AMDA Clinical Practice Guideline: Parkinson’s Disease in Assisted Living

arkinson’s disease (PD) can cause assisted living facility P residents to lose function and independence. As a result, these individuals are at high risk of expe- riencing a fall, fall-related injury, or other problems (that necessitate hos- pitalization or force them to leave their home at the ALF). In fact, a diagnosis of PD or advancement of the disease is a key reason many elderly individuals enter assisted liv- ing in the first place. To enable residents with Parkin- son’s disease to remain safely in the ALF for as long as possible and to maximize these individuals’ func- tionality and dignity, facility staff need to understand Parkinson’s signs and symptoms, the course of the disease, and how it is treated. ment) with resulting rigidity vehicle-related injury. PD contrib- This issue of ALC features a con- • Impaired postural reflexes utes to an average of nearly densed adaptation of the American 250,000 hospital discharges per Medical Directors Association’s The term “parkinsonism” refers year; and almost 10% of men and (AMDA) clinical practice guideline, to a range of conditions that include 5% of women over age 65 are Parkinson’s Disease in the Long-Term Parkinson’s disease, Parkinson-like admitted annually to a nursing facil- Care Setting, for assisted living. syndromes (including drug-induced ity with the disease. parkinsonism), and conditions that PD is characterized biologically Definition and Introduction mimic Parkinson’s disease. by a loss of dopaminergic neurons Parkinson’s disease is an age-related, While the exact incidence of PD in a region of the brain known as chronic, slowly progressive neuro- in assisted living facilities is un- the substantia nigra. Although it is degenerative disease characterized known, it is estimated that the dis- the loss of these cells that triggers clinically by the presence of at least ease affects one in 100 individuals the symptoms of PD, the disease two of three cardinal features: over age 60. In fact, among people process likely begins years before • Resting tremor age 65 and older, PD is a more symptoms appear. While the dis- • Bradykinesia (slowness of move- common cause of death than motor ease’s cause is unknown, possible

30 Assisted Living Consult July/August 2005 links to viruses and chemical-agent ly member(s) if the individual has clinician must rule out Parkinson- exposure have been suggested. PD or has shown signs or symp- like syndromes. It is important that the practition- toms that suggest PD. Evaluate the Cardinal features suggestive of PD er assume a leadership role in the resident for manifestations of PD or are: care of the resident with PD. How- parkinsonism. Evaluate current and • Tremor ever, within the context of the known previous medications that • Rigidity overall plan of care, other team may cause drug-induced parkinson- • Akinesia/bradykinesia members may help to address spe- ism, including: • Postural instability cific patient issues. For example, a • Neuroleptic agents • Gait disorder dietitian may help to address nutri- • Atypical antipsychotics tional issues and a physical thera- • Adriamycin According to one study, a diag- pist may help to address and treat • Alpha-methyldopa nosis based solely on cardinal fea- mobility problems. • Amphotericin B tures was incorrect in 25% of cases. • Benzamide (metoclopramide) Further, MRI studies have suggested Recognition • Calcium channel blockers that about one-quarter of patients Early detection of PD enables with Parkinson-like syndromes do prompt intervention with both not have PD. nonpharmacologic and pharmaco- Features that differentiate Parkinson- logic treatments that can improve like syndromes from PD include: residents’ physical and cognitive • Lack of a clinical response to function, maximize their mobility, Early detection of levodopa or a dopamine agonist and enhance their quality of life. • Lack of asymmetric motor signs ALF staff, as well as clinicians who Parkinson’s Disease • Rapid decline over several care for residents in this setting, enables prompt months to one year should know the signs and symp- intervention with both • Presence of clinically significant toms that suggest the presence of dementia early in the course or PD or parkinsonism and should nonpharmacologic and predating motor signs observe patients for any of these pharmacologic indications. treatments that can Other disease processes that may Signs and symptoms of PD be confused with PD include multi- include: enhance the resident’s ple systems atrophy, progressive • Family history of PD quality of life. supranuclear palsy, normal-pressure • History of falls hydrocephalus, and diffuse Lewy • Shuffling or unsteady gait body disease (LBD). Onset of these • Cognitive dysfunction variants is usually symmetrical, • Depressive symptoms whereas PD has a unilateral onset • Tremor, involuntary movements and progresses to involve the mid- (especially at rest) • Fluoxetine line and later the limbs. • Use of multiple medications, • Lithium Arthritis, essential tremor, depres- including psychotropic agents • Meperidine sion, and the aging process also • Bradykinesia • Pyridostigmine can be mistaken for PD. An uncer- • Mask-like facial expression • Reserpine tain diagnosis should prompt the • Vincristine clinician to consider a consultation In addition to knowing signs and from a neurologist or psychiatrist symptoms and what to do if they Assessment with PD expertise. detect any of these, staff should be Step 2. Conduct a relevant history, Step 3. Assess the physical func- familiar with the potential