Baseline Assessment

During a patient's initial visit (often during the diagnostic evaluation), you should make an assessment using tests such as the Mini-Mental State Examination (MMSE) or Physical Self-Maintenance Scale (PSMS) to establish baseline cognition and functional ability. You should also ask questions regarding behavioral symptoms, such as agitation, psychosis, anxiety, and depression to assess the patient's response to treatment. You can then compare future assessments to the baseline to track any changes in cognition, function, or behavior that may have occurred since a previous visit.

The MMSE and PSMS are often used in clinical settings because they tend to take less time to administer than some of the longer, more involved assessments. The MMSE needs to be completed by a physician or other health care professional. In some cases, the PSMS can be given to the caregiver to complete in the waiting room. Once you choose a particular assessment test, you should repeat the same test during each subsequent visit in order to compare a patient's current scores to his or her previous scores.

After a diagnosis of Alzheimer's disease is made and a treatment plan implemented, patients should return for evaluation approximately three months after the start of medication and, subsequently, twice per year.  In some cases, patients may need to return more frequently, depending on the medication prescribed. You should administer the MMSE and PSMS, or other assessment, at each visit in order to monitor improvement, stabilization, or worsening of cognitive and behavioral symptoms and to better follow the progression of the disease.

Both cognitive and behavioral symptoms of dementia tend to change as the disease progresses, so regular visits can ensure adaptation of treatment strategies to current needs. More frequent visits are often required for patients exhibiting more severe behavioral symptoms, such as depression, agitation, hallucinations, or delirium, who may be taking medications specific to those conditions.

Regular visits are also important in monitoring patients for treatable conditions that may contribute to distress, discomfort, and agitation, such as constipation, urinary tract infections, and chronic pain.

The patient's primary caregiver is an invaluable and essential source of information during follow-up visits. Patients will most likely not be reliable in assessing whether an improvement in symptoms has resulted from use of a particular medication. Moreover, since Alzheimer patients regularly have "good days" and "bad days," a clinician's evaluation in one brief visit may not be as valuable or reliable as a caregiver's report of the patient's condition over several days or weeks.

Follow-up visits should include a basic physical exam to determine if any decline in physical health has taken place and a detailed interval history obtained from the patient and his or her caregiver. The detailed history should contain information about any extraordinary disruption in the patient's daily living situation that may have occurred since the last visit, (e.g., moving into a new home, hospitalization, drastic change in routine). It is also helpful to ask the caregiver to bring in or "brown-bag" all medications the patient may be taking at the time of the visit, to determine whether existing symptoms can be attributed to side effects or interactions between prescribed and over-the-counter medication.

When assessing treatment efficacy in patients with Alzheimer's, it is important to remember that improvement may be minimal and temporary stabilization in cognitive decline is more likely. Typically, less decline is observed in the early stages of the disease, with more rapid degeneration accompanying the later stages. Regardless of treatment, the disease will continue to progress, and you should advise patients and their families to plan ahead for future treatment and care options.

As assessments are being conducted, and a treatment plan determined, explain to the patient and his or her caregiver the limitations of current medications for Alzheimer's disease. Clarify that existing treatments cannot reverse or stop the progression of Alzheimer's disease, yet they may be able to help affected individuals maintain their independence for a longer period of time and may even delay the need for professional care and institutionalization

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Medications currently approved for treatment of Alzheimer's all work primarily by inhibiting breakdown of acetylcholine, a neurotransmitter that becomes deficient in the Alzheimer brain as nerve cells degenerate and die. Although these drugs do not slow progression of the underlying disease process, they may temporarily stabilize or delay worsening of memory problems and other cognitive symptoms. But even temporary stabilization can be valuable to patients as well as to their caregivers and families.

Evaluating treatment efficacy in patients with Alzheimer's disease can be complicated, particularly because treatments may benefit several types of function. Symptoms associated with the disease are primarily cognitive, but there are often other behavioral or physical conditions, making it difficult to assess problems in one area of functioning. Symptoms also vary by individual and stage of the disease process and require diversified assessments of treatment efficacy.

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Current assessment tools are designed to evaluate several areas of function, including:

• cognition
• functional capacity
• behavior
• general physical health
• quality of life

Most assessment tools are designed to be completed either by the patient (in the early stages of disease), the caregiver, or the patient's primary health care provider. Most often, a combination of tests is needed to complete an evaluation of the patient's overall condition. Assessments given by the primary caregiver often evaluate not only the patient's condition but also the caregiver's own well-being, which can be an important factor in deciding whether a particular treatment strategy has proven beneficial.

