ALLIED TEAM TRAINING FOR PARKINSON San Diego, 2014
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1 ALLIED TEAM TRAINING FOR PARKINSON San Diego, 2014 Late Stage Issues for Family Caregivers Julie H. Carter, RN, MN, ANP Professor of Neurology, OHSU In collaboration with: Disclosures for Julie Carter Teva: Honoraria National Parkinson Foundation 1
2 Objectives: All participants will be able to: Describe how to assess for caregiver strain. List the guiding principles of palliative care for late stage Parkinson s caregivers. Offer a systematic approach to caring for late stage caregivers. Describe how a team approach can be used in the care of late stage caregivers. Palliative Care in Parkinson s disease Bunting-Perry,L. Journal of Neuroscience Nursing (2006) 2
3 The Guiding Principle of Palliative Care for Advanced Stage PD is QOL Patient and Family Centered Care: QOL from their perspective The Team Approach Attention to providing dignity for the dependent Recognition and relief of pain Advanced Directives Symptom management Dysphagia/nutrition Fear, anxiety, and depression Dementia and hallucinations Falls Pain Pressure sores Caregiver Needs Assessment of strain and grief Knowledge of needed skills Help with decision making Coordination of services Communication Support Caregivers at Late Stage Disease Families are an integral part of health care delivery yet have increasing needs as recipients of care. They need our support 3
4 Profile of Mean Role Strain Scores at Stage 1, 2, 2.5, 3 and 4/5 of PD (Carter et. al 1998) Mean 1 Stages 4 & 5 Stage 3 Stage 2.5 Stage 2 Stage Worry Tension Frustrat Com Prob Strain-Dir Care Mismatch Expect Caregiver Role Strain Measures Econ Burden Lack of Res Global Strain Negative Outcomes of Caregiving Physical Symptoms Altered general health (ED visits, CHD risk) Increased blood pressure Sleep changes (subjective and objective) Altered immune function Poorer wound healing Altered HPA axis (elevated cortisol) Alterations in telomere physiology Psychological Symptoms Depression (Schrag2006, Aarsland1999,Lyons 2007,2009, Robinson 2009) Anxiety Grief (Carter,et. al. 2012) 4
5 Signs of Stress and Caregiver Burnout Symptoms exhausted, angry, frustrated, panic attacks, Sleep disturbance, hypochondriasis, ulcers, more colds, depression, loneliness, irritability, anxiety, resentment, sadness The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services 5
6 Assess for Caregiver Strain Multidimensional Caregiver Strain Index (MCSI) (Stull, D. Journal of Clinical Geropsychology, 1996) Description Prior Use Six Types of Strain 1. Physical Strain Questions: Social Constraints Questions: Financial Strain Questions: 8,9 4. Time Constraints Questions: 10,11 5. Interpersonal Strain Questions: CR demanding/manipulative Questions: 17,18 Scoring Range
7 Are Caregivers Experiencing Strain? Strain N=894 caregivers Range Severe % (29-53) Moderate % (20-28) Mild % (0-19) (Carter, J. Unpublished) Hidden Stress Screening Test Psychophysiologic Disorders Association Hidden Stress Screening Tool 6 questions Amount of stress Self awareness of neglect Depression Anxiety PTSD Prolonged effects of childhood stress 5 point Likert Scale 0-4 (range 0-29) 7
8 The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services Help with Decision Making and Goals of Care Listen to the patient and family about their understanding of the prognosis. Ask questions about their goals of care. Link goals with care needs. Ask about advanced directives: Referral to social work. 8
9 Advanced Directives 1. Durable Power of Attorney for Health Care (DPAHC) A named proxy to make health care decisions in the event the individual can no longer communicate. 2. Living Will Provides specific instructions on care and treatment such as DNR, pain management, hydration, and artificial nutrition. Advanced Care Directives Should be revisited! How to talk about advanced care directives. A combined living will and power of attorney that talks about personal, emotional and spiritual needs as well as medical wishes. Written with help of the American Bar Association s Commission on Law and Aging. Easy to use. Written in 26 languages & braille. (888)
10 Identified Goals of Care by Joe and Gertie Cognitive stability and comfort are goals of priority Minimize falls. Reduce risk of aspiration but maintain nutrition. Caregiver support. The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services 10
11 Determine Adequate Knowledge of Skills How to lift someone from bed, chair and floor. Walking problems and solutions. Managing hallucinations and paranoia. Helping with cognitive decline. Maintaining good nutrition and preventing aspiration. Incontinence Keeping track of medications. Managing paid caregivers. The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services 11
12 Help with Communication Express Feelings How Parkinson s disease affects communication. Effective communication with HCP Recognizing Stress Tracking Emotions: seeing triggers and patterns. 12
13 Communication Handle feelings first! Expressing emotions Counselor Other Caregivers A trusted friend Write Art Communication Communicate with the person with PD How PD changes communication. Helpful Suggestions Communicating with health care providers How to be a good observer Writing down questions Being organized 13
14 The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services Provide Support and Respite Self Awareness How to Make Connections Counseling Self care strategies Stress Reduction/Relaxation strategies 14
15 Make Connections What Kind of Support is needed? Formal Paid help Financial Help Informal Support groups Friends & Family Ask for help Counseling: Learned Optimism and CBT 15
16 Self Care: It is not a luxury Messages to Caregivers: Taking time helps you rediscover meaning and purpose in life. Taking time replenishes reserves of love. Taking time adds depth to care. Taking time improves health. Ways to do this? Track your response to pleasurable activities Exercise Relaxation techniques Spend time with positive friends Find humor Ask for help 16
17 The Guiding Principles of Palliative Care for CGs in Late Stage PD Assessment of strain and grief Help with decision making Assess knowledge of needed skills Help with Communication Support Coordination of services Coordination of Services Support in the Home/Respite If you had 4 hours to just enjoy yourself what would you do? What would it take for you to decide to hire someone to help in the home? Financial Services Housing Transitions Referral to social work colleague 17
18 Mind-Set of Healthy Caregiving: A workshop for Family Caregivers A psycho educational work shop that teaches coping skills using a cognitive behavioral format. Eight ninety-minute sessions Session content 1. Introduction of course 2. Self-Monitoring 3. Pleasant Activities 4. Stress Management 5. The CG s Challenge 6. Communication 7. Social Support 8. Summary OHSU Parkinson Center of Oregon: Mindset of Healthy Caregiving saved my life this is the first time I understood that it is okay to take care of myself I can change the way I feel I just didn t know how to do it I hated myself for being impatient this gave me strategies to change this in myself I m more compassionate to my spouse and also to myself 18
19 This Could not Happen without a Team! Additional Web Resources: National Family Caregivers Association NFCA is a grassroots organization that was created to educate, support and empower the millions of Americans who care for chronically ill, aged or disabled loved ones of all diagnoses. Family Caregiver Alliance (FCA) (800) /info@caregiver.org This organization provides information, research, education, services and advocacy for caregivers. It offers a state-by-state directory of support. CARE Caregivers Are Really Essential is a listserv dedicated to caregivers. listserv@listserv.muohio.e Parkinson's Training for Caregivers The Parkinson's Training for Caregivers project is a free online course developed to train caregivers for those with Parkinson's disease in long-term care settings. Well Spouse Association (800) / Well Spouse is a national, not-for-profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Find an online 'mentor' to get one-on-one support from a veteran caregiver, or find support groups in your state. 19
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