A patient’s experience in dementia care

Develop a rapport and explore knowledge, beliefs, and perceptions

Develop insight into patient and family needs

Respect autonomy: ensure meaningful involvement of the PWD by asking questions such as “What do you think caused the change in your memory and thinking?” or “What do you suspect the results of our testing might show?”

Help develop insight: explore discrepancies in knowledge and reduce gaps in understanding

Titrate information: consider background, level of knowledge, cognitive ability, and emotional readiness

Maximize comprehension using careful wording, “talk-back” approach, and written information

Provide comprehensive information including diagnosis, areas of uncertainty, expectations and treatment options, and community resources

Follow up after disclosure to review information provided, clarify goals and expectations, and reinforce linkages with community services

Explore emotional reactions

• -There might be a range of emotional responses to diagnosis

• -The PWD might have difficulty processing information and expressing emotions right away

• -Pay attention to cues and reflect back to the patient: “I imagine this is difficult news” or “You seem to be quite shocked by the news.” Silence is a common reaction to the shock of hearing the diagnosis

Respond to emotions in an empathic manner

Foster a sense of hope and meaning

Be positive, but avoid the temptation to minimize seriousness

• -Tell the PWD that many aspects of “self” and brain function are preserved until later stages

• -Encourage a proactive response to diagnosis and timely future planning but reassure the PWD that decline is rarely rapid and there is time to adapt to the illness

• -Reaffirm your commitment to ongoing care