Counseling Alzheimer's Patients and Their Families

Elayne Forgie, M.S., CMC
ElderCare at Home
Lakeworth, Florida  33461
1-800-209-4342

Member of the national ElderCare Matters Alliance, Florida chapter

Alzheimer's disease can have devastating consequences for patients and their families. Counseling tailored to the manifestations of each stage of Alzheimer's disease is one approach clinicians can adopt to help meet patients' needs. In the early stage, treatment options and the development of advance directives should be the focus. Problems that arise with declining cognitive function, personality changes, and communication deficits should be addressed during the long second stage. During the final stage, the family will need support while they make the difficult decisions regarding end-of-life care.

Once considered a diagnosis of exclusion, Alzheimer's disease (AD) is now considered a diagnosis of inclusion that can be accurately made in about 90% of cases, based on history and clinical presentation. (1-3) Gradual onset and progressive cognitive decline are the hallmarks of the disease; motor and sensory functions are spared until the later stages.

In addition to the emotional toll on families who watch their loved ones experience the drastic personality changes of AD, the economic impact of the disease is tremendous. AD costs the United States approximately $100 billion per year, including an estimated $36 billion in decreased caregiver productivity. Because of financial concerns, caregivers often try to keep the patient at home for as long as possible. Day care services for Alzheimer's patients typically begin at about $25 per day, and accommodations in a skilled nursing facility range in cost from $2,500 to $5,000 monthly.

AD is the leading cause of dementia, affecting an estimated four million Americans. Its prevalence has been predicted to double by the year 2050, or even by 2020. Most patients are diagnosed after age 60 and have an average life expectancy of eight to 10 years (but as long as 20) after onset of symptoms. Contrary to prior belief, recent studies show no significant difference in AD incidence between men and women. .

Depending on the severity of the patient's impairment, caregivers may spend as many as 100 hours a week on patient-centered duties, often neglecting their own health and experiencing high levels of stress. (3) Supportive services available to promote caregiver wellbeing are frequently underused. (8) Patients and families often rely on lay literature and peers' advice for support. Thus, it is important for the primary care clinician to proactively become an additional resource for information and counseling.

AD progression is a continuum that may vary between patients. However, counseling for patients and their families may be most effective if it is based on three general disease stages.

DURING THE EARLY STAGE

The first (mild) stage of AD generally lasts two to four years. Among the signs and symptoms (which may be mistaken for manifestations of aging) are loss of recent memory, inability to retain new information, subtle personality changes (including abandonment of interests and activities, and increasing stubbornness), and difficulty communicating. . Depression is common and may be the presenting symptom; first-time depression in a patient older than 65 should be investigated as possible dementia. Patients begin to lack judgment and insight.

After diagnosis, the patient and family need straightforward information about the disease and the cognitive and functional changes to expect with each stage. Patients should be discouraged from driving, as even mild cognitive deficits are associated with increased risk of accidents.

Families will benefit from a list of community resources. The Alzheimer's Association, for example, offers invaluable information about support groups, respite care, individual and family counseling, and other services that can help ease the caregiver's physical, emotional, and financial concerns. The National Institute on Aging funds nearly 30 hospital and university based AD centers in the United States.

Patients and family caregivers also need information and advice about available medical treatments. Although medications approved to treat AD are expensive, their early use is an important means of prolonging the first stage–and preserving the patient's ability to participate in creating an advance directive and making other important decisions. Effective early treatment may also make it possible to delay institutionalization.   

Cholinesterase inhibitors have been shown to help maintain cognitive and global function and considerably slow disease progression in patients with mild to moderate impairment. Nonsteroidal anti-inflammatory drugs and estrogen may confer protection against AD in long-term users, but they have not been shown to be effective treatments.

At each contact, patients should be evaluated for depression. Short-term treatment with selective serotonin reuptake inhibitors that have limited anticholinergic effects (eg, citalopram, sertraline) may be indicated for AD patients with depression. The family should be told to watch for and report symptoms such as apathy, irritability, refusal to eat, and weight loss, with the understanding that these may simply be symptoms of the dementia itself.

Caregivers should be reminded that attending to the patient's comorbid conditions can help slow the progression of disability and maintain function. Hypertension, diabetes, congestive heart failure, chronic obstructive pulmonary disease, arthritis, genitourinary conditions, and hypothyroidism are common concerns, as are vision and hearing impairment.

Additional Considerations

Early attention to the patient's environment is important (ie, consistency and structure, safety, moderate stimulation, and contrasting colors). Familiar items, including photographs and souvenirs, and orientation cues, such as clocks and calendars, can help stimulate memory and cognition. Some patients benefit from therapy using music, art, exercise, or pets, reminiscence therapy, and psychotherapy (emotion-oriented, supportive, and/or interpersonal).

The earliest stage of AD is an ideal time to broach the subject of advance care planning with the patient in the presence of the family or caregiver. More than one study has found that patients with early dementia can participate in completing advance directives. Considerations should include use of artificial nutrition and hydration, hospitalization, antibiotic use, and do-not-resuscitate orders.

