1. The Rewards and Costs of Caregiving to Dependent Elders with Dementia Peggye Dilworth-Anderson, Ph.D. Professor, Health Policy & Administration Director, Center for Aging and Diversity University of North Carolina at Chapel Hill

2. Overview  Alzheimer’s disease  Caregiving  Conclusion  Questions

3. Alzheimer’s Disease Facts  Most common form of dementia  Gradual and progressive decline in memory, thinking, and reasoning skills  Leads to confusion, impaired judgment, disorientation, sleep problems, and physical decline  Fatal disease that is the 5 th leading cause of death in people over age 65

4. Alzheimer’s Disease Statistics  5.1 million Americans have Alzheimer’s  In 2011, the oldest Baby Boomers will turn 65, the age at greatest risk for developing Alzheimer’s  One in eight Baby Boomers will develop Alzheimer’s  By 2050, there could be 16 million people with Alzheimer’s

5. Alzheimer’s Disease & Age  1 in 8 people over age 65 has Alzheimer’s  Most Alzheimer’s patients are over age 75  Up to 500,000 people under age 65 have Alzheimer’s disease or another form of dementia

6. The Dollars and Cents of Alzheimer’s  Direct and indirect costs of Alzheimer’s are at least $100 billion  Alzheimer’s costs American businesses $61 billion annually: $24.6 billion for health care $36.5 billion for indirect costs (e.g., lost productivity, absenteeism, worker replacement)

7. Needs of Alzheimer’s Patients  Patients need more care as the disease progresses  Care in the home helps the patient stay in familiar settings; 70% of people with Alzheimer’s live at home  Almost everyone with the disease eventually needs more care than their families can provide

8. What Is Caregiving?  Assistance provided to someone who is ill, disabled, or needs help with daily activities  Informal caregivers are unpaid family members and friends who assist with daily living  Addresses the physical, emotional, and mental needs of the care recipient

9. Caregiving Responsibilities  Shop  Provide transportation  Bathe/dress  Prepare meals/feed  Manage finances  Assist with toileting  Arrange health care  Administer medication  Maintain home  Laundry  Give emotional support

10. Caregiver Demographics  Nearly 10 million Americans provide unpaid care to someone with dementia  750,000 children assist with caregiving  29% of all caregivers care for someone with dementia  Up to 1.4 million people are long distance caregivers

11. Caregiver Profile  Often, a primary caregiver handles most of the caregiving responsibilities  ¾ of caregivers are women (mostly wives and adult daughters)  Caregivers include siblings, spouses, other relatives, and friends  Many female caregivers care for both their children and their parents (sandwich generation)

12. Caregiver Profile  Nearly 1 in 4 caregivers provide care for 40 hours or more per week  32% of caregivers maintain this commitment for more than 5 years  Almost ¼ of caregivers report their role is very stressful

13. Rewards and Costs of Caregiving Although caregiving can be physically, emotionally, and financially challenging… …it can also be a deeply rewarding experience for both the caregiver and the care recipient

14. Rewards of Caregiving  Before becoming a caregiver, most people overestimate the degree to which they will feel overwhelmed  However, once they start caregiving, nearly 80% of family caregivers find the experience emotionally rewarding

15. Rewards of Caregiving Spouses  Considered a part of the responsibility they accepted when they were married (“in sickness and in health”)  An expression of love that often draws couples closer together  Spouses may learn new tasks (e.g., wife learns to make home repairs; husband learns to cook)

16. Rewards of Caregiving Children  Feel a sense of satisfaction and fulfillment  Develop a closer relationship with their parents while providing care  Siblings may strengthen relationships as they come together to assist with caregiving

17. General Rewards of Caregiving  Opportunity to give back to family member for gifts received over a lifetime  Become role models for children in how to care for others  Friendships with other caregivers  Spiritual growth  Sense of accomplishment

18. Emotional Rewards  According to a Caring Today survey: 54% of caregivers formed a stronger bond with their care recipient 60% said the quality of their relationship improved 69% enjoyed their caregiving tasks  According to the National Alliance for Caregiving, caregivers’ biggest reward is knowing their loved one is well cared for

19. Costs of Caregiving  Caring for a person with dementia can be very time-consuming and challenging  Costs of caregiving can be: Physical Emotional Financial

20. Physical Costs  Loss of sleep and exhaustion  Health problems due to both caregiving demands and aging

21. Emotional Costs  Feelings of denial, anxiety, irritability, guilt, resentment, and anger  Social withdrawal from friends  Depression

22. Financial Costs  Leaving a job to give full-time care results in lost wages, missed opportunities to earn a higher income, and lower retirement benefits  High out-of-pocket costs to supplement inadequate health insurance coverage, nursing home fees, or paid caregivers

23. Achieving Balance Between the Rewards & Costs  Caregivers can use certain tips to balance the costs of caregiving with the rewards  This will result in a more enjoyable and rewarding caregiving experience

24. Caregiver Tips: Educate Yourself  Understand the symptoms & progression of dementia  Learn about new treatments and medications  Read or attend workshops to develop new caregiving skills

25. Caregiver Tips: Get Help  Identify community resources  Seek support from family and friends  Delegate responsibilities to others  Contact the

26. Caregiver Tips: Stay Healthy  Watch your diet, exercise, get plenty of rest  Visit your doctor regularly  Maintain a positive attitude  Give yourself credit, not guilt  Relax and manage your stress levels

27. Caregiver Tips: Plan Ahead  Keep in mind that most families will be caregivers at some point  Caregivers who know what to expect before caregiving even begins have a more rewarding experience  Consult with the care recipient to make legal and financial plans early

28. Example: Caregiver Tips in Action  “Perceiving and Giving Meaning to Dementia” Study  Focus groups with 25 African American, American Indian, and White caregiving families  Caregivers used a variety of different coping mechanisms

29. 5 Domains of Coping  Humor to minimize “negative” emotions to remain optimistic  Rely on faith by praying for strength and patience  Preempt conflict with care recipient by seeking professional intervention, appeasing CR  Seek support from formal services  Disengage from care recipient to manage negative emotions

30. Caregiver Coping Domains

31. Conclusions  As the population ages, the number of people with dementia will increase significantly as will the need for caregivers  There are a variety of costs for caregiving, but these are balanced by the rewards of caregiving

32. Conclusions  Caregivers can balance the costs with the rewards by using certain tips for staying knowledgeable, supported, physically and emotionally healthy, and prepared

33. Select Resources  Alzheimer’s Association 1-800-272-3900 www.alz.org  Family Caregiver Alliance 1-800-445-8106 www.caregiver.org  National Association for Area Agencies on Aging 1-800-677-1116 www.n4a.org

34. Questions? ?