Making a Disclosure of Alzheimer’s or Other Dementias
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.
At the time of disclosure, impress upon the caregiver that the patient should not be left alone for the first 72 hours 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. You may want to explain the stages of the grief process upon receiving a diagnosis of dementia: Denial, Anger, Bargaining, Depression, Acceptance.
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.