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Empowered for the Dementia Caregiver Journey

Empowered for the Dementia Caregiver Journey. Suzann Ogland-Hand, PhD Joy Spahn, MPA Cathy Brady, LMSW Chris Simons, CTRS GVSU Art & Science of Aging February 8, 2013. Learning Objectives. Recognize competencies needed for those providing direct care for persons with dementia

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Empowered for the Dementia Caregiver Journey

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  1. Empowered for the Dementia Caregiver Journey Suzann Ogland-Hand, PhD Joy Spahn, MPA Cathy Brady, LMSW Chris Simons, CTRS GVSU Art & Science of Aging February 8, 2013

  2. Learning Objectives • Recognize competencies needed for those providing direct care for persons with dementia • Identify primary causes of dementia • Explain importance and benefits of early detection and assessment of dementia for persons with dementia and their family members • Locate and recommend available community-based resources for dementia diagnostic and support services

  3. Dementia Competencies • http://www.dementiacoalition.org • Knowledge & Skills for Dementia Care: A Guide for Direct Care Workers in Everyday Language (free download) • Dementia Competencies Self-Assessment Tool • Kim Curyto, PhD (585) 297-1221 • Kimberly.Curyto@va.gov

  4. Dementia Competencies • Knowledge of Dementia Disorders • Person-Centered Care • Care Interactions • Enriching the Person’s Life • Understanding Behaviors • Interacting with Families • Direct Care Worker Self-Care

  5. Knowledge of Dementia Disorder • Causes • Difference between irreversible and reversible dementia • Delirium • Brain changes • When you have met someone with dementia you have met someone with dementia

  6. Person-Centered Care • Characteristics of person-centered care • Providing comfort and security with full and meaningful life • Know the persons life story • Know how your background affects how you give care

  7. Care Interactions • Physical care that matches the needs and abilities of the person • Safety needs • Focus on strengths • Use the person’s life story • Identify and support the person’s feelings

  8. Enriching the Person’s Life • Continue activities, social life and community • Offer activities that preserve self-esteem • Intimacy, sexuality and feeling close

  9. Understanding Behaviors • A way of communicating • Recognize that what a person thinks is acceptable behavior in their reality • Learn affective responses to behaviors

  10. Interacting with Families • Understand the family relationships • Use a positive accepting approach • Recognize the family as part of the caregiving team

  11. Direct Care Worker Self-Care • Personal issues or attitudes that impact caring relationship • Methods of coping with stress • Ways of coping with grief and loss • Ways to communicate with co-workers

  12. Knowledge of Dementia Disorder • Causes • Difference between irreversible and reversible dementia • Delirium • Brain changes • When you have met someone with dementia you have met someone with dementia

  13. What is Dementia? • Dementia is not a disease, but rather a group of symptoms caused by disease, temporary illness, or a condition

  14. What is Dementia? • decline in thinking and memory • description of symptoms • does not give any explanation of cause of problems (i.e., etiology) • >24 broad categories of causes that can cause dementia

  15. Dementia is not a normal part of the aging process

  16. Reversible Dementias • Medication • Dehydration • Malnutrition/Vitamin Deficiency • Depression • Medical problems • Alcohol and drug abuse • Tumor

  17. Non-reversible Dementias • #1 Alzheimer’s Disease (AD) • #2 Vascular Dementia (VaD) • #3 Lewy-Body Dementia (LBD) • #4 Frontal Temporal Dementia (FTD) • #5 Parkinson’s Disease (PD) (Rare neurological Diseases) - Huntington’s Disease - Cruetzfeld-Jacob Disease

  18. Mild Cognitive Impairment (MCI) • Mild impairment in memory • Preservation of general cognitive function • Preserved ADL/IADL functional abilities • Absence of diagnosed dementia

  19. Knowledge of Illness: Staging Tracking Course of Decline • Global Deterioration Scale (GDS) - Reisberg • Clinical Dementia Rating Scale (CDR) – Morris, Alzheimer’s Disease Research Center, Wash U • Functional Assessment Staging (FAST) – Reisberg • Alzheimer’s Association Scale • Allen Cognitive Scales

  20. THE CLINICAL DEMENTIA RATING SCALE CDR: http://rgp.toronto.on.ca/dmcourse/toolkit/app5.htm

  21. Allen Cognitive Scales

  22. Staging Systems Time-Based (Alzheimer’s Association) Normal Early Early-Middle Late-Middle Late Performance- Based (Allen) 6.0 5.0 4.5-4.0 3.5-3.0 2.0-1.0

  23. Functional Ability • Activities of Daily Living (ADL’s) • Instrumental Activities of Daily Living

  24. Importance of Early Detection • Knowing is better than wondering • Dementia is sometimes caused by treatable conditions • Medication side effects • Nutritional deficiencies • Depression

  25. Importance of Early Detection • Early, accurate diagnosis is important in determining course of treatment • Medical and behavioral treatments may ease symptoms for individual with dementia • Other conditions that may accompany dementia (depression and anxiety) can be treated • Can improve general health and may improve mental abilities

  26. Benefits of Early Detection • Allows planning for future, together • Link to supports, services and case management, to prevent crises • Support network of family and friends • Early diagnosis gives everyone time to prepare mentally and emotionally for changes ahead

  27. How is dementia diagnosed? • Medical Exams • Physical • Neurological • Laboratory studies and neuroimaging • Neuropsychological testing • Behavioral • To determine cognitive strengths & weaknesses

