People diagnosed with Alzheimer s disease (AD)

Transcription

1 EASING THE BURDEN: THE ROLE OF THE PHARMACIST Diane Crutchfield, PharmD, CGP, FASCP * ABSTRACT People diagnosed with Alzheimer s disease (AD) and their family members who are also often the caregivers are left reeling from the diagnosis and the conflicting emotions of how to proceed with the remainder of their lives. Pharmacists in various healthcare settings in the community, hospitals, managed care, and longterm care play a critical role as providers of patient education and sources of information on a wide range of issues. Importantly, they also serve to reinforce the messages from other members of the healthcare team. For patients with AD, their families, and caregivers, there is a wealth of available supportive information and community resources. This article describes some of the most widely used educational resources for patients with AD and caregivers, and through the use of 2 case studies, illustrates the skills that a pharmacist needs to effectively manage a patient with AD. Pharmacists offer a unique and more global perspective as they manage the patient s medication profile (including use of alternative and overthe-counter products), providing an insight that other members of the healthcare team may not have. As such, pharmacists should be prepared to understand the educational needs of patients with AD and their caregivers and to provide information or direct them to the appropriate information source. (Adv Stud Pharm. 2005;2(7): ) *President, Pharmacy Consulting Care, Knoxville, Tennessee. Address correspondence to: Diane Crutchfield, PharmD, CGP, FASCP, President, Pharmacy Consulting Care, 1223 Eagle Nest Lane, Knoxville, TN dcrutchfield@tds.net People diagnosed with Alzheimer s disease (AD) and their family members who are also often the caregivers are left reeling from the diagnosis and the conflicting emotions of how to proceed with the remainder of their lives. As patients and family members learn more about the short-term and long-term prognosis for AD, the sense of shock can prohibit a complete understanding of the disease process, therapeutic alternatives, and necessary planning for the future. However, simply giving a name to the frightening and frustrating symptoms of memory loss starts the process of dealing with the disease and removing the sense of isolation, confusion, and anger. Pharmacists in various healthcare settings in the community, hospitals, managed care, and long-term care play a critical role as providers of patient education and sources of information on a wide range of issues. Importantly, they also serve to reinforce messages from other members of the healthcare team, which often require repeated discussion during the traumatic adjustment to life with this neurodegenerative and fatal disease. There is a wealth of supportive information and community resources available to patients with AD, their families, and caregivers. The pharmacist interacting with these patients and caregivers is best served by identifying the local community resources and having this information on hand, tailored to the patient population in each local community or healthcare setting. THE ALZHEIMER S ASSOCIATION The Alzheimer s Association ( is 1 of 2 leading support organizations for patients with AD and their families. Founded in 1980, it is a not-forprofit volunteer organization, consisting of a national network of chapters, with programs tailored to the communities they serve. Thus, the range and type of programs varies from chapter to chapter, and may include assistance to persons with AD who live alone, rural and/or multicultural outreach, care coordination services, and training programs for families and profes- 272 Vol. 2, No. 7 November 2005

2 sionals. Typical programs consist of a Web site, telephone helpline, support groups, and patient education. For those individuals without easy access to the Internet, the telephone helplines provide emotional support to the caller, information about AD (and related disorders), chapter services, and updated information on community resources (eg, home care, adult day care, care coordination, assisted living, skilled nursing facilities, eldercare lawyers, financial planners, and transportation). The helpline personnel can also help patients with AD and families determine whether a specific care provider can meet their individual needs. Support groups are also often available through local chapters. Although not every patient or family member may be interested in joining a support group, many find them to be a source of refuge, a sounding board, or a source of practical information for living with the disease. Support groups may be peer or professionally led; specialized groups for children, individuals with early onset or early stage AD, adult caregivers, and other groups with specific needs are also often available. Local chapters maintain a vast cache of educational materials (brochures, videos, audiotapes, and