Journal of Gerontological Nursing

CNE Article 

Younger Residents in Nursing Homes

Diane I. Persson, PhD; Sharon K. Ostwald, PhD, RN

Abstract

Younger residents in nursing facilities represent a growing but little recognized population. This study examined a group of younger residents, describing issues identified by residents and facility staff and identifying strategies that might improve their quality of life. In this study, the majority of younger residents were men with significant physical and mental health deficits, who spent most of their time alone or watching television. Residents wanted a greater variety of relevant recreational activities and more meaningful relationships with family, staff, and other residents. Staff believed nursing facilities were not designed for younger residents, resulting in unmet psychosocial and recreational needs.

Abstract

Younger residents in nursing facilities represent a growing but little recognized population. This study examined a group of younger residents, describing issues identified by residents and facility staff and identifying strategies that might improve their quality of life. In this study, the majority of younger residents were men with significant physical and mental health deficits, who spent most of their time alone or watching television. Residents wanted a greater variety of relevant recreational activities and more meaningful relationships with family, staff, and other residents. Staff believed nursing facilities were not designed for younger residents, resulting in unmet psychosocial and recreational needs.

Dr. Persson is Director, Long-Term Care Ombudsman Program, and Dr. Ostwald is Professor and Isla Carroll Turner Chair in Gerontological Nursing, School of Nursing, Center on Aging, University of Texas Health Science Center, Houston, Texas.

The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity. The authors appreciate the support of the Isla Carroll Turner Friendship Trust. The authors also thank Carmen Castro, Celia Schulz, Nancy Bergstrom, and Stan Cron for their contributions to the manuscript. The Ombudsman Program is supported in part by the City of Houston, acting as the Harris County Area Agency on Aging and the Texas Department of Aging and Disability Services.

Address correspondence to Diane I. Persson, PhD, Director, Long-Term Care Ombudsman Program, School of Nursing, Center on Aging, University of Texas Health Science Center, 6901 Bertner SON 611, Houston, TX 77030; e-mail: diane.persson@uth.tmc.edu.

Received: December 08, 2008
Accepted: July 07, 2009
Posted Online: October 09, 2009

While the typical nursing home resident is elderly, relatively little is known about residents who are younger than age 65. Our ability to describe this population in any detail is limited, although it is commonly held that they differ from older residents and vary in diagnoses and need for assistance. It has been suggested that as large psychiatric hospitals are disappearing, a growing number of younger residents with histories of substance abuse, mental illness, and permanent disabilities live in nursing homes.

Background

The percentage of residents in nursing homes who are younger than age 65 is increasing; estimates vary from 10% to 23%. Fries et al. (2005) reported that approximately 10% of nursing home residents are younger than 65 (although the percentage is increasing). In New York State from 1998 to 2002, the number of younger residents grew from 9.8% to 12.5% (Healy, 2003), and in Ohio, from 1994 to 2004, the percentage doubled from 7% to 14% (Mehdizadeh & Applebaum, 2005). First quarter 2008 data from the Centers for Medicare & Medicaid Services indicate 14% of residents are younger than 65, ranging from 6.8% in Vermont to almost 23% in Illinois.

The literature reveals that residents younger than 65 in nursing homes are substantially different from elderly residents. Fries et al. (2005) found that while 13 diagnostic clusters describe nearly 85% of residents, the youngest population has more diagnoses related to mental retardation and developmental disabilities. Younger residents also have a higher prevalence of hemiplegia and quadriplegia, especially related to trauma, whereas older residents have an increasing prevalence of neurological diagnoses, such as stroke and Parkinson’s disease (Fries et al., 2005). Although younger adults comprise only 10% to 20% of nursing home residents, they are overrepresented when obesity is considered. Obesity is recognized as increasingly prevalent in nursing home residents, a factor that complicates their care. Lapane and Resnik (2005) reported that nearly 30% of obese residents (body mass index greater than 35 kg/m2) were younger than 65.

In 1992, Weingarden and Graham reported that young residents with spinal cord injury had high rates of rehospitalization and unmet psychosocial needs. A more recent study of young adults with acquired brain injury in Glasgow nursing homes found that proactive, routine reviews of medical, rehabilitation, and medication needs were rare (McMillan & Laurie, 2004). Macdonald, Carpenter, Box, Roberts, and Sahu (2002) raised questions about the adequacy of policy, staffing, and training in facilities with non-elderly residents.