THE MIDDLE STAGE

The moderate second stage of AD may last from two to 10 years. Patients require full-time supervision because of increasing confusion, declining ability to care for themselves, wandering tendencies, belligerence, and, for many, psychotic episodes. Communication skills continue to decline and delusions, agitation, and paranoia are common.   

As symptoms progress, many caregivers begin to think about placing their loved ones in a long-term care facility. Behavioral strategies and appropriate pharmacologic management (discussed below) may help to delay this step. Families should be made aware of the available adult day care and community-based programs. They should also be directed to contact the Alzheimer's Association or the appropriate constituent unit of the National Council on Aging for information on financial resources.

Practical Coping Strategies

A safe, predictable environment and a consistent daily routine are the mainstay of managing potentially troublesome behaviors and the starting point for all other interventions. (15) Safety measures include removing throw rugs and other obstructions over which patients may trip, and securing medicine, firearms, keys, toxic substances, and dangerous tools and utensils.  Also, caregivers should be taught specific techniques to maintain optimal communication with the patient, such as those outlined by the Alzheimer's Association.
Apathy–manifested as loss of interest, poor persistence, blunted emotions, and lack of social interaction–may occur in 90% or more of AD patients.   Apathetic patients may be mistaken as lazy or resistant, because they seem to expect others to initiate activities they themselves are still capable of performing. Functioning may be improved by regular exercise, increased social stimulation, prompt encouragement to begin activities, a structured activity routine, and use of visual cues to expected behaviors.  

About 90% of patients also experience psychiatric manifestations, particularly behavioral disturbances.  These include agitation (aggressiveness, combativeness, repetitious questioning, shouting, cursing, disinhibition) and wandering).  The caregiver should look for physical or environmental stressors–such as pain or discomfort, anxiety, lack of sleep, noise, clutter, and presence of large numbers of people–that may be triggering or exacerbating the behavior, and these should be removed wherever possible. Caregivers can calm the patient better with an easygoing attitude than by challenging him or her.

Spending time outside with the patient when the weather permits, incorporating exercise into the patient's daily routine, and limiting the patient's caffeine intake are ways caregivers can help the patient avoid sleeplessness. A regular sleep schedule should be maintained, with naps limited to 30 minutes and use of the bed restricted to sleep only.

Specific caregiving activities can be a common source of agitation. Bathing, which the patient may begin to find frightening and confusing, should occur when the patient is usually calmest. Urinary incontinence may be avoided by frequently scheduled or prompted visits to the bathroom. Patients should be encouraged to dress themselves, as long as they are able (with sufficient time allowed), and assisted if necessary. Clothing should be easy to put on and remove (eg, no zippers or buttons).

Wandering is a significant problem because it can be persistent and is inherently dangerous. Yet ambulation is considered an important factor in maintaining the AD patient's quality of life.   One strategy is to provide a controlled environment where the patient may wander safely, rather than to try to eliminate the behavior.   Wandering can be restricted by using child-proof doorknobs, mounting locks or latches higher or lower than eye level, obscuring doors with a scenic poster or curtains, and placing signs on doors with the words "stop" or "do not enter." Another effective technique is to keep outdoor clothing (symbols of departure) out of sight.

Motion detectors and remote door alarms may be helpful for caregivers. As a precaution, patients should always carry some kind of identification or wear an identification bracelet.   At-risk patients should be registered with the Alzheimer's Association's Safe Return Program (www.alz.org/ResourceCenter/Programs/SafeReturn.htm).   

The Option of Institutionalization

If the decision is made to place the patient in a long-term care facility, family members should receive full support; whatever choices meet the specific needs of the patient and others involved constitute the correct choice.  The family should also be guided to choose a facility that provides services geared toward dementia patients, such as protected wandering areas, activities to enhance cognition, programs to maintain physical function, dementia care-certified staff members, and family education programs

END-STAGE DISEASE

During the final stage of AD, which lasts one to three years, patients gradually lose motor skills (including ambulation and the ability to swallow), no longer recognize their families, cannot use or understand language, and become bedridden. Death usually results from secondary causes, often aspiration pneumonia; eating difficulties, immobility, and incontinence are risk factors for imminent death in late-stage AD.

Patients with severe dementia no longer appear to respond to therapy for cognitive impairment. Comorbid conditions should be treated conservatively to minimize short-term complications. Hospitalization for pneumonia is not advised because it may increase functional deterioration and the risk of death.

The most important area of concern for families is end-of-life care. If advance directives have not previously been put into place, families should be counseled to base decisions on what they believe the patient would want. Because the range of management choices is broad, family members may need encouragement to shoulder the responsibility of decision making. Although death is inevitable, the health care provider should help the family focus on preserving quality of life.

As life expectancy dwindles, active treatment becomes less effective and patients who do not understand such interventions may become increasingly resistant; often, too, they are unable to complain of adverse effects. Thus, optimal end-of-life care should be centered on providing maximum patient comfort rather than attempting to prolong life.4 Specifically, pain management and other palliative interventions are preferable to more aggressive treatment, such as feeding tubes, intravenous hydration, and artificial ventilation, which may only prolong the dying process.

CONCLUSION

Alzheimer's disease is a difficult journey for patients and their families. Both will need considerable support appropriate for the stages of disease progression. The primary care provider can be an invaluable source of this support.