Coping with the Stress of PD for Patients and Caregivers

1. Coping with the Stress of PDforPatients and Caregivers Donald McAleer Psy.D. ABPP Northshore Neurosciences

2. NeuropsychologicalPresentation in PD • Global functioning 5-10 points lower • Still within normal ranges • Motor impairments • Bradyphrenia (mental slowing) • Visuospatial dysfunction • Concept formation / rigidity • Verbal fluency decreases

3. Parkinson’s • 15.9 % of patients with PD show symptoms of dementia (Marder et.Al. 1991). Other studies as high as 20%. • Still unclear whether Dementia is part of the natural history of PD. Dementia often shows in age group >70.

4. Parkinson’s • Huge inter-individual differences • Speculation on multiple subtypes

5. Emotional Changes inParkinson’s • Depression is the most frequent psychological symptom • Incidence of 14.5% per year • Some argue as many as 50% develop depression • Anxiety • Hallucinations / Behavioral Changes • Lewy body

6. Emotional Changes inParkinson’s • Direct Mechanisms • Depression associated with brain / neurochemical dysfunction • inefficient cognition • Reactive mechanisms • Life changes

7. Stage 1 Denial “Its not me” Concealing Symptoms Seeks authority to deny the illness Refuses help Holding onto past life Stage 2 Resistance “It won’t get me down” Search for a cure Active in programs Reluctant to accept help Recognizes needed change in life patterns Stages of Adjustment

8. Stage 3 Affirmation “I guess I’ll face it” Accepting the loss Publicly explaining about chronic illness Learning to accept help Re-arrange life priorities Stage 4 Integration “It’s there but I go on” Lives with the illness Time and energy spent on life Accepts help when necessary – in balance Integrates lifestyle with new methods Stages of Adjustment

9. Caregiver Defined • Who are the caregivers? • More and more family members are taking on the role of caregiver • Family caregiving is oldest form of care system • Caregiving tasks may be rewarding or frustrating

10. Caregiving Defined • What does caregiving entail? • It can mean the person being cared for is living with you, somewhere near you, or even several states away • Caregiving can be a 24 hour a day, seven day a week responsibility • Needs that caregivers address can include many things • Supervision, partial to total personal and/or physical care, medication management…

11. Adjusting to Caregiving • May experience grief or loss • Personal choice • Relationship with loved one • Change in relationship with other family members • Social isolation • Loss of spontaneity • Loss of privacy • Loss of control • Ongoing cycle of grief

12. Stress of Caregiving • Caregivers are at a high risk for developing problems with distress and illness • Many neglect their own health and self-care • Potential consequences of caregiving • Financial • Emotional • Social

13. What is Coping? • Coping is the way that people respond to the problems that life presents. • Finding a way to deal with the situation and to manage the symptoms of stress that develop as a result of the situation • The coping strategies that caregivers use are an important predictor of how well people are able to adjust to the demands of caregiving and how well they are able to persevere when long-term caregiving is needed.

14. Problem-focused coping (What can I do?) Focus is on the ill loved one and the situation Trying to change the situation in an active/constructive way Try to manage or avert problem that created the stress Emotion-focused coping (How can I deal with the feelings?) Seek social support Finding positive ways to think about the situation Distance / Distract oneself from situation Try to escape or avoid problems Types of Coping

15. Patient coping Strategies • Stay active • Physically / mentally • Stay Social • Your network • Support Groups • Learn about your disease • Read • Internet • National / Local Parkinson’s groups • Physician

16. Patient coping Strategies • Be prepared • Cognitive Changes • Emotional Changes • Maintain as much control as you can • Treatments • Give the caregivers a break

17. Informational Support • About the disease • A Philosophical perspective • About current treatments • Coping strategies and hints

18. Coping- what seems to help • Being active in your care • Flexibility • Control • Be realistic • Connections • A sense of purpose • Spirituality

19. Ways to Manage Caregiver Stress • Develop goals that are accomplishable • Accepting your limitations can help to ward off burnout over time • Getting adequate education about your loved one’s illness is an important part of understanding the caregiving situation • Setting short-term goals can serve to give caregivers a sense of accomplishment

20. Ways to Manage Caregiver Stress • Try to set expectations for yourself that are reasonable • Establishing limits for yourself • Get help! • Care for yourself • Express and understand your emotions • Most frequent emotions experienced by caregivers: • Worry, guilt/remorse, isolation, weariness, anger/impatience, distress

21. Ways to Manage Stress • More about caring for yourself: • Look after your own physical health • Make time for your own needs • Involve others in care • Get family members together • Use community resources

22. Difficulties Faced in Caregiving • Loved one’s illness may lead to behavioral and emotional changes • Some of these behavioral changes can increase caregiver stress: • Yelling out • Verbal and physical aggression • Wandering • Suspiciousness, accusations • Not sleeping • Repetitive questions • Resistance to care • Impulsive or careless behavior

23. Tips for Handling Difficult Behaviors • You cannot control the other person’s behavior- You can control the way you choose to respond to the behavior • If the person begins yelling, choose to remain calm and speak in a soft, firm tone • Rather than internalizing the reason for the person’s anger (i.e., I did something wrong again) keep an external focus (i.e., He may be tired, it was a busy day). • Try to focus on the behavior rather than the personality (i.e., He’s mean).

24. Tips for Handling Difficult Behaviors • Acknowledge the person’s feelings • Ex: “You seem very upset. What can we do to change the situation?” • Be willing to listen • Ex: “What’s bothering you today?” or “You look sad. Tell me what’s on your mind.” • Try to respect requests, even if it may seem small or insignificant. • Try to find something to agree about. (Ex: You’re right. It is chilly in here.)

25. Tips for Handling Difficult Behaviors • Give the illusion of control by offering appropriate choices. • Allow the person to choose between two options for meals (chicken or fish) • Allow for a choice of clothing • Offer options for the daily schedule (Would you like to take a bath before dinner or after?)

26. Tips for Handling Difficult Behaviors • If things become overwhelming, WALK AWAY • You may need to take a few moments, count to 10, walk outside, or get a drink of water • Whatever you do during that moment, it is sometimes better to remove yourself from the situation to give yourself and the other person a chance to calm down

27. Positive Aspects to Caregiving • The caregiver may experience: • Increased self-worth • Feeling pride in the ability to meet the challenges and demands of the role • An opportunity to learn new skills • Building a closer relationship with the person being cared for • Knowing that the loved one is getting the best of care

28. Thoughts about the Daily Routine • Pleasure is an important aspect in our quality of life • Help to keep the person you are caring for connected socially • Ask others to visit • Have others make phone calls or send cards • Visitors might engage in activities- taking a walk, watching TV, play cards • The caregiver can engage in pleasurable activities with the person too • Read aloud, watch a movie, gardening, make a memory book together