Shouldering Alzheimer's Burdens


It should come as no surprise that Alzheimer's disease (AD) increasingly attracts the public's attention. AD is the fourth leading cause of adult deaths; it affects one in 10 by age 65, and as many as four in 10 after age 85. It is estimated that 4 million Americans have AD, and the number is expected to rise significantly.

To neurologists and other health care professionals, managing patients is challenging and often frustrating. Despite advances in our understanding and treatment of this illness, AD remains incurable and cannot be prevented. The devastating impact of AD on its victims is no less than tragic. Robbed of memories, judgment and thinking skills, patients lose their dignity and independence.

As the disease progresses and intellectual skills fail, many patients appear mercifully content and placid. Family members, at the same time, face tremendous upheaval. In some circles, families are burdened by the embarrassment and social stigma attached to this illness.

Often unprepared for their new roles as caregivers, spouses and children must make significant adjustments. Panic best describes the initial reaction of some family members when they are told the diagnosis. In many instances, family members are able to conquer their fears by gaining knowledge about AD and devising a realistic plan for the future.

Unfortunately, many spouses and children react with denial, refusing to believe that their loved one has AD. Some channel their fears and frustrations into anger, treating their loved one with hostility rather than love and empathy.

The demands placed on caregivers can be overwhelming. Eight in 10 caregivers report high levels of stress, and a large number are known to be at risk for clinical depression. Studies have shown that caregivers visit their physicians, use prescription medications and become hospitalized more often than non-caregivers. Spending an average of more than 70 hours per week as caregivers, it is no wonder that many spouses and children have difficulty maintaining their jobs.

The economic burden of AD can also be enormous, with the lifetime average cost of treatment estimated at almost $175,000 per person.

The greatest burden facing caregivers is the day-to-day supervision of AD patients. AD patients must be allowed to function as independently as possible in order to preserve self-esteem and dignity. At the same time, the home environment must be kept as safe as possible:

* Medications, toxic substances and dangerous appliances should be locked up or hidden from view.

* Doors of outside exits should be locked to prevent wandering.

* Bathroom doors should have two-way locks installed to prevent AD patients from locking themselves inside.

* Emergency numbers should be readily available near all telephones.

* Patients with imbalances and unsteady gait should have handgrips installed in the bathroom and shower.

* Table corners and counter ledges should be rounded to prevent injury in patients at risk for falling.

* Automatic shut-off features or timed switches on electrical appliances, smoke detectors and alarm systems should be part of a plan for home safety.

* AD patients should be discouraged from smoking because of the associated fire risk.

* Caregivers should report swallowing difficulties to the physician, as AD patients may be at risk for choking as the disease progresses.

The list of dangers and pitfalls is endless, imposing an exhausting and sometimes overwhelming burden on caregivers.

As the dementia progresses, caregivers often find themselves increasingly isolated. Friends and relatives often retreat rather than provide encouragement and support. Caregivers may find themselves unable to perform household chores or errands. It may be worthwhile for caregivers to educate friends about the disease, and gently ask for assistance with shopping or other tasks.

Caregivers often neglect themselves, with no time available for recreation, hobbies or socializing. Friends and relatives should be asked to stay with the patient while caregivers attend to personal needs outside of the home. Caregivers bearing the entire burden without outside assistance are at risk of exhaustion, depression, anxiety and a variety of health problems.

Day care centers specializing in the supervision of patients one or more days per week can provide healthy stimulation for patients and respite for caregivers. Various in-home assistance may be available and arranged by a physician or social worker to provide services such as skilled nursing and physical, occupational and speech therapy.

Some agencies provide personnel for homemaking or companion care. In-home care may also be available to financially disadvantaged patients through a county-sponsored program.

Nursing homes, board-and-care facilities and retirement homes may become necessary when caregivers are unable to provide care at home.

Caregivers should be encouraged to attend support groups. These groups encourage family members to take pride in their accomplishments as caregivers, provide them with practical tips in the provision of care, and help them deal with feelings of frustration, despair and guilt.

Family members must promote their own health and self-esteem. If caregivers fail to nurture their own well-being, they will clearly be unable to care successfully for the AD patient.


Cohen is attending neurologist, Cedars-Sinai Medical Center, and assistant clinical professor of medicine, UCLA School of Medicine.

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