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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
Overview
Alzheimer’s disease
Caregiving
Conclusion
Questions
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 5th leading cause of death in people over age 65
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
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
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)
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
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
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
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
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)
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
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
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
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)
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
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
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
Costs of Caregiving
Caring for a person with dementia can be very time-consuming and challenging
Costs of caregiving can be: Physical Emotional Financial
Physical Costs
Loss of sleep and exhaustion
Health problems due to both caregiving demands and aging
Emotional Costs
Feelings of denial, anxiety, irritability, guilt, resentment, and anger
Social withdrawal from friends
Depression
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
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
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
Caregiver Tips: Get Help
Identify community resources
Seek support from family and friends
Delegate responsibilities to others
Contact the
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
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
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
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
Caregiver Coping Domains
0
50
100
150
200
250Humor
Faith
PreemptingConflict
Seeking Support
Disengaging
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
Conclusions
Caregivers can balance the costs with the rewards by using certain tips for staying knowledgeable, supported, physically and emotionally healthy, and prepared
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
Questions?
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