From the Eyes of Residents: Elderly Patient Experiences in Long-Term Care Facilities and Nursing Homes

As of 2020, elderly individuals in the United States (ages 65 and above) made up 16% of the population, a 36% increase since 2009. This is a significantly larger increase than the yearly 3% growth in the population of individuals under the age of 65.¹ As the elderly population continues to grow, it is important to address multiple aspects of the methods of care given to the individuals who make up this population. The settings in which elderly individuals may receive care vary, from at-home care to care in nursing homes (NHs) and long-term care facilities (LTCFs). LTCFs are facilities established for the purpose of providing services to individuals who cannot perform physical functions that enable them to live independently.² Within an LTCFs, residents can receive support for performing activities of daily living (ADLs), medical needs and other necessities. Nursing homes (NHs) serve a similar purpose, but differ from LTCFs in that they aim to rehabilitate a resident to return home and to be able to function independently again.³ 

With the continually rapid increase of the elderly population over time, the demand for LTCFs and NHs will likely increase. In order to ensure that LTCFs and NHs are able to provide adequate care to the residents that occupy them, it is important to look at the experiences of elderly patients who live, or have lived in such facilities. By reflecting on these experiences, LTCFs and NHs will be better equipped to make informed decisions about care practices concerning their residents and avoid subjecting them to unnecessary suffering.

GENERAL OUTLOOKS ON ELDERLY RESIDENTS’ EXPERIENCES

How are the experiences of residents in LTCFs and NHs shared? In the interest of obtaining more information on the experiences of elderly residents, researchers have done a number of interviews with the families of residents, staff, and administrators in care facilities to explore topics like loneliness⁴ and fears of a loss of independence⁵. Among these groups of individuals, the most important source for relaying the experiences of elderly residents are the residents themselves. These interviews reveal that the experiences of elderly individuals vary due to a number of factors, such as the locations of their care facilities, their level of independence, and the interactions that they have with their caregivers. Some may have more positive experiences in these care facilities than others do, as was the case for some residents interviewed for a study conducted in 2016 by Tappen.⁶

 In the study, researchers interviewed ninety-six residents (both long- and short-stay) from 19 NHs and focused on their experiences in the nursing homes in comparison to their experiences in the hospital. Residents shared that the caregivers and staff were attentive, friendly and showed concern for them. Tappen stated that many longer-term residents saw the NHs as their home and felt comfortable there. Some residents had initial fears and concerns about their interactions with the staff in the nursing homes after transferring there from the hospital, but they ultimately reported that they were receiving good care, with one resident even saying of their facility, “‘I have been treated like a king here.”’ It seems that a large determinant of the experiences of elderly residents in care facilities is their interactions with the caregivers and staff, whether they are staying long-term or short-term. Since these are the individuals who residents will come into contact with the most, oftentimes even more than their own relatives, it follows that their actions and attitudes contribute greatly to the experiences of the residents.

However, not all experiences of elderly individuals in NHs or LTCFs are favorable. The transition into these facilities can be frightening or uncomfortable for many due to unfamiliarity with the new environment and uncertainty about the future, among other reasons. Due to high demand, nursing homes and long-term care facilities may also be understaffed⁷, which in turn makes it difficult for caregivers and staff to provide optimal care. A study conducted in 2013 by Svanström et al.⁸ reported the experiences of elderly individuals receiving long-term care by compiling the themes observed in their interviews into four patient stories. Two of these stories focused on individuals residing in nursing homes. The interviews revealed that there were individuals who were subjected to unnecessary suffering related to “caregivers’ inability to be present, to show their face, and to truly encounter the patient.” This failure to provide adequate, meaningful interactions between caregivers and residents did not better the quality of life of those being cared for. 