benefits physical examination, and mental tion of the resident with Parkin- of physical, occupational, speech, status examination to determine son’s disease. An assessment of and recreation therapy; social serv- whether the resident has Parkin- physical function is key to deter- ices; and psychological and psychi- son’s disease or parkinsonism. mining the stage of PD and identi- atric counseling interventions in Because there are no biological fying the interventions likely to be improving PD management. markers for PD, a thorough, accu- most effective. Assessments should Step 1. Has Parkinson’s disease rate history and physical examina- include the resident’s gait, balance, already been diagnosed in this tion are key to diagnosis. Although mobility, and ability to perform patient? On admission or pre- the presence of two or more of the activities of daily living (ADLs). This admission, ask the resident or fami- cardinal features suggests PD, the is particularly important in assisted

July/August 2005 Assisted Living Consult 31 living to determine the level of care Residents with PD should be • Dyskinesia: The patient may dis- and services the resident will need assessed on admission and at least play abnormal twisting or jerking to remain in his or her home. monthly thereafter for weight movements when levodopa is at Step 4. Assess the resident’s men- changes, changes in food intake, its peak effectiveness. tal, emotional, and cognitive status. appetite changes, and altered nutri- Between 20% and 40% of residents tional status. Caregivers who observe these with PD also have dementia or Step 6. Assess the resident’s func- effects should report their findings pseudodementia (depression that tional status. This should be done to the nursing supervisor, who—in presents with symptoms of de- at baseline and as clinically indicat- turn—should report them to the mentia). At the same time, neuro- ed, for example, when significant practitioner. psychiatric symptoms in PD resem- changes occur in the resident’s abil- Step 8. Assess the patient’s risk ble signs and symptoms of demen- ity to perform ADLs or when for developing comorbidities and tia; and memory impairment is an comorbid disease is present. complications and need for special- early symptom of PD-associated Step 7. Have the resident’s med- ty consultation. Major complications dementia. ication use assessed. This assess- that may require additional assess- It is essential that the mental sta- ment can help identify drug- ment are altered nutritional status, tus and cognition of residents with induced parkinsonisms and other infections, pressure ulcers, aspira- PD are assessed at baseline and at medication-related problems. Falls tion pneumonia, falls, contractures, regular intervals as clinically indi- altered mental status, depression, cated. The use of the Mini-Mental dementia, psychosis, and new onset State Examination (MMSE) is rec- of urinary or fecal incontinence or ommended in this population. impaction. Step 5. Assess the resident for Step 9. Ensure that the practition- signs of dysphagia and altered er has summarized the PD resi- nutritional status. Staff, caregivers, A multifaceted dent’s condition in the medical and family members should be approach to treating records. This summary should help alerted to the fact that swallowing identify necessary treatments and difficulty may occur as PD pro- Parkinson’s Disease services to keep the resident safe gresses and educated to watch for involves addressing the and at maximum functioning for as signs of such problems, including: resident’s spiritual, long as possible. • Coughing, clearing throat when social, emotional, and eating or drinking Treatment • “Wet” or “gurgly” vocal quality cultural needs, as well A multifaceted approach to treating during meals as his or her physical PD is essential. This involves • Difficulty with chewing addressing the resident’s spiritual, • Pocketing food in mouth needs. social, emotional, and cultural • Difficulty keeping food or liquid needs as well as his or her physical in mouth needs. The implementation of a • Decreased food consumption care plan may involve the interac- • Slow eating tion of clinicians, caregivers, family • Nasal regurgitation members, facility staff, and resi- • Difficulty swallowing pills or changes in functional status may dents themselves. • Patient complaints of having indicate a need for medication Step 10. Develop an individual- food “stuck in throat” adjustment or medications. Care- ized care plan. Development of the • Drooling givers should receive education to care plan should be coordinated by enable them to recognize certain the nursing staff, with oversight The practitioner should consider effects of the drug levodopa: from the practitioner and with input the possible causes of coughing • “Wearing-off” effect: The from the patient or family member and swallowing difficulty, including patient’s response to levodopa as feasible and appropriate. Key medication side effects, postural may become progressively short- components of the care plan should drainage, and gastroesophageal er over time, resulting in a be documented clearly in the prac- reflux disease. When indicated in marked, predictable decline in titioner’s orders. It is also impor- the presence of such signs and function before the next dose is tant that information about the symptoms, the speech-language administered. A more-frequent patient’s condition and the pro- pathologist should be asked to per- dosing regimen can compensate posed care plan are communicated form a dysphagia evaluation. for this effect. to caregivers and family members.