Although few studies in the United States address the public health implications of younger residents in facilities for older adults, Australian studies have given this considerable attention. Researchers in Australia found that a majority of nursing homes have difficulty adapting to the social and recreational needs of younger residents with intellectual disability (Bigby, Webber, Bowers, & McKenzie-Green, 2008) and that the isolation and exclusion from recreational and social activities experienced by this group underlines the need for community-based living options (Winkler, Farnworth, & Sloan, 2006). Other researchers concluded that nursing facilities were inappropriate places to care for younger residents with acquired brain injury and that they did not meet the needs of these residents (Cameron, Pirozzo, & Tooth, 2001; O’Reilly & Pryor, 2002). Smith (2004) reported that while younger people living in nursing facilities tended to accept that, under the circumstances, they had no alternatives, community advocacy groups in Australia, such as Young People in Nursing Homes National Alliance ( http://www.ypinh.org.au), seek more choice and a greater range of accommodation choices for this population.

Study Purpose

The current study grew out of nursing home advocates’ observations that younger residents express more concerns than older residents about the dearth of suitable activities. While they enjoy the staples such as birthday celebrations, Bible study, and bingo, they want more. Very little is known about this growing population in U.S. nursing homes. Thus, the purpose of this study was to describe the demographic and functional characteristics of residents younger than age 65 in eight Texas nursing homes, examine the needs and issues described by these residents and by nursing facility staff, and identify strategies and interventions that might improve these residents’ quality of life.

Method

Study Design

This small mixed methods study abstracted demographic and functional data from the Minimum Data Set (MDS) in the residents’ charts and interviewed residents younger than 65 and staff from eight nursing facilities. Residents had the right to participate in one part of the study and not the other. For example, they could permit a chart audit but refuse to participate in an interview.

Ethical Issues

Residents, their legal guardians, and nursing facility staff were informed of the study by nursing supervisors. If potential participants expressed interest, they were approached by the researchers. After the study was explained, written informed consent was obtained from the residents or their legal guardians and from facility staff. All residents and staff who participated in the interviews received a $5 coupon to a discount retail store. Approval to conduct the study was obtained from the University’s Committee for the Protection of Human Subjects. Facilities participating in the study provided a letter of support.

Setting

All nursing homes were for-profit facilities certified by Medicare and Medicaid. Of the eight facilities, six are part of corporate chains. The facilities range in size from 58 to 200 beds, with an average of 130 beds. The facilities are located in different areas of the county, but all were constructed more than 30 years ago. These are old physical plants with primarily a Medicaid population. The state has a quality reporting system that assigns a score to every nursing facility. Of a possible maximum score of 100, the Texas statewide average for nursing facilities that accept Medicare and Medicaid is 60. Scores of the facilities participating in this study ranged from 46 to 73, with an average of 55.

Sample

Nursing home residents in all eight facilities who were between ages 18 and 64 were invited to participate. Of the 184 available residents, 136 residents (or their legal guardians) agreed to have data extracted from the MDS 2.0, for a participation rate of 74%. These residents were then invited to participate in focus groups. Fifty-one (37.5%) of the 136 residents agreed to be interviewed. Forty-three were unable to participate in the focus group because of preference or availability and so were interviewed individually in a quiet private place. Residents made the decision to participate in a focus group or individual interview. The 85 residents who did not participate were primarily unable or unwilling to be interviewed.

Nursing facility staff were told of the opportunity to attend a focus group about their experiences with nursing facility residents younger than age 65. Inclusion criteria for nursing facility staff were having worked at the facility for at least 6 months and agreeing to participate. Staff included administrators, activity directors, nurses, and certified nursing assistants, as well as a social worker and dietary and housekeeping staff.

Minimum Data Set Data

The MDS 2.0 is a data collection instrument mandated to be used to collect data on all nursing facility residents at admission to the nursing facility and at quarterly intervals. The MDS is completed by a nurse and serves as the basis for care planning in nursing facilities. The data abstracted from the MDS for this study included demographic information (i.e., gender, age, race/ethnicity, marital status, education, residential history), performance of activities of daily living (ADLs), disease diagnoses, and care requirements.

Resident Interviews

A set of questions/prompts were developed to obtain information about the residents’ experiences in the nursing facility. Examples of open-ended questions/prompts included:

  • What is it like being a younger resident here?
  • Describe your typical day.
  • How easy or difficult is it for you to interact with older residents?
  • What activities do you wish the facility would provide?

The same questions were asked in the focus groups and individual interviews.

