Abstract
The number of US adults ages sixty-five and older who are living with dementia is substantial and expected to grow, raising concerns about the demands that will be placed on family members and other unpaid caregivers. We used data from the 2011 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, to investigate the role of dementia in caregiving. We found that among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults. Among older adults who receive help, the vast majority in both community and residential care settings other than nursing homes rely on family or unpaid caregivers (more than 90 percent and more than 80 percent, respectively), regardless of their dementia status. Caregiving is most intense, however, to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient.
The costs and consequences of dementia in the United States are large and will continue to increase over the next few decades as the population ages and growing numbers of adults reach very old age. One recent study estimated that paid services directed at the support of people with dementia amounted to $109 billion in 2010, mainly for nursing home and community-based long-term care.[1] Dementia-related costs were estimated to be $159–$215 billion when the value of unpaid caregiving, largely provided by families, was included.[1]
Epidemiological studies of Alzheimer’s disease and other types of dementia have found that prevalence increases with age, from 14 percent in people ages seventy and older to more than 25 percent in people over age eighty.[2–4] Declines in the rate of cognitive impairment have been documented in US and European populations.[5] However, there is widespread agreement that the overall growth of the older population and increases in the percentage of people living into their eighties and nineties will result in more people living with dementia in the near future.
Caregiving to people with dementia, which is most often provided by family members, is particularly demanding.[6,7] Memory problems, disorientation, and other features of dementia—including Alzheimer’s disease, the most common form of dementia[3]—affect a person’s ability to perform everyday activities, and associated behavioral and psychiatric symptoms pose additional challenges for caregivers [6,8].
The course of dementia frequently extends over many years, and individuals in the late stages of the disease often transition to nursing homes or other residential care settings. Half to two-thirds of nursing home residents have dementia.[9,10] The condition is thought to be equally prevalent in assisted living facilities.[11]
Estimated numbers of family caregivers who assist older adults with disabilities and the types of assistance those caregivers provide have been presented in other studies.[12–14] However, how much of all caregiving to older adults can be attributed to dementia and how the nature of dementia caregiving differs from other caregiving have not been clarified.
This gap is largely due to challenges in dementia surveillance and the lack of available data from population-based surveys. Low rates of dementia diagnosis leave many older adults and their families confronted with dementia-related impairment that has not been formally diagnosed.[15–17] The lack of precise measures that distinguish among different residential settings (for example, an assisted living facility versus the community) has likewise presented a barrier to understanding dementia care outside of traditional community settings. Finally, most epidemiological and national studies of caregiving interview a single “primary” caregiver instead of the broader network of caregivers involved in helping, or they rely solely on the care recipient for information on caregiving.
This analysis draws on two nationally representative studies, the National Health and Aging Trends Study and the National Study of Caregiving, which together overcome many of these methodological challenges. The National Health and Aging Trends Study incorporates performance-based and proxy measures of cognitive function along with reports about physician diagnoses, which together allow for more accurate classification of dementia than reports of diagnosis alone. Information on services available where people live makes it possible to distinguish between traditional community residences and residential care settings that provide supportive services.[18]
We used these data to examine how caring for people with dementia fits within the broader context of all caregiving to older adults. We also present new information on caregiving to older adults in residential care settings and the role of such settings in providing supportive services for persons with dementia.
Study Data And Methods
Data
The National Health and Aging Trends Study is an ongoing national longitudinal study designed to enhance understanding of trends and trajectories of late-life disability.[19] The study’s sample is drawn from the Medicare enrollment file and is nationally representative of Medicare beneficiaries ages sixty-five and older.[20] In round 1 (2011), in-person interviews were conducted with 7,609 people living in the community and in residential care settings other than nursing homes; the response rate was 71 percent.
In the associated National Study of Caregiving, telephone interviews were conducted with 2,007 family and unpaid caregivers to the participants in the National Health and Aging Trends Study who received self-care, mobility, or household activity assistance. Up to five caregivers per recipient could be included, and the sample, when weighted, is nationally representative of caregivers to older adults receiving these types of assistance.[21]
The samples for our analysis consisted of 2,423 adults ages sixty-five and older who received help with self-care, mobility, and household activities and the 1,924 family and unpaid caregivers who provided assistance to these adults.
