Alzheimer's Disease: Empowering Patients and Caregivers
The number of individuals with Alzheimer's disease continues to escalate.
The number of individuals with Alzheimer’s disease continues to escalate.
Alzheimer’s disease (AD) is the most common form of dementia, accounting for an estimated 60% to 80% of dementia cases among older individuals. AD is a complex, progressive, and degenerative neurologic disease that impacts not only the patient but also loved ones and caregivers.1,2 According to the Alzheimer’s Association, the number of individuals with AD will continue to escalate as the population of those 65 years and older grows.1-5 The number of AD cases will also continue to rise as the Baby Boomer generation ages.1-5 As one of the most accessible health care professionals, the pharmacist can be an essential resource for patients with AD and their caregivers not only by providing medication information but also by increasing awareness and education about the condition itself. Moreover, pharmacists can direct patients and caregivers to available resources to aid in effectively managing and coping with this progressive disease.
While the exact cause of AD is still not fully understood, researchers have identified factors that may increase the risk for developing AD, including increasing age, genetics, environment, and lifestyle habits.1-5 Key facts and statistics about AD can be found in Online Table 1.1-7 AD is characterized by a gradual decline in cognition and behavior. As the disease progresses, patients, family members, and caregivers face many challenges regarding daily care and treatment. Although the rate of disease progression varies from patient to patient, AD typically progresses gradually over a 2- to 20-year period.8,9 The average survival rate is 8 years.8,9 Death typically results from complications related to a secondary illness such as aspiration pneumonia or cardiac failure.9 The stages of AD are classified as preclinical, mild, moderate, and severe (Online Table 2).8-12
TABLE 1: FACTS ABOUT ALZHEIMER'S DISEASE
- AD is not a normal part of the aging process.
- AD can affect all age groups; but age is the best known risk factor for AD, and the risk doubles every 5 years after age 65.
- AD is the 6th leading cause of death in the United States.
- More than 5.2 million Americans have AD, and every 67 seconds someone in the United States develops the disease
- Nearly two-thirds of patients with AD are women.
- Individuals 85 years and older are at greatest risk for AD.
- By 2050, the number of AD cases will more than double to more than 13.8 million individuals.
Adapted from references 1-7.
TABLE 2: STAGES OF ALZHEIMER'S DISEASE
Timing and Clinical Findings
- No indication of cognitive decline
- Typically lasts 2 to 4 years
- Patients may: Begin having trouble with memory and thinking Be confused and forget recent events and conversations Take longer to complete certain tasks Lose or misplace important items
- Patients may be aware of cognitive decline but deny or hide it
- Typically last 2 to 10 years
- Patients may: Become more confused and forgetful Begin to need help with daily activities and self-care such as dressing and bathing Have difficulty identifying people they know Have trouble thinking or following directions Develop poor judgment Exhibit behavioral and mood changes
Severe or late- stage AD
- Usually lasts 1 to 3 years
- Marked by very severe cognitive decline
- Patients: Lose the ability to respond to their environment Cannot communicate coherently Typically need help with day-to-day tasks May lack the ability to chew and swallow May lose control of bladder and bowel function
Adapted from references 8-12.
According to the National Institutes of Health and the Alzheimer’s Association, examples of the warning signs in AD include memory loss that disrupts daily life, difficulty completing familiar tasks, confusion regarding place and time, mood or personality changes, and frequently misplacing things.12,13 Patients and caregivers with concerns about possible AD signs or symptoms should be encouraged to seek further evaluation from their primary health care provider.
