key: cord-0771925-pp5iykag
authors: Ayalon, Liat; Avidor, Sharon
title: ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak
date: 2021-01-22
journal: Age Ageing
DOI: 10.1093/ageing/afab013
sha: f003967cbb55c2379185e8953a2a7ffb1525c1b6
doc_id: 771925
cord_uid: pp5iykag

BACKGROUND AND OBJECTIVES: during the coronavirus disease 2019 pandemic in Israel, people residing in continuing care retirement communities (CCRC) found themselves under strict instructions to self-isolate, imposed by the CCRC managements before, during and after the nationwide lockdown. The present study explored the personal experiences of CCRC residents during the lockdown. RESEARCH DESIGN AND METHODS: in-depth interviews were conducted with 24 CCRC residents from 13 different CCRCs. Authors performed a thematic analysis of interview transcripts, using constant comparisons and contrasts. RESULTS: three major themes were identified: (i) ‘Us vs. them: Others are worse off’. Older residents engaged in constant attempts to compare their situation to that of others. The overall message behind these downward comparisons was that the situation is not so bad, as others are in a worse predicament; (ii) ‘Us vs. them: Power imbalance’. This comparison emphasised the unbalanced power-relations between older adults and the staff and management in the setting and (iii) ‘We have become prisoners of our own age’. Interviewees described strong emotions of despair, depression and anger, which were intensified when the rest of society returned back to a new routine, whilst they were still under lockdown. DISCUSSION AND IMPLICATIONS: the measures imposed on residents by managements of CCRCs during the lockdown, and the emotional responses of distress among some of the residents, revealed that CCRCs have components of total institutions, not normally evident. This underscores the hidden emotional costs of the lockdown among those whose autonomy was compromised.

Although the coronavirus pandemic has upended everyday life in most parts of the world, a large percentage of all coronavirus disease 2019 (COVID-19)-associated deaths worldwide have occurred among long-term care (LTC) residents [1] . As of 25th June 2020, there have been 308 confirmed deaths associated with COVID-19 in Israel. Of these, 42.61% are people who lived in LTC settings, but <1% of all COVID-19-associated deaths occurred among continuing care retirement community (CCRC) residents [2] . To put these numbers in perspective, roughly 2% of all older Israelis live in LTC institutions and another 2% live in CCRCs [3] .

From a legal perspective, the CCRC is considered a community dwelling rather than a LTC facility. New residents are independent at least upon entering and the CCRC offers varied levels of care, based on people's interest and needs [4, 5] . Nevertheless, a recent Israeli study has found that, on average, older residents have the same level of impairment as older Israelis who are legally considered care dependent by the state [6] . Moreover, although older CCRC residents do not share a unit with other residents other than a spouse, CCRC units are usually small with the explicit goal of encouraging social gatherings [7, 8] . Hence, despite differences between the traditional LTC institutions and CCRCs, many of the characteristics of CCRCs make their residents quite vulnerable as well [9] .

At the outset of the outbreak in Israel, the first group that was instructed to self-isolate was that of older adults over the age of 60 and individuals in LTC settings, including CCRCs. After a period of strict lockdown starting in mid-March, on 19th April, Israel gradually started to reopen and resume a new routine [10] . Most LTC settings and CCRCs, however, continued to restrict any passage of individuals to and from these institutions, for several weeks after the rest of the nation reopened. Following protests of family members, a state document called 'Mothers' and fathers' shield' was issued on 20th April, ordering settings to gradually reopen and allow supervised family visits [11] .

In the light of the unique features of the CCRC setting, which has some characteristics of community living that foster independence and autonomy, but also features of LTC settings, including the physical vulnerability of its residents and the structural features of the setting that make physical isolation challenging, the present study set out to bring the experiences of older adults during the lockdown and the slow reopening that followed.

Following approval by the PI's ethics committee, we recruited 24 participants, who were interviewed between 22nd April and 9th June, corresponding with the transition from a full state of lockdown in the entire country to a partial reopening for most Israeli residents. Our inclusion criteria were CCRC residents who speak Hebrew or English, are willing to be interviewed for the study and able to communicate over the phone. We were interested in the experiences of residents in diverse settings, and we therefore employed varied methods of recruitment. We approached our existing social and professional networks via emails, WhatsApp groups and Facebook advertisements. We also approached the Israeli council of CCRC residents for their collaboration. Recruitment continued to the point of content saturation.

Appendix 1 in the supplementary data (available in Age and Ageing online) on the journal website provides detailed information concerning the procedure, analysis, interview guide and trustworthiness of the findings.

In total, 24 residents were interviewed. Residents varied in terms of the amount of time in the CCRC, ranging between 1 and 23 years. The age range of residents varied between 75 and 92. Of them, 87.5% were women. Residents came from 13 different settings, from diverse regions of the country. CCRC settings varied in size, with some settings having only 50 and others being quite large, with as many as 500 residents. See Table 1 for details.