Measures
A person was classified as having probable dementia using the following criteria: a report of a doctor’s diagnosis of dementia or Alzheimer’s disease; a score indicating likely dementia on a dementia screening instrument administered to proxy respondents;[22] or impairment based on cognitive tests that evaluate memory, orientation, and executive function (with a score of ≥1.5 standard deviations below the mean in at least two domains). Classification into the categories of probable dementia or no dementia based on these criteria corresponds well to a clinical diagnostic assessment.[23] For brevity, we use dementia throughout the article in place of probable dementia.
The National Health and Aging Trends Study collects comprehensive information on how individuals conduct activities of daily living. We examined respondents’ receipt of help in the last month for six self-care or mobility activities (bathing, dressing, eating, using the toilet, getting out of bed, and getting around inside one’s home or building)—hereafter referred to as self-care activities—and of assistance for health and functioning reasons in five household activities (doing laundry, preparing hot meals, shopping for personal items, paying bills or doing banking, and handling medications).
We examined National Health and Aging Trends Study participants’ age, sex, marital status, living arrangement, and residence, distinguishing between residential care other than nursing homes and traditional community living settings. Residential care settings were identified by reports of services available at the place where the participant lived.[24] For adults who lived in residential care, we used information provided by facility staff members to determine the specific level of care (for example, independent living or assisted living) that the study participant received.
Information about caregivers and the nature and intensity of the care they provided was drawn from both data sources. Information was obtained from the National Health and Aging Trends Study about whether each caregiver was paid for assistance. For people in residential care settings, help provided by staff members was considered to be paid help. For family and unpaid caregivers, information about the caregiver’s relationship to the National Health and Aging Trends Study participant, hours of care provided in the last month, and duration of caregiving came from caregiver interviews in the National Study of Caregiving. Hours of care include hours an individual caregiver spent providing any assistance and might include help with activities beyond self-care or household tasks, such as transportation.
Analyses
For all analyses, we used weights that provide nationally representative estimates and take into account differential probabilities of selection and nonresponse. We also used Stata svy commands to incorporate strata and clustering elements of the sample design in tests of significance between groups. Comparisons of proportions and means were based on t tests. All analyses were performed using Stata, version 12.1.
To derive population estimates (in millions), we further adjusted the weighted totals to match, by age group, the Medicare population ages sixty-five and older at the time the sample was drawn. Analyses used either the care recipient or the caregiver as the unit of analysis. In analyses in which the caregiver was the unit of analysis, estimates reflect distributions (for example, types of relationship to the care recipient) across caregivers or mean (for example, hours) per caregiver by the recipient’s dementia status.
Limitations
Our study had several limitations. First, reports of help with activities by study respondents and reports of assistance by caregivers, including hours, are subject to recall bias. However, the recall period of one month in both the National Health and Aging Trends Study and the National Study of Caregiving was selected to reduce errors in recall.
As noted above, the use of multiple assessment criteria, in addition to a report of a diagnosis, to classify individuals as having dementia is a strength of the study. Nonetheless, a second limitation is that this classification is subject to measurement error, given that we relied on self-report of diagnosis and a smaller set of assessments (as is typical in large population-based studies) than would be used in a clinical diagnostic assessment.
Study Results
In 2011, 3.6 million older adults with dementia were in residential settings other than nursing homes (Exhibit 1).[25] Among older adults with dementia who lived in community or residential care settings, 77.2 percent received assistance with self-care or household activities for health and functioning reasons, and 53.1 percent received assistance with self-care. In contrast, only 20.3 percent of older adults without dementia received assistance with self-care or household activities for health or functioning reasons, and only 10.7 percent received help with self-care.
Exhibit 1.
Assistance With Activities Received By Adults Ages Sixty-Five And Older Not Residing In A Nursing Home, By Dementia Status, 2011
| Dementia | No dementia | All | |
|---|---|---|---|
| All older adults | |||
| Number (millions) | 3.6 | 33.4 | 37.0 |
| Percent | 9.7% | 90.3% | 100.0% |
| Type of assistance | |||
| Any self-care activities | 53.1% | 10.7%*** | 14.9% |
| Any household activities | 73.9 | 17.0*** | 22.7 |
| Self-care or household activities | 77.2 | 20.3%*** | 26.1 |
| Older adults receiving help | |||
| Number (millions) | 2.8 | 6.9 | 9.7 |
| Percent | 28.9% | 71.1% | 100.0% |
| Level of assistance for people receiving help | |||
| 3 or more self-care activities | 39.8% | 14.4%*** | 22.0% |
| 1–2 self-care activities | 29.0 | 38.0 | 35.4 |
| Household activities only | 31.2 | 47.5 | 42.7 |
SOURCE Authors’ analysis of data from the 2011 National Health and Aging Trends Study. NOTES Analyses were weighted to produce nationally representative estimates. There were 7,609 people in the study, representing 37.0 million older adults; 1,038 people in the study who were classified as having dementia, representing 3.6 million older adults; 2,423 people in the study who received assistance with self-care or household activities, representing 9.7 million older adults; and 830 in the study who received assistance and were classified as having dementia, representing 2.8 million older adults. Self-care activities are bathing, dressing, eating, using the toilet, getting out of bed, and getting around inside one’s home or building. Household activities are doing laundry, preparing hot meals, shopping for personal items, paying bills or doing banking, and handling medications. Assistance includes any help with self-care or household activities for health or functioning reasons.
