Adapting and Thriving as a Caregiver

1. Adapting and Thrivingas aCaregiver Kevin O’Neil, MD, FACP, CMD Internal Medicine and Geriatrics Chief Medical Officer Brookdale Senior Living, Inc.

2. Learning Objectives • Understand the enormous, but largely unrecognized, problem that caregiving represents in the U.S. • Be able to identify symptoms and signs in oneself and others that may indicate stress, burnout, and depression. • Outline practical strategies for a caregiver’s self-care in order to achieve peace of mind, body, and spirit.

3. Pre-Test • The percentage of the population currently over age 65 is: • 6% • 13% • Over 20% • The percentage of those over 65 had one or more chronic illnesses is • Less than 50% • 75% • 100% • Caregivers in the United States currently number • 25 million • 50 million • 75 million • The percentage of persons with dementia living in the community is: • 25% • 50% • 75% • Humor and laughter: • Interfere with proper wound healing • Promote activation of cells that fight infection and cancer • Have little or no positive physiological effects

4. Aging in America • What percentage of the U.S. population is currently over age 65? • 6% • 13% • 20%

5. Aging in America: Present • Percentage over age 65: 13% • Average life expectancy: 77 • Average life expectancy for a 65-year old: 19 years (20.3 for women; 17.4 for men) • 85+ cohort is fastest growing segment of the population. • Centenarians in 2007: 80,000 • Source: U.S. Census Bureau

6. Aging in America: FutureThe “Silver Tsunami” • By 2020, over-65 age group will comprise 20% of the population. • Average life expectancy will be in the mid-80’s within the next century. • Centenarians expected to number over 600,000 by 2050.

7. Increased Disability • 75% of people over 65 have one or more chronic health conditions. • Gains in life expectancy accompanied by greater periods of disability

8. Caregivers • Definition: anyone who provides assistance to someone who is incapacitated and needs help. • Informal caregivers: unpaid (family members and friends) • Formal caregivers: volunteer or paid caregivers associated with a service system. • Currently number 50 million • By 2020, caregivers will number 80 million

9. Caregiver Profile • 75% are female • 51% are over 50 years old • 37% are sole providers • 57% are the adult children • 6-23% are spouses • Others are other family members or friends

10. Caregivers: The Hidden Patient • Caregivers often experience stress, fatigue, and burnout • 49% of females and 31% of males experience depression as a result of caregiving • Elderly spousal caregivers have a 63% higher risk of dying than non-caregivers

11. Alzheimer’s disease • Currently over 5 million Americans • Another American diagnosed every 70 secs • 15 million by 2050 unless cure found • Another American will be diagnosed every 30 secs

12. Caring for Persons With Dementia • 75-80% of persons with dementia are cared for by family members in their homes • Most caregivers are elderly spouses or middle-aged adult children • Higher level of stress than caring for someone with other chronic illnesses

13. Caregiver Activities:The 36-Hour Day • Assistance with day-to-day activities • ADLs (bathing, eating, dressing, transfers, toilet) • IADLs (meal prep, shopping, telephone calls, money management) • Illness-related care • Managing symptoms, medical or nursing treatments, coping • Care management • Accessing resources • Navigating the health care and social services systems • Acting as an advocate. • Protective actions caregivers take to ensure safety/well-being

14. Alzheimer’s Care • Averages 70 hours per week; 62 hours by the primary caregiver • Out of pocket expenses for the 7 million boomers who provide remote care averages $5000 per month • For caregivers leaving the workforce, over $650K in forfeited salaries, benefits, and pensions

15. Risk Factors: Stress, Depression • Caregiving associated with higher levels of stress/depression and lower levels of subjective well-being and physical health • Higher levels of burden and depression if: • Female • Less educated • Spousal caregivers • Poor quality relationship with recipient • Poor preparation • Caring for recipient with dementia • Hispanic or Asian American • African American caregivers experience less stress and depression and get more rewards from caregiving than White caregivers.

