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Patient-centered Approaches to Parkinson’s and Dementia Management

Patient-centered Approaches to Parkinson’s and Dementia Management. Struthers Parkinson’s Care Network. Joan Gardner RN BSN, Clinic Supervisor Rose Wichmann PT, Center Manager Struthers Parkinson’s Center. Parkinson’s Disease….

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Patient-centered Approaches to Parkinson’s and Dementia Management

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  1. Patient-centered Approaches to Parkinson’s and Dementia Management

  2. Struthers Parkinson’s Care Network Joan Gardner RN BSN, Clinic Supervisor Rose Wichmann PT, Center Manager Struthers Parkinson’s Center

  3. Parkinson’s Disease… • Is a chronic, progressive neurological disorder • Is caused by loss of cells in the brain, affecting production of the brain chemical dopamine, needed for smooth controlled movement. • Currently has no known cure • Impacts approx 1 in 100 over age 60, 20 in 100 over age 70 – can also impact younger individuals.

  4. Parkinson’s Disease symptoms… • Are very complex, affecting each individual differently • Cause slowness, muscle rigidity, tremor and changes in posture/balance • Often affect mood, producing depression and/or anxiety • Can affect thinking (attention, slowness in processing, visual perceptual deficits, confusion, dementia and hallucinations • Also impact bowel/bladder function, skin changes, swallowing, voice volume, handwriting, and many other body systems.

  5. Parkinson’s Disease Management • Medications • Rehab therapies • Surgery • Complementary medicine • Education • Support • Carepartner Respite

  6. The Complexities of PD… • Loss of facial expression, often misinterpreted by others • Difficulty following directions • Feeling hurried or rushed makes symptoms worse • Motor fluctuations can develop • Medications must be given on time, every time • All medications have potential side effects • Symptoms impact all aspects of daily life

  7. Nursing home placement in PD • PD patients end up in a nursing home earlier than reference subjects (RR=6.67;p<0.001) Parashos, et al. Mayo Clin Proc, 2002, 77:918-25.

  8. Long Term Care Costs for PD: The Economic Burden Vossius C, Nilsen OB, Larsen JP. Parkinson’s disease and nursing home placement: the economic impact of the need for care. Eur J Neurol 2009;16(2):194-200. • Study conducted in Norway (similar in population make up to state of Minnesota) • Patients with PD caused a 4.8 times higher cost for nursing home placement.

  9. Struthers Parkinson’s Center • Part of Park Nicollet Health Services/Health Partners • Designated a Center of Excellence of the National Parkinson Foundation • Provides medical, research, education and support services throughout a five state regional service area. • Nationally recognized for its interdisciplinary team approach to PD management. • Works with individuals/families living with Parkinson’s disease throughout the continuum of care.

  10. Struthers Parkinson’s Care Network(SPCN) is a response …. • to multiple requests from families • to needs expressed by interested agencies • to broadly recognized concerns for management of complex Parkinson’s and related movement disorders

  11. Struthers Parkinson’s Care Network designed to … • build partnerships with community-based programs and service institutions throughout our service area • provide assess to a high quality Parkinson’s care for persons whose lives are affected by Parkinson’s near their home • develop a sustainable chronic care model for individuals and families living with PD and related movement disorders in residential facilities and home care

  12. Framework for SPCN Care Network Pilot Program • Facility selection through an application process • “Site champion” training- key leaders for implementation • TULIPS program training for all direct care staff. • Continuing education for professionals • Support group • Document the impact of the program • Satisfaction surveys for people with PD & families • Quarterly conference calls with SPC staff • Data collection to share outcomes

  13. SPCN Pilot Sites • Greater Minnesota: • Bethesda Heritage and Pleasant View, Willmar • Birchwood House/Prairie River Home Care, Hutchinson • Knute Nelson, Alexandria • Twin Cities metro area: • Lyngblomsten, St. Paul • Parkinson’s Specialty Care (multiple metro locations) • Walker Methodist Care Suites, Edina

  14. SPCN funding: • Bremer Foundation • Pharma- sponsored educational grants • Park Nicollet Foundation • Site participation fee

  15. Requirements for Pilot Sites • Retain at least one site champion through pilot year • 80% or more of the full staff complete core TULIPS training • 60% of direct care providers - 2 additional modules • Continuing education for professionals • - nurses, social workers & rehab professionals • Demonstrate evidence of facility initiative to • ensure “pills on time” • track and minimize falls • Sponsor a support group and provide a facilitator • Host one site visit and one end of year summary visit

  16. Results to date: • 1,293 staff from all six sites have completed TULIPS core training • 780 direct care staff have completed 4 additional PD educational modules • Each site has sent 4 nurses, 2 Rehab therapists and one social worker for additional PD training specific to their discipline • Each site has established/maintained a Parkinson’s disease support group • All sites are seeking continued network involvement after the one year pilot program concludes Aug 2013.

  17. Currently accepting applications for new sites seeking network involvement – to begin October 2013 For more information or to request an application, contact: Struthers Parkinson’s Center 1-888-993-5495 wichmr@parknicollet.com

  18. Patient-centeredApproaches- Dementia Management • Sara McCumber, MS, RN, CNP, CNS Assistant Professor The College of St. Scholastica Nurse Practitioner, Essentia Duluth Clinic Neurology

  19. Case Study -88 year old female on memory care unit with Alzheimer’s dementia. -Daily at 3 pm wanting to leave facility to get her children. Worried about her children being okay. -She paces, exit seeking, anxious, fretting, restless, resistive to redirection.

