Disability and Care Needs of Older Americans: An Analysis of the 2011 National Health and Aging Trends Study. Care Resources Available to Older Adults with Activity Limitations

04/29/2014

Potential informal networks and actual care networks of older adults living outside nursing homes are shown in Table 5. Only 2.5% of those receiving assistance and about 1.2% of those receiving no assistance had no informal network members. The mean size of the potential network is relatively stable across levels of care, approximately 4.0-4.1 across groups.

TABLE 5. Potential and Actual Care Networks for the Non-Nursing Home Population Ages 65 and Older, by Level of Assistance
 
  3+ Self-Care or Mobility Activitiesa 1-2 Self-Care or Mobility Activitiesa Household Activitiesb Any Self-Care, Mobility, or Household Activity No Self-Care, Mobility, or Household Activityc
Potential informal care network
Mean 4.1 4.1 4.0 4.0 4.0
% with none 2.7 2.9 1.9 2.5 1.2
1 7.9 5.8 7.5 6.9 6.7
2 13.4 16.7 15.7 15.5 12.2
3 19.6 19.5 20.4 19.8 22.2
4+ 56.4 55.1 54.5 55.3 57.7
Actual networkd
Mean 2.6 2.1 1.8 2.2 1.1
0 1.7 1.7 3.9 2.4 20.6
1 24.2 35.8 39.1 33.7 53.9
2 30.1 30.3 35.9 32.1 18.9
3 20.9 18.5 15.3 18.1 5.0
4+ 23.2 13.8 5.8 13.7 1.7
Unweighted n 749 968 782 2499 5110
 
SOURCE: 2011 NHATS; N=7609.
NOTES:
a. Assistance with bathing, dressing, eating, toileting, getting out of bed, getting around inside one’s home or building, or leaving one’s home or building.
b. Assistance related to health or functioning with laundry, hot meals, shopping for personal items, paying bills/banking, handling medications (but not self-care or mobility activities).
c. This group may be receiving paid or unpaid assistance with household and other tasks (e.g., transportation, getting to the doctor, less frequent money management tasks, and choosing health insurance) not necessarily related to health and functioning. Helpers for these tasks are shown in the lower panel under actual network.
d. Actual network in residential care counts only non-staff paid helpers and unpaid helpers. Staff in residential care are excluded from the counts.

Whereas 75% to more than 80% of all groups have three or more potential informal network members, about two-thirds of all who received assistance rely on only one or two actual caregivers. The size of the actual care network, including paid (non-staff) caregivers, also increases with the level of assistance. For instance, those who receive assistance with only household activities have 1.8 caregivers on average whereas those who received assistance with 3+ self-care or mobility activities have 2.6. (Note that nearly 80% of older adults with no activity limitations also report receiving assistance with household and other activities (for non-health or functioning reasons); persons who fall into this group receive help from on average one person.)

 
The majority of actual helpers to adults receiving assistance with any self-care, mobility, or household activity are members of the potential informal network, typically near relatives (not shown): children in and outside the household (42%), spouses/partners (18%), other household members (8%) and other social network members (6%). The remaining 26% of helpers come from outside the potential network: 10% are paid and 16% unpaid. The most common type of “other” unpaid helpers are friends, followed by granddaughters, other non-relatives, and daughters-in-law.
 
Composition of Actual Network and Hours Received. Table 6 provides information on network composition and hours of non-staff care received by the older population outside of nursing homes, including those in supportive care settings. Among those receiving any help in the last month, 34.5% received paid help (including help from staff), 95.0% received unpaid help, and 29.5% received both types of assistance (Table 6).
 
TABLE 6. Percentage of Older Adults Receiving Paid and Unpaid Help in the Last Month and Mean Non-Staff Hours Among those Receiving Assistance: By Level of Assistance
 
 
3+ Self-Care
or Mobility Activitiesa
1-2 Self-Care
or Mobility Activitiesa
Household Activitiesb Any Self-Care, Mobility, or Household Activity
Any paid help 50.0 28.0 29.4 34.5
Any unpaid help 94.7 95.6 94.6 95.0
Paid help only 5.3 4.4 5.3 5.0
Unpaid help only 50.0 72.0 70.5 65.5
Both 44.7 23.6 24.1 29.5
Paid non-staff hours (mean) 69.9 13.7 4.5 25.9
Unpaid hours (mean) 252.8 118.1 85.0 143.8
Total hours (mean) 322.6 131.8 89.6 169.7
Unweighted n 749 968 782 2499
SOURCE: 2011 NHATS; N=2499.
NOTES:
a. Assistance with bathing, dressing, eating, toileting, getting out of bed, getting around inside one’s home or building, or leaving one’s home or building.
b. Assistance related to health or functioning with laundry, hot meals, shopping for personal items, paying bills/banking, handling medications (but not self-care or mobility activities).