books) on topics related to AD and other memory disorders. Topics include basic information about AD/dementia, diagnosis, treatment options, and an index of current clinical trials for AD treatments. Caregiver information, such as communication techniques, home safety tips, choosing a residential care setting, fact sheets on Medicare (discount cards, benefits, fee-for-service, hospice, non Medicare-covered costs, and contacts for Medicare centers), experiences of other caregivers, and activity programming is also available. A regular newsletter is available on-line and via mail. Much of this information can be found on the general Web site or can be mailed to family members or patients free of charge. All of the information is produced by the national Alzheimer s Association. The Alzheimer s Association offers educational programs targeted to healthcare and social services professionals, including some with continuing education or continuing medical education credit. Customized speaking engagements can also be arranged for the general public to raise awareness and provide information on the disease. The patient and family should place themselves on the Alzheimer s Association mailing list, but the pharmacist should also have a list of local support group meetings and the local chapter s contact information. Pharmacists may want to be on the mailing list for the CASE STUDY THE COMMUNITY PHARMACIST Mrs C and her husband have been filling their prescriptions at the local pharmacy for the past 35 years. Mrs C, age 72 years, is a retired legal secretary; Mr C is a retired electrician. They have been married for 51 years and have 4 grown children and 9 grandchildren. They have lived in their home for the past 48 years. Today Mrs C is getting a prescription filled for her husband for donepezil (5 mg/day). The pharmacist asks her if she has any questions about the medication, to which she absentmindedly replies no. As she lingers, putting the medication in her purse, the pharmacist asks if her husband has problems with his memory. With a look of relief, she answers yes, he was diagnosed with Alzheimer s disease (AD), and begins to describe the traumatic events of the past year her husband s 2 car accidents (although no one was injured), his forgetting how to balance his checkbook, and his forgetting the names of friends they have had for 20 years. As they continue their conversation, the pharmacist attempts to again ascertain if Mrs C has any questions about donepezil or AD in general. The pharmacist again confirms the prescription, So, I see Mr C will now be taking donepezil. Let s review his other medications. The pharmacist looks up Mr C s prescription record and reviews his medications with Mrs C a good opportunity to ensure that records are up to date and that Mr C is taking the medication correctly. Mrs C asks if the donepezil will affect his other medications. The pharmacist assures Mrs C that her husband s medications are appropriate and notifies her of potential side effects to monitor with the donepezil. The pharmacist reviews Mrs C s medication insurance coverage with her. She has Medicare supplemental drug coverage through her husband s former company, which covers donepezil as a first-tier drug. She asks about other medications that can help with AD, and the pharmacist describes to her the 2 other cholinesterase inhibitors, and the possibility of adding memantine to the drug regimen, if the physician deems appropriate. The pharmacist also asks Mrs C to describe what she knows about AD and what to expect in the months ahead. In doing so, the phar- (continued on page 275) Advanced Studies in Pharmacy 273

3 chapter to stay current with the association s local events and activities, and may consider hosting or speaking at a support group or chapter meeting. THE ALZHEIMER S DISEASE EDUCATION AND REFERRAL CENTER The Alzheimer s Disease Education and Referral (ADEAR) Center is another in-depth, on-line information venue for patients with AD and caregivers ( It was created in 1990 by the National Institute on Aging (one of the National Institutes of Health). As with the Alzheimer s Association, it offers information on AD/dementia, home safety, legal and financial issues, an AD clinical trials database, infor- Table 1. Resources for Patients with Alzheimer s Disease and Families/Caregivers Alzheimer s Association 225 N. Michigan Avenue, Floor 17 Chicago, IL P: (800) P: (312) Fax: (312) Myths Safe Return Program Alzheimer s Disease Education and Referral Center (ADEAR) ADEAR Center PO Box 8250 Silver Spring, MD P: (800) AD Centers Alzheimer s Research Forum 600 Beaver Street Waltham, MA P: (781) Fax: (781) Alzheimer s Resources Penn State University Gerontology Center 405 Marion Place University Park, PA P: (814) Fax: (814) Alzheimer s Society of Canada 20 Eglinton Avenue West, Suite 1200 Toronto, ON M4R 1K8 P: (416) info@alzheimer.ca American Association of Retired Persons 601 E Street NW Washington, DC P: (888) American Health