Disability and Care Needs of Older Americans by Dementia Status: An Analysis of the 2011 National Health and Aging Trends Study. Care Resources and Caregiving by Dementia Status

04/29/2014

Care Resources and Caregiving by Dementia Status

The next tables provide information about care resources and caregiving to older people who received assistance with self-care, mobility or household activities for health or functioning reasons. Persons in nursing homes are excluded. Additional information on caregiving is available in Spillman et al. (2014).

Residence Type by Level of Assistance and Dementia Status. Supportive care settings that provide assistance with routine activities and/or meals are one option for providing needed assistance to persons with disabilities. Among persons with probable dementia not in nursing homes, 16% were living in a supportive care setting and 84% were in the community (Table 6). By contrast, about 8% of persons with possible dementia, and 4% of those with no dementia, were in supportive care settings.

TABLE 6. Residence Type by Dementia Status Among Persons Receiving Assistance in the Non-Nursing Home Population Ages 65 and Older
(%)
  Any Self-Care,
  Mobility, or Household  
Activity Assistancea,b
3+ Self-Care
  or Mobility Limitations  
  Total Non-Nursing  
Home Population
Probable dementia
   Community residence 80.3 79.4 84.0
   Supportive care residence   19.7 20.6 16.0
Possible dementia
   Community residence 81.3 89.9 91.5
   Supportive care residence 18.7 10.1 8.5
No dementia
   Community residence 86.5 86.1 96.2
   Supportive care residence 13.5 13.9 3.8
SOURCE: 2011 NHATS; N=7609.
NOTES:
  1. 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.
  2. Assistance for health or functioning reasons with laundry, hot meals, shopping for personal items, paying bills/banking, handling medications (but not self-care, mobility, or household activities.

Among persons with probable dementia, about one-fifth of those who received any assistance (self-care, mobility or household activity) or assistance at more intensive levels (self-care or mobility), were in supportive care environments. The percentage of persons with no dementia who lived in supportive care settings increased from 4% among those who received no assistance with self-care, mobility or household activities to 13%, among persons receiving any help or help at more intensive levels. Despite their higher representation in supportive care settings, four out of five persons with probable dementia in the non-nursing home population who received assistance lived in community settings.

Number of Informal Caregivers and Hours of Help. As shown earlier, persons with probable dementia represent nearly half of those receiving assistance with 3+ self-care or mobility activities, and close to one in three persons receiving any assistance with self-care, mobility or household activities. Table 7 shows that one-third of informal caregivers to older people are assisting someone with probable dementia (not in a nursing home) and about half of informal caregivers are assisting someone with probable or possible dementia. Two-fifths (40.0%) of all informal caregiving hours are to persons with probable dementia.

  TABLE 7. Number of Informal Caregivers and Hours of Help Provided in the Last Month by Dementia Status in the Non-Nursing Home Population Ages 65 and Older  
  Number of
  Caregivers  
(000s)
Percent of
  Caregivers  
Mean Hours
  of Care Provided  
  Aggregate Monthly  
Hours Provided
(000s)
  Percent of Aggregate  
Hours of Help
All caregivers 17,949 100.0 74.8 1,342,520 100.0
Recipient dementia status
   No dementia 9,369 52.2 64.9 608,435 45.3
   Possible dementia 2,741 15.3 71.9 197,236 14.7
   Probable dementia   5,838 32.5 91.9 536,849 40.0
SOURCE: NHATS and NSOC; N=1996.

Care Network Size. Table 8 shows mean caregiver network size and the proportion of persons with 1-3 or more caregivers by dementia status and level of assistance. Among persons who received assistance with any activity, mean network size was slightly larger for persons with probable dementia (2.4) than for others (2.1). Regardless of dementia status, mean care networks were larger for persons who received help with three or more self-care or mobility activities than for those receiving assistance with household activities only.