Nursing Facility Staff Interviews

Open-ended questions/prompts were developed to obtain information about staff members’ perceptions of younger residents; how they differed from older residents; what needs they had, especially related to activities; and how well they believed staff were meeting these residents’ needs. Twenty-three staff were interviewed in focus groups, and 2 were interviewed individually.

Data Collection

Quantitative and qualitative data were collected by a researcher with experience in chart auditing and the conduct of focus groups and individual interviews with people with disabilities. MDS data were collected on site from medical records and recorded on paper forms developed specifically for that purpose. All forms were coded with an identification number so no identifying data were removed from the nursing facility. Data were entered into a Microsoft® Excel® computer program, and paper forms were stored in a locked cabinet. Resident and staff focus groups and interviews were conducted in a private area and lasted 30 to 60 minutes. The interviews and focus groups were audio recorded and transcribed without identifiers. The transcripts were checked for accuracy against the audio recordings and were stored in locked cabinets.

Data Analysis

Data abstracted from the MDS were analyzed using SPSS version 9. Descriptive statistics were calculated to describe the sample, and chi-square analysis was used to test differences in characteristics by age group. Content analysis was used to analyze the qualitative data, consisting of data reduction, data display, and conclusion drawing or verification. This is a process of reflection, deconstruction of data into codes, and reconstruction into themes and patterns (Denzin & Lincoln, 2000; Miles & Huberman, 1994). Procedures used to verify themes included checking for representativeness, noting patterns, weighting the evidence, checking the meaning of outliers, and looking for negative evidence. Rigor and credibility were ensured by triangulation of data sources and peer debriefing. In addition, data obtained from the residents were triangulated with data obtained from the nursing staff to allow for a more complete understanding of the residents’ experiences from different perspectives.

Results

Population Characteristics

Demographic characteristics of the 136 residents ages 18 to 64 are shown in Table 1. Their mean age was 51.3 (SD = 8.86 years, age range = 23.6 to 64.8). Sixty-six percent of the residents were men, more than 50% were Black, and 78% were never married or divorced/separated. Seventy percent of the younger residents were admitted to the nursing home from acute, psychiatric, or rehabilitation hospitals, and only 26% were legally and financially responsible for themselves.

Demographic Characteristics of Younger Nursing Home Residents

Table 1: Demographic Characteristics of Younger Nursing Home Residents

The diseases that characterized younger residents were varied. Strokes accounted for 34% of the sample, 24% had seizure disorders, 19% were hemiplegic, and 20% were diagnosed with schizophrenia or bipolar disorders. While other medical conditions, such as hypertension (49%), depression (32%), diabetes (32%), anemia (24%), and dementia (20%) existed in this population, it was difficult to identify from the data what specific diseases result in younger residents being admitted to a nursing home.

Functional Characteristics

Seventy-six percent of the residents had memory problems, and 68% had difficulty with decision making. In this sample, 66% had short-term memory problems, and 58% had long-term memory problems. In terms of cognitive skills for daily decision making, 18% were consistent/reasonable, 34% had difficulty in new situations only, 34% had poor skills, and 14% rarely or never made decisions.

Table 2 provides results related to younger residents’ performance of ADLs. Of note, although 57% could eat independently, 44% were either completely dependent with walking/wheeling or did not walk/wheel at all. Similarly, 43% were completely dependent in bathing. In addition, only approximately half of the sample was continent of bowel (49%) and bladder (51%).

Younger Residents’ Level of Assistance in Performing Activities of Daily Living (N = 136)

Table 2: Younger Residents’ Level of Assistance in Performing Activities of Daily Living (N = 136)

The younger residents in this study tended to be isolated: 48% spent most of their time alone or watching television, only 42% had daily contact with relatives and/or close friends, and few (19%) were involved in group activities. The most common activities were watching television, listening to music, visiting, and participating in religious activities. Less than half went outdoors or participated in exercise or sports.

Potential for Discharge

The potential for discharge is a clinical determination made by the nurse who completes the MDS and differs from the desire to be discharged. Most younger residents (70%) were admitted from an acute care setting. Prior to their admission, the majority had lived with others. In most cases (57%), a family member was responsible for the resident; 16% had a legal guardian. This population has little potential for discharge as clinically determined. However, it is interesting that only 23% of the residents expressed a desire to return to the community, and only 7% have a support person who is positive toward discharge. Not surprisingly, 82% are not projected to have a short stay in the nursing home facility.

Relationship Between Age and Resident Characteristics

Chi-square analysis was used to test for significant relationships between age and functional characteristics, desire to return to the community, family support for discharge, and predicted duration of stay in the nursing home facility. As shown in Table 3, there were no significant differences in these characteristics by age group.

