PD ExpertBriefings: Caring for a Person with Late Stage Parkinson s Led By: Joan Gardner, R.N., B.S.N. and Rose Wichmann, P.T. To hear the session live on: Tuesday, November 22, 2011 at 1:00 PM EDT. DIAL: 1 (888) 272-8710 and enter the passcode 6323567#. To also view the session live on the computer by visiting: http://www.pdf.org/parkinson_briefing_caring_latestage If you have any questions, please contact Megan Girvalo at mgirvalo@pdf.org or at (212) 923-4700
PD ExpertBriefing: Caring for A Person with Late Stage Parkinson s Disease Presented By: Joan Gardner, R.N., B.S.N. Rose Wichmann, P.T. Struthers Parkinson s Center Park Nicollet Health Services Minneapolis, MN Tuesday, November 22, 2011 at 1:00 PM ET
Welcoming Remarks Robin Elliott Executive Director Parkinson s Disease Foundation
What is Late Stage Parkinson s? Hoehn and Yahr Stages 4 and 5 Individuals experiencing significant physical and/or cognitive changes Individuals requiring consistent monitoring and assistance with daily tasks and care
Outline of Today s Session Coping with physical changes Coping with cognitive changes Creating a safe and comfortable environment Maintaining care partner health
Physical Changes in Late Stage PD Immobility: Increasing stiffness and rigidity make cares difficult. Ensure exercise/rom remains part of the daily routine. Skin Changes: Reduced ability to change position may be coupled with incontinence, nutritional deficits, and weight loss to produce redness, skin tears, or pressure points.
Physical Changes in Late Stage PD Increasing Falls: Frequent reason for ER visits and hospital admissions. Pain: May occur due to fall injuries, increased muscle rigidity, difficulty with position change, or other medical conditions. Exercise, analgesics, heat, massage and/or physical therapy may be helpful.
Physical Changes in Late Stage PD Bowel and Bladder: Encourage fluids and fiber, use pads, set a regular toileting schedule. Oral Hygiene: Use an electric toothbrush twice daily using toothpaste that contains baking soda or peroxide. If not able to brush, use a swab to clean around teeth and within the mouth.
Physical Changes in Late Stage PD Dysphagia (Difficulty swallowing): May require changes in consistencies of foods and liquids. Allow enough time between bites while eating, give medications in applesauce. (check with your doctor before crushing)
Cognitive Changes in Late Stage PD Bradyphrenia (slowness of thought) Give the gift of time Reduce distractions and verbal clutter Be consistent automatic is broken Visual-Perceptual changes Give cues (taped lines on floor, mark arm rest of chair to help with reaching, etc)
Cognitive Changes in Late Stage PD Hallucinations or delusions Assure them they are safe Best not to argue Changes in Personality or Behavior Divert attention to distract from the situation Speak in reassuring tones, minimize background noise Try not to get angry or take things personally
Cognitive Changes in Late Stage PD Confusion and dementia Set up a daily routine, continue important rituals Keep items in consistent places Repeat instructions through the day Maintain dignity, offer choice
Creating a Safe Environment Maintain wide open walking paths: Remove clutter, throw rugs, coffee tables, plant stands, magazine racks and other trip hazards. Install appropriate safety equipment: Grab bars, elevated toilet seat, shower bench. Know your limits: Have a back up plan for assistance if someone falls.
Create a Soothing Environment Use warm colors, soft fabrics Surround yourselves with objects that are meaningful Bring nature indoors Use favorite music Fill a room with a pleasing fragrance
Maintaining Care partner Health Stay strong and flexible! Minimize care partner injury risk through regular exercise. Learn proper methods for assisting someone out of a chair, the car, the bed, the toilet and off the floor. Use a transfer belt, pivot disc or mechanical lift if needed. Seek a referral to a physical or occupational therapist for training.
Take Care of Yourself! Keep yourself organized-create lists and prioritize activities Rest when you can Arrange for planned time away Reduce unrealistic expectations Enjoy each other each day Journaling may help you to understand your feelings
Summary There is no perfect plan Expect ups and downs along the way Be prepared through advance planning Ask questions! Seek help when needed Build and use your health care team Schedule needed respite
Resources Family Caregiver Alliance www.caregiver.org Managing Advanced Parkinson Disease http://www3.parkinson.org/site/docserver/ Managing_Advanced_PD.pdf? docid=190&jservsessionidr004=7u2uq9s9u1.app337 aparkinson.org National Family Caregivers Association http://www.nfcacares.org National Parkinson Foundation www.parkinson.org Parkinson Disease Foundation http://www.pdf.org
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