The distribution of number of caregivers varies by both dementia status and level of assistance. About three-quarters of persons who received help with three or more self-care or mobility activities had more than one caregiver regardless of dementia status. There were differences by dementia status for other levels of assistance, however. For persons who received help with 1-2 self-care or mobility activities, 70% of persons with probable dementia compared to 61% of those with no dementia had more than one caregiver. For household help only, the differences were similar: 67% of persons with probable dementia had more than one caregiver, compared to 58% among those with no dementia.

The proportion relying on one caregiver was roughly similar among those who had help with three or more self-care or mobility activities regardless of dementia status. However, reliance on one caregiver was less common for persons with probable dementia at other levels of assistance: for help with 1-2 self-care activities, 30% for those with probable and 39% for those with no dementia; for help with household activities only, 33% for those with probable and 42% for those with no dementia.

Help from three or more caregivers was more common among persons who received help with three or more self-care or mobility activities, and was similar for recipients with probable and no dementia.

TABLE 8. Actual Informal Care Network Size by Level of Assistance and Dementia Status of Care Recipients in the Non-Nursing Home Population Ages 65 and Older
  3+ Self-Care
  or Mobility Activitiesa  
1-2 Self-Care
  or Mobility Activitiesa  
  Household  
Activitiesb
Any Self-Care,
Mobility, or
  Household Activities  
Probable dementia
Network Size (mean)c 2.7 2.3 2.0 2.4
% with:
   1 Caregiver 23.2 30.1 33.3 27.6
   2 Caregivers 30.5 33.0 40.7 33.7
   3+ Caregivers 46.3 36.9 26.0 38.7
Possible dementia
Network Size (mean)    2.6 2.1 1.8 2.1
% with:
   1 Caregiver 23.7 35.3 43.4 35.7
   2 Caregivers 38.0 26.8 40.1 33.8
   3+ Caregivers 38.3 37.9 16.5 30.5
No dementia
Network Size (mean) 2.6 2.1 1.9 2.1
% with:
   1 Caregiver 26.7 39.0 42.5 37.9
   2 Caregivers 28.1 31.2 35.4 32.2
   3+Caregivers 45.2 29.8 22.1 29.9
SOURCE: 2011 NHATS; n=2457.
NOTES:
  1. 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.
  2. 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).
  3. Network size and distribution by number of caregivers excludes a small number of persons reporting 0 caregivers (N=42). These are primarily persons in residential care who received assistance from staff members only. Staff in residential care are excluded from counts of caregivers.

Paid and Unpaid Help and Hours of Help. As expected, about 95% of persons who received any assistance with self-care, mobility or household activities had unpaid help and these high levels were observed at all levels of assistance and regardless of dementia status (Table 9). In contrast, there was variation across groups with regard to paid help, which includes help from staff for those in non-nursing home supportive care settings: 42% among those with probable dementia had paid help in comparison to 34% among those with possible and 30% among those with no dementia.

Most people who received any assistance had unpaid help only, from 58% for those with probable dementia to 69% of those with no dementia. Receiving only paid help was rare--about 5% among those who received any help--and did not differ by dementia status. Persons with probable dementia were more likely than others, however, to have both paid and unpaid help (37% vs. 29% of those with possible dementia and 25% of those with no dementia).

Among those who received any help, mean hours of assistance provided in the last month were substantially higher for persons with probable dementia compared to others for paid, unpaid, and total hours. Paid hours does not include hours of help from staff for those in non-nursing home supportive care settings. Overall mean hours of help in the last month with any activity were 267 hours for those with probable dementia, 152 hours for those with possible dementia and 123 hours for those with no dementia.

