When the Light Fades – Identifying and Helping Dementia Caregivers Experiencing Burnout

1. When the Light Fades – Identifying and Helping Dementia Caregivers Experiencing Burnout Melora Jackson, MS, CMHT

2. Caregiver Stress & Burnout

3. Positive Outcomes Associated with Caregiving • Sense of purpose or meaning • Personal fulfillment • Renewal of religious faith • Closer personal ties

4. Behavior Challenges • Wandering • Night time activity • Aggression • Shadowing • Sundowning • Rummaging • Hoarding • Resistiveness • Disrobing

5. Care Needs • 24/7 supervision • Personal care – feeding, dressing, bathing, continence, etc. • Safety issues • Meaningful activity • Legal & financial management

6. Key Challenges for Caregivers • Recognizing that there is a medical problem • Getting a diagnosis • Enlisting help from others for the sake of respite • Dealing with behavioral disturbances • Considering nursing home placement or some other residential care option

7. Problems Sometimes Encountered with Family Members & Care Recipients • Controlling behavior • Undermining or sabotaging care • Unreasonable Demands • Bullying • Manipulative behavior • Refusal to communicate • Denial • Self-sabotage

8. Major Stressors for Family Caregivers • Ever increasing commitment of time • Psychological losses • Physical effort • Financial cost of care • Role changes & role strains; competing demands

9. Negative Outcomes Associated with Caregiving • Emotional distress (depression & anxiety) • Fatigue and poor physical health • Social isolation • Family conflict

10. Mediators of Stress • Appraisal of the situation • Coping style • Social support • Financial and environmental resources

11. Disrupted sleep patterns, including insomnia or habitually oversleeping; never feeling rested, even when the primary caregiver has managed to get a full night’s sleep; sleep troubled by disturbing dreams or nightmares. Altered eating patterns, including not being able to eat or overeating; significant weight gain or loss. Increased sugar consumption, or use of alcohol or drugs. Increased smoking or strong desire to start again after having quit. Symptoms of Caregiver Burnout

12. Symptoms of Caregiver Burnout • Frequent headaches or sudden onset of back pain; increased reliance on over-the-counter pain remedies or prescribed drugs. • Irritability. • High levels of fear or anxiety. • Impatience. • The inability to handle one or more problem or crisis.

13. Symptoms of Caregiver Burnout • Overreacting to commonplace accidents, such as dropping a glass or misplacing something. • Overreacting to criticism. • Overreacting with anger toward a spouse, child or older care recipient. • Alienation, even from those who offer relief and help. • Feeling emotional withdrawal.

14. Symptoms of Caregiver Burnout • Feeling trapped. • Thinking of disappearing or running away. • Not being able to laugh or feel joy. • Withdrawing from activities and the lives of others around the primary caregiver. • Feeling hopeless most of the time.

15. Symptoms of Caregiver Burnout • Loss of compassion. • Resenting the care recipient and/or the situation. • Neglecting or mistreating the care recipient. • Frequently feeling totally alone, even though family and friends are present.

16. Symptoms of Caregiver Burnout • Wishing simply “to have the whole thing over with.” • Playing the “if only” game; saying “if only this would happen,” or “if only this hadn’t happened.” • Loss of hope, purpose and meaning. • Thinking of suicide as a means of escape.

17. Put the Oxygen Mask on Yourself First!

18. Assessment of Burnout • Self-assessment inventories • Caregiver Burden Scale – Div. of Geriatric Medicine, Lund University, Malmo, Sweden • Caregiver Stress Self-Assessment – Dr. Steven Zarit • Caregiver Self-Assessment Questionnaire – American Medical Association • Caregiver Burden Assessment – Erie County Dept. of Senior Services, Caregiver Resource Center, Buffalo, NY

21. Advantages of Self-Assessment Tools • Can be completed by caregiver, or by interview of service provider • Questions/inventory items are easy to understand • Some have score ranges that indicate a course of action/what level of intervention may be needed • Provides instant feedback • May provide insight to caregiver

22. Use of Assessment Tools • Put results in context • Opportunity to have a more detailed discussion about needs • Provide appropriate information and resources

23. Managing & Coping Tips for Caregivers • Educate yourself about the Care receiver’s disease or condition • Practice self-care • Learn to let go • Practice stress reduction techniques • Ask for help • Go to a support group