p < 0.01
Most older adults with dementia who were not receiving self-care or household activity help did receive help with other activities such as transportation, medical visits, or going outside (data not shown). Of the 8 percent who appeared to have no help, 40 percent lived alone (data not shown). They represent a small, but potentially vulnerable, subset of older community residents.
There were striking differences in the types of assistance provided to older adults according to dementia status. In 2011, more than two out of three older adults with dementia who received assistance had help with self-care, and two out of five were helped with three or more of these activities (Exhibit 1). In contrast, only 14 percent of older adults without dementia received assistance with three or more self-care activities, and 48 percent received help with household activities exclusively.
In all, 9.7 of 37.0 million (26 percent) of older adults in community or residential care settings received help with daily activities (Exhibit 1).[26] The demographic profile of older adults who received help varied by dementia status in several respects. Notably, nearly one in five people with dementia were ninety or older, and about 44 percent were eighty-five or older (Exhibit 2). Consistent with the older age profile of people with dementia, close to half were widowed. Not surprisingly, compared with older adults without dementia, a smaller percentage of people with dementia lived alone (14.3 percent versus 22.2 percent), and a higher percentage lived with a daughter or son (25.9 percent versus 15.0 percent).
Exhibit 2.
Demographic Characteristics Of Adults Ages Sixty-Five And Older Not Residing In A Nursing Home And Receiving Assistance, By Dementia Status, 2011
| Characteristic | Dementia | No dementia | All |
|---|---|---|---|
| Older adults receiving help (millions) | 2.8 | 6.9 | 9.7 |
| Sex | |||
| Male | 34.2% | 31.0% | 32.0% |
| Female | 65.8 | 69.0 | 68.0 |
| Age (years) | |||
| 65–74 | 17.0 | 38.7*** | 32.2 |
| 75–84 | 39.4 | 37.0 | 37.7 |
| 85–89 | 24.9 | 15.9 | 18.6 |
| 90 or more | 18.7 | 8.4 | 11.5 |
| Marital status | |||
| Married | 37.5 | 46.8*** | 44.0 |
| Widowed | 47.1 | 36.9 | 39.9 |
| Other unmarried | 15.4 | 16.3 | 16.1 |
| Living arrangement | |||
| Alone | 14.3 | 22.2*** | 19.8 |
| With spouse only | 22.1 | 34.6 | 30.9 |
| With spouse and others | 10.5 | 8.8 | 9.3 |
| With daughter or son | 25.9 | 15.0 | 18.3 |
| With other relatives or nonrelatives | 7.3 | 4.3 | 5.1 |
| Place of residence | |||
| Residential care | 19.9 | 15.1 | 16.6 |
| Independent living | 4.7 | 6.9*** | 6.3 |
| Assisted living | 15.2 | 8.2 | 10.3 |
SOURCE Authors’ analysis of data from the 2011 National Health and Aging Trends Study. NOTES Details about sample size and weighting are in the Notes in Exhibit 1. “Assistance” is assistance with self-care or household activities for health or functioning reasons, as explained in the Notes to Exhibit 1. “Residential care” is care in a facility other than a nursing home. “Independent living” in residential care is a level of care that typically does not offer personal care or medication management.
p < 0.01
In the population not living in nursing homes, 20 percent of people with dementia who received self-care or household activity help lived in residential care settings, compared to 15 percent of care recipients without dementia (Exhibit 2). However, among people in residential care, about three-quarters of those with dementia (15.2 percent out of 19.9 percent) were in assisted, as opposed to independent, living levels of care. In contrast, the proportion was about half (8.2 percent out of 15.1 percent) for people without dementia.