Although there is currently no cure for AD, existing pharmacologic and nonpharmacologic treatments can aid in the management of both cognitive and behavioral symptoms. In general, treatment goals focus on improving the patient’s overall quality of life, maintaining mental function, managing behavioral symptoms, and slowing or delaying symptom progression.5,9,14 Currently, only symptomatic therapies for AD are available. These therapies slow the progression of the disease and are intended to aid in enhancing a patient’s cognitive function, delay continual cognitive decline, prevent or decrease the incidence of disruptive behavior, and help the patient maintain independence and a reasonable quality of life for as long as possible.5,9,14
Acetylcholinesterase (AChE) inhibitors and N-methyl-D-aspartate (NMDA) antagonists are the 2 classes of medications approved by the FDA for treating certain cognitive symptoms of AD such as memory loss, confusion, and other mental deficits.9,14 The AChE inhibitors include donepezil hydrochloride, rivastigmine, and galantamine hydrobromide.14-18 The only NMDA antagonist available is memantine hydrochloride.14 Donepezil (Aricept, Aricept ODT) and the transdermal formulation of rivastigmine (Exelon Patch) are approved for all stages of AD.9,14,15 Oral rivastigmine (Exelon) and galantamine (Razadyne, Razadyne ER) are both approved for mild to moderate Alzheimer’s disease.9,14 Memantine (Namenda, Namenda XR) is approved for the treatment of moderate to severe AD.9,14,19 Memantine has been shown to manage the symptoms of moderate to severe Alzheimer’s disease when taken alone or in combination with donepezil.20 Beginning in January 2015, Forest Laboratories plans to discontinue the general sale and distribution of Namenda 5- and 10-mg tablets.21 The manufacturer states that this decision is not based on any safety or efficacy issue related to Namenda tablets and notes that the oral solution of Namenda as well as Namenda XR (extended-release tablets) will continue to be available.21
Sometimes, it may be necessary for physicians to prescribe antianxiety drugs, antipsychotics, and antidepressants to treat and manage specific behavioral symptoms associated with AD, such as depression, agitation, hallucinations, or sleep disturbances.9,14 Health care providers may also recommend various nonpharmacologic behavioral strategies such as creating a calm environment or providing a security item for the patient.22
Living with the Disease
While the onset of AD cannot be prevented or reversed, an early diagnosis gives patients and caregivers more time to plan for the future and to benefit from available treatments and support services. The caregiver plays a pivotal role in the management of AD, especially in the later stages of the disease. According to the Alzheimer’s Foundation, 1 to 4 family members act as caregivers for each AD patient.23 When a diagnosis of AD is made, family members and caregivers may have concerns and feel stressed and overwhelmed, and these feelings usually progress over time. AD leads to impaired cognition and memory, problems with communication, personality changes, erratic behavior, and loss of control of bodily functions; family members and caregivers should be encouraged to take advantage of available support resources to learn strategies for managing these progressive physical and mental changes. They should also prepare for the emotional and physical demands of caring for a patient with AD. Various organizations suggest the following caregiver strategies24,25:
- Take a proactive role and talk to the primary health care provider to learn more about AD and what to expect.
- Support systems are vital to handling and coping with AD, so discuss the needs of the patient with other family members and friends.
- Keep lines of communication open with primary health care providers regarding patient progress, and maintain routine checkups.
- Learn about various caregiving techniques, including communication skills, safety concerns, and managing both day-to-day activities and behavioral changes.
- Adjust your expectations, and be understanding.
- Discuss long-term care plans with family and friends, including medical, financial, and legal issues.
- When possible, participate with the patient in cognitive activities such as puzzles or memory games.
- To avoid burnout, take time out for yourself, get adequate rest, practice relaxation techniques, and eat a balanced diet.
- Ask for help when needed, and join a local or online AD support group.
- To ensure patient safety, modify the environment and patient schedules when warranted.