Relationship Between Resident Age and Characteristics that Influence Potential for Discharge (n = 135)

Table 3: Relationship Between Resident Age and Characteristics that Influence Potential for Discharge (n = 135)

Experiences of Residents

Residents’ responses to the questions/prompts varied and indicated this is not a homogeneous population. While some participants tended to accept that, under the circumstances, they had no alternative to living in a nursing home facility, others longed to return to their living arrangement prior to admission, which usually was an apartment or with family. Although the group was not homogeneous in their experiences, four themes emerged: Regimentation of Life, Activities Give You Freedom, Being a Captive, and Our Life Slices Are Very Different.

Regimentation of Life. The residents agreed that “life doesn’t vary a great deal because things here are kind of regimented.” They described days that were very much alike: breakfast, a morning activity or free time, lunch, an afternoon activity, dinner, and television before bed. A 62-year-old Black stroke survivor said, “I wake up, I eat, and I sleep.” A 55-year-old White woman with renal failure and schizophrenia shared similar sentiments: “I get up and brush my hair and put on makeup and wait for breakfast.… Then I just walk around and sit out-side.… And then next thing is lunch, same story. Then dinner.”

Activities Give You Freedom. Residents expressed the importance of activities as giving “a sense of freedom.” Some residents indicated they enjoyed activities provided by the facility, such as, bingo, dominoes, and board games. One resident said, “So I mostly try to revolve myself around the activities they have here.” Another stated, “You’re not really building a bridge or nothing, but at the same time you’re killing time, you know?” Most residents interviewed expressed a desire for a greater variety of activities, such as table tennis, pool, baseball, quilting, and dancing. Not all suggestions were realistic. For example, a 59-year-old Black man with hemiplegia said, “I wish they had a football team. And I could be a player.” Music, especially bringing in entertainers, was a popular request. As one resident said, “There was an occasion one time when we sung along with them…and that’s pretty good. It eliminates the depression.”

Residents interviewed in a group indicated they wanted to have more outings such as visiting the zoo, going fishing, seeing a movie, or going on a picnic. The destination did not matter as much as the idea of going somewhere outside the facility. A small number had family and friends who visited them, occasionally taking them out for dinner, and a few engaged in activities outside the facility, such as taking a computer class. Most reported spending several hours per day in their rooms watching television. One 61-year-old Black man with cardiovascular disease and seizures said, “I’m mostly in my room. I don’t like to really float around too much. So I got all the little toys I need, so I stay in my room most of the time.”

Being a Captive. Although many younger residents recognized they probably would not return to the community, some expressed feelings of being trapped and depressed. Residents made comments such as, “This place here…makes you feel like you’re a captive” and “It’s hell [to live here].” Another said, “At my age, if I don’t get out of here real soon, it’s gonna be too late.” Many residents expressed feelings of depression, resulting from personal reflection, as well as aspects of the environment. Some felt depressed by the overwhelming changes that had occurred in their lives. One said, “I have done so much in my life and been so many places. I miss my work, and I miss my friends, and I miss my freedom. There’s nothing I can really put my finger on, you know, it’s just hard to be here.”

Our Life Slices Are Very Different. Residents described how family relationships were influenced by their living arrangements and talked about children, spouses, and siblings. One said, “I see my son about once a year. I see my aunt that raised him more, and she comes by and checks on me.” Relationships with other residents, when they existed, were either in the form of friendships or empathetic understanding. Younger residents realized their lives were different from the older residents. One 62-year-old White man with chronic obstructive pulmonary disease and a history of alcoholism said, “We don’t have a lot of common ground. Our life slices are very different you know,” and another said, “It’s hard. They just kind of want to be by themselves.”

Other residents, however, talked about helping the older residents. One woman said, “We all try to be a family here.” Another younger resident said he calls an older resident’s daughter every day at 4:00 p.m., “’cause she wants me to and…it’s just something nice to do.” He went on to discuss how difficult it was to develop friendships with older residents and have them die: “And she passed away due to a heart attack. I didn’t get to say good-bye or anything like that. And those things are tough. You have a lot of people who pass away here. And that never goes away.”

Perceptions of Staff

Staff were asked their perceptions of how the needs and challenges of working with younger residents differed from those of older residents and what strategies they had found effective. Three themes were identified: It’s a Different Population, Providing Four Seasons® Services on a Motel 6® Budget, and It Takes a Community.

