The experience of transitions in care in very old age: implications for general practice

Abstract Background It can be challenging for general practitioners to support their oldest old patients through the complex process of relocation. Objective To provide a typology of the experiences of moving in very old age that is clinically useful for practitioners navigating very old people’s relocation. Methods Qualitative analysis of data from a mixed-methods UK population-based longitudinal study, Cambridge City over-75s Cohort (CC75C), from Year 21 follow-up onwards. Interviews with participants aged ≥95 years old and proxy informants (Year 21: 44/48, 92%, subsequent attrition all deaths). Thematic analysis of qualitative data available from 26/32 participants who moved before they died. Results Individuals who moved voluntarily in with family experienced gratitude, and those who moved into sheltered house or care homes voluntarily had no regrets. One voluntary move into care was experienced with regret, loss and increased isolation as it severed life-long community ties. Regret and loss were key experiences for those making involuntary moves into care, but acceptance, relief and appreciation of increased company were also observed. The key experience of family members was trauma. Establishing connections with people or place ahead of moving, for example through previous respite care, eased moving. A checklist for practitioners based on the resulting typology of relocation is proposed. Conclusions Most of the sample moved into residential care. This study highlights the importance of connections to locality, people and place along with good family relationships as the key facilitators of a healthy transition into care for the oldest old. The proposed checklist may have clinical utility.

(1, 2). The likelihood of making an involuntary move into long-term residential or nursing care settings increases in very old age (1,3,4) prompted by frailty, falls and hospitalization (5).
Relocation can be stressful for older people and most will experience anxiety, some confusion, others depression-a process conceptualized as 'Relocation Stress Syndrome' (RSS) (6)(7)(8). Because the oldest old are likely to make multiple transitions (from hospital to respite care and to more than one care home), the risk of RSS increases (2,9,10). Transition theory defines the conditions needed to make healthy transitions as (i) personal resilience, (ii) support from family or community and (iii) societal conditions that are supportive of older people (good-quality residential care) (11,12). Some degree of ownership of the decision to move is also required for the transition to be healthy (2). Ownership is particularly important for people living with dementia because they have lower levels of resilience and hold both positive and negative views on moving into care ('having someone to care for me'/'not being able to go out' (13). Language is also important: individuals should not be described as being 'placed' in a care home, which implies passivity, but seen as 'living' in the home (2,14,15). Although individuals are more likely to make a healthy transition if they are resilient and 'buy into' the decision to move, the onus is on care home providers to cultivate a sense of 'home', and present a 'welcoming' workforce culture for new residents (16).
Persons aged ≥85 are much more likely to consult their GP (17) and it is likely that they will be the first point of call when a health care crisis triggers the need for relocation. However, the sustainability of the patient-doctor relationship is challenged once the person moves into residential care as contact becomes variable ranging from episodic and reactive, to integral relationships that facilitate high-quality person-centred care (18). GPs' attitudes towards care home residents vary; some feel burdened or helpless when confronted by the severity of illness among this population (19), whereas others find their role rewarding and meaningful (20). In this study, we draw on qualitative data from a unique sample aged ≥95 to identify the experiences of moving among the oldest old and devise a proposed checklist which may help practitioners respond to, or avert, individual's anxiety about relocation.

Study design
The CC75C study's methods have been previously described, both for the cohort overall (21) and for the qualitative component (22). Briefly, the original population-based sample (n = 2166, 95% response rate), enrolled in 1985/87 using general practice lists, were re-interviewed every few years until 2013 (Survey 10: Year 28, the final survey before all participants had died). Each survey wave, which included assessments of cognition (23,24) and disability (25), obtained Cambridge Research Ethics Committee approval and renewed consent. At Year 21 surviving participants were invited to an additional interview with the aim of understanding 'what it is like to be so old' which included exploring experiences of moving (26). Proxies, usually relatives, were also interviewed to gather their insights into these very old peoples' experiences. Interviews with participants and proxies were conducted in their usual residence, audio-recorded, and transcribed. All data were anonymized and identifying characteristics removed. Where quotes are presented in the text below pseudonyms are used to maintain anonymity. The cognitive status of participants is indicated by the abbreviations 'SCI' denoting severe impartment, 'ModCI' moderate impairment, 'MCI' mild impairment, and 'NCI' not impaired.