Virtually all of the 8.1 million older adults in community settings who received assistance with self-care or household activities had help from family or other unpaid caregivers, regardless of dementia status (Exhibit 3). However, people with dementia were more likely than those without dementia to have three or more caregivers (29.5 percent versus 23.0 percent) and to receive paid help (30.1 percent versus 20.5 percent).
Exhibit 3.
Sources Of Assistance To Adults Ages Sixty-Five And Older Not Residing In A Nursing Home And Receiving Assistance, By Dementia Status, 2011
| Dementia | No dementia | All | |
|---|---|---|---|
| Older adults receiving help | |||
| Number (millions) | 2.8 | 6.9 | 9.7 |
| Percent | 28.9% | 71.1% | 100.0% |
| By residential status (millions) | |||
| Community | 2.2 | 5.9 | 8.1 |
| Residential care | 0.6 | 1.0 | 1.6 |
| Older adults in the community receiving assistance from: | |||
| Family and unpaid caregivers | |||
| 0 | 2.2% | 4.4%*** | 3.8% |
| 1 | 32.5 | 39.3 | 37.4 |
| 2 | 35.8 | 33.3 | 34.0 |
| 3 or more | 29.5 | 23.0 | 24.8 |
| Paid caregivers | 30.1 | 20.5*** | 23.2 |
| Older adults in residential care receiving assistance from: | |||
| Family and unpaid caregivers | |||
| 0 | 14.0% | 19.8% | 17.7% |
| 1 | 41.9 | 41.0 | 41.3 |
| 2 | 29.8 | 23.6 | 25.8 |
| 3 or more | 14.3 | 15.6 | 15.1 |
| Paid caregivers | 92.6 | 92.8 | 92.7 |
| Family and unpaid caregivers | |||
| Number (millions) | 5.8 | 11.3 | 17.1 |
| Percent | 34.0% | 66.0% | 100.0% |
| By residential status (millions) | |||
| Community | 4.8 | 9.9 | 14.7 |
| Residential care | 1.0 | 1.4 | 2.4 |
| Family and unpaid caregivers providing assistance to adults in the community: | |||
| Relationship to older adult | |||
| Spouse | 17.2% | 26.1%** | 23.2% |
| Daughter | 35.2 | 26.4 | 29.2 |
| Son | 17.0 | 17.3 | 17.2 |
| Other family or unpaid caregiver | 30.6 | 30.2 | 30.4 |
| Duration of care (years) | |||
| 1 or less | 11.9% | 17.0%** | 15.4% |
| 2–3 | 31.1 | 23.2 | 25.7 |
| 4–5 | 18.5 | 21.3 | 20.4 |
| 6 or more | 38.4 | 38.5 | 38.5 |
| Family and unpaid caregivers providing assistance to adults in residential care: | |||
| Relationship to older adult | |||
| Spouse | 7.8% | 7.8% | 7.8% |
| Daughter | 34.6 | 24.5 | 28.7 |
| Son | 30.3 | 23.2 | 26.2 |
| Other family or unpaid caregiver | 27.3 | 44.5 | 37.3 |
| Duration of care (years) | |||
| 1 or less | 14.5% | 19.4%** | 17.4% |
| 2–3 | 11.3 | 27.2 | 20.6 |
| 4–5 | 26.8 | 24.0 | 25.1 |
| 6 or more | 47.4 | 29.4 | 36.9 |
SOURCE Authors’ analysis of data from the 2011 National Health and Aging Trends Study (for numbers of caregivers and paid and unpaid help) and the 2011 National Study of Caregiving (for caregiver relationship and duration of care). NOTES Details about sample size and weighting for estimates related to older adults receiving assistance are in the Notes in Exhibit 1. Among older adults receiving assistance in the study, 2,109 were in the community and 314 were in residential care facilities other than nursing homes. Population estimates, shown in the table, are 8.1 million and 1.6 million, respectively. Analyses from the National Study of Caregiving were weighted to produce nationally representative estimates of family and unpaid caregivers to persons receiving assistance. There were 1,924 caregivers in the study, representing 17.1 million caregivers nationally. Of these, 1,739 were caring for someone in the community and 185 for someone in residential care, representing 14.7 million and 2.4 million caregivers, respectively. “Assistance” is assistance with self-care or household activities for health or functioning reasons, as explained in the Notes to Exhibit 1.
p < 0.01
p < 0.05
Among the 1.6 million older adults in residential care settings, the numbers of family and unpaid caregivers were similar for those with and without dementia. Over 80 percent of older adults in residential care settings had at least one family or unpaid caregiver, regardless of dementia status. In addition, the vast majority received paid help, as would be expected. (A small percentage reported no paid assistance in these settings. Since the settings include continuing care retirement communities, some residents may not use the self-care and health-related household activity assistance that is available.)