32 Assisted Living Consult July/August 2005 Step 11. Implement appropriate acute confusional states or cause or cialty consultations may not be nonpharmacologic interventions. contribute to cognitive dysfunction. appropriate for all ALF residents. Residents with PD may benefit Step 13. Implement nutritional It is important to consider the resi- from nonpharmacologic interven- interventions as necessary. A daily dent’s cognitive and functional sta- tions that include physical/occupa- multivitamin should be considered tus, severity of disease, expressed tional therapy, speech therapy, for all older adults, whether or not preferences, and life expectancy dietary therapy, and recreational they suffer from PD. However, oth- when determining whether to seek therapy. Incorporating such inter- er vitamin therapies and dietary consultation. ventions into residents’ daily lives supplements (eg, vitamin C, vitamin Artificial feeding methods may can enable these individuals to E, beta carotene, selenium, coen- be clinically appropriate for certain continue to socialize and partici- zyme Q-10) have not been clinical- individuals with PD when swallow- pate in leisure interests and other ly validated. This information ing problems become severe. activities. In many cases, nonphar- should be shared with residents When a resident is deemed to macologic interventions can reduce and their families, and intake of a need artificial feeding interven- the need for drug therapy. Addi- daily multivitamin should be tions, the facility will need to tionally, several studies have docu- encouraged. decide whether it is in the individ- mented the potential value of exer- At the same time, caregivers and ual’s best interest to be transferred cise for treating PD. family members should be alerted to a nursing facility or other setting Step 12. Implement appropriate on a temporary or permanent pharmacologic interventions. basis. This decision should be dis- Because of the narrow risk/benefit cussed in detail with the resident ratio of PD medications, pharma- and/or his or her family. cotherapy for PD residents should Step 15. Consider referring the be initiated only after nonpharma- resident to community resources or cologic therapy alone has failed Preventing further for palliative care. Consider refer- and should be combined with non- decline in an ring the resident or his or her fami- pharmacologic treatments. individual’s level ly to PD support groups and to Levodopa combined with car- hospice care where appropriate. A bidopa has long been the gold of functioning consultation with social services, a standard for treating PD. However, with Parkinson’s review of community resources, long-term use of levodopa is asso- Disease and assessment of the resident’s ciated with motor complications. spiritual needs may be useful as the Involuntary movements (dyskine- may not always PD progresses. A list of agencies sias) are among the most disabling be a realistic and organizations that offer support of these complications. Patients therapeutic goal. for PD patients and family members treated with dopamine agonist is offered in Table 1. monotherapy experience a lower Any significant decline in the incidence of dyskinesia as com- resident’s clinical status should pared with residents who receive prompt his or her practitioner and levodopa monotherapy. facility staff to discuss the resident’s Dopamine agonists are consid- preferences with family members ered an appropriate first-line thera- to watch for any chewing difficul- and to review the individual’s py for older residents who have ties or dental caries in residents that advance directives. normal physical and cognitive func- may require a dental referral. A tion. On the other hand, levodopa dietary consultation also may be Monitoring may be preferable for patients over useful. Because PD is a progressive disor- age 70, especially those with de- Step 14. Work with the resident’s der, residents with the disease must mentia. These individuals are at practitioner and other clinicians to be reassessed regularly and when higher risk for side effects from manage complications and comor- there is a significant change in a dopamine agonists, including con- bidities associated with Parkinson’s resident’s condition. fusion, hallucinations, hypotension, disease and obtain specialty consul- It is important to note that nausea and vomiting, and daytime tation if appropriate. The nature of because of the progressive nature sedation. Anticholinergic medica- the complication or comorbidity will of PD, preventing further decline in tions should be used with caution determine the appropriate interven- an individual’s level of functioning in patients with dementia and the tions and right specialists to call. may not always be a realistic thera- very old because they may provoke It is important to note that spe- peutic goal. Periodic reappraisal of