16. Assessment • Modified Caregiver Strain Index (CSI) • Preparedness for Caregiving Scale • PHQ-2

17. Modified Caregiver Strain Index (CSI) • Used to quickly screen for caregiver strain with long-term family caregivers. • 13-question self-administered tool • Major domains: Employment, Financial, Physical, Social, and Time. • Identifies who may need more assessment and follow-up Available at: www.consultgerirn.org

18. Do You? • Feel like you have to do it all yourself, and that you should be doing more • Withdraw from family, friends and activities that you used to enjoy • Worry that the person you care for is safe • Feel anxious about money and healthcare decisions • Deny the impact of the disease and its effects on your family • Feel grief or sadness that your relationship with the person isn't what it used to be • Get frustrated and angry when the person with dementia continually repeats things and doesn't seem to listen • Have health problems that are taking a toll on you mentally and physically Source: Alzheimer’s Association

19. Preparedness for Caregiving Scale • Caregiver self-rated instrument that consists of eight items • Preparedness is defined as perceived readiness for multiple domains (e.g., physical care, emotional support, setting up in-home support services, and dealing with the stress of caregiving). • Responses are rated on a 5 point scale with scores ranging from 0 (not at all prepared) to 4 (very well prepared). • The scale is scored by calculating the mean of all items answered with a score range of 0 to 4. The higher the score the more prepared the caregiver feels for caregiving; the lower the score the less prepared the caregiver feels. Available at: www.consultgerirn.org

20. Patient Health Questionnaire (PHQ-2) • Over the past 2 weeks, have you often been bothered by: • Little interest or pleasure in doing things? • Feeling down, depressed, or hopeless? • If the patient responded “yes” to either question, follow-up using the PHQ-9

21. Depression • An ongoing sad or empty mood for two weeks or more or • A loss of interest in most activities for two weeks or more plus several of the following symptoms • Sleep changes (trouble sleeping or sleeping too much) • Appetite changes (down or up) • Inability to enjoy life (including sex) • Trouble with memory, concentration, or decision making • Low energy; feeling fatigued • Feeling restless, anxious, pacing, or wringing hands • Feeling sluggish; lying around all day • Crying more than usual • Feeling guilty, hopeless, helpless, like a burden • Thoughts of life isn’t worth living; hoping to die in sleep • Thoughts of committing suicide You do not have to feel sad to have major depression!

22. Tearfulness Apathy Feeling overwhelmed Yelling, swearing, blaming Relying on drugs or alcohol Eating too much or too little Worry, fear Aches and pains Decrease in memory or concentration Impatience or short temper Illness Stress Symptoms

23. Rapid pulse Hypertension Headache Dizziness Tremor Sweats Rapid breathing Skin rashes Upset stomach Bowel problems Bladder problems Physiological Effects “Fight or Flight”

25. Definition of Wellness Wellness is a multidimensional state of being describing the existence of positive health in an individual as exemplified by quality of life and a sense of well-being. --President’s Council on Physical Fitness and Sports, 2001

26. Dimensions of Wellness

27. What Do You Think? A 75-year old man cares for his wife who has Alzheimer’s disease in their own home. Because his wife needs increasing help with ADLs, the husband reluctantly decides to place her in a nursing home. Which of the following factors predicts a more successful transition for the husband after his wife enters the nursing home? A.An ambivalent marital relationship B. The husband’s anticipated loneliness after placement C. The husband’s having a sense of identity outside of his caregiving role. D. The husband’s volunteering at the nursing home at which his wife resides.

28. Get moving: Nurture your body. Take charge of your health. • Exercise on a regular basis • Get plenty of sleep. • Eat nutritious food. • Limit caffeine if it makes you more anxious • Limit alcohol • Remember to breath! Try some deep breathing exercises to relax. • Get regular physical check ups.

29. Express your feelings: Have a positive attitude. Laugh! • Humor can help you to look at things differently. • Try reframing in stressful situations. • When going through a hard time, think about what you can learn from the situation, how you may be able to help others as a result of your difficulty. • Keep a journal. • Keep physically active and socially engaged. Consider dancing, yoga, and Tai chi. • Consider meditation and spiritual practices. • Get help if you are persistently anxious or have a continually depressed mood.

