Evaluation and Diagnosis
Alzheimer’s disease (AD) is the most common cause of dementia in older individuals. Other common causes are vascular cognitive impairment, Dementia with Lewy Bodies (DLB) and Fronto-Temporal Lobar Degeneration (FTLD). Many other conditions may cause or contribute to dementia, including medically treatable conditions.
Evaluation is more detailed and time-consuming than screening. The clinician performing an evaluation should have a thorough knowledge of diagnoses of cognitive disorders such as Alzheimer’s disease and other types of dementia, and should also be comfortable disclosing a diagnosis of Alzheimer’s disease or other dementia to patient and family.
There are many guidelines for the evaluation of dementia. Recent guidelines for Alzheimer’s disease, Mild Cognitive Impairment (MCI) due to AD, as well as prodromal AD emphasize biomarkers for amyloid and neurodegeneration in addition to clinical evaluation. Because these biomarkers are not yet available for routine clinical use, we have emphasized clinical evaluation.
Diagnostic criteria also exist for vascular dementia, DLB, FTLD, and other disorders. An accurate diagnosis of cognitive impairment, dementia and its etiology can help to guide the patient and family regarding planning, accessing family and community resources, and appropriate use of symptomatic treatment.
An algorithm for diagnostic evaluation
An algorithm for diagnostic evaluation was created by a group of clinicians with expertise in Neurology, Geriatric Medicine and Psychiatry, representing different San Diego health care systems. The members reviewed guidelines and studies of evaluation, as well as published diagnostic criteria. The goal was to develop an outline of the elements of evaluation of dementia or cognitive loss, to help to guide clinicians and improve the quality of care.
Who should carry out an evaluation?
Physicians, Physician Assistants, Nurse Practitioners, or a clinical team member with adequate training can use the algorithm to carry out an evaluation. The clinician or team member should have a strong knowledge base concerning cognition, aging and different types of dementia, and also experience in how to disclose the diagnosis, develop a management plan, and make appropriate use of community resources.
For patients with unusual or uncommon disorders, referral to a subspecialty dementia clinic is advisable. Unusual clinical pictures, including progressive aphasia, progressive visuoperceptual impairment, apraxia; early movement disorder features, young onset of cognitive impairment (before age 65) and rapidly progressive dementia are often best evaluated in a subspecialty dementia clinic. The presence of a strong family history of dementia may often require assessment by a subspecialty clinic.
The evaluation process
An evaluation typically will consist of at least one detailed visit to obtain the necessary elements of history, examination, cognitive assessment, and to determine appropriate laboratory testing, neuroimaging and other consultation or tests as appropriate.
- Obtaining collateral history from an informant to document cognitive, functional and behavioral symptoms is strongly recommended whenever possible.
- Discussion of the results of the evaluation, disclosure of the likely diagnosis, the prognosis, and an outline of a care plan.
- Referrals and additional testing as a result of the evaluation require clinical judgment.
An evaluation can be initiated by an RN, PA or other staff trained to conduct instruments with the patient and/or caregiver. An evaluation appointment may take 45 minutes. Below are links to pdf documents to assist you.
Disclosing a Diagnosis
Once an evaluation is completed, the practitioner should be prepared to speak with the patient and caregiver or family members as a unit. Often, the disclosure of a diagnosis is the maximum amount of information the patient can handle at the first post-diagnosis appointment, and the provider may want to schedule a longer, follow-up appointment to fully orient the patient and caregivers of important first steps.
Physicians may be reluctant to disclose a specific diagnosis of dementia and to mention Alzheimer’s disease; as such a diagnosis may change the physician-patient relationship. Disclosure has been widely studied, and provided that it is done sensitively and with knowledge of the social and family dynamics, it is generally a helpful part of the process. Many families are relieved at obtaining closure regarding a diagnosis and explanation for the problems that they have noted. Disclosure should also include the review, assessment and discussion of medical, personal and social factors that may be impacted by dementia.
Initial discussion and disclosure may cover
- The primary diagnosis.
- Contributing factors to the diagnosis (e.g., medical, neurological or psychiatric factors). Examples include depression, vascular risk factors, sleep disorders, medical comorbidity that may affect the brain, medications that may have cognitive side effects.
- Recommendations regarding questions such as work, driving, managing finances.
- Personal and home safety. This may include asking about firearms or other weapons if applicable, use of kitchen appliances, home safety, medications, finances (to avoid elder abuse scams), and driving. Driving is the only safety issue where there is a legal requirement of the provider to report to another agency; in this case the DMV for their review and potential testing.
At the time of disclosure, impress upon the caregiver that the patient should not be left alone as he/she processes the information. Inform the caregiver how to reach you during this critical period. Acknowledge that the discussion carries with it significant impact as the patient and caregivers attempt to normalize their reaction and link response to expected needs.
The most critical topics to cover as soon as possible include:
- Medication options
- Primary and proven treatment options; disclose those that are evidence based and sufficiently studied, and explain these as standards of practice.
- Less well established; explain the warnings regarding research or lack thereof, the fact that these medications are chemicals whether natural or man-made.
- Driving – physician assessment of the patient’s capacity to continue to drive, and when that should be re-evaluated. Physicians have a legal obligation to report patients with diminished capacity. If uncomfortable making this disclosure, this would be an appropriate referral to a specialist.
- Finances and Legal Issues.
Other important topics to cover during the first year include
- Community resources for both the individual and caregivers
- Social resources
- Housing: home modifications, long-term care options
- Treatment of cognitive and behavioral symptoms
- Management of vascular risk factors
- Lifestyle factors such as diet, exercise, sleep, alcohol, etc.
- Discussion of caregiving and of resources
- Genetic questions (more appropriate for younger onset of dementia)
- Research options, including clinical trials
FIVE ACTION STEPS FAMILY CAREGIVERS SHOULD TAKE
- Establish legal responsibility and create legal documents that will be helpful to you and to your loved one.
- Understand the diagnostic process, symptoms, and course of memory loss and dementia.
- Care for yourself; a healthy, rested caregiver is a more effective caregiver.
- Join a support group.
- Plan for the future. Do research and know what lies ahead to plan accordingly.