It’s a Different Population. A consistent theme was that younger residents were “just a different population,” and nursing facilities were not set up to care for them. Staff identified the residents’ needs for more privacy, their own rooms, and to be with other residents in their own age group. Staff observed differences from dietary preferences (more pizza and hot dogs) to the use of cell phones, as well as different kinds of activities. Staff agreed with residents’ perceptions that music (rock, blues, and jazz) was important, as were outside activities, such as movies and sporting events. One staff member encouraged younger residents to “adopt” an older resident and take them to activities or the dining room. Several staff mentioned the sexual needs of this group: “She likes to talk about sex all of the time. They have a need that we don’t seem to be meeting. It’s hard for some of them to adjust.”

Four Seasons Services on a Motel 6 Budget. Staff believed the greatest challenge in caring for younger residents was the lack of resources. One nurse observed, “The public is asking us to provide the ‘Four Seasons’ services, but we are not even paid the ‘Motel 6’ rate.” Younger residents become bored more easily and demand a greater variety of activities. One nurse called them her “now, now, now” group because they were less patient, more likely to be up throughout the day, and demanded more attention.

Addressing the psychological needs of younger residents was also a concern. Younger residents with HIV, gunshot wounds, bipolar disorders, brain injury, and spinal cord injuries presented different care needs. Some staff noted that when mental health facilities started closing beds, more young residents with a long history of institutional care started entering long-term care facilities. Staff also believed the residents’ lack of trust made it more difficult to deliver high-quality services. One staff member said, “I think they have a lack of trust because they were placed in a nursing home. So they don’t trust anybody anymore because they ended up in a nursing home. That’s not where they wanted to be.”

It Takes a Community. Although most staff would agree that “we haven’t really found the right approach” in caring for younger residents, the most effective strategy was learning more about the residents, talking to them, and listening to them: “Sometimes, they just want to talk. They don’t want to do, they want to talk. And you’ve got to have at least 15 minutes to sit there and listen to their wants and their needs.” Staff were concerned they did not always have the time, the patience, or the training necessary to meet the needs of the younger residents: “If you don’t have the patience, or you can’t redirect them, it’ll be frustrating.”

Staff members frequently stated that nursing staff are better prepared to deal with elderly residents. The closeness in age may also present difficulties for some staff members. Several staff commented that, unlike older residents, they had more in common with the younger residents and identified with them more: “I see a lot of 40- and 50-year-old people having strokes and having this and that. I guess it’s just a scary sight for me, ’cause I’m a younger person and it’s hard to deal with somebody my age.” The different resident needs, the higher demands, and the staff members’ perception of less training increase the need for involvement of the larger community in care of these residents. One staff member expressed the feelings of many when she said, “Our experience is, you know, we cannot do it by ourselves, alone. We need assistance from outside sources—community, family, and other residents in the nursing home.”

Triangulation of the Data

The quantitative data extracted from the MDS, and the qualitative data obtained from the younger residents and the nursing staff caring for them collaborated each other. Younger residents have different physical and psychological needs, require a different kind and intensity of services, and are not perceived by themselves or by staff to “fit” in the nursing facility, which is organized to meet the needs of a frail older adult population.

Discussion

A review of the demographic and functional characteristics of the younger nursing facility residents, as well as interviews with them and the facility staff, present a consistent picture of individuals who live in a place that is not well suited to their developmental needs. The findings are consistent with the work of O’Reilly and Pryor (2002) and Cameron et al. (2001) who concluded that nursing facilities in Australia were not appropriate to care for younger adults with acquired brain injuries. In this study, younger residents were more likely to have psychiatric, developmental, or trauma-related diagnoses, and to be admitted to the nursing home facility from a hospital (acute, psychiatric, or rehabilitation) with little potential for discharge from the nursing home.

It is somewhat surprising that less than one quarter of the younger residents in this study indicated a desire to return to the community. This suggests the participants tended to resign themselves to the fact that, under the circumstances and given their personal condition, they had no alternative to living in a nursing facility. While some residents were vocal in what they would like to be different, others were unable or unwilling to articulate what aspects of their care they would like to be different. Many felt resigned to their situation. This is consistent with Smith (2004), who concluded that young residents in Australia tend to accept that they have no alternatives.

Therefore, it would not be surprising if younger residents expressed feelings of depression and lack of trust in others. Although more than 50% had lived with others, primarily families, before their nursing home admission, less than 12% had a person in the community who was supportive of their discharge. Much of this lack of support may be explained by the characteristics of these residents (i.e., battling addiction), having spent significant time in psychiatric hospitals, and dependence in ADLs. More than half of the residents did not have intact cognitive function, and only 18% were capable of making consistent and reasonable decisions on their own behalf.