30. Make a difference: Volunteer. Work. Create. • Take time to remember that your work makes a difference in someone else’s life every day. • Take scheduled breaks every day. • Keep a good work/leisure balance so you can sustain your energy. • Financial management is important to a low stress life. • Time management at work can reduce stress. • Accept offers of help. When you allow others to help you, you contribute to their purposeful dimension.

31. Get connected. Be a friend. Join a group. • Have a “ventilation system” or social outlet, someone you can talk to about your concerns that will listen and help you see things in a positive light. • Make time for your family, have regular family times like game night, movie watching or going for walks. • Enjoy your co-workers in a social way, sharing your stories and lives with each other. Having a friend at work can really help you enjoy your job. • Have realistic expectations of the people around you. Learn to be forgiving and patient with others and keep your expectations reasonable. • Support groups have been proven to reduce caregiver stress.

32. Nurture your Spirit and beliefs: Faith and Values. • Relaxation and/or meditation can bring about the “relaxation response”. • Spend time in nature. • Spend time around animals. • If you believe in God or a Higher Power, take time to pray. • Meditate • If you have a religion, take the time to practice it. • Keep a gratitude journal.

33. Be a life long learner. Be curious. Try something new. Challenge yourself. • A common cause of stress is unrealistic expectations. Expect the unexpected. • Become aware of your belief systems. They are usually subconscious but they can impact your behavior and lead to stress. • The belief that says “If you want something done right, you have to do it yourself” can lead to over work on your part. • Learn all you can about caregiving.

34. Next Steps • Start talking with your loved one about his or her wishes for future treatment and care. • Build your care team. Reach out to friends and neighbors. Have conversations about what you might need in the future. • Gather records. Find and collect in one place all of your loved one’s financial records, as well as any legal documents such as powers of attorneys and advance directives. • Start educating yourself about your loved one’s condition, available community resources, and other relevant concerns. For links to local programs, contact your local Area Agency on Aging. • Familiarize yourself with local services such as home care providers, geriatric care managers, adult day care programs, and other service providers you might eventually call upon. • Create a list of emergency contacts with all of your contact information, as well as that of doctors, services, neighbors, friends, and family who are involved in your loved one’s care. Keep copies prominently displayed at home and at work. Source: AGIS and National Family Caregivers Association.

35. Professional Caregivers • Use your team for support. • Regularly affirm your successes in enhancing each person’s quality of life. • Honor your grief when the person’s condition changes or the person dies. • Give yourself permission to do nothing or enjoy recreational pursuits. • Set and maintain appropriate boundaries with the individuals and families you serve to avoid creating unrealistic expectations and prevent burnout. • Avoid sharing your home phone number or other personal contact details (e.g. your personal email address) with the individuals and families to whom you provide care. • Seek professional support if you find that: your work interferes with your ability to take care of yourself or you are emotionally drained on a consistent basis.

36. Quiz • The percentage of the population currently over age 65 is: • 6% • 13% • Over 20% • The percentage of those over 65 had one or more chronic illnesses is • Less than 50% • 75% • 100% • Caregivers in the United States currently number • 25 million • 50 million • 75 million • The percentage of persons with dementia living in the community is: • 25% • 50% • 75% • Humor and laughter: • Interfere with proper wound healing • Promote activation of cells that fight infection and cancer • Have little or no positive physiological effects

37. Resources • Family Caregiver Alliance: • www.caregiver.org • National Family Caregivers Association: • thefamilycaregiver.org • Leeza Gibbons Memory Foundation: • www.leezasplace.org • The Thirty-Six Hour Day, Mace N. and Rabins, P., Johns Hopkins University Press • The Resilient Practitioner: Burnout prevention and self-care strategies for counselors, therapists, teachers, and health professionals, Skovolt, TM, Boston: Allyn and Bacon

38. While we may not be able to control all that happens to us, we can control what happens inside us. Benjamin Franklin