  TABLE 9. Paid and Unpaid Help in the Last Month and Mean Hours of Help by Dementia Status of Care Recipients in the Non-Nursing Home Population Ages 65 and Older  
(%)
    Probable     Possible   No
  Dementia  
  Total  
Any Paid Helpa 42.3 33.6 30.5 34.5
Any Unpaid Help 94.9 95.8 95.0 95.0
Paid Help Onlya 5.1 4.3 5.1 5.0
Unpaid Help Only 57.7 66.4 69.5 65.5
Botha 37.2 29.3 25.4 29.5
Paid Non-Staff Hours (mean)b   46.0 16.9 17.9 25.9
Unpaid Hours (mean) 220.8 135.4 105.0 143.8
Total Hours (mean)b 266.8 152.3 123.0 169.7
SOURCE: 2011 NHATS; N=2499.
NOTES:
  1. Help from staff for those in non-nursing home supportive care settings is included as paid help.
  2. Hours of help does not include staff in non-nursing home supportive care settings.

Mean unpaid hours of help to persons with probable dementia were double (221) those to persons with no dementia (105).

Characteristics of Informal Caregivers and Hours of Help. The distribution of caregivers by relationship to the recipient differs by dementia status (Table 10). Spouses and daughters each are about one-quarter of caregivers to persons with no dementia. Daughters, as a proportion of caregivers, increase to 29% for recipients with possible dementia and 35% of caregivers to recipients with probable dementia. Spouses on the other hand decrease to 15% of caregivers to recipients with possible or probable dementia. Otherwise, caregiver differences are relatively small with regard to age, gender, and employment of caregivers by dementia status of the care-recipient. Women are 60% of caregivers to persons with no dementia and 64% of caregivers to persons with probable dementia, for example. The proportion of caregivers who work for pay is 43% if care-recipients have no dementia and 45% if care-recipients have probable dementia.

Mean hours per month of care are substantially different depending on the dementia status of the care-recipient. Mean hours provided by informal caregivers to persons with no dementia were 65 hours per month, compared to 92 hours for persons with probable dementia, a 41% increase. Hours provided by spouse caregivers averaged 90 per month for care-recipients with no dementia and 145 hours per month for care-recipients with probable dementia, a 60% increase. Average hours provided by daughters was 60 per month if the recipient had no dementia and 102 hours for recipients with probable dementia, a 70% increase.

  TABLE 10. Characteristics of Informal Caregivers and Mean Hours of Care Provided in the Last Month by Dementia Status of Care Recipients in the Non-Nursing Home Population Ages 65 and Older   
  No Dementia Possible Dementia Probable Dementia
  Number  
(000s)
  Percent     Mean Hours  
of Help
  Number  
(000s)
  Percent     Mean Hours  
of Help
  Number  
(000s)
  Percent     Mean Hours  
of Help
All Caregivers    9369 100.0% 65 2741 100.0% 72 5838 100.0% 92
Relationship to recipient
   Spouse 2479 26.5 90 424 15.5 150 899 15.4 145
   Daughter 2415 25.8 60 807 29.4 72 2041 35.0 102
   Son 1604 17.1 51 535 19.5 76 1149 19.7 80
   Other 2871 30.6 56 976 35.6 35 1750 30.0 61
Caregiver age
   <45 1608 17.4 95 468 17.4 54 872 15.5 82
   45-54 2131 23.0 53 701 26.0 74 1358 24.2 97
   55-64 2172 23.4 51 786 29.2 69 1803 32.1 85
   65-74 2016 21.8 58 414 15.4 67 862 15.4 93
   75+ 1337 14.4 81 324 12.0 106 713 12.7 124
Caregiver gender
   Male 3749 40.0 53 1023 37.3 67 2082 35.7 86
   Female 5621 60.0 73 1718 62.7 75 3757 64.3 95
Caregiver works for pay
   No 5312 57.4 78 1444 53.3 99 3151 54.5 115
   Yes 3944 42.6 48 1265 46.7 42 2628 45.5 65
SOURCE: 2011 NHATS and NSOC; N=1966.

These large increases in hours of care provided to recipients with dementia are further indication of the challenges of caring for older individuals with dementia and where the burden falls. Spouse caregivers of persons with dementia provided the highest mean hours of help, 145 on average per month. Daughters, however, provided the largest share--over a third of hours--among caregivers to persons with dementia.