Among the 17.1 million caregivers who provided help to older adults with self-care or household activities, about one-third assisted someone with dementia (Exhibit 3). Among caregivers to older adults living in the community, relationship to care recipient and duration of assistance both differed by dementia status. Thirty-five percent of caregivers to older adults with dementia in the community, but only 26 percent of caregivers to those without dementia, were daughters. In contrast, 17 percent of caregivers to older adults with dementia, but 26 percent of caregivers to those without dementia, were spouses.
Regardless of the dementia status of the care recipient, over half of the caregivers to older adults in the community provided help for four or more years (Exhibit 3). However, the proportion of those who provided care for one year or less was somewhat higher among caregivers to those without dementia, compared to caregivers to those with dementia.
Of the 2.4 million family and unpaid caregivers who assisted an older adult living in a residential care facility, nearly half helped someone with dementia (Exhibit 3). In these settings, differences in caregiver relationship to the care recipient were not significant by dementia status. However, differences in caregiving duration were large. Forty-seven percent of caregivers to older adults with dementia living in residential care settings had provided assistance for six or more years, compared with 29 percent of caregivers to older adults without dementia in these settings.
Altogether, caregivers provided 1.3 billion hours of help per month, of which 41 percent was directed to older adults with dementia (Exhibit 4). Regardless of the recipient’s dementia status, about three-fifths of the hours were provided by spouses and daughters, and two-thirds were provided by caregivers who lived with the care recipient. More than 90 percent of all hours were provided to older adults living in the community.
Exhibit 4.
Hours Of Assistance Per Month From Family And Unpaid Caregivers To Adults Ages Sixty-Five And Older Not Residing In A Nursing Home, By Dementia Status, 2011
| Total hours | Mean hours per caregiver | |||
|---|---|---|---|---|
| Dementia | No dementia | Dementia | No dementia | |
| Caregiving hours | 40.9% | 59.1% | 91.7 | 67.5*** |
| Relationship of caregiver | ||||
| Spouse | 24.6 | 34.5 | 145.1 | 97.6* |
| Daughter | 38.9 | 25.3 | 101.7 | 65.0*** |
| Son | 17.0 | 15.8 | 80.4 | 59.2* |
| Other family and unpaid | 19.5 | 24.4 | 59.6 | 51.9 |
| Caregiver lives with recipient | ||||
| Yes | 66.7 | 65.8 | 142.6 | 96.5*** |
| No | 33.3 | 34.2 | 53.5 | 42.9 |
| Caregiver assists someone living in: | ||||
| Community | 91.5 | 95.0 | 101.6 | 73.2*** |
| Residential care | 8.5 | 5.0 | 44.6 | 27.3 |
SOURCE Authors’ analysis of data from the 2011 National Health and Aging Trends Study (for living arrangements) and the 2011 National Study of Caregiving (for hours of care and caregiver relationship). NOTES Details about sample size and weighting are in the Notes in Exhibit 3. Hours of help (reported by caregivers) are total hours of assistance provided, including for assistance with activities other than self-care or household activities, such as transportation. Total hours reported were 1.3 billion (weighted estimate) per month for caregivers to all older adults.
p < 0.10
p < 0.01
The intensity of help, measured by mean monthly hours of assistance per caregiver, was substantially greater for a daughter who helped a parent with dementia, compared to a daughter who helped a parent without dementia (102 hours versus 65 hours; Exhibit 4). Differences for son and spouse caregivers were in the same direction. Caregivers who lived with older adults with dementia provided care of significantly greater intensity than those who lived with older adults without dementia (143 hours versus 97 hours).
In both community and residential care settings, caregiving intensity was also greater for those who cared for an older adult with dementia than for those caring for an older adult without dementia (Exhibit 4). Regardless of dementia status, however, the mean hours per caregiver were substantially higher if that person cared for an older adult in the community instead of in residential care. Caring for an older adult with dementia in a residential care setting averaged 45 hours per month, compared to 102 hours for an adult with dementia in a community setting, a difference of 57 hours per month.