The percentage receiving paid help varies by level of assistance, with those receiving assistance in three or more self-care or mobility activities receiving substantially more paid help than other groups receiving assistance (50.0% vs. 28%-29%). The receipt of unpaid help is nearly universal (94%-96%) across all levels of assistance, but the percentage relying solely on unpaid help is much higher for those receiving assistance only with household activities (70.5%) or 1-2 self-care (72.0%) activities than for those receiving assistance with three or more self-care or mobility activities (50.0%). Correspondingly, the percentage receiving a combination of paid and informal is highest (44.7%) for those at the most intense levels of assistance and is about one in four for other assistance groups.

 
Average paid, unpaid, and total non-staff hours all rise sharply with level of assistance. Older adults receiving assistance with 3+ self-care or mobility activities received an average 323 hours of help provided by non-staff caregivers over the last month: 70 hours of paid care and 253 hours of unpaid care. Older adults receiving assistance with 1-2 self-care or mobility activities received less than half that number of hours--132 hours of care, 14 paid and 118 unpaid, and those adults receiving assistance only with household activities received on average 90 hours of help, nearly all unpaid.
 
In addition to non-staff assistance, those living in settings where supportive services are available (other than nursing homes) received staff-provided help with an array of activities, depending on the place. Table 7 shows the services available (for those in multi-level places, at the current level of care) and used in the last month. The most commonly available services were social activities (92%), meals (87%), and housekeeping services (79%). The services most commonly used by residents were meals (77%) and housekeeping (68%). Although other services were available to the majority of residents, fewer than 50% used transportation, laundry, medication, or personal care services or recreational facilities.
 
TABLE 7. Support Services Available and Used by Older Adults in Supportive Care Settings
 
Support Services % with Service Available % Used Service in the Last Month
Social activities 91.6 61.7
Meals 86.5 76.7
Housekeeping services 79.1 68.0
Van to shopping 75.4 26.0
Van service to the doctor 72.8 27.9
Laundry services 72.3 47.8
Help with medications 64.3 41.6
Recreation facilities 64.0 29.5
Help with bathing or dressing 62.6 30.2
 
SOURCE: 2011 NHATS; N=412.

Potential and Actual Networks and Unmet Need: Supportive Care Settings versus Community. Table 8 shows the size of the potential and actual care networks of individuals receiving assistance with self-care, mobility, and household activities in supportive care settings (other than nursing homes) and community settings. The potential informal care network is slightly smaller in supportive settings than in the community, and a larger percentage of those in supportive care settings have no potential informal caregivers (8.7% vs. 1.3%). Excluding residential care staff, average actual network sizes are similar for those in supportive care settings and the community (1.7 vs. 2.3), but 12.5% of those in supportive care settings have only staff helpers (no non-staff helpers) in their networks.

TABLE 8. Potential and Actual Care Networks for the Non Nursing Home Population Ages 65 and Older Receiving Assistance, by Residential Setting

  Supportive Care Settings Community
Potential informal care network
Mean 2.9 4.2
% with none 8.7 1.3
1 12.4 5.9
2 22.7 14.1
3 20.5 19.7
4+ 35.7 59.0
Actual Networka
Mean 1.7 2.3
% with none 12.5 0.5
1 37.7 32.1
2 31.2 33.1
3 9.9 19.9
4+ 8.7 14.9
Unweighted n 316 2183
 
SOURCE: 2011 NHATS; N=2499.
NOTE:
a. Actual network in supportive care settings counts only non-staff paid helpers and unpaid helpers. Staff in supportive care settings are excluded from the counts.

Table 9 shows the distribution of older adults receiving assistance by whether help received is paid or unpaid and mean hours in the last month, by setting.3 The percentage receiving any non-staff paid help is only slightly smaller in supportive care settings than in the community (14.5% vs. 21.2%). The percentage receiving unpaid help is similar: 96.1% in care settings vs. 97.6% in the community. Only about one in ten in supportive care settings vs. nearly one in five in the community receives both paid and unpaid help. Average hours of non-staff paid help in the community are also twice those in supportive care settings (28.7 vs. 14.2 hours) and average unpaid hours are more than three times those in supportive settings (164.0 vs. 49.6 hours).

