Unmet needs: COVID-19 and the “wandering” patient

THE COVID-19 pandemic has had tragic impacts, with devastating residential aged care facility (RACF) and aged psychiatry unit outbreaks seen across local and international settings.

“Wandering” is a term sometimes used to describe behaviour of unmet need in people living with cognitive impairment, characterised by movement in repetitive patterns involving pacing or laps of the environment. While pathogenesis is unknown, it is considered among the behavioural and psychological symptoms of dementia. Around half of the people who reside in RACFs have a diagnosis of dementia and it is likely any person with dementia has the potential to wander.

Wandering results from seeking reassurance and contact and has diverse manifestations that depend on surroundings, medical status, mobility and degree of neurocognitive impairment. It may be long term and static and cause little issue. It may result in repetitive, intrusive activity, close contact with others and increased impact on care. It might be a new phenomenon that should prompt evaluation for underlying causes. Management should be ethical and moral, with a core issue being the individual’s dignity and autonomy. In the COVID-19 era, wandering poses questions regarding optimal management within a RACF experiencing an outbreak.

Elderly people who acquire COVID-19 are more likely to suffer from severe disease and mortality, with this risk heightened in those with dementia (here and here). There have been over 200 outbreaks in Australian RACFs to date, with particular impact seen during the “second wave” in Victoria. RACFs are characteristically enclosed spaces with multiple neighbouring accessible rooms, along with a highly mobile workforce – a recipe for effortless and clandestine spreading of this highly contagious disease.

Compared with the wider community, the ideal of self-quarantine and isolation is particularly fraught with difficulty in this setting. Initial stages of a RACF outbreak have proven to be dynamic and it is not always possible to identify discrete events or contacts. Identification of clear incubation and infectivity periods may be impractical until control is obtained. This complexity necessitates that scenarios be managed on a case-by-case basis and depend on clinical assessment, medical and public health bodies, the facility itself and the inclination of relevant medical treatment decision makers.

Routine and recognition

“Lockdown” and isolation have proven extremely disruptive and distressing for RACF residents and caregivers. Routine visitation and outings may be restricted to telecommunication. Allied health visitation is likely suspended. Loss of regular staff due to furlough or restricted staff movement between RACFs may result in a less familiar or consistent workforce, presenting the risk of lapses to continuity and quality of care.

There is dissolution of usual group recreation activities and shared mealtime with contemporaneous increase in exotic commotion and bustle. Unrecognisable groups cloaked in alien clothing parade the halls. The faces and voices of these figures might be unidentifiable and frightening, particularly for a person with cognitive