  20. Dementia Behaviors • Behaviors as an expression of an unmet need. • Behaviors may be a due to a lowered stress threshold. • Behaviors can be expression of previous life patterns and preferences.

  21. Prevalence of Behaviors • Up to 16 million older adults with dementia by 2050. • Most older adults with dementia cared for in community. • Ranges up to 48% of older adults.

  22. Consequences • Increased health services utilization. • Caregiver distress • Decreased quality of life

  23. Anti-psychotics-Black Box Warning • Increased Mortality in Elderly Patients with Dementia-Related Psychosis – Elderly patients with dementia related psychosis treated with atypical antipsychoticdrugsare at an increased risk of death compared to placebo.

  24. Non-Drug Treatments First Line • 1) Drug Tx at most modestly effective • 2) Risks of drugs • 3) Do not effectively some of most distressing behaviors to caregivers.

  25. AGITATION or ANXIETY • What does this really describe? • Can include following: • Physical aggression • Physical non-aggression • Verbal aggression • Verbal non-aggression

  26. Describe the behavior-don’t label • Hitting, pushing, throwing things, pacing, trying to get to a different place, temper outbursts, constant requests for attention

  27. PLST Care Planning • Problem-solving requiresgood documentation! (Smith, 2005) • Demanding? In what way? • Disoriented? To time? Place? Or person? • Delusional? What about? What did she say? Do?

  28. PLST: Care Planning (Smith, 2005) • Evaluate Care • Sleep patterns • Weight • Food & fluid intake • Incidents and outbursts • How often? • How long? • How severe? • Medication use

  29. ABC’s of Behavior • A= antecedent • B=behavior, describe in detail what happened. • C=consequences, what happened after the behavior.

  30. Needs Driven Behavior • Pain, hunger, thirst, need to urinate or have bm, fear, lack of stimulation, fatigue

  31. Increased anxiety Night awakening Catastrophic behaviors Sundowning syndrome Purposeful wandering Confusion, agitation Combative behavior Diminished reserve Resistance PLST Behaviors More likely to occur as stress increases (Smith, 2005)

  32. PLST: Sources of Stress • Fatigue • Multiple competing stimuli • Noise, confusion • Television, radio, public address • Too many people • Too many things going on at once • Eating dinner • Taking medications • Meal-time entertainment (Smith, 2005)

  33. PLST: Sources of Stress • Demands that exceed abilities • Decisions that are too complex • Tasks that are outside abilities • Negative and restrictive feedback • “Don’t do that!” • “Your parents are dead” • “But this IS your house” • “No, you’re not going to work” (Smith, 2005)

  34. PLST: Care Planning Goal • GOAL - To act like a “prosthetic device” that supports the person do what what he/she is able to do • Interventions serve like memory “crutch” that fills in for lost abilities • Supports person to be autonomous in spite of lost abilities • Keeps stress at manageable level throughout the day (Smith, 2005)

  35. PLST: Care Planning Goal Normal Stress Threshold Dysfunctional Behavior Lowered Stress Threshold Anxious Behavior P.M. A.M.

  36. INTERVENTIONS • PREVENTION is truly “the best medicine” in dementia care!! • Keep stress at a manageable level • Use person-centered approaches (Smith, 2005).

  37. Interventions • Person-Centered care: Think about the person “behind the disease” • Lifelong habits, preferences, coping methods • Long-standing personality • Personal history • Life experiences • Personal strengths, abilities, resources

  38. PLST: Care Planning • Provide unconditional POSITIVE REGARD • Use 1:1 communication, gentle touch • Eliminate “you are wrong” messages • Distract vs. confront • Simplify communication • Use Validation vs. Reality orientation • Don’t confront hallucinations or delusions

  39. Approaches • Reduce environmental stress • Adjust approaches • Adjust routines • Allow for PLST

  40. Communication • Simplify Message • Simplify Style • Pay attention to non-verbal messages

  41. Communication • Last,AVOID “You are wrong” messages • No, you’re not going to work today. • No, you can’t visit your father. He’s dead. • No, this is your home now. • No, that isn’t yours. Put it back. • No, you can’t go now. • No, we just talked about that!

  42. Case Study -88 year old female on memory care unit with Alzheimer’s dementia. -Daily at 3 pm wanting to leave facility to get her children. Worried about her children being okay. -She paces, exit seeking, anxious, fretting, restless, resistive to redirection.

  43. References • Gitlin, L.N., Kales, H.C. & Lyketsos, C. G. (2012). Non-pharmacological management of behavioral symptoms of dementia. JAMA, 308 (19), 2020-2029. • Maslow, K. (2012). Translating innovation to impact: Evidence-based interventions to support people with Alzheimer’s disease and their caregivers at home and in the community. Washington, DC: Institute of Medicine.

  44. References • McGoniga-Kenney, M. L. & Schutter, D. L. (2004). Evidence-Based Practice Guideline: Non-Pharmacologic Management of Agitated Behaviors in Persons with Alzheimer Disease and Other Chronic Dementing Conditions. The University of Iowa Gerontological Nursing Interventions Research Center. • Smith, M. (2005). When You Forget That You Forgot: Recognizing and Managing Alzheimer’s Type Dementia, Part II. Retrieved from http://www.nursing.uiowa.edu/hartford/geriatric-training-when-you-forget2

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