 
TABLE 9. Percentage of Older Adults Receiving Non-Staff Paid and Unpaid Help in the Last Month and Mean Hours Among those Receiving Assistance: By Residential Settinga
 
  Supportive Care Settings Community
Any non-staff paid help 14.5 21.2
Any unpaid help 96.1 97.6
Non-staff paid help only 3.9 2.4
Unpaid help only 85.5 78.8
Both 10.6 18.8
Paid non-staff hours (mean) 14.2 28.7
Unpaid hours (mean) 49.6 164.0
Total hours (mean) 63.7 192.6
Unweighted n 283 2174
SOURCE: 2011 NHATS; N=2457.
NOTE:
a. Excludes 42 cases receiving only staff care.

Overall, 15% of the 65 and older population reported one or more adverse consequences related to unmet need (see Table 10). Focusing on the subset of older adults with care needs (either having difficulty with or receiving help with a self-care, mobility, or household activity), the figure increases to 32%. In other words, one out of every three older adults with basic needs experienced an adverse consequence in the last month linked to unmet need. The most common consequences were wetting or soiling clothes, staying inside, not going places inside one’s home or building, and making mistakes with medicine.

 
TABLE 10. Percentage of the 65 and Older Non-Nursing Home Population with Adverse Consequences in the Last Month Related to Unmet Need
Activity % with Adverse Consequence(N=7609) % with Adverse Consequence Among Those with Difficulty or Receiving Help with Activity
(N)
Wet or soiled clothes 3.8 43.4 (820)
Stayed inside 5.8 29.6 (1834)
Did not go places in home/building 4.8 26.0 (1680)
Made mistake taking medicine 3.3 19.9 (1482)
Went without bathing/showering/cleaning 2.0 12.9 (1473)
Had to stay in bed 2.3 11.5 (1698)
Went without a hot meal 1.9 9.5 (1844)
Went without getting dressed 1.3 7.5 (1625)
Went without groceries 1.4 6.3 (2138)
Went without paying bills 0.9 5.7 (1549)
Went without clean laundry 0.9 4.9 (1637)
Went without eating 0.3 3.7 (671)
Any consequence 15.0 31.8 (4026)

SOURCE: 2011 NHATS.


The percentage reporting adverse consequences increases markedly with levels of need (Table 11). Less than 15% of those with difficulty (but not receiving help) with self-care, mobility or household activities and nearly 25% of those receiving help with only household activities reported a consequence. Among those receiving assistance with self-care or mobility, rates were far higher. More than four in ten of those receiving help with 1-2 self-care or mobility activities and about seven in ten of those receiving help with three or more self-care or mobility activities reported at least one consequence in the last month. Adverse consequences were substantially higher among those receiving paid, non-staff help (58.2%) compared with those receiving any unpaid help (44.7%). Estimates for living in supportive care settings indicate only slightly higher rates of unmet than among community residents (35.0% vs. 31.4%).

TABLE 11. Percentage of Older Adults with Difficulty or Receiving Help Who Report an Adverse Consequence Related to Unmet Need: By Level and Type of Assistance

  Adverse Consequence with:
Self-Care or Mobility Household Activities Either
Assistance with any self-care, mobility, or household activity 38.4 16.0 44.4
   3+ Self-care or mobility activitiesa 71.7 18.9 73.7
   1-2 Self-care or mobility activitiesa 34.8 15.7 40.7
   Household activities onlyb 15.2 13.9 24.8
Difficulty but no help 7.0 9.9 14.8
Any paid non-staff helpc 50.3 22.7 58.2
Any unpaid helpc 38.1 16.0 44.7
Supportive care settings 28.2 11.1 35.0
Community 24.6 13.6 31.4
Totalc 24.9 13.4 31.8
SOURCE: 2011 NHATS; N=4026.
NOTES:
a. Assistance with bathing, dressing, eating, toileting, getting out of bed, getting around inside one’s home or building, or leaving one’s home or building.
b. Assistance related to health or functioning with laundry, hot meals, shopping for personal items, paying bills/banking, handling medications (but not self-care or mobility activities).
c. Among those who have received help with self-care or mobility activities or household activities for health-related reasons.

3 Unlike Table 6, which included staff in the definition of paid help, here we exclude staff in order to highlight paid help from outside the facility.

 

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