Assistance Foundation Gateway Center Drive Clarksburg, MD P: (800) P: (301) Fax: (301) ClinicalTrials.gov 8600 Rockville Pike Bethesda, MD P: (888) P: (301) Fax: (301) Cognitive Neurology and Alzheimer s Disease Center Northwestern University Feinberg School of Medicine 320 East Superior Chicago, IL P: (312) Fax: (312) CNADC-Admin@northwestern.edu Eldercare Locator P: (800) Family Caregiver Alliance 690 Market Street, Suite 600 San Francisco, CA P: (415) National Adult Day Services Association 2519 Connecticut Avenue NW Washington, DC P: (800) Fax: (202) info@nadsa.org National Alliance for Caregiving 4720 Montgomery Lane, 5th Floor Bethesda, MD National Family Caregivers Association Connecticut Avenue, #500 Kensington, MD P: (800) National Institute of Neurological Disease and Stroke: Alzheimer s Disease Information Page NIH Neurological Institute PO Box 5801 Bethesda, MD P: (800) P: (301) National Respite Locator Service Chapel Hill Training-Outreach Project, Inc. 800 Eastowne Drive, Suite 105 Chapel Hill, NC P: (919) Fax: (919) TDD: (919) The Alzheimer s Store th Court North Jupiter, FL P: (800) P: (561) Fax: (561) cs@alzstore.com The American Red Cross developed a training program for family caregivers that covers the following topics: Home safety General caregiving skills Positioning and helping your loved one move Assisting with personal care Healthy eating Caring for the caregiver Legal and financial issues Caring for a loved one with Alzheimer s disease or dementia Caring for a loved one with HIV/AIDS US Administration on Aging (AoA) Washington, DC P: (202) Vol. 2, No. 7 November 2005

4 mation for children and teenagers with a relative suffering from AD/dementia, Spanish language resources, and referral to local resources and centers that specialize in AD research and diagnosis. In addition, it provides information and advice on choosing long-term care services, driving, caregiving, and coping. The educational materials can be found on-line or ordered free of charge by phone for delivery by mail. ADEAR also offers information for healthcare professionals, such as training materials, literature database searches, guidelines, and a newsletter. The Alzheimer s Disease Education and Referral Center and the Alzheimer s Association provide research grants and support research into AD causes and treatments. ADEAR and the Alzheimer s Association are not affiliated or associated with each other. Table 2. Pharmacist s Checklist for Providing Care to Patients with Alzheimer s Disease and Their Caregivers Know your setting Policies and procedures* Members of the care team Available resources Understand the target population Age and gender Number of residents* Medical and medication history Identify the needs of your population and setting Education Community resources Integrate your skills to define your role Medication expert Certifications Certified geriatric pharmacist Board-certified psychiatric pharmacist Identify your resources Alzheimer s Association Safe Return ADEAR Support groups Collaborate to optimize patient outcomes Work with local agencies on aging to assist caregivers and patients in making use of additional services Document and communicate recommendations and outcomes Obtain patient consent to provide recommendations to the primary care provider *Relates to long-term care facilities. ADEAR = Alzheimer s Disease Education and Referral Center. Adapted with permission from Brandt. ElderCare. 2005;5: THE ALZHEIMER S ASSOCIATION SAFE RETURN PROGRAM Wandering is one of the biggest challenges a caregiver can face. The Alzheimer s Association reports that up to 60% of patients with AD wander, and for those patients not found within 24 hours, up to 50% risk serious injury or death. 1 For this reason, the Alzheimer s Association has created the Safe Return Program, which works with local law enforcement to return wandering patients with AD to their homes when they are found. Upon enrollment, Safe Return (continued from page 273) macist is helping to reinforce the information she has received to ensure that it is understood and to fill in any gaps of information that may exist. The pharmacist also asks Mrs C if she has contacted the Alzheimer s Association. The pharmacist hands her one of their brochures, and suggests contacting them, explaining the types of services the association provides, beyond moral support. DISCUSSION By taking advantage of their long-standing acquaintance, the pharmacist initiated a conversation with Mrs C, answering some of her questions and allaying her concerns about her newly diagnosed husband. In a community pharmacy setting, patients may be less willing to directly ask questions about a particular condition or disease, but the pharmacist is in a unique position to answer questions, provide information, and consider a more comprehensive view of the patient in terms of their overall drug profile. The potential for drug interactions with Mr C s other medications is most likely only one of Mrs C s many concerns and questions, some of which she may have forgotten to ask the doctor or may have forgotten the answers to as she processes the large amount of new information that comes with a diagnosis of AD in a loved one. Many older adults and patients with AD may be taking some of the more popular nutraceuticals (eg, Ginkgo biloba), thus the pharmacist should use his or her expertise in prescription and nonprescription medications to answer questions and look for potential drug-drug interactions. Pharmacists can work with the primary care provider to simplify the patient s medication regimens, which helps to reduce the risk of exacerbating cognitive and other behavioral symptoms. Advanced Studies in Pharmacy 275