Role of the Pharmacist
Pharmacists can be an invaluable resource for patients with AD and their caregivers by monitoring patient profiles for potential drug interactions and contraindications. Pharmacists can also help improve clinical outcomes and increase patient compliance by suggesting the use of once-daily dosing formulations when possible. During counseling, patients and caregivers should be reminded about the proper administration of prescribed medications and the potential adverse effects associated with each (Online Table 3).9,14-19 Patients and caregivers should be reminded about the importance of medication adherence, to never discontinue medications without consulting their physician, and to report any serious adverse reactions. Pharmacists can also direct patients and their caregivers to available educational resources for AD (Online Table 4). All health care professionals, including pharmacists, can help patients and caregivers by showing empathy as they battle this disease. Although AD is irreversible and progressive, pharmacists can empower those affected by providing pertinent information for making informed decisions about drug therapy and overall quality of life. Caring for a patient with AD involves more than drug therapy; with a little encouragement and support, caregivers may find the strength to care effectively for their patients or loved ones with AD.
TABLE 3: FDA-APPROVED MEDICATIONS TO TREAT ALZHEIMER'S DISEASE
Common Adverse Effects
Aricept, Aricept ODT (donepezil)
- This drug should be taken in the evening with a full glass of water without regard to food.
- Oral disintegrating tablets should be allowed to dissolve in the mouth followed by a full glass of water.
- Immediate-release tablets should not be broken or crushed.
Nausea, vomiting, headache, diarrhea. appetite loss, insomnia
Razadyne, Razadyne ER (galantamine)
- The extended-release capsule should be administered at the same time each day, preferably in the morning with food and water.
- Other formulations should be taken twice daily with breakfast and dinner.
- The liquid formulation may be mixed in 4 oz of juice if needed.
- Patients should maintain adequate hydration unless otherwise directed.
Nausea, vomiting, diarrhea, weight loss, loss of appetite
- The patch is recommended for patients who have difficulty swallowing or those with severe nausea. The patch should be applied once daily to clean, dry, intact skin on the upper or lower back (if the patient is likely to remove it) or on the upper arm or chest, alternating positions each day.
- Capsules and oral solution should be taken in the morning and evening with meals.
Nausea, vomiting, diarrhea, weight loss, loss of appetite, muscle weakness
Namenda, Namenda XR (memantine)
- The drug should be taken at the same time each day.
- Extended-release capsules may be opened and sprinkled on applesauce but should not be divided, crushed, or chewed.
- Memantine can be given without regard to food.
- If taking the liquid form, administer the dose with a calibrated dosing device.
- The drug can be used alone or in conjunction with donepezil.
Dizziness, headache, constipation, confusion,
Adapted from references 9, 14-19.
TABLE 4: EDUCATIONAL RESOURCES FOR PATIENTS AND CAREGIVERS
Alzheimer’s Association: www.alz.org
Alzheimer’s Disease Education and Referral Center (National Institute on Aging): www.alzheimers.org
Alzheimer’s Foundation of America: www.alzfdn.org
National Institutes of Mental Health: www.nimh.nih.gov
Fisher Center for Alzheimer’s Research Foundation: www.alzinfo.org
Ms. Terrie is a clinical pharmacist and medical writer based in Haymarket, Virginia.
1. Alzheimer’s Association. 2014 Alzheimer's disease facts and figures. Alzheimers Dement. 2014;10(2):e47-e92. www.alz.org/downloads/Facts_Figures_2014.pdf. Accessed December 19, 2014.
2. Alzheimer's disease. Merck Manual Professional Edition website. www.merckmanuals.com/professional/neurologic_disorders/delirium_and_dementia/alzheimer_disease.html. Accessed December 19, 2014.
3. Preventing Alzheimer's disease: what do we know? NIH National Institute on Aging website. www.nia.nih.gov/alzheimers/publication/preventing-alzheimers-disease/risk-factors-alzheimers-disease. Accessed December 19, 2014.
4. About Alzheimer's disease: causes. NIH National Institute on Aging website. http://www.nia.nih.gov/alzheimers/topics/causes. Accessed December 19, 2014.
5. Baby boomers will drive explosion in Alzheimer's-related costs in coming decades. ScienceDaily website. www.sciencedaily.com/releases/2014/11/141111170224.htm. Accessed December 19, 2014.
