Caring for the Caregiver
W. Nathan Rawls, PharmD*
“I feel as if I’m sailing into darkness.”
Judy Dench’s portrayal of author Iris Murdoch, who had Alzheimer’s disease
In the movie Iris, Judy Dench poignantly portrays Iris Murdoch’s decline into Alzheimer’s disease (AD). We also see the sad and confusing effects of Iris’ deterioration through the eyes of Iris’ husband, as he struggles to understand the disease and cope with the loss of his lifetime partner. In fact, for every diagnosis of AD, there are at least 2 patients—the actual patient and the caregiver(s). In 1979, Fengler and Goodrich defined a family caregiver as a “hidden patient” who merits attention from a provider.1 Most caregivers of patients with AD are the spouses, who are themselves elderly. The adult daughters of patients with AD comprise the second largest group of caregivers. These women are mostly middle-aged, but also employed and married, and very often raising their own children, in addition to their caregiving responsibilities. In 2002, Schulz and Beach first showed the serious physical consequences of caregiving—a 63% increased mortality rate for spousal caregivers who report caregiving strain (after controlling for sociodemographic factors and baseline subclinical and present disease).2
This issue of Advanced Studies in Pharmacy is dedicated to educating pharmacists on the caregiving experience. Pharmacists can play a crucial role in counseling caregivers, thus we need to understand the challenges and consequences of years of caring for a patient with AD. It can be one of the most difficult responsibilities a person can take on, and yet it can be an extremely rewarding experience if the caregiver is prepared and educated on best practices and approaches. Pharmacist interactions with caregivers offer many teachable moments.
Manju Beier, PharmD, FASCP, continues this discussion of the pharmacist’s role by describing some of the major issues caregivers will face during the progression of AD. These issues can include medication management, disease progression, financial and legal considerations, Medicare/Medicaid and other social programs, and caregiving itself. She also reviews some of the most commonly used information resources for caregivers, on-line and in print. Importantly, she also discusses the more introspective and personal challenges that take place with caregiving, such as re-evaluating life goals and priorities (eg, career choices and financial considerations), and the significant psychosocial and health-related strain that accompanies caregiving.
Jeanne Jackson-Siegal, MD, based on her extensive experience as Medical Director of the Alzheimer’s Resource Center of Connecticut, describes best approaches to nonpharmacologic management of patients with AD. Dr Jackson-Siegal emphasizes that many of these strategies and techniques can be used by nonprofessional caregivers with appropriate training and education. In long-term care facilities especially, pharmacists can educate not only family caregivers but also other members of the healthcare team on how to implement nonpharmacologic practices into the everyday management of patients with dementia. She also discusses the effect of staff interactions with each other on the disposition and general well-being of the residents.
Diane Crutchfield, PharmD, CGP, FASCP, discusses the role of the pharmacist in easing the burden for caregivers and family members of patients with AD. She provides a wide range of resources for pharmacists to offer caregivers and outlines the information pharmacists should know and have on hand for caregivers. Through 2 case studies, she illustrates how pharmacists can take advantage of teachable moments to reinforce key patient education messages and provide additional information for caregivers who are very frequently overwhelmed by their responsibilities and the fear associated with their loved one’s diagnosis.
With the estimated 4.5 million patients with AD there are at least 4.5 million caregivers, many of whom are elderly, thus dealing with their own age-related health issues, or are dividing time and energy between caregiving and their own family and professional responsibilities. The toll on the healthcare system of caring for patients with AD has not yet even been estimated. By teaching caregivers how to care for themselves, pharmacists can help to ensure that patients with AD receive the best possible care while family members are able to not only help their loved ones but also to appreciate the caregiving experience.
1. Fengler AP, Goodrich N. Wives of elderly disabled men: the hidden patients. Gerontologist. 1979;19:175-183.
2. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999; 282:2215-2219.
*Clinical Pharmacy Specialist, Veterans Affairs Medical Center, Professor, Department of Pharmacy, University of Tennessee College of Pharmacy, Memphis, Tennessee.
Address correspondence to: W. Nathan Rawls, PharmD, Clinical Pharmacy Specialist, Veterans Affairs Medical Center, Professor, Department of Pharmacy, University of Tennessee College of Pharmacy, 847 Monroe Avenue, Suite 208, Memphis, TN 38163. E-mail: firstname.lastname@example.org.