Recreation was frequently an issue for these younger residents. In most instances, the activities provided in the nursing home were considered limited. Playing bingo, going to church, and watching television did not provide the variety many wished. The issue of age-suitable music, hobbies, and more active recreation is clearly a concern. It appears that the isolation of many of the younger residents in this study is related to the availability of appropriate activities. Bigby et al. (2008) reported that nursing homes in Australia also had difficultly adapting to the social and recreational needs of younger residents with intellectual disabilities.

Living in a nursing home facility creates relationship issues for younger residents. Although these relationships are not always specific to younger people, they were often experienced in ways unique to their age group. Family relationships were influenced by living in a long-term care facility where friends and children were reluctant to visit. Because the environment of a nursing home facility does not lend itself to visits by younger people, the person living there experiences increased social isolation. Being younger resulted in different and sometimes threatening relationships with staff, a situation that was noted more by staff than residents.

The residents in this study had significant deficits in memory and performance of ADLs. The conditions that result in nursing home placement of younger residents varies greatly and appears to be a combination of significant physical and/or cognitive disability or inadequate social and community supports to maintain them in an alternative environment. Options for this population, given the current environment, appear limited. Winkler et al. (2006) asserted that the isolation and exclusion younger residents experience argues for community-based placements. Providing alternative living situations for young adults with disabilities will take strong support from family and community advocates and changes in policy that provide alternatives to nursing homes.

Limitations

This was a small-scale study, and additional research into the area is needed. While the MDS is an assessment tool, more complete information on resident characteristics, reasons for admission, and personal, social, and family history could be obtained from more structured instruments and interviews.

This study was not designed to explore in-depth the psychological or social needs of the residents. The data suggest a need for greater exploration of the psychosocial needs of these residents and the development of intervention studies to test ways to improve their quality of life.

This study was also not designed to identify nursing facility staff members’ needs for additional training in the care of younger residents. However, this need emerged, and additional work is needed to more clearly assess the knowledge and skills of the nursing staff and implement and test training programs.

Nursing Implications

The number of younger people who survive catastrophic illnesses and injuries to live with physical and/or cognitive disabilities is expected to grow as a result of the increasing use of life-saving technology. Nurses must be engaged in developing and supporting optimal living situations for younger adults with disabilities. This includes taking a broad perspective of the problem, such as advocating for the development and funding of community-based alternatives to nursing home placement.

Even if the number of semi-independent living alternatives increases, some young adults will still become residents of nursing home facilities. Nurses can provide leadership for a holistic approach to their needs; physical, cognitive, social, and physical adaptations will be needed. Support needs to be garnered from top administration in the nursing home and its parent corporation. Younger adults enter nursing facilities for many reasons: function, finances, family support, and few alternatives. A thorough needs assessment, with input from the resident and direct care staff, will provide essential data. In most facilities, younger residents share rooms with people older than age 80. Over a number of years, these younger residents may experience significant loss through death of roommates. The psychological and social implications of repetitive grief and loss have not been well recognized or addressed.

Intimacy was an issue for some participants and is an area that could be explored with younger adults. Environmental changes may need to be made to facilitate independent movement around the facility and to ensure privacy. Perhaps a wing of the facility could be designated to be younger adult friendly, with more electrical outlets for electronic devices, desks, and more effective sound proofing, as well as design and color input from younger adults.

As the staff in this study pointed out, there is a pressing need for nurses and certified nursing assistants, as well as dietary personnel and activity directors, to be educated about the developmental needs of younger residents, as well as how to adapt activities to younger residents with developmental disabilities, brain damage, paraplegia, and hemiplegia.

Nurses also need to consider the social needs of younger residents and work with social workers, therapists, and recreational therapists to introduce activities that are more engaging for this group. This may involve making the nursing home more welcoming to family members and children. Volunteers recruited from the community may help provide needed one-on-one interactions and supplement the number of staff needed for outings, which are important to maintain quality of life in this population.

Nurses who are knowledgeable about the needs of younger residents can share this information with staff at all levels. Much of their involvement in enhancing care includes team building and community involvement. Nurses can take a role in ensuring active involvement of younger residents with high clinical needs in promoting social contact, participating in recreation, and accessing community resources.

