Comfort, dignity and respect — these are important words for caregivers to remember in ensuring quality of life during the late stage of Alzheimer’s disease. At this point in the disease process, people typically lose the ability to talk and walk and experience difficulties with eating. Families and care providers play a critical role in making tough decisions that ultimately respect the person’s end-of-life wishes and at the same time maintain the person’s dignity and comfort.
Ideally, discussions about end-of-life issues should take place while the person with the disease still has the capacity to make decisions. People with Alzheimer’s have the legal right to limit or forgo medical or life-sustaining treatment, including the use of mechanical ventilators, cardiopulmonary resuscitation, antibiotics and artificial nutrition and hydration. These wishes can be expressed through advance directives.
Two common forms of advance directives are a living will and a durable power of attorney for health care. A living will states the individual’s choices for future medical care decisions. The durable power of attorney allows the person with Alzheimer’s to designate a surrogate, usually a trusted family member, to make specific decisions about treatment on his or her behalf.
Artificial Nutrition and Hydration for Patients with Advanced Dementia
People with Alzheimer’s may also refuse to eat and drink. Such cases should be evaluated to make sure that they are not due to conditions, such as constipation, kidney failure, nausea and fluid and electrolyte imbalance, that could be reversed with medications.
One of the more difficult decisions for families to make is whether or not to withhold nutrition and hydration in response to a patient’s refusal to eat or drink. Many families and care providers believe that it is appropriate to do everything in their power to get the person to eat or drink. The use of feeding tubes and intravenous (IV) hydration is often assumed to prolong life when in fact it could be lengthening the dying process. In addition, if these artificial means are used, families will eventually be faced with the tough decision about whether or not to withdraw such treatment.
Treating Infections During Late-Stage Alzheimer’s
Pneumonia and urinary tract infections are common in the last stage of Alzheimer’s. The person’s advance directive should indicate whether preventive measures such as pneumonia vaccines and antibiotics may be used. If the Alzheimer patient does not wish to receive these, care providers can use medications to reduce pain and make the person more comfortable.
If the patient cannot talk, it is important to look for behavioral clues such as depressive or psychotic symptoms, anxiety and sleep and activity disturbances that may indicate he or she is experiencing pain.
Should Restraints Be Avoided for Older Adults With Dementia?
Restraints may be used in long-term care settings and hospitals as a means to control Alzheimer-related behavior problems such as wandering, agitation and combativeness. They are also used to prevent patients who are receiving artificial nutrition from pulling out the feeding tube.
Although restraints are intended to protect the safety of the patient, their use can cause harm as well as jeopardize the individual’s independence and dignity. According to the Joint Commission on Accreditation of Health Care Organizations (JCAHO), an organization that evaluates and accredits health care organizations, studies have demonstrated that effective programming can eliminate the need for restraints. Physical restraints restrict the person’s ability to move and, as a result, can cause incontinence, loss of muscle tone, pressure sores, depression and decreased appetite.
People with Alzheimer’s have the right to receive care without the use of physical or chemical restraints that are not needed to treat a medical condition. Care providers have an obligation to try alternatives to restraints, such as diversions for aggressive behavior or safe places to wander.
How Does Hospice Care Work for Dementia Patients?
People with Alzheimer’s disease will likely be in and out of nursing homes and hospitals as the disease advances. One unique care option is hospice. The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses and their families. Hospice places an emphasis on maximizing patient comfort and providing counseling and bereavement services to the family before and after their loved one dies.
When Is an Alzheimer’s Patient Ready for Hospice?
To qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer’s disease as having less than six months to live.
Support for Family Caregivers During Late-Stage Alzheimer’s
It is important for caregivers to seek support, particularly during this difficult stage of the disease. Local chapters of the Alzheimer’s Association have support groups and help lines that allow caregivers to deal with the emotions they may be experiencing, including stress, grief, guilt, anger and depression.