Data analysis
Descriptive statistics used quantitative data from core survey measures to summarize sample characteristics. We used study archives and databases to track address changes to identify transitions to different residential settings. The qualitative data were analysed thematically working from primary coding to more complex themes and connections as the data were charted into a framework matrix using NVivo qualitative data analysis software.

Results
Moving residence in very old age CC75C's Year 21 (2006-07) survey included 44 of 48 surviving participants (92%). Fewer than half still lived in their own home (18/44, 41%), dropping to just over a quarter by the time they died (12/44, 27%). Figure 1 illustrates where participants had moved to before this survey and subsequently. Of those who had already moved, 29% (8/26) later moved again. Moves before this survey were several years previously, median 3.8 years (IQR: 1.3-5.9); moves for those who moved again were a median 2.3 years (IQR: 1.2-3.5) later. Two-thirds died before any later survey (30/44, 68%), some with no interview discussion of moving, but relevant qualitative data were available for the majority of participants who moved at any point (26/32, 80% of those who moved): the sample included in this analysis. Five of the 26 had moved before 2006, 15 moved during 2007, and six who moved during 2008-10 were interviewed in the final survey. Table 1 describes the Year 21 survey participants showing that the prevalence of demographic characteristics, cognitive impairment and disability did not differ greatly between those who moved (n = 32) and those who did not (n = 12). No differences reached statistical significance, nor did any difference between the total (n = 32) who moved and the sub-group (n = 26) in this qualitative data analysis (not shown). These 26 participants were aged 95 to 100 years old, median age 97.3 (IQR: 96-98.3); all but one of them were women, and most had cognitive impairment. Most (81%) needed help with basic Activities of Daily Living (ADLs), two only with instrumental ADLs and three with none. However, for those who moved after this survey, both disability and cognitive impairment had worsened by the time they moved. Supplementary Table S1 provides summary characteristics for each participant, listed in order of quotation, each of whom is allocated a de-personalized pseudonym for ease of identification.

Key Messages
• Resilience enables very old people to adapt following relocation. • Some very old people prefer having company in residential care to living alone. • Moves that sever life-long local connections increase isolation and loss. • Establishing connections with people or place ahead of a move is beneficial.

Characteristics of proxies
Qualitative data were gathered from both participants and proxies for the majority (20/26, 77%; see Supplementary Figure S2). For three participants, two proxies were interviewed and most proxies were women (22/29, 76%). Proxies were daughters (n = 14), sons (n = 6), other relatives (three children-in-law, two nieces, and one sister) a friend (n = 1) and a care home manager (n = 2).
Where participants moved to and the types of moves they made Seven participants with moderate disability who had recently experienced a bereavement or declining health made voluntary 'assistance seeking' moves either in with family, to a care home closer to family or to smaller easier to manage sheltered housing in their local community. The remaining 19, most of whom had higher levels of physical and cognitive disability, moved into residential or nursing homes or long stay hospital (n = 1) after a health care crisis had enforced a move.

Thematic typology
We identified four transition pathways among the oldest old and their associated experiences (summarized in Table 2).

Experiences associated with making a voluntary move
Seven moved voluntarily in with family (n = 2), sheltered housing (n = 1) or into a care home closer to family (n = 4). One had no cognitive impairment, two were moderately impaired and four had severe cognitive impairment. Moves in with family and sheltered housing were experienced with gratitude and improved well-being and met the conditions for a healthy transition: Participants viewed moving into care as an altruistic act that protected family from the burden of care:   Relatives were distressed by their older relatives decline in health and need to move: 11 (55%) of the 20 proxies used the word 'trauma' to describe the events leading up to relocation:

Experiences associated with making an involuntary move into a care home
By far the majority (19/26, 73%) moved into care homes, their experiences reflecting the largely involuntary nature of these moves. Moves were typically triggered by a crisis (injurious fall, hospitalization, incontinence, declining mobility and loss of care) which limited their capacity during the decision making process. All nineteen had some level of cognitive impairment.
Seventeen of these 19 regretted the loss of familiar objects associated with their own homes and some, like the participant quoted below, felt isolated in the monotony of life in care: The lack of freedom and privacy was also an issue: The data indicate that acceptance of a new life in care is undermined if the current care home takes steps to relocate a resident to a different home. In these circumstances, the older persons' stability is lost as they no longer feel connected or supported:

Conclusions
Voluntary moves proximal to their most recent dwelling generated gratitude, appreciation and no regrets. A voluntary move that severed life-long community ties was experienced with regret and increased isolation due to the absence of a good family or community network. Regret and loss were key experiences for those making involuntary moves into care, but there was also relief, acceptance and an appreciation of increased company and reduced loneliness. In the fourth type of move, one individual was required to move involuntarily to a second care home and she struggled to achieve the inner balance typical of a healthy transition. Given that the home care and care home environment has been under extensive pressure since the CC75C interviews were completed in 2006-10, we suggest that further research is needed to consider the incidence of people being moved to another care setting without any choice, and how this affects their well-being.

Comparison with existing literature
This is the first study to examine transitions in care in the very oldest members of our society. Our data support the view that, if their preferences are overridden, older people may not adjust as well to life in care (14). Our results also confirm that older people narrate their experience of transition with stories of lost objects (27) and this sense of loss extends to home, privacy and activities (28). Some CC75C participants were challenged to feel 'at home' in 'busy' care homes, echoing previous studies highlighting difficulties feeling at home in a place of work (27,29). Our data reinforce the finding that older people living with dementia had both positive and negative views on moving into care (having someone to care for me versus not being able to go out) (13). In line with previous research, our data suggest that acceptance of life in care is possible when the person is resilient and can adjust to the loss of control over their life (29). Our data also demonstrate how the welcoming nature of the care home has a positive impact (16). Our findings counter the dominant view that life in a care home is a completely negative experience: some of the older old people in this study preferred having the company of others in their care home to living an isolated life alone in their own home.
A key strength of this study is the qualitative data obtained in a cohort study highly representative of the growing 'oldest old' population. A methodological limitation of the CC75C data is that it does not permit analytical separation of the effects of moving from the conditions that prompted the move. We also acknowledge the limitations of proxy reports (the only data available for six of the 26 participants), but they provide insight into the experiences of very old age that would otherwise be entirely missing. Another limitation is the possibility of recall bias, as people were interviewed at different time points following their relocation.

Implications for practice
To aid GPs working in this field, we propose a checklist (Box 1) signposting resources aimed at supporting people in the process of moving and those who have recently relocated who may be experiencing anxiety, confusion, depression and isolation typical of RSS.
The proposed checklist provides a structured framework to stimulate discussion and orientate older people and their families. GPs might work through each of the stages with patients who need to relocate. Or it could be used as an additional prompt when completing advanced care plans or frailty assessments. For example, GPs working with patients in care homes who exhibit signs of RSS or depression could consider allocating a social worker or consider Assess' principles before a final placement in residential care is decided upon. This principle is being introduced in the NHS: https://www.england.nhs.uk/urgent-emergencycare/hospital-to-home/improving-hospitaldischarge/discharge-to-assess/. ✓ Allay your patient's fears about how they will settle in, offering the 'settling in' leaflet provided by Age UK which sets out key steps for adjusting to life in care: https://www.ageuk.org.uk/information-advice/care/ arranging-care/care-homes/moving-into-care-home/ and https://seniorcarecoalition.org/reducing-relocationstress/. ✓ Support your patient through the initial stages of the move-visit them in their new home to ensure continuity of care. This principle is being instituted in the NHS: http://www.pulsetoday.co.uk/clinical/clinicals p e c i a l t i e s / e l d e r l y-c a r e / g p s -t o -d o -w e e k l ycare-home-rounds-under-new-nhs-englandplan/20032921.article.
social prescribing of social or physical activity and recommend dietary improvements in collaboration with care home staff. Further research is needed to establish stakeholder endorsement of the proposed checklist and its utility for GPs.

Supplementary material
Supplementary material is available at Family Practice online.