Types of Assistance Provided by Informal Caregivers. Informal caregivers assist with a broad range of activities, grouped here into five areas: self-care or mobility, household activities, transportation, health system interactions, and health or medical care.

Mobility assistance is provided by 78% of caregivers to persons with probable dementia versus 67% of those with no dementia. Differences are greater for self-care, where 63% of helpers to persons with probable dementia provide this type of help in contrast to 40% of helpers to those with no dementia. Help with household activities for health or functioning reasons is almost universal--96% of caregivers provide this type of assistance regardless of the dementia status of the recipient. The largest difference in types of household help provided is for keeping track of medicines, where 63% of helpers to an older person with dementia assist, compared with 38% of helpers to someone with no dementia.

  TABLE 11. Types of Help Provided by Informal Caregivers in the Last Month by Dementia Status of Care Recipients in the Non-Nursing Home Population Ages 65 and Older  
  No Dementia Possible Dementia Probably Dementia
  Number  
(000s)
  Percent     Number  
(000s)
  Percent     Number  
(000s)
  Percent  
Self-care or mobility 6626 70.7 2227 81.2 4931 84.5
   Mobility 6272 67.1 2000 73.0 4554 78.1
   Self-care 3706 39.7 1403 51.2 3697 63.4
Household activities 9040 96.5 2640 96.3 5640 96.6
   Shopping 8513 90.9 2388 88.4 5122 87.9
   Laundry, housework, meals 7315 78.1 2175 79.7 4722 80.9
   Help with bills, managing money   5132 54.8 1607 58.6 3731 63.9
   Keep track of medicines 3583 38.3 1451 52.9 3692 63.2
Transportation 8294 88.5 2397 87.4 4812 82.4
Health system interactions 6723 71.8 2122 77.4 5003 85.7
   Make appointmentsa 4793 51.2 1701 62.1 4366 74.8
   Speak to doctora 4378 46.8 1473 53.7 4008 68.6
   Order medicine 3835 41.0 1483 54.1 3335 57.1
   Other insurance issuesa 2138 22.8 631 23.0 1754 30.1
   Add or change insurancea 2755 29.5 814 29.7 2464 42.3
Health/medical care 4878 52.1 1715 62.6 3650 62.5
   Diet 2500 26.7 764 27.9 1651 28.3
   Foot care 2104 22.5 954 34.9 1799 30.8
   Skin care 2018 21.5 630 23.2 1510 25.9
   Exercises 1619 17.3 649 23.7 1540 26.4
   Dental care 771 8.2 431 15.7 1473 25.2
   Manage medical tasks 817 8.7 226 8.2 856 14.7
   Shots or injections 630 6.7 233 8.5 528 9.0
SOURCE: 2011 NHATS and NSOC; N=1996.
NOTE:
  1. The reference period is "in the last year" for these activities, which may be performed less frequently.

Four out of five caregivers provide assistance with transportation, ranging from 88% for those who help someone with no dementia, to 82% of those who are helping someone with probable dementia.

