Caring for and Educating the Caregiver

Alzheimer’s is a disease that has effects on many more individuals than just those with the dementia. The effect of the disease on families and other caregivers is staggering.

• Approximately 70% of patients with Alzheimer’s disease are cared for at home, typically by a family member.

• In 2019 caregivers spent an average of 1139 hours/year (21.9 hours/week) providing direct care—an impressive figure when compared with the average of 2000 hours/year that constitutes a full-time, 40-hour/week job ( ).

• In 2019, 16.3 million American family members and other unpaid caregivers provided an estimated 18.6 billion hours of care, an economic contribution valued at nearly $244 billion annually ( ).

To help the families of our newly diagnosed patients we often recommend that they read a book for caregivers such as Six Steps to Managing Alzheimer’s Disease and Dementia: A Guide for Families ( ) or The 36-Hour Day ( ). In Six Steps to Managing Alzheimer’s Disease and Dementia , Andrew Budson, a neurologist (yes, same author) and Maureen O’Connor, a neuropsychologist, review a number of important topics including how to manage behavioral problems, build a care team, and plan for the future. In The 36-Hour Day , a classic now in its sixth edition, the authors, Nancy Mace, a social worker, and Peter Rabins, a psychiatrist, take a straightforward approach to many of the problems faced by Alzheimer’s disease patients and their families. In both of these books, there are topics that range from diagnosis and medical care to dealing with problems of mood and behavior. Introducing these books also allows us to discuss with the caregiver our understanding of what is perhaps one of the most difficult jobs: caring for the patient with Alzheimer’s disease or other dementia. Our goal in this conversation is 4-fold:

• 1.

  To let caregivers know that we fully understand the difficult job they are undertaking.

• 2.

  To help them understand that Alzheimer’s is a disease that affects the whole family.

• 3.

  To introduce the concept that this disease is best treated as a partnership between the patient, the caregiver, and the clinician.

• 4.

  To let caregivers know that the treatment of this disease involves treating, supporting, and educating them along with their loved one. We often tell caregivers:

Once the diagnosis and treatment plan are in place, it is likely that our staff and we will spend more time with you than with the patient. This is because we recognize that the single most important aspect of how the patient does throughout the disease is how the caregiver does.

We encourage and try to help everyone become a “four-star caregiver.” Having said this, we also recognize that some individuals are more suited to being caregivers than others. This is never presented as a criticism, but simply that individuals each have their own strengths and weaknesses. Later in this chapter we will discuss strategies for recognizing and handling this situation. If we as clinicians have learned one thing in the more than 25 years we have been caring for Alzheimer’s disease patients and their families, it is to do our best not to be judgmental.

As is common in the typical medical model, caregivers often feel that, although they are provided with adequate information and support when the diagnosis is given, support in the subsequent care may be lacking ( ). In our roles as health professionals we work to try to help the patient and caregiver throughout the entire disease process.