Trends in Disability, Community Living, and Caregiving

Size: px

Start display at page:

Download "Trends in Disability, Community Living, and Caregiving"

Prudence Chambers
7 years ago
Views:

1 Trends in Disability, Community Living, and Caregiving Analysis of Data from the National Long-Term Care Survey Ari Houser AARP Public Policy Institute September 28, 2010

2 Overview AARP Public Policy Institute has released two new reports based on the NLTCS Data for people 65+ in the community and in institutions in 5 year intervals Trends in Disability and Institutional Use Trends in Managing Disability in the Community

and in institutions in 5 year intervals 1984-2004 Trends in

3 Trends in Disability and Institutional Use Between 1984 to 2004, > Disability rates are down > Institutional use is down > Older people with disabilities living in the community have become more disabled

4 From 1984 to 2004, Disability Rates > number of older people increased rapidly > but disability rates decreased almost as rapidly

5 23% 35 million 27 million 19%

6 As a result... The number of older people with disabilities barely changed at all since million 6.2 million 7.1 million 7.0 million 6.7 million 7.2 million

barely changed at all since 1989 8.5 million 6.

7 Institutional Use Declined from 1984 to 2004 > at all ages > at all levels of disability

8 Rate down 37% since million 2.02 million 2.18 million 1.43 million

9 Community Living Older people with disabilities increasingly live in the community > even at the highest levels of disability

10 More disabled are living in the community % Community disabled with 2+ ADLs % % IADL Disability (millions) ADL Disability (millions)

2 2.0 1.8 1.7 1.8 IADL Disability (millions) 2.5 3.

11 Who is living in the community? 2+ ADL community disabled increased by > nearly 1.2 million people > two-thirds % Growth of 2+ ADL community disabled due to > Women: 76% > Widowed/unmarried: 73.5% > Living alone: 52% > Age 85+: 38%

12 Where older people with disabilities live Private residence alone +26,330 Change Priv. residence w/ others +361,169 Community residential +228, ,941 Institutional

13 Trends in Managing Disability in the Community > How older people in the community manage disability (trends 1 3) > Family caregivers (trends 4&5) > Sources of payment and hours of care (trends 6&7)

14 Trend #1: Assistive Technology The number of older people managing disabilities exclusively with assistive devices has increased dramatically

15 Millions of People 1 million more using assistive devices only 6 Assistive devices only Human help

only Human help 5 4 3 0.63 0.93 1.09 1.29 4.

16 Reliance on devices common at lower # of ADLs 1-2 ADLs 40% 60% Human Help 3-4 ADLs 78% 22% Assistive Equipment Only 5-6 ADLs 99.8% 0.2%

17 Trend #2: Human Help The number of older people with disabilities living in the community who received care from family, friends, or paid caregivers has changed little over time, despite substantial growth in the older population

from family, friends, or paid caregivers has changed

18 Number of Older People with Disabilities (Millions) Total with disabilities Living in the community Receiving human help

19 Trend #3: Formal Care Only A small but growing number of community residents age 65+ with disabilities is receiving only formal services, but the vast majority continues to receive family care

20 Number receiving only formal care has doubled But the vast majority still receive family care Number of Older People with Disabilities (Millions) Formal care only Any family care

Disabilities (Millions) 0.21 0.29 0.27 0.32 0.41 3.86 3.82 3.

21 Care arrangement varies by place of living 61% 47% 46% 22% 14% 26% 17% 10% 17% 11% 26% 2% Private residence with others Private residence alone Community residential care Assistive Devices only Family care only Formal and family care Formal care only

22 Trend #4: Declining Help for Family Caregivers Among older community residents with disabilities who received family care, the number receiving supplemental formal care increased from 1984 to 1994 but has since declined back to 1984 levels

23 Supplemental formal care has declined 28% of older people receiving family care also received some paid care Same as in % lower than in % 32% 39% 28% 28% 72% 68% 61% 72% 72% Family and formal care Family care only

24 Family caregivers do most of the work alone even for those with the highest level of disability IADL only 83% 17% 1-2 ADLs 81% 19% Family care only 3-4 ADLs 66% 34% Family and formal care 5-6 ADLs 58% 42%

25 Trend #5: Family Caregivers Spouses and children continue to be the primary family caregivers > Gender disparities persist > Family caregivers are themselves older

26 85% of family caregivers are spouses or adult children Up from 80% in Other relatives and non-relatives are rarely primary caregivers until no spouse or child is available. Living Family Members Spouse or Child Primary Caregiver Other Relative Non- Relative Spouse & Child 99% 1% < 0.5% Spouse only 95% 3% 2% Child only 88% 7% 5% Neither 73% 27%

27 Daughters and wives remain usual caregivers Gender of Child Caregivers Gender of Spouse Caregivers 65% 35% % 44% Daughters Sons Wives Husbands 65% 35% % 43%

28 Both child and spouse caregivers are getting older Age of Child Caregivers Age of Spouse Caregivers 73% 27% % 53% 45+ years < 45 years 75+ years < 75 years 81% 19% % 48%

29 Trend #6: Sources of Payment Private resources are the primary payment source for services in the community

30 Private payment is most common source More than half use private sources; one third use public sources Combining public and private sources is rare Payment source unknown Older person Family/friends 8% 46% Public sources only 23% 21% 10% Private and public sources Private sources only 46% Medicare Medicaid Insurance Other/unknown 9% 17% 25% 26% Note: Each older person may have more than one source of payment. Older person Family/friends Medicare Medicaid Insurance Other/unknown

31 Public sources more likely to pay for skilled care Unskilled care usually paid out of pocket 53% Older person Medicare Family/friends Medicaid 35% 37% Insurance Other/unknown 20% 4% 15% 17% 16% 12% 9% 6% 23% Skilled helpers (provide nursing services) Unskilled helpers (do not provide nursing services) Note: Each older person may have more than one source of payment.

32 Trend #7: Hours of Care The total hours of formal skilled care have declined > Hours of family care have held steady > Hours of unskilled care held steady

33 Care concentrated among the most disabled IADL only 1-2 ADL Average Weekly Hours of Care by Level of Disability (among those receiving care) 3-4 ADLs ADLs 66

34 Hours of skilled care cut in half from 1999 Among older people in the community with 3+ ADLs Average Hours of Family Care Change Any family care Average Hours of Formal Care Any formal care Skilled care Unskilled care Average Hours of Out-Of-Pocket Formal Care Any o-o-p care Skilled care Unskilled care

35 Major findings for family caregivers Family caregivers continue to be the primary caregivers for older people with disabilities Compared to previous years > Care recipients have higher levels of disability > Caregivers are older > Caregivers are more likely to have full responsibility > Hours of formal skilled care have dropped dramatically

36 Contact info > Reports are available on the Public Policy Institute website: > Or you can contact me at

Adult children provide the majority of care

Adult children provide the majority of care Caregiving Helping the elderly with activity limitations Number 7 May 2000 NATIONAL ACADEMY ON AN AGING SOCIETY Two of five people over age 70 need help with one or more daily activities. Yet many do not