  28. Seeking an Evaluation • Contact their Primary Care Physician • Consider an evaluation by an expert • Primary Care Physician • Memory Diagnostic Clinic • Neurologist • Neuropsychologist • Psychiatrist

  29. Diagnosis • Not all tests & exams are appropriate for every person • The diagnostic process requires teamwork. It can involve: • Individual • Family • Physician • Neuropsychologist • Neurologist • Social worker • Speech pathologist • Psychiatrist

  30. Memory Diagnostic Centers • St. Mary’s Hauenstein AD & Memory Disorder Clinic 616/ 685-5050 • Spectrum Health Adult Neurology 616/ 267-7104

  31. Local Diagnostic Resources • Mary Free Bed Psychology Department 616/ 242-9201 • Pine Rest Christian Mental Health Services 866/ 852-4001 Psychological Consultation Center www.PineRest.org • Alzheimer’s Association www.Alz.org 800/ 272-3900

  32. Common Intervention Types • Psycho-educational • Teach cg’s info & skills in managing dementia • Options: active participation vs. info only • Support • Unstructured • Emphasize support from members • CBT • Focus on cg emotional reactions • Teach ways to manage cg reactions • Respite/adult day care --Haley (2011)

  33. Effectiveness of Dementia Caregiver Interventions Psychosocial interventions (PI’s) for CGs improve multiple outcomes: burden, depression, well-being, ability/knowledge, & CR symptoms CBT & PI’s with active CG participation best at improving CG depression PI’s with active CG participation best at improving multiple outcomes More limited effects for support, respite Pinquart & Sörensen, 2006, as noted in Haley (2011)

  34. Effect sizes for Depression Pinquart & Sörensen, 2006, from Haley (2011)

  35. Local Resources • Area Agency on Aging of Western Michigan 616/ 456-5664 Caregiver Resource Network www.caregiverresource.net area services and information

  36. Local Resources • Alzheimer’s Association (800) 272-3900 www.Alz.org Dementia information, referral, services • Pine Rest Christian Mental Health Services 866/ 852-4001 – Psychological Consultation Center www.PineRest.org evaluation and treatment

  37. Area Resources • Pine Rest Services • Memory Screening Day – November (616/281-6382) • Neuropsychological evaluation (866/852-4001) • Outpatient counseling & medication management (866/852-4001)

  38. Area Resources • Alzheimer’s Association (800) 272-3900 • Early Stage Programs • Early-stage Support Group – support & skill building • Living with Alzheimer’s – information • Early-stage Social Engagement – support • Support groups – support • 3-part series – information • Creating Confident Caregivers – information & skill building

  39. Caregiving Classes Alzheimer’s Association of West Michigan (800) 272-3900 • Creating Confident Caregivers program • “Savvy Caregiver Curriculum” from U of MN • 12 hours of training: • Weekly class x6 weeks, 2 hours each • Skills-based psycho-education and support • Facilitated by two leaders from Alzheimer’s Association

  40. Caregiving Classes Clark Retirement Community (616) 452-1568 ext 179 • “Powerful Tools for Caregiving” • Program originated at Mather LifeWays, & collaboration with U of Illinois • 9 hour of training • 6 weeks of classes, 1½ hours/week • Typically offered 3-4 times/year

  41. Telephone Support Alzheimer’s Association of West Michigan (616) 459-4558 or (800) 272-3900 • Helpline – 800# available 24/7 • Care Partner in Touch (care consultation) • Brief phone assessment to set up action plan with follow-up phone calls • Continued support and education • Person living in community (not long-term care setting)

  42. Web-based Professional Education Alzheimer’s Association essentiALZ program • HealthCare Interactive®CARES® online • Basic & Advanced training modules • Certification available • http://www.hcinteractive.com/essentialz APA’s Family Caregiver Briefcase • Practical tools for assessment & intervention • http://www.apa.org/pi/about/publications/caregivers/index.aspx

  43. Web-based Caregiver Training iCare Project Phone: (855) 955-CARE • E-Mail: icare@photozig.com • NIA funded study (with Dolores Gallagher-Thompson & Larry Thompson at Stanford) • eStress Management Skills Training for Alzheimer’s Dementia caregivers • 8 modules of 40 minutes/each (average) over 12 weeks • Online video with option for DVD

  44. Web Resources • Family Caregiver Alliance http://www.caregiver.org • For Primary Care Providers (www.dementiacoalition.org/professionals) • PCDN Educational Modules: • Reimbursement for Dementia Care • Pharmacologic Treatment of Alzheimer's Disease • Clinical Diagnosis of Dementia • Community Resources • Dementia in Primary Care

  45. Web Resources • Michigan Dementia Coalition • www.dementiacoaltion.org • Dementia Competencies • Pine Rest: “Today magazines” (health condition library) • www.pinerest.org/resources/today/default.asp • Dementia Scaling resources • www.allencognitivelevelscreen.org

  46. Contact Information Cathy Brady, LMSW (Pine Rest Campus Clinic) 616/281-6363 x2965 (Tues & Wed) Suzann Ogland-Hand, PhD (Pine Rest NE Clinic) 616/ 222-4550 Chris Simons, CTRS (Clark Retirement Community) 616/ 452-1666 x224 Joy Spahn, MPA (Alzheimer’s Assoc Greater MI Chapter) 616/ 459-4558

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