For patients with Alzheimer's disease or a related dementia, there is no single test that can simultaneously assess all areas of functioning. The aim of such tests is to better understand the actual efficacy of treatments and to develop a comprehensive, practical assessment that can be administered quickly by a clinician. Numerous assessment tools have been developed, and several others are being studied:

Cognitive assessments

• Alzheimer's Disease Assessment Scale, cognitive subsection (ADAS-cog)
• Blessed Information-Memory-Concentration Test (BIMC)
• Clinical Dementia Rating Scale (CDR)
• Mini-Mental State Examination (MMSE)*

Cognitive assessments

• Alzheimer's Disease Assessment Scale, cognitive subsection (ADAS-cog)
• Blessed Information-Memory-Concentration Test (BIMC)
• Clinical Dementia Rating Scale (CDR)
• Mini-Mental State Examination (MMSE)*

Functional assessments

• Functional Assessment Questionnaire (FAQ)*
• Instrumental Activities of Daily Living (IADL)
• Physical Self-Maintenance Scale (PSMS)*
• Progressive Deterioration Scale (PDS)

Global assessments

• Clinical Global Impression of Change (CGIC)
• Clinical Interview-Based Impression (CIBI)
• Global Deterioration Scale (GDS)

Caregiver-based assessments

• Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD)
• Neuropsychiatric Inventory (NPI)*

*Used most often in clinical setting

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A solid relationship with the family or caregiver of a patient with Alzheimer's disease is an essential component of providing effective treatment and care. Once a treatment plan is decided upon, it is the caregiver, or another close family member, who will be responsible for timely administration of the medication and for providing accurate updates on the patient's condition and behavior. In treating Alzheimer's disease, it is common practice to include the caregiver and family. Alzheimer's affects entire families, especially as the disease progresses and affected individuals become more dependent upon their primary caregivers. Caregivers often experience feelings of depression, anxiety, stress, and helplessness that need to be assessed by a clinician. Some of these symptoms can be alleviated by appropriate treatment.

A novel approach to evaluating treatment efficacy in patients with Alzheimer's disease is to measure caregiver burden and stress, which should decrease as a direct result of good patient care and treatment. A patient who is doing well under a specific treatment regime often requires less assistance and supervision from his or her caregiver, which allows more time for caregivers to care for themselves. A few assessment tools are available for caregivers, and several others are being studied.

When working with patients, their caregivers and their families, explain that improvements may take time to become apparent and can be defined more accurately as a stabilization of symptoms versus a reversal of cognitive decline. Maintaining a positive and open relationship with caregivers can help them anticipate what may lie ahead and plan realistically for the future. As a patient's condition progresses, caregivers and families may have questions and may need additional support. Referrals to the Helpline of the New York Chapter of the Alzheimer's Association at 800.272.3900 or other health care professionals may be helpful for families who need assistance while caring for their loved ones.

For more information, visit our section on counseling caregivers and families.

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People with Alzheimer's are vulnerable to abuse by people close to them. They may also fall prey to strangers who take advantage of their cognitive impairment.

Types of Abuse:

• Physical — causing physical pain or injury
• Emotional — verbal assaults, threats of abuse, harassment, and intimidation
• Neglect — failure to provide necessities, including food, clothing, shelter, or medical care
• Confinement — restraining or isolating the person
• Financial — the misuse or withholding of the person's resources to his or her disadvantage or the advantage of someone else
• Sexual abuse — touching, fondling, or any sexual activity when the person is unable to understand, unwilling to consent, or threatened or physically forced
• Willful deprivation — willfully denying the person medication, medical care, food, shelter, or physical assistance, and thereby exposing the individual with Alzheimer's to the risk of physical, mental, or emotional harm

American Medical News (1992), vol. 35, no. 46

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Caregivers — both family and professionals — are most often the abusers of older people. In many cases, stress and frustration may provoke unintentional violent feelings in caregivers. Family caregivers may feel isolated, depressed, and resentful toward the patient as the disease progresses and may become abusive without realizing it. Other issues, such as substance abuse, emotional problems, and dependency, may also lead to mistreatment.

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To report an incident of elder abuse, call the Elder Care Locator at (800) 677-1116. For more information about elder abuse, click here to go to the site of the Administration on Aging.

© Alzheimer's Disease and Related Disorders Association, Inc.

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