TABLE 12. Gains from and Negative Aspects of Caregiving Reported by Informal Caregivers by Dementia Status of Care Recipient in the Non-Nursing Home Population Ages 65 and Older
(%)
    Little or None     Some     Substantial  
No Dementia
Gains from caregivinga 5.7 27.3 67.0
   More confident about your abilities 20.1 33.9 46.0
   Taught you to deal with difficult situations 14.4 35.6 50.0
   Brought you closer to care-recipient 9.4 20.0 70.6
   Gives you satisfaction that recipient is well cared for   1.3 12.2 86.5
Negative aspects of caregivinga 68.7 25.0 6.3
   Exhausted when you go to bed at night 62.2 24.2 13.6
   Have more things to do than you can handle 60.8 26.1 13.2
   Don't have time for yourself 65.3 24.7 10.0
   When you get a routine going, recipient's needs change 72.9 19.5 7.5
Difficulties with caregivingb
   Financial 85.2 9.7 5.1
   Emotional 67.5 22.5 10.0
   Physical 84.6 10.4 5.0
Possible Dementia
Gains from caregivinga 5.7 26.9 67.4
   More confident about your abilities 17.0 36.9 46.1
   Taught you to deal with difficult situations 17.4 32.9 49.7
   Brought you closer to care-recipient 10.8 21.7 67.4
   Gives you satisfaction that recipient is well cared for 2.1 10.8 87.1
Negative aspects of caregivinga 65.1 28.4 6.5
   Exhausted when you go to bed at night 58.3 28.3 13.4
   Have more things to do than you can handle 61.4 25.9 12.7
   Don't have time for yourself 61.2 24.7 14.1
   When you get a routine going, recipient's needs change 76.2 16.5 7.4
Difficulties with caregivingb
   Financial 87.7 7.5 4.9
   Emotional 64.7 24.0 11.4
   Physical 88.2 8.1 3.7
Probable Dementia
Gains from caregivinga 7.0 24.7 68.4
   More confident about your abilities 20.3 35.4 44.3
   Taught you to deal with difficult situations 12.2 31.4 56.5
   Brought you closer to care-recipient 11.0 22.9 66.1
   Gives you satisfaction that recipient is well cared for 0.6 13.7 85.7
Negative aspects of caregivinga 51.4 30.8 17.8
   Exhausted when you go to bed at night 49.3 29.9 20.8
   Have more things to do than you can handle 48.1 26.8 25.1
   Don't have time for yourself 46.3 30.0 23.7
   When you get a routine going, recipient's needs change 62.3 23.6 14.1
Difficulties with caregivingb
   Financial 74.0 16.0 10.0
   Emotional 54.2 25.6 20.2
   Physical 74.8 15.6 9.6
SOURCE: 2011 NHATS and NSOC; N=1966.
NOTES:
  1. Based on a scale from 0-8 summing individual items for gains or negative aspects after recoding each item to 0-2. Categories for scales are 0-2: little or none; 3-5: some; 6-8: substantial.
  2. For difficulty items, respondents are asked whether they have any difficulty. If yes, scores from 1 (a little difficulty) to 5 (a lot of difficulty) are obtained. Categories are 0: none; 1-2: some, and 3-5: substantial.

Involvement by caregivers to older persons in health system interactions is also common. However, a higher percentage of helpers are involved for care-recipients with probable dementia compared to those with no dementia, respectively: 69% versus 47% speak to the doctor for the person, 57% versus 41% order medicine, and 42% versus 29% help add or change insurance.

Over half of informal caregivers help with various health and medical tasks. Differences by dementia status of the care-recipient are greatest for dental care, where 25% of helpers to persons with probable dementia assist versus 8% of helpers to persons with no dementia, followed by exercises and foot care.

Positive and Negative Aspects of Caregiving. Caregivers were asked about both positive and negative aspects of caregiving. In addition, they were asked about financial, emotional, and physical difficulties with caregiving. Table 12 shows results by dementia status for individual positive and negative items, as well as summary scales that characterize gains from caregiving (summing all positive items) and negative aspects of caregiving (summing all negative items).

Among the positive items, there was no difference by dementia status. High percentages (86%) of caregivers felt substantial satisfaction that the recipient was well cared for as a result of providing care. Half or more of caregivers indicated substantial agreement that caregiving taught them to deal with difficult situations and brought them closer to the care-recipient. Overall, the summary measure shows that two-thirds of caregivers--whether caring for someone with dementia or someone without--felt gains from caregiving were substantial.