5 faxes the enrolled person s information and photo to local law enforcement. When the person is found, a citizen or law official calls the 800 number on the identification products and Safe Return notifies listed contacts. Enrollment in the Safe Return Program also includes identification products, such as a bracelet, necklace, or iron-on clothing labels for the patient, a caregiver checklist, wallet card, refrigerator magnet, stickers, and other program identifiers. The application is available in several different languages. Enrollment currently costs $40 ( ALZHEIMER S DISEASE CENTERS AND OTHER RESOURCES The National Institute on Aging funds AD Centers at major medical institutions. They are located in Alabama, Arizona, Arkansas, California, Georgia, Illinois, Indiana, Kentucky, Maryland, Massachusetts, Michigan Minnesota, Missouri, New York, North Carolina, Ohio, Oregon, Pennsylvania, Texas, and Washington. Contact information for each site can be found on the ADEAR Web site ( org/adcdir.htm). Many AD Centers offer diagnosis and medical management, information about the disease, services and resources, and opportunities to participate in drug trials, support groups, clinical research projects, and other special programs for patients and their families. A list of useful resources for families dealing with AD is provided in Table 1. STRATEGIES FOR PROVIDING COUNSELING AND PSYCHOSOCIAL SUPPORT For patients and families facing the realities of life with AD, the pharmacist acts as a medication provider and information source. Pharmacists can help caregivers understand the course of AD and what to expect, reinforcing messages from physicians and nurses. How is this accomplished? In the community, pharmacists can use the opportunity while filling a prescription to ask the patient or caregiver if they have any questions. In long-term care facilities, a pharmacist can educate the nursing staff on medications for cognitive and behavioral symptoms, and may be asked by the nursing staff to answer family members questions. The case studies presented here illustrate the pharmacist s role in each of these settings. Pharmacists should stay informed not only on the most recent clinical or pharmacologic advances in AD research (including current clinical trials on AD treatments [ but also on what the gen- CASE STUDY THE LONG-TERM CARE PHARMACIST Eleanor was recently admitted to a long-term care facility. She is a 70-year-old widow diagnosed with Alzheimer s disease (AD). Currently, she is staged as severe AD, with a Mini-Mental State Examination score of 9. She had been living with her adult daughter, Anne, and Anne s family; Anne took a leave of absence from her position as a schoolteacher to care for Eleanor fulltime. The family decided to admit Eleanor to the facility because she became incontinent, started wandering, and has become hostile toward one of Anne s teenage daughters, shouting obscenities at her and slapping her when she tried to help Eleanor with her meal. Anne and her family felt that they were losing control of Eleanor s care, and they were frightened and unsure of how to handle these recent, drastic changes. Eleanor has been in the facility for approximately 10 days, and her behavior has stabilized. Anne is concerned because, although Eleanor appears to have settled into her new environment, she recognizes Anne only intermittently. She asks the nurse if any of the AD drugs she sees advertised on television can help her mother to recognize Anne and her family. The nurse suggests that Anne speak with the pharmacist about her mother s medications. The pharmacist explains that Eleanor may or may not benefit from a cholinesterase inhibitor and/or memantine because of the severity of AD. However, it is possible that Eleanor s memory can be stimulated. Together, the pharmacist, nurse, and Anne discuss a plan for Anne to be more involved in Eleanor s care, thus reminding Eleanor of who Anne is and helping Anne to adjust to Eleanor s continuing cognitive decline. The pharmacist suggests that Anne create photo albums containing pictures of her mother from earlier years and hang pictures of Anne and her family in Eleanor s room. Anne can bring in some of her mother s favorite clothes to wear, in addition to Eleanor s favorite music from when she was a newlywed. Eleanor used to enjoy doing cross stitch, thus Anne and her daughter can do crafts with Eleanor that include thread or yarn. Anne will also read to her mother from some of her favorite books. DISCUSSION In this situation, the pharmacist s role expands to a more integrative position, in which the clinical symp- (continued on page 277) 276 Vol. 2, No. 7 November 2005

