caregiving in the u.s. 2009 national caregiver survey gail gibson hunt national alliance for...

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Caregiving in the U.S. 2009 National Caregiver Survey Gail Gibson Hunt National Alliance for Caregiving March 15, 2010 4 th Annual Conference for Caregiving Coalitions

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Caregiving in the U.S.

2009 National Caregiver Survey

Gail Gibson HuntNational Alliance for Caregiving

March 15, 20104th Annual Conference for Caregiving

Coalitions

National Alliance for Caregiving (NAC)

Who We Are Nonprofit coalition of 40+ national organizations focused on

family caregiving issues

Established in 1996 to support family caregivers and the professionals who work with them

NAC Activities: • Conduct research and policy analysis; • Develop national programs; • Strengthen state and local coalitions; • Increase public awareness; • Work internationally

Caregiving in the U.S. – 2009 Survey

Purpose of Study: Present a portrait of family caregiving today and compare it to past portraits, building on 1997 and 2004 studies.

Conducted by NAC in collaboration with AARP and funded by the MetLife Foundation.

Methodology: Quantitative telephone interviews with 1,480 family caregivers age 18+, caring for people of any age. Over-sampling for African Americans, Hispanics, Asian Americans and people 50+.

Study Outline Continued

Expanded Study: To include caregivers of children with special needs in addition to caregivers of adults 18+

Unique Questions This Year: Technology and the use of the Internet for

information Which public policies to support caregivers would caregivers prefer?

Demographics of Caregiving65.7 million caregivers make up 29% of the US adult population and 31% of households

3.9 million care for only child recipients

48.9 million care for only adult recipients

12.9 million care for both child and adult recipientsPortrait of Caregiver:

• 48-year-old women who works and care Average of 20.4 hours of care per week for her mother for an average of 4.6 years

• 34% care for two or more people

• 86% provide care for a relative

Caregiving Details: 72% of caregivers take care of someone 50+ 14% care for an adult 18 to 49 14% care for a child under 18.

Caregivers have been in their role for an average of 4.6 years, with 3 in 10 having given care for 5 years or more (31%);

Care Recipient ConditionTop reasons stated by caregivers for recipients need for care:

12% old age 10% Alzheimer’s/confusion (plus follow-up = 32%) Other frequent mentions:

7% Cancer7% mental/emotional illness5% heart disease5% stroke

76% have long-term physical conditions. 25% have emotional or mental health problems

Caregiving Activities 58% of caregivers help with at least one

Activity of Daily Living (ADL).Most common:

• 40% - help with getting in and out of beds and chairs (up 7% since 2004)

• 32% - getting dressed• 26% - bathing or showering• 24% - getting to and from the toilet

Caregiving Activities for Children with Special NeedsCaregivers of children with special needs help their care recipients with 5.6 out of nine Caregiving Support Activities (CSAs) on average:

• 85% - monitoring the child’s condition• 84% - ensuring others know how to deal with the child• 72% - advocating on his/her behalf• 65% - performing treatments or therapies• 64% - giving medicines or injections• 63% - dealing with financial issues

Burden of Care

Care Coordination Detail:• 32% of caregivers experience a high burden of care

• 25% of caregivers find some difficulty in coordinating care

• However – 40% of caregivers of children with special needs find this coordination at least somewhat difficult

Getting Help with Caregiving 66% of caregivers say at least one other unpaid caregiver

helps their care recipient, an increase from 2004, but the survey saw a decrease in the share who receive paid help;

Older caregivers are most likely to be sole unpaid caregivers (47% vs. 30% younger caregivers);

Still - Just over half of all caregivers say they provide all or most of the unpaid care (56%), similar to 2004

Health and Stress of Caregiving17% of caregivers say their health is fair or poor compared with 13% of the general adult population.

Reported health impacted by:• Income • Race/Ethnicity• Number of years of caregiving

Emotional Stress – 31% consider their caregiving situation stressful with women more likely than men to feel high stress.

Caregiving & Work

70%

66%

12%

9%

6%

6%

3%

20%

Any of these

Go in late, leave early, take time off

Leave of absence

Reduce work hours or take less demanding job

Give up working entirely

Turn down a promotion

Lose any job benefits

Choose early retirement

Base: 2009 Caregivers who worked while caregiving(n=1,033)

Percentage Experiencing Each Impact

70%

66%

12%

9%

6%

6%

3%

20%

Any of these

Go in late, leave early, take time off

Leave of absence

Reduce work hours or take less demanding job

Give up working entirely

Turn down a promotion

Lose any job benefits

Choose early retirement

Base: 2009 Caregivers who worked while caregiving(n=1,033)

Percentage Experiencing Each Impact

69%*62%

65%*57%

18%17%

9%10%

7%6%

5%4%

4%5%

Caregivers of Recipient Age 18+

3%3%

2004(n=937)

2009(n=917)

69%*62%

65%*57%

18%17%

9%10%

7%6%

5%4%

4%5%

Caregivers of Recipient Age 18+

3%3%

2004(n=937)

2009(n=917)

Need for Caregiving Information 78% of caregivers feel they need more help or information

about caregiving topics (up 10% from 2004) and the need for information increased with the age of the recipient and the level of burden

Top Sources of information – • 36% - health or caregiving provider• 25% - internet (related to household income)• 20% - family, friends, other caregivers• 12% - aging or disease-specific organizations

Technology

45% of caregivers say they use some sort of technology:

• 24% - electronic organizer or calendar• 12% - emergency response system• 11% - device to send info to doctor or care manager• 9% - electronic sensor to detect safety at home• 7% - website or software to track personal records• 3% - text reader for low vision

Caregiver Public Policy

37%

11%

13%

9%

8%

7%

19%

18%

13%

12%

10%

8%

56%

29%

26%

21%

18%

15%

Most Next MostBase: 2009 All caregivers(n=1,480)

A caregiver tax credit of $3,000

Respite services, where someone would take care of your [relation] to give you a break

An outside service to provide transportation for your [relation]

An assessment of your capabilities and needs to connect you with needed services

*Asked only of caregivers who were employed while caregiving, but percentages shown are based on all caregivers to be comparable with other policy items.

A voucher program where your [relation] could pay you minimum wage for at least some of the hours you spend caregiving

A partially paid leave of absence from your work for 6 weeks*

37%

11%

13%

9%

8%

7%

19%

18%

13%

12%

10%

8%

56%

29%

26%

21%

18%

15%

Most Next MostBase: 2009 All caregivers(n=1,480)

A caregiver tax credit of $3,000

Respite services, where someone would take care of your [relation] to give you a break

An outside service to provide transportation for your [relation]

An assessment of your capabilities and needs to connect you with needed services

*Asked only of caregivers who were employed while caregiving, but percentages shown are based on all caregivers to be comparable with other policy items.

A voucher program where your [relation] could pay you minimum wage for at least some of the hours you spend caregiving

A partially paid leave of absence from your work for 6 weeks*

Recommendations Identify and help caregivers so that they can continue to

provide care while maintaining their own well being;

Identify and advocate for programs that make a real difference to caregivers’ well being and their ability to continue providing care;

Identify and promote the use of technologies that can facilitate caregiving;

Extend the reach of caregiver programs to all caregivers regardless of the age of their recipient;

Encourage families to plan proactively for aging and potential health/disability issues;

For More Information:Gail Gibson HuntPresident & CEO

National Alliance for Caregiving301-718-8444

[email protected]

National data on family caregiving:www.caregiving.org