Caring for and Educating the Caregiver

Quick Start

Caring for and Educating the Caregiver

  • Alzheimer’s is a disease that affects the entire family.

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

  • Supporting the caregiver is vitally important.

    • Listen to the caregiver

    • Educate the caregiver

    • Make sure the caregiver is taking care of his or her own health.

      • Does the caregiver have a primary care provider?

      • Would the caregiver benefit from referral to a psychotherapist?

  • Helpful books for caregivers include:

    • The Alzheimer’s Action Plan ( )

    • The 36-Hour Day ( )

    • Learning to Speak Alzheimer’s ( ).

  • Three predictable transition points where the caregiver needs help:

    • Coping with the diagnosis—understanding the nature of the disease:

      • Understanding the stage of disease

      • Prognosis: What is the disease progression?

      • Familial/genetic implications?

      • Treatment options

      • Is there resistance to the diagnosis?

      • Financial and legal planning.

    • Disease progression:

      • Accepting outside help, e.g., home health aide, homemaker, social worker

      • The Alzheimer’s Association ( ) in the United States and the Alzheimer’s Society ( ) in England, Wales, and Northern Ireland have many resources

      • Support groups can provide caregivers with great benefit.

    • Late-stage decisions

      • The decision to seek 24-hour care is not a selfish decision but one that is almost always in the best interest of the patient.

      • There is no absolute right or wrong time to make this move.

      • Because the decision to institute 24-hour care can come about with little warning, a plan should be in place.

      • Relinquishing primary caregiving does not mean the caregiver will not be involved.

      • We encourage caregivers to begin to consider how they will fill the void when they are no longer spending considerable time caregiving.

See also Chapter 25 for additional discussion of these important topics.

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 2013 caregivers spent an average of 1139 hours per year (21.9 hours per week) providing direct care—an impressive figure when compared with the average of 2000 hours per year that constitutes a full-time, 40-hour per week job ( ).

  • In 2013, 15.5 million American family members and other unpaid caregivers provided an estimated 17.7 billion hours of care, an economic contribution valued at over $220.2 billion annually ( ).

To help the families of our newly diagnosed patients we often recommend that they read a book for caregivers such as Learning to Speak Alzheimer’s ( ), The 36-Hour Day ( ), or The Alzheimer’s Action Plan ( ). In The 36-Hour Day , a classic now in its fifth 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 The Alzheimer’s Action Plan , Murali Doraiswamy, a psychiatrist, and Lisa Gwyther, a social worker, take a very pragmatic approach to diagnosis, treatment, and caregiving. In all of these books, there are topics that range from diagnosis, to 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. (In some respects the title, The 36-Hour Day, tells all.) Our goal in this conversation is fourfold:

  • 1.

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

Once the diagnosis and treatment plan is 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.

Caring for the Caregiver

Caregivers, simply by virtue of being caregivers, are at increased risk for a variety of medical and psychological problems. Caregivers have many more illnesses than non-caregiving older adults ( ). These are primarily stress-related illnesses such as headache and chronic fatigue, as well as psychological illnesses, particularly anxiety and depression. One study found that mood disorders, anxiety disorders, insomnia, substance abuse or dependence, cardiovascular disease, and rheumatoid arthritis were more common in household members of persons with Alzheimer’s disease than controls who did not live with someone with Alzheimer’s disease ( ). Caregivers frequently indicate that they feel captive, burdened, and distressed. There are several things the treating clinician can do to help, but often the most important and helpful is simply acknowledging that the caregiver may be experiencing these emotions.

  • In the course of a follow-up visit simply asking the question of the caregiver, “How are you doing?” and listening to their response may be the single most important part of the visit. Although we often cannot solve the problems they are facing, letting them know we are aware and concerned can do a world of good.

  • Referral to psychological services may be appropriate. When possible, we will take part in the initial visit between the caregiver and the therapist.

  • Being sure that the caregiver has a primary care provider. We have been struck by the number of caregivers who are so busy taking care of the patient that they neglect their own health. They frequently either ignore or try to self-treat their own medical illnesses.

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Sep 9, 2018 | Posted by in NEUROLOGY | Comments Off on Caring for and Educating the Caregiver
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