

Maybe your loved one signed an advance directive called a living will while she was still mentally capable of making end-of-life decisions. Living wills specify the exact types of medical treatment and interventions that patients do and don't want performed if they're in a crisis situation.

You may be thinking, "Well, of course if a dementia or AD patient is dying, doctors are just going to let them go." That's not always the case, though. Even when a patient's quality of life isn't good, some healthcare providers are determined to prolong her life no matter what. They may aggressively resuscitate a dying patient, inserting ventilator tubes and performing other invasive procedures to restore life. But if your loved one has had the foresight to sign a living will and you have made sure there is a DNR, then the attending doctors and the medical facility must honor that request.

Palliative care

Palliative care means that your loved one will be fed and kept comfortable and free from pain. It also means that appropriate care and medications will be given to alleviate any distressing symptoms the patient may display. For example, if a patient is running a fever and is uncomfortable, the doctor may administer acetaminophen to bring down the fever. But no aggressive or invasive measures will be taken to artificially extend the patient's life.

The verb palliate derives from the Latin, palliatus, which means "to conceal." Palliative care does just that; it "conceals" the intensity of an illness through moderation of its effects with appropriate care and medications. However, it doesn't change the course of the illness. It is a way of letting nature take its course but at the same time treating pain and other distressing symptoms.

Palliative care often goes hand in hand with a DNR order. It's a way for family members to let healthcare providers know that they want to ensure their loved one's comfort and safety without taking any extraordinary or aggressive steps to save that person's life if she experiences a potentially fatal health crisis. This helps prevent unwanted medical intervention at the end of life.

One way to provide palliative care is to enroll the person with dementia or AD in hospice. Unless your loved one has another terminal condition (like advanced cancer or heart failure), in order to qualify for hospice using dementia or AD as the terminal diagnosis, certain requirements must be met. The patient with dementia of AD must be at Stage 7c on the Functional Assessment or FAST SCALE. This stage requires that your loved one is unable to walk without significant assistance and the ability to speak is essentially gone. In addition, she must have had at least one of the following conditions in the last 12 months:

  • Aspiration pneumonia
  • Kidney infection
  • Multiple severe bedsores
  • Recurrent fever
  • Weight loss of at least 10 percent of body weight
Medicare pays for hospice and requires your loved one's physician to certify that life expectancy is six months or less. To stay on hospice during that time, the patient must continue to show decline. Hospice can be provided at home if a caregiver is present 24/7 to care for and monitor the patient and provide medications for comfort as needed. It can also be provided in an assisted living facility or nursing home. Some larger cities have an inpatient hospice center where patients can be admitted.

Aggressive care

Some families just can't accept the idea of letting go of a beloved family member, no matter how far advanced her illness. These families may choose to opt for aggressive end-of-life care, authorizing their physicians to employ whatever means necessary to prolong their loved one's life, including the use of ventilation equipment to maintain breathing and oxygenation and defibrillators to restart the heart.

Although end-of-life care is an extremely personal choice, choose carefully if you're considering an aggressive approach. Aggressive care is appropriate and understandable in situations where someone has suffered a traumatic injury or is in a critical stage of an illness that could be treated. If these patients can be helped through their crises, they may recover fully and go on to enjoy many more years of a good quality of life. Other times, it can be the beginning of a long road on life support, promoting quantity of life over quality of life.

You need to remember your loved one's dementia or AD is a progressive disabling condition. Even if you "save" your loved one, ask yourself: "What am I saving her for?" You have to determine to what degree your loved one has quality of life. You and your loved one have already been through a lot simply dealing with a memory disorder. If there is no quality of life, there's absolutely nothing wrong with choosing to let life end naturally.

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The American Geriatrics Society, (AGS) is a nationwide, not-for-profit society of geriatrics healthcare professionals dedicated to improving the health, independence, and quality of life of older people.

The Health in Aging Foundation is a national non-profit organization established by AGS.

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