Conclusion

Individuals younger than age 65 are significantly younger than the majority of nursing home residents. While little is known about these residents, their numbers are increasing. In this study, the majority of residents were men and spent most of their time alone or watching television. Because this population had significant physical and mental health deficits, the potential for their discharge was limited, and most will spend the remainder of their lives in a long-term care facility. These residents have high care and supervision needs and limited family support, precluding most kinds of existing home or community care.

Difficult emotional experiences, few engaging activities, and limited relationships with family, staff, and other residents were concerns of residents. This is by no means a homogeneous group, although most tried to adapt to their situation. Staff were uniform in their view that nursing home facilities are not set up for younger residents and that they were challenged to meet the psychological and recreational needs of this group.

Strategies to improve the quality of life of younger residents include the provision of meaningful social and leisure activities, greater involvement of family and friends, and increased integration of community resources. More alternatives to nursing home placement are needed, as are more funds to provide services that promote independent and supervised living in a home-like environment.

References

  • Bigby, C., Webber, R., Bowers, B. & McKenzie-Green, B. (2008). A survey of people with intellectual disabilities living in residential aged care facilities in Victoria. Journal of Intellectual Disability Research, 52(Part 5), 404–414. doi:10.1111/j.1365-2788.2007.01040.x [CrossRef]
  • Cameron, C., Pirozzo, S. & Tooth, L. (2001). Long-term care of people below age 65 with severe acquired brain injury: Appropriateness of aged care facilities. Australian and New Zealand Journal of Public Health, 25, 261–264. doi:10.1111/j.1467-842X.2001.tb00574.x [CrossRef]
  • Centers for Medicare & Medicaid Services. (2008). MDS active resident information report: First quarter 2008. Retrieved July 24, 2009, from http://www.cms.hhs.gov/MDSPubQIandResRep/04_activeresreport.asp?isSubmitted=res3&var=RSaGE&date=22
  • Denzin, N.K. & Lincoln, Y.S. (Eds.). (2000). Handbook of qualitative research (2nd ed.). Thousand Oaks, CA: Sage.
  • Fries, B.E., Wodchis, W.P., Blaum, C., Buttar, A., Drabek, J. & Morris, J.N. (2005). A national study showed that diagnoses varied by age group in nursing home residents under age 65. Journal of Clinical Epidemiology, 58, 198–205. doi:10.1016/j.jclinepi.2004.07.001 [CrossRef]
  • Healy, P. (2003, December10). Nursing homes face challenge as the young fill the beds. The New York Times. Retrieved April 14, 2009, from http://www.nytimes.com/2003/12/10/nyregion/nursing-homes-face-challenge-as-the-young-fill-the-beds.html
  • Lapane, K.L. & Resnik, L. (2005). Obesity in nursing homes: An escalating problem. Journal of the American Geriatrics Society, 53, 1386–1391. doi:10.1111/j.1532-5415.2005.53420.x [CrossRef]
  • Macdonald, A.J., Carpenter, G.I., Box, O., Roberts, A. & Sahu, S. (2002). Dementia and use of psychotropic medication in non-“Elderly Mentally Infirm” nursing homes in South East England. Age and Ageing, 31, 58–64. doi:10.1093/ageing/31.1.58 [CrossRef]
  • McMillan, T.M. & Laurie, M. (2004). Young adults with acquired brain injury in nursing homes in Glasgow. Clinical Rehabilitation, 18, 132–138. doi:10.1191/0269215504cr712oa [CrossRef]
  • Mehdizadeh, S. & Applebaum, R. (2005). A review of nursing home resident characteristics in Ohio: Tracking changes from 1994–2004. Retrieved April 14, 2009, from the Scripps Gerontology Center, Miami University Web site: http://www.scripps.muohio.edu/research/publications/documents/Review_NH_Characteristics.pdf
  • Miles, M.B. & Huberman, A.M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks, CA: Sage.
  • O’Reilly, K. & Pryor, J. (2002). Young people with brain injury in nursing homes: Not the best option!Australian Health Review, 25, 46–51.
  • Smith, M. (2004). Under the circumstances: The experiences of younger people living in residential aged care facilities. Contemporary Nurse, 16, 187–194.
  • Weingarden, S.I. & Graham, P. (1992). Young spinal cord injured patients in nursing homes: Rehospitalization issues and outcomes. Paraplegia, 30, 828–833.
  • Winkler, D., Farnworth, L. & Sloan, S. (2006). People under 60 living in aged care facilities in Victoria. Australian Health Review, 30, 100–108.

