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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