Three major themes emerged through the analysis of interview data. The first theme: 'us vs. them: Others are worse off' concerned older residents' constant attempts to compare their situation to that of others. Specifically, the older persons interviewed in this study compared their situation to others in the community, in their own setting and in the nursing unit, who were seen as being worse off. The overall message 2

We have become prisoners of our own age behind these downward comparisons was that the situation is not so bad, as others are in a worse predicament. A second theme, 'Us vs. them: Power imbalance,' also involved a comparison, but this time, between the older CCRC residents on the one hand and the staff and management on the other hand. In contrast to the former comparison that empowered and protected older adults from the challenges they faced during the lockdown, the latter comparison emphasised the unbalanced power-relations between older adults and the staff and management in the setting. The third theme, 'we have become prisoners of our own age,' concerned the collapse of resources and coping. Interviewees described strong emotions of despair, depression and anger, which were only intensified when the rest of society returned back to a new routine, whereas they were still under lockdown. For a subset of participants who were Holocaust survivors, these emotions were accompanied by vivid memories and experiences from the past, as they unanimously equated their current experiences with their traumatic past. Older CCRC residents vividly described the transformation of the CCRC from a place of pleasure and activity to a prison, even a form of solitary confinement. The three themes are detailed below, accompanied by quotes from the interviews. Table 2 illustrates the themes with direct quotes from the interviews. We use pseudonyms to protect respondents' anonymity.

Although physically safe, most CCRC residents interviewed in this study reported a substantial reduction in their mental wellbeing, including high levels of anxiety, depression, anger and despair. The paternalistic approach, which attempted to protect residents at all costs, allowed for limited autonomy and self-assertion. These features of the CCRC as a total institution have been documented in past research, which has shown that as older adults' physical abilities decline and health needs increase, their ability to exert their wishes within the CCRC setting declines as well [12] . Our findings provide further support to this. Whereas older adults in the community were allowed to leave their home for a radius of 100 m, and, further, choose whether or not they wish to obey the COVID-19 guidelines (and if they disobey potentially pay the consequences), in CCRCs, most older adults had no place for personal judgement. They were literally forced to stay in quarantine. Based on residents' reports it appears that the more drastic the measures of the CCRC, the harsher the personal experience of CCRC residents became. Those settings that allowed residents to maintain some level of autonomy, appeared to better support their residents through these stressful times.

While reviewing the findings, it is important to acknowledge the study's limitations. This is a qualitative study that aims to provide an in-depth understanding of CCRC residents' experiences, rather than a general picture of the situation in Israel. Nevertheless, the fact that interviewees came from many different settings allows for greater generalizability of the findings. It also is important to note that this study brings a single point of view-that of the residents. We did not interview staff, management or family members for this particular study. Thus, whilst extremely important, it should be kept in mind that the perspective provided in this study is one standpoint. Moreover, our approach to recruitment relied, among other methods, on CCRC managers and thus, might be subject to bias. Despite these shortcomings, the present findings have important implications for the current management of the outbreak as well as for future waves, or similar pandemics 3 in the future. Our findings show that the CCRCs were successful in physically protecting older adults at the price of compromising their wellbeing. CCRC residents' defense mechanisms were successful to some extent, but as time went by and the rest of the country returned to a new routine, these mechanisms collapsed and older residents experienced high levels of stress, anxiety, depression, despair and anger. They were forced to acknowledge the important role that management and staff play in their lives and the limited agency that they have to manage their lives during the crisis. From the interviews, it is clear that staff and management can emotionally harm residents, but also calm and ease residents' experiences. Some members of staff were identified as benevolent figures of substantial importance especially at times of distress. Moreover, those settings that allowed greater flexibility and maintained older residents' routine as much as possible helped to protect residents' mental wellbeing. Similarly, the more transparent the measures enforced by the setting were, the more satisfied were the residents. Current efforts should be geared towards maintaining routine and social activities, whilst protecting residents through targeted testing and the constant supply of personal protective equipment. Residents' autonomy and self-assertion should be respected and encouraged as a means for maintaining emotional resilience during these unsettling times.

Resident characteristics associated with mortality in long-term care nursing homes: is there a gender difference?

COVID-19 current status

The 65+ population in Israel

Designing for social needs to support aging in place within continuing care retirement communities

Continuing care retirement communities: prospects for reducing institutional long-term care

Loneliness and anxiety about aging in adult day care centers and continuing care retirement communities

Location, location, location: close ties among older continuing care retirement community residents

Home is where my couch is": the role of possessions in the process of moving and adjusting to continuing care retirement communities

Long term care settings in the times of the COVID-19: challenges and future directions

Public policy in Israel and the world to deal with the new corona virus -a comparative analysis

Fathers' and mothers' shield. 2020. Available online

But I am not moving: Residents' perspectives on transitions within a continuing care retirement community