24. Value of Support Groups • Knowing and feeling that you’re not alone • Helpful ideas & strategies from other attendees • Education • Social time • Time out • Resources • Manage stress

25. Types of Support Groups • Informal support • Friends • Church, civic organizations, clubs, etc. • Group meetings • Hospitals, churches, libraries, community agencies • Listings in newspapers, organization newsletters, hospitals/healthcare facilities, MD office, agency websites • Teleconference • Toll-free • Nationwide • Online groups • Live chat • Bulletin boards • Webinars

26. Plan ahead Take one day at a time Accept help Get enough rest and eat properly Be good to yourself Learn about available resources Develop contingency plans Make YOUR health a priority Make time for leisure Share your feelings with others Caregiver Survival Tips

27. Respite “Taking time out, away from the care of an impaired person, is one of the single most important things that you can do to make it possible for you to continue to care for someone.” - Mace & Rabins The 36 Hour Day

28. Time Management for Caregivers • Schedule Time • For yourself • For family fun • For work • For care responsibilities • Be Flexible • With schedule • With care receiver • With yourself

29. Managing Challenging Family Members • Wear the amour of patience • Listen • Separate the person from their behavior • Keep the volume of your voice low • Don’t think about it too much • Recognize they may be feeling guilty, afraid or think they’re being helpful • Remember, they are family

30. More Tips • Don’t take behaviors or hurtful statements from the person with dementia personally – remember, it’s the disease talking, not your loved one! • Understand that even when you do everything “right”, sometimes things will still go wrong and it’s not your fault

31. The next three slides have been adapted from the SAMHSA Toolkit entitled: Promoting Mental Health and Preventing Suicide: A Toolkit for Senior Living Communities http://store.samhsa.gov/product/SMA10-4515

32. Statistics • More than 5,000 senior adults die every year from suicide. • 80% are white men (Source: CDC. (2005). Web-based Inquiry Statistics Query and Reporting System (WISQARS). National Center for Inquiry Pre-vention and Control, CDC. Retrieved June 1, 2009 from http://www.cdc.gov.gov/ncipc/wisqars/default.htm)

33. Older Adults Die More Often in a Suicide Attempt Young people 100-200 attempts: 1 death Older adults 4 attempts: 1 death (Source: American Association of Suicidology. (2009). 2006 official final data. Retrieved May 14, 2009 from http://www.suicidology.org/web/guest/stats-and-tools/statistics)

34. Suicide Rates among the nation(Source: American Association of Suicidology)

35. Suicide and Suicide Attempts in Senior Living Communities • Little is known • Residents may have many risk factors for suicide • Common means: jumping from building, hanging, cutting and overdoses

36. Mississippi Department of Mental HealthSuicide Prevention in the Elderly There is an average of one suicide among the elderly every 90 minutes Warning Signs: Statements of Hopelessness Changes in eating or sleeping Increased drug use Elaborate goodbyes Rush to complete will Sudden elevated mood

37. Suicide Rates Among Persons Ages 65 yrs and Older2002-2006

38. Mississippi Department of Mental HealthSuicide Prevention in the Elderly High Risk population: Recent loss of a loved one Life-threatening illness Chronic and/or severe pain Inability to live alone Loss of independence Financial Difficulties Prevention: Caregiver support Increase individual connections Encourage positive outlook on life Facilitate a sense of purpose Positive activities reduce suicide risk Suicide Prevention Hotline 1-800-273-TALK

40. SILVER ALERT Rapid response system to notify the public about missing endangered adults with dementia or other cognitive impairments (age 18 years and older) Silver Alert activation request may be made only by a law enforcement agency, and the Bureau of Investigation of the MS Department of Public Safety

41. QUALIFICATIONS FORSILVER ALERT Missing adult, age 18 or older, who is believed to have dementia or other cognitive impairments The person is believed to be missing and in imminent danger regardless of circumstances Must be reported to local law enforcement with in the jurisdiction where person became missing.

42. Other Programs of Note • Virtual Dementia Tour ™ • Residential Treatment/Training Kit • Caregiver Kit • Medic Alert/Safe Return • Project Lifesaver • Comfort Zone – Alzheimer’s Association

45. Thank You!