One of the themes that emerged from the interviews was the importance of conversation. When it was absent, residents reported feelings of loneliness, even in the presence of the caregiver. One patient, Stig, underscored the value of being able to connect visually with a caregiver, saying, ‘“Yes it is, yes it is the connection, the connection through the eyes. It is in the manner they offer themselves, they are sympathetic above all, they want to try to understand me, that says it all really.”’ Other patients shared that they felt alienated in situations where their caregivers would not address them by name or acknowledge them. While they understood that the caregivers had a lot to do, that understanding did not appease the loneliness that they felt due to the lack of acknowledgement. Humans are social beings, and for those who live in NHs or LTCFs, interactions with others are not as frequent as they once were. There have been proposed methods to remedy issues with loneliness in LTCFs and NHs, such as animal-assisted therapy, but there are no widespread approaches that have been implemented.⁹ This makes it even more important for efforts to be put toward providing residents with meaningful interactions and fostering an environment where it is clear that there is a desire to make connections and care not just for the physical needs of residents, but also their social needs.

ELDERLY RESIDENTS’ EXPERIENCES IN THE CONTEXT OF COVID-19

The advent of the COVID-19 pandemic early on in 2019 has also had a marked impact on the state of NHs and LTCFs — as of May 28, 2020, it was reported that, in 26 states, 50% of COVID-19 deaths occurred in LCTFs.¹⁰ Elderly individuals are more susceptible to the SARS-CoV-2 virus because they typically have weaker immune systems and chronic conditions like heart disease. For elderly individuals who live in NHs and LTCFs, there is an added risk of exposure to the virus through their interactions with staff and caregivers, who come and go from the facility.¹¹ Although these facilities do have precautions in place for staff and caregivers, there is still a risk in place. Apart from the physical threat the virus posed, the nature of the pandemic, particularly in its early stages, also proved to be a source of psychological challenge to many, especially to those living in long-term care facilities and nursing homes. 

As aforementioned, feelings of loneliness and isolation are prevalent in NHs and LTCFs —in fact, 55% of elderly individuals in institutionalized care report feeling loneliness.¹² These feelings were only exacerbated by the pandemic, where individuals in institutionalized care facilities were initially not able to see their families. In an article published by the American Medical Association in 2020,¹³ Lea Watson, a psychiatric consultant for LCTFs in Colorado relayed that “staff from multiple homes reported that residents had stopped eating and had “given up” without family visitation. “We now have a handful of people we think have actually died because they’ve been in isolation and haven’t had any contact at all with their families.”’ Thankfully, efforts have been put toward keeping residents socially engaged in spite of the limits presented by the pandemic, as the article reported that “stretched-thin staff coordinated additional phone calls and video chats with family…and facilitated family visits and entertainment…through windows.” Events like these have helped to ease some of the social difficulties for elderly individuals in LCTFs and NHs during the pandemic and provide them with much-needed meaningful connections.

IMPROVING ELDERLY RESIDENTS’ EXPERIENCES IN CARE FACILITIES

The work of staff and caregivers to improve conditions for elderly residents during the COVID-19 pandemic brought to the forefront a larger need to implement changes to improve the experiences of residents in institutionalized care facilities. While it is important to listen to the experiences of elderly residents in nursing homes and long-term care facilities, it is equally important to see how these experiences can be used to make improvements in the current systems in place in nursing homes and long-term care facilities. A study conducted in 2019 looked at how care was performed in Brazilian LTCFs¹⁴, meant to “meet the needs of this [elderly] population, taking into account their life histories, preserving their independence and autonomy…” The study also indicated that it seemed to be the case that “…in the views of health care professionals and managers, the quality of care is linked to basic needs and the training of professionals does not consider the specificities of gerontological care.” Seeing this, it becomes evident that there is a need for caregivers to be educated about caring for elderly residents beyond providing for their basic needs, to also attend to their other needs. As reflected by the aforementioned articles, there is a deficiency in the formation of meaningful connections between residents and caregivers. With this in mind, it follows that the mains steps that need to be taken toward improving the experiences of elderly residents lie in developing meaningful connections with them and giving holistic, adequate care, which can be supported by properly staffing and equipping  LTCFs and NHs with materials to help decrease stress on the the part of staff and caregivers.