6. What is Alzheimer's disease? Centers for Disease Control and Prevention website. www.cdc.gov/aging/aginginfo/alzheimers.htm. Accessed December 19, 2014.
7. Preidt R. Alzheimer's cases expected to double by 2050, researchers say. HealthDay website. http://consumer.healthday.com/cognitive-health-information-26/alzheimer-s-news-20/alzheimer-s-cases-expected-to-double-by-2050-researchers-estimate-693683.html. Accessed December 19, 2014.
8. Alzheimer's disease symptoms and stages. Bright Focus Foundation website. www.brightfocus.org/alzheimers/about/symptomsandstages.html. Accessed December 19, 2014.
9. Anderson HS. Alzheimer disease. Medscape website. http://emedicine.medscape.com/article/1134817-overview. Accessed December 19, 2014.
10. Symptoms and stages of Alzheimer’s disease. Alzheimer’s Disease Research website. www.ahaf.org/alzheimers/about/symptomsandstages.html. Accessed December 19, 2014.
11. Alzheimer's stages: how the disease progresses. Mayo Clinic website. www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448. Accessed December 19, 2014.
12. About Alzheimer's disease: symptoms. NIH National Institute on Aging website. www.nia.nih.gov/alzheimers/topics/symptoms. Accessed December 19, 2014.
13. 7 Warning signs of Alzheimer's. NIH Medline Plus website. www.nlm.nih.gov/medlineplus/magazine/issues/fall10/articles/fall10pg20-21.html. Accessed December 19, 2014.
14. Alzheimer's disease medications fact sheet. NIH National Institute on Aging. www.nia.nih.gov/alzheimers/publication/alzheimers-disease-medications-fact-sheet. Accessed December 19, 2014.
15. Aricept (donepezil hydrochloride) tablets [prescribing information]. Woodcliff Lake, NJ: Eisai Inc; 2013. www.aricept.com/docs/pdf/aricept_PI.pdf. Accessed December 19, 2014.
16. Razadyne ER (galantamine HBr) extended-release capsules [prescribing information]. Titusville, NJ: Jansen Pharmaceuticals; July 2013. www.razadyneer.com/. Accessed December 19, 2014.
17. Exelon Patch (rivastigmine) transdermal system [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals; July 2013. www.pharma.us.novartis.com/product/pi/pdf/exelonpatch.pdf. Accessed December 19, 2014.
18. Exelon (rivastigmine tartrate) tablets [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals; October 2013. www.pharma.us.novartis.com/product/pi/pdf/exelon.pdf. Accessed December 19, 2014.
19. Namenda XR (memantine hydrochloride) extended-release capsules [prescribing information]. St. Louis, MO; Forest Laboratories, Inc. September 2014. http://pi.actavis.com/data_stream.asp?product_group=1902&p=pi&language=E. Accessed December 19, 2014.
20. The benefits of Namenda XR and an AChEI. Namenda XR website. www.namendaxr.com/combination-therapy-benefits.aspx. Accessed December 19, 2014.
21. Important message [Namenda tablets to be discontinued]. Namenda website. www.namenda.com/. Accessed December 19, 2014.
22. Treatments for behavior. Alzheimer's Association website. www.alz.org/alzheimers_disease_treatments_for_behavior.asp#non-drug. Accessed December 19, 2014.
23. About Alzheimer's: statistics. Alzheimer's Foundation of America website. www.alzfdn.org/AboutAlzheimers/statistics.html. Accessed December 19, 2014.
24. Caregiver tips: strategies for success. Alzheimer's Foundation of America website. www.alzfdn.org/EducationandCare/strategiesforsuccess.html. Accessed December 19, 2014.
25. Caregiver resources. Alzheimer's.gov website. www.alzheimers.gov/caregiver_resources.html. Accessed December 19, 2014.