In the later stages, the person becomes unable to handle routine tasks such as bathing and dressing. The second patient, usually the spouse or adult child, learns that he or she is not only going to see the gradual deterioration of a loved one but will be faced with an overwhelming burden of personal care that endangers the caregiver’s own physical and mental health.
About half of caregivers develop symptoms of depression or anxiety. Caregiving spouses of dementia patients have a higher risk of dying than persons the same age who do not have the same burden. Contrary to popular belief, neither the patient nor the caregiver may experience immediate feelings of profound distress after the diagnosis. Symptoms of depression and anxiety generally remain about the same or eased a bit over the short term. This may be, in part, because the diagnosis explains some troubling symptoms and bring a degree of certainty to a situation that had been the source of confusion. It makes sense that both patients and caregivers benefit when they have opportunity to plan and prepare. The patient might be able to slow the progress of the disease with medication; the caregiver can explore community resources and line up sources of support. Before dementia becomes too advanced, the couple can work out financial and legal matters.
In the early stage of dementia, the patient may forget to take medication, make poor judgments and become unreliable in handling routine financial transactions. They may lose or misplace valuable items. As the disease progresses, the caregiver faces some difficult decisions. An adult child serving as primary caregiver may find it difficult telling Mom or Dad that she won’t let her/him handle his own finances. There is always some uncertainty about how and when to take away driving privileges. But it’s important to handle these matters with sensitivity.
In the middle stage of dementia, memory loss and confusion increase; the patient is more prone to agitation, and problems such as wandering and sun-downing emerge. Safety issues become paramount. New latches and locks–such as keyed deadbolts–may be needed for doors when an AD patient is prone to wander. “Sun-downing” describes a syndrome in which the Alzheimer’s patient starts becoming restless, agitated and irritable around dinnertime. The rest of the evening, including bedtime, becomes a major challenge. One solution is to see that the patient gets plenty of exercise during the day. The large meal of the day could be scheduled for noon so that hours after sundown have a quiet, peaceful tone.
REMEMBER!!! Do not interpret anger as you would from a well person. Anger is exaggerated in a confused person, who may not be angry at all. Anger is probably a result of a misunderstanding of what is happening and can be the only response remembered when under stress.
In the late stages, problems include incontinence, hallucinations, delusions, aggressive behavior and violence. Dressing, bathing, eating become difficult. All of these challenges are serious enough to consider nursing home care, but this is an option that many Americans cannot afford.
From the time of diagnosis, the caregiver faces physical, emotional and financial demands that start at a high level and continues to escalate. Unmanaged stress may show up in physical symptoms such as blurred vision, upset stomach and high blood pressure.
Communicating with an Alzheimer’s patient can be a challenge, but the task is easier when you:
- use a gentle, calm voice and choose simple words and short sentences,
- call the person by name and have his or her full attention before speaking,
- avoid talking to the patient like a child or as if he or she weren’t in the room,
- frame questions and instructions in a positive way.
Family members and friends should check in on caregivers regularly, make sure they are eating properly and insist that they get yearly physical examinations. Warning signs to be expected, but nevertheless taken seriously, include persistent anger, irritability, denial, poor concentration, sleep problems, withdrawal from social contacts, anxiety and depression. Even a caregiver who shows no outward signs needs help. Volunteer an afternoon, an evening or several days at a time to allow the person to get away from daily responsibilities and relax.
Casey M. Valiente, PharmD