Discussion
Our results isolated the substantial role of dementia in late-life family caregiving. Among older adults not residing in nursing homes, 9.7 percent (Exhibit 1), or about one in ten, have dementia, but a striking one-third of all late-life family and unpaid caregivers who are engaged in helping an older person with self-care or household activities are assisting an older person with dementia (Exhibit 3). Furthermore, 41 percent of all hours of care provided by family and unpaid caregivers are directed to assisting people with dementia (Exhibit 4; additional details are available in the online Appendix).[27]
We found that in 2011, 5.8 million caregivers were assisting older adults with dementia (Exhibit 3) and provided 532 million hours of help per month (40.9 percent of 1.3 billion hours; Exhibit 4), or over 6 billion hours a year.[28] Estimates of numbers of caregivers and hours of caregiving to older adults vary depending on what activities are included under the rubric of caregiving.[29] Our analyses focused on older adults who needed assistance with basic activities of daily life, both self-care and household activities, and drew on information from two linked nationally representative studies of older adults and the caregivers who assisted them with daily activities.
People with dementia receive assistance across a spectrum of settings. While most people with dementia live in the community, about one-third live in some type of residential care setting, either a nursing home (assuming two-thirds of nursing home residents have dementia)[9,25] or another type of residential care (Exhibit 2). As nursing home residence among people ages sixty-five and older who need long-term services and supports continues to decline,[30] residential care alternatives for providing these services have grown.[31] This change may be contributing to an overall increase in the residence by people with dementia in such settings.
Understanding who is caring for older adults with dementia in the community, and at what level of effort, is an important starting point for supporting caregivers. Not surprisingly, we found that daughters play an important role in the care of older adults. This is especially true in the case of older adults with dementia, given the reduced availability of spouse caregivers.
In addition, however, compared to caring for older adults without dementia, the overall level of effort (in terms of hours) in caring for those with dementia is significantly higher, for all caregivers and for daughters and spouses in particular. The greater intensity of effort is likely a consequence in part of high levels of self-care assistance to people with dementia, over two-thirds of whom receive this type of help.
All caregivers who live with the recipient of care provide more hours of assistance than others, but the intensity of care is much higher for caregivers who live with people with dementia than for those who do not. Living with a daughter or son also is more common among care recipients with dementia than those without dementia. These findings point to the substantial level of effort required of caregivers who provide help with self-care or routine household activities to older adults with dementia in community settings.
Our findings provide new insights into family and unpaid caregiving in residential care settings other than nursing homes. Other studies, mostly focused on nursing home residents, have documented continued, if varying, levels of family involvement in caring for older people who enter long-term care settings.[32] Our findings indicate that more than 80 percent of older residents in residential care settings other than nursing homes receive assistance in self-care or household activities from family or friends. The lower intensity of caregiving to people in residential care, as opposed to those in community settings, is not surprising, given that residential care is designed to provide long-term services and supports to residents.[34]
A primary objective of caregiver support programs is to enable people who need long-term services and supports to continue to reside in the community. However, caregivers also need assistance with decisions about care recipients’ transitions to residential care settings.
Our findings suggest that the caregiving trajectory for people who assist those with dementia is often long. Nearly half of the caregivers to older adults with dementia in residential care settings had been providing care for six or more years. It is likely that most of these caregivers started providing help while the older adult was living in the community. Given the growth of residential care alternatives and the expected increases in the number of older adults living with dementia, ways to support families in making decisions about care settings, including whether and when to transition from community to residential care settings, will be needed.
Conclusion
This study confirms the significant and enduring involvement of family and other unpaid caregivers in the care of older adults with dementia. Using reports from caregivers, we were able to assess the number of hours that are spent in giving these older adults necessary help with core activities of daily living. Our findings also extend existing knowledge by documenting that family and other unpaid caregivers’ efforts typically persist as older adults transition from community to residential care settings. In light of demographic trends and increases in the numbers of older adults with dementia in the coming years, efforts to better monitor and support older adults and their family caregivers will only grow in importance.
Acknowledgment
Funding for this research was provided by the National Institute on Aging through a cooperative agreement (Grant No. U01 AG032947) and by the Office of the Assistant Secretary for Planning and Evaluation in the Department of Health and Human Services. The authors thank Maureen Skehan for her programming assistance in support of this analysis.
Notes
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