In sum, the body of research concerning the care of the elderly reveals that elderly residents have a variety of experiences in LTCFs and NHs, some of which are positive and others that are not. Their experiences highlight the fact that there is still work to be done in order to reach an optimum level of care provisions for elderly residents. Overall, one of the things that is prized most of all by elderly patients is being able to have meaningful connections when receiving care, which goes beyond just taking care of the basic needs, like assisting with eating and cleaning. While the COVID-19 pandemic imbued a sense of urgency towards making changes to provide this, it is important that efforts to provide residents with adequate care continue into the future as well.

---

REFERENCES

1. 2020 Profile of Older Americans. Administration for Community Living; 2021:21.
2. Long-term care facilities. Cdc.gov. Published September 30, 2021. Accessed January 20, 2022. https://www.cdc.gov/longtermcare/index.html
3. Nursing home vs long-term care. Seniorhomeservice.com. Accessed January 20, 2022. https://www.seniorhomeservice.com/nursing-home-vs-long-term-care
4. Paque K, Bastiaens H, Van Bogaert P, Dilles T. Living in a nursing home: a phenomenological study exploring residents’ loneliness and other feelings. Scandinavian journal of caring sciences. 2018;32(4):1477-1484. doi:10.1111/scs.12599
5. Quine S, Morrell S. Fear of loss of independence and nursing home admission in older Australians. Health & social care in the community. 2007;15(3):212-220. doi:10.1111/j.1365-2524.2006.00675.x
6. Tappen RM. They know me here: Patients’ perspectives on their nursing home experiences. Online J Issues Nurs. 2016;21(1). doi:10.3912/OJIN.Vol21No01Man03
7. BLS OCTOBER JOBS REPORT: HEALTH CARE INDUSTRY long term care industry facing worst job loss among all health care providers. Ahcancal.org. Accessed January 23, 2022. https://www.ahcancal.org/News-and-Communications/Fact-Sheets/FactSheets/BLS-Report-LTC-Job-Losses.pdf
8. Svanström R, Sundler AJ, Berglund M, Westin L. Suffering caused by care – elderly patients’ experiences in community care. Int J Qual Stud Health Well-being. 2013;8(1):20603. doi:10.3402/qhw.v8i0.20603
9. Banks MR, Banks WA. The effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities. J Gerontol A Biol Sci Med Sci. 2002;57(7):M428-32. doi:10.1093/gerona/57.7.m428
10. Lau-Ng R, Caruso LB, Perls TT. COVID-19 deaths in long-term care facilities: A critical piece of the pandemic puzzle. J Am Geriatr Soc. 2020;68(9):1895-1898. doi:10.1111/jgs.16669
11. Moraes EN de, Viana L de G, Resende LMH, et al. COVID-19 in long-term care facilities for the elderly: laboratory screening and disease dissemination prevention strategies. Ciência & saúde coletiva. 2020;25(9):3445-3458. doi:10.1590/1413-81232020259.20382020
12. Nyqvist F, Cattan M, Andersson L, Forsman AK, Gustafson Y. Social capital and loneliness among the very old living at home and in institutional settings: a comparative study. Journal of aging and health. 2013;25(6):1013-1035. doi:10.1177/0898264313497508
13. Abbasi J. Social Isolation—the Other COVID-19 Threat in Nursing Homes. JAMA : the journal of the American Medical Association. 2020;324(7):619-620. doi:10.1001/jama.2020.13484
14. Damaceno DG, Chirelli MQ, Lazarini CA. The practice of care in long-term care facilities for the elderly: a challenge for the training of professionals. Revista brasileira de geriatria e gerontologia. 2019;22(1). doi:10.1590/1981-22562019022.180197

Full publication