Table 6 Themes and Implications

CG would not choose for their loved ones to be ill, but many take on the role of caregiving willingly when needed.

A willing caregiver can be enlisted by the PCP as an active partner in the patient’s care.

There is often a long delay between symptom onset and diagnosis, and a corresponding delay in CG self-identifying their role. Memory loss is the most common initial symptom, but behavioral symptoms are often most troublesome, and often not recognized to indicate disease.

Improving CG ability to recognize and describe cognitive and behavioral symptoms, and their role as “caregiver” earlier, could prompt earlier diagnosis and information. This could be approached through public education, and PCP screening for both cognitive and behavioral symptoms.

Many CG do not distinguish medical diagnosis and treatment from symptom management and supportive care.

Effective caregiver education includes both medical and caregiving information.

Many CG attempt to obtain information from a PCP or the Internet, but get little information and are frustrated by Internet searches. CG are open to a wide variety of sources, settings, and technologies, but rely on the PCP to provide information and guide them to other sources.

Better mechanisms are needed to facilitate busy PCPs to provide information and referrals to other specific sources, including reliable Internet sites.