The Middle to Late Stages of Alzheimer's

Middle to late-stage Alzheimer's is sometimes called “the long goodbye.” The disease causes volatile emotions, and those may lead to mood swings, crying, agitation, and outbursts doctors call catastrophic reactions: shouting, cursing, or even hitting others.

People with AD have difficulty comprehending what others say or do, and this may spur agitation, anger, and delusions (accusing a spouse of infidelity, talking to imaginary people, thinking a reflection in a mirror is a stranger). As Alzheimer's progresses, your loved one may engage in obsessive behavior, such as cleaning one object over and over or removing and replacing the contents of a drawer. She may pace, wring her hands, or ask the same question repeatedly.

Many people with AD sleep fitfully. They may awaken at night with hallucinations, feeling frightened and disoriented and unable to go back to sleep. That can trigger nighttime wandering.

Nearing the End

Contrary to what many people think — and what you may wish — people with Alzheimer's don't succumb peacefully to their disease. The final, most debilitating stage of Alzheimer's can last two to three years. During that time, your loved one will lose awareness of her surroundings and her ability to speak. She may not recognize you and others. She will probably lose control of her bladder and bowels. She will grow dependent on others to help her walk, sit up, and eventually swallow.

Bedridden, she will most likely need round-the-clock, hands-on care. She may develop severe joint pain and stiffness. She will be prone to pneumonia, urinary tract infections, dehydration, malnutrition, and bedsores. These conditions are commonly listed as causes of death among people with AD.

End-of-Life Medical Care

Medical care for people with advanced Alzheimer's should concentrate on daily care and comfort, not treatments that will cure illness or prolong life, Alzheimer's and geriatric specialists say. Make sure copies of advance medical directives are in your loved one's medical chart so staff at a hospital or nursing home will know what is and isn't to be done in medical emergencies.

The Alzheimer's Association's ethics advisory panel advises against using life-extending technologies and treatments. In the panel's opinion, measures that “prolong life in the advanced stage of Alzheimer's result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.”

You and your family may want to consider hospice care, which focuses entirely on pain management and comfort care, for your loved one. Typically, hospices care for people who have less than six months to live. Because it can be so difficult to predict how long a person with end-stage Alzheimer's will live, getting approved for hospice care can sometimes be a challenge. The National Hospice and Palliative Care Organization (www.nhpco.org) has published guidelines to help doctors determine when hospice is appropriate for people with Alzheimer's disease.

As the end approaches, follow this advice from Coach Broyles: “While your loved one may not know who you are, she still has feelings. Her need for love and touch has never been greater than it is now. She can still feel scared, rejected, lonely or sad.” Now is a time to hold her, talk to her, stroke her gently, and show your love and support.

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