July/August 2005 Assisted Living Consult 33 therapy goals is essential to ongo- ing care. Regular reassessments also Table 1. should address whether it is safe Organizations Offering Support for Residents with PD and appropriate for the resident to and their Families stay in the ALF and, if not, what American Parkinson’s Disease Association, Inc. care, services, or interventions may 1250 Hylan Blvd., Suite 4B enable the individual to stay in his Staten Island, NY 10305 or her home. 800/223-2732 Step 16. Monitor the resident’s [email protected] ability to communicate and carry The Bachmann-Straus Dystonia and Parkinson Foundation out ADLs. As PD progresses, sec- Mount Sinai Medical Center 1 Gustave L. Levy Place, Box 1490 ondary manifestations—such as New York, NY 10029 dementia, sleep disturbances, and 212/241-5614 pain—become more disabling. It is www.dystonia-parkinsons.org important that residents be watched European Parkinson Foundation Inc. for changes in physical function, 1504 NW Ninth Ave., Bob Hope Rd. perhaps suggesting a need for Miami, FL 33136-1494 800/433-7022 physical or occupational therapy, www.parkinson.org restorative nursing, assistive de- vices, and/or other interventions to The Parkinson’s Disease Foundation 710 West 158th Street maximize independence. It also is New York, NY 10032 important to check the resident’s 800/457-6676 ability to communicate basic needs, www.parkinsons-foundation.org wants, and ideas. Work with practi- The Michael J. Fox Foundation for Parkinson’s Research tioners, physical therapists, and oth- 840 3rd St. er consultants to determine the pos- Santa Rosa, CA 95404 707/544-1994 sible benefit of appropriate assistive www.michaeljfox.org devices. Step 17. Monitor other elements. The Parkinson Foundation of Canada 4211 Yonge Street, Suite 316 To keep residents with PD as func- Toronto, Canada, M2P 2A9 tional, independent, and safe as 416/227-9700 possible, there are several other www.parkinson.ca elements of life and care that clini- We Move cians, ALF staff, and family mem- 204 West 84th St., 3rd Floor bers should monitor. These include New York, NY 10024 the resident’s: www.wemove.org • Cognitive, mental, and emotional status • Nutritional status and ability to tioner as well as with the resident ents in late life. Many clinical mani- swallow and his or her family (or other des- festations of the disease can be • Medications (for effectiveness, ignated decision maker). It will be treated with a combination of non- adverse effects, and complica- important at this time to review the pharmacologic and drug therapies. tions) resident’s advance directives to ALFs must be prepared to identify • Appearance or progression of ensure that his or her wishes and monitor residents who are at comorbidities and complications regarding end-of-life care are high risk of the disease, those who known and respected. enter the facility with PD, and those Step 18. Monitor the need for a If it is determined at this time who develop the illness during their change in the resident’s level of that the resident needs to move to residence. Facility staff and clini- care. As the resident with PD another setting, this should be done cians caring for residents with PD becomes increasingly ill and dis- in a way that minimizes the individ- must do everything possible to keep abled, he or she may need to be ual’s stress and protects his or her PD residents safe and maximize transferred to a facility that can pro- dignity and well-being. their quality of life. They also must vide higher level of care, palliative be prepared to deal with situations care, or hospice care. It will be Summary where it is unsafe or otherwise important for staff to discuss these PD is a progressive degenerative unfeasible for the resident with PD options with the resident’s practi- brain disorder that commonly pres- to remain in this setting. ALC

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