6 (continued from page 276) toms of AD are considered in the context of the medication options. The pharmacist can work with the nursing staff, who become familiar with the patient on a more personal and detailed level, to construct a multifaceted and comprehensive treatment plan, which addresses not only the patient s needs but also the family s. In this situation, Anne is making an abrupt adjustment from her mother s full-time caregiver and daughter to her mother s visitor, and her mother frequently does not recognize her. Although some may expect that releasing the patient to full-time care may offer much needed respite and relief to the caregiver, many caregivers (especially spouses) experience tremendous anxiety and depression with this decision, stemming from guilt at relinquishing the care of the their loved one to strangers and the acceptance of a permanent step closer to death. Schulz et al showed that caregivers who institutionalize their relative report depressive symptoms and anxiety levels as high as they were while in-home caregivers, especially in those who were married to the patient. 1 Depression and anxiety were also more common in caregivers who visited more frequently and were less satisfied with the help they received from friends, neighbors and other family members. 1 The importance of maintaining a continued frequent role for the caregiver after nursing home placement cannot be overstated. Although some may visit to help offset inadequate care for the patient (perceived or real), a cooperative and open relationship between the facility staff and the patient s family is essential. In the Schulz et al study, 50% of the spousal caregivers visited the patient daily and continued to participate in the physical care of their spouses. 1 In this case, Anne s participation in Eleanor s care remains of high importance, not only for Anne but also as a source of comfort for Eleanor. The pharmacist can review Eleanor s medications with the family to ensure that everyone understands the purpose and appropriate administration of each medication, and to determine if there are ways to simplify the medication regimen. There are many ways in which Anne and her daughter can participate in Eleanor s care (as outlined by Dr Jackson-Siegal in this monograph), and the pharmacist can help to illuminate these possibilities to the nursing staff and the family. REFERENCE 1. Schulz R, Belle SH, Czaja SJ, et al. Long-term care placement of dementia patients and caregiver health and wellbeing. JAMA. 2004;292: eral public is reading and hearing about AD and dementia. The Internet and various health-related television programs, although offering useful venues for patient education, can also dispense misinformation and propagate myths about AD, especially among the less specialized programs, magazines, and Web sites (ie, those reaching a general audience). In fact, the Alzheimer s Association addresses the common myths associated with dementia ( As discussed by Brandt, there are many ways for pharmacists to provide care to patients with AD and their caregivers. 2 A checklist is provided in Table 2. These skills can be implemented across practice settings community, hospital, managed care, and longterm care. 2 The case studies in this article illustrate how these skills can be put to use. CONCLUSIONS Pharmacists can come into contact with patients with AD and their caregivers in various settings, including community pharmacies, hospitals, managed care, or long-term care facilities. Although one particular setting may have more elderly or demented patients than others, the pharmacist should always be prepared to answer questions about this increasingly common disease. Pharmacists are often in a position to play an integral role as providers or reinforcers of patient education, in addition to members of the care plan team. Pharmacists offer a unique and more glob-al perspective as they manage the patient s medication profile (including use of alternative and over-the-counter products), providing an insight that other members of the healthcare team may not have. As such, pharmacists should be prepared to understand the education needs of patients with AD and their caregivers and to provide information or direct the patient to the appropriate information source. REFERENCES 1. Alzheimer s Assocation. About wandering behavior preparing for and preventing it. Safe Return Fact Sheet. Available at: SRfactsheet.pdf. Accessed September 7, Brandt N. The role of pharmacists in managing Alzheimer s disease. ElderCare. 2005;5:5-8. Advanced Studies in Pharmacy 277