In general, across the negative items, the percentages of caregivers who indicated a substantial impact were low. However there were differences between caregivers to someone with dementia, who were more likely to report substantial negative effects from caregiving, and caregivers to someone with no dementia. From 20% to 25% of caregivers to persons with dementia said that being exhausted when they went to bed at night, having more things to do than they can handle, and not having time for themselves, were substantial issues. By comparison, percentages for caregivers to someone with no dementia ranged from 10% to 14% on these items. Overall, the summary measure shows that 18% of caregivers to an older person with dementia indicated a substantial negative impact of caregiving and another 31% indicated some negative impact, in contrast to 6% (substantial) and 25% (some) of caregivers to a recipient with no dementia.

A higher percentage of caregivers indicated some or substantial emotional difficulties, compared with financial or physical difficulties, associated with caregiving. Among caregivers to someone with probable dementia, 20% indicated substantial emotional difficulties and another 26% indicated some emotional difficulties. About 10% indicated substantial financial or physical difficulties (16% indicated some). Among caregivers to a recipient with no dementia, 10% had substantial emotional difficulties and 22% had some. Only 5% of caregivers to someone with no dementia indicated substantial financial or physical difficulties.

Table 13 focuses on reports of little/no gains from caregiving and substantial negative aspects. Differences in finding little or no gains from caregiving do not differ by dementia status of the care-recipient, consistent with the more detailed information in Table 12, which suggests no differences across the items on gains from caregiving by dementia status. Differences in experiencing substantial negative gains were significant across dementia status however, with caregivers to persons with probable dementia being more likely to indicate substantial negative effects of caregiving.

TABLE 13. Little or No Gains and Substantial Negative Aspects of Caregiving Reported by Informal Caregivers by Dementia Status of Care Recipient in the Non-Nursing Home Population Ages 65 and Older
  All Caregivers Self-Care or Mobility Caregivers
Little or
  No Gains  
Substantial
  Negative Aspects  
Little or
  No Gains  
Substantial
  Negative Aspects  
Care-recipient dementia status
   No dementia 5.7 6.3 4.1 7.5
   Possible dementia 5.7 6.5 5.4 7.8
   Probable dementia   7.0 17.8 8.1† 19.9**
SOURCE: 2011 NHATS and NSOC; N=1966.

**(*) significantly different from previous value at the 5%(10%) level in a two-tailed test.
††(†) significantly different from the value for No dementia at the 5%(10%) level in a two-tailed test.

Support Services Received or Sought by Informal Caregivers. Table 14 shows sources of support used and sought by caregivers to older adults by dementia status of the care-recipient. Over half of informal caregivers indicated friends or family were available to help care for the older adult, regardless of dementia status. While participation in support groups was low across the board, persons caring for someone with probable dementia were more likely to have used services so they could take time away, to have received training to help care for the recipient, and to have found financial help for the recipient. Caregivers to someone with probable dementia also were more likely to have sought these types of support--respite services, training, financial help for the recipient--although support-seeking was low among all caregivers ranging from a high of 12% (caregivers to those with probable dementia) to a low of 6% (caregivers to those with no dementia).

TABLE 14. Whether Informal Caregiversa Received or Sought Help by Dementia Status of Care Recipient in the Non-Nursing Home Population Ages 65 and Older
(%)
  Care Recipient Status
  Probable Dementia     Possible Dementia     No Dementia  
Total caregivers (%) 32.6 15.3 52.2
Estimate (in millions) 5.8 2.7 9.4
Friends or family to help care for person 56.3 58.2 58.0
Goes to support group for people who give care   6.0 2.1 3.7
Used services so could take time away** 21.2 11.8 7.9
Received training to help care for person* 8.9 5.9 4.6
Found financial help for person* 18.2 9.0 12.9
Looked for one or more types of support** 12.2 7.3 5.9
SOURCE: 2011 NSOC; N=1966.
NOTE:
  1. Caregivers who provided help to NHATS participants with self-care, mobility or household activity limitations (for health or functioning reasons); excludes paid non-relatives.

**(*) Receiving or seeking support differs by care-recipient dementia status at p<0.05(p<0.10).

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