Demographic Characteristics of Younger Nursing Home Residents

Characteristic n(%)
Gender (N= 136)
  Men 90 (66)
  Women 46 (34)
Race (n= 135)
  Black 71 (53)
  White 49 (36)
  Hispanic 13 (10)
  Asian 2 (1)
Marital status (n= 135)
  Never married 68 (50)
  Divorced/separated 38 (28)
  Married 17 (13)
  Widowed 12 (9)
Educational level (n= 123)
  Grade 11 or less 29 (24)
  High school graduate 62 (50)
  Some college/technical school 24 (20)
  Bachelor or graduate degree 8 (7)
Admitted to nursing home from (n= 126)
  Hospital (acute, psychiatric, rehabilitation) 88 (70)
  Nursing home 23 (18)
  Private home 10 (8)
  Assisted living 5 (4)
Responsibility for the resident (N= 136)a
  Family member 77 (57)
  Self 35 (26)
  Legal guardian 22 (16)
  Other legal oversight 5 (4)
  Power of attorney 3 (2)

Younger Residents’ Level of Assistance in Performing Activities of Daily Living (N = 136)

Activities of Daily Living
Transferring Walking/Wheelinga Dressing Eating Toileting Personal Hygiene Bathing
Level of Assistance n(%) n(%) n(%) n(%) n(%) n(%) n(%)
Independent 45 (33) 50 (37) 32 (24) 77 (57) 40 (29) 24 (18) 3 (2)
Supervision needed 7 (5) 14 (10) 8 (6) 26 (19) 5 (4) 12 (9) 17 (13)
Limited assistance needed 24 (18) 9 (7) 28 (21) 6 (4) 23 (17) 31 (23) 16 (12)
Extensive assistance needed 20 (15) 3 (2) 31 (23) 2 (1) 15 (11) 23 (17) 42 (31)
Completely dependent 38 (28) 32 (24) 37 (27) 25 (18) 52 (38) 46 (34) 58 (43)
Does not perform activity 2 (1) 27 (20) 0 (0) 0 (0) 1 (1) 0 (0) 0 (0)

Relationship Between Resident Age and Characteristics that Influence Potential for Discharge (n = 135)

Age 18 to 40 (n= 16) Age 41 to 50 (n= 40) Age 51 to 59 (n= 61) Age 60 to 64 (n= 18) Chi Squarea
Characteristic n(%) n(%) n(%) n(%) n(%)
Resident is dependent in activities of daily living 12 (75) 32 (80) 52 (85) 18 (100) 5.0336
Resident wants to return to the community 3 (19) 5 (13) 19 (31) 4 (22) 4.9514
Resident has support person who is positive toward discharge 1 (6) 3 (8) 4 (7) 2 (11) 0.4560
Resident’s stay is not of short duration 15 (94) 34 (85) 48 (79) 14 (78) 2.4301

Younger Residents in Nursing Homes

Persson, D.I. & Ostwald, S.K. (2009). Younger Residents in Nursing Homes. Journal of Gerontological Nursing, 35(10), 22–31.

  1. The percentage of nursing home residents younger than 65 is expected to grow due to reasons related to function, finances, family support, and few alternatives.

  2. Younger residents have high care and supervision needs, few engaging activities, difficult emotional experiences, and limited family and community involvement.

  3. Staff were uniform in their view that nursing home facilities are not designed for younger residents and that they are challenged to meet the psychosocial and recreational needs of this group.

  4. Strategies to improve the quality of life of younger residents include provision of meaningful social and leisure activities, increased involvement of family and friends, greater integration of community resources, and more alternatives to nursing home placement.

Authors

Dr. Persson is Director, Long-Term Care Ombudsman Program, and Dr. Ostwald is Professor and Isla Carroll Turner Chair in Gerontological Nursing, School of Nursing, Center on Aging, University of Texas Health Science Center, Houston, Texas.

The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity. The authors appreciate the support of the Isla Carroll Turner Friendship Trust. The authors also thank Carmen Castro, Celia Schulz, Nancy Bergstrom, and Stan Cron for their contributions to the manuscript. The Ombudsman Program is supported in part by the City of Houston, acting as the Harris County Area Agency on Aging and the Texas Department of Aging and Disability Services.

Address correspondence to Diane I. Persson, PhD, Director, Long-Term Care Ombudsman Program, School of Nursing, Center on Aging, University of Texas Health Science Center, 6901 Bertner SON 611, Houston, TX 77030; e-mail: .diane.persson@uth.tmc.edu

10.3928/00989134-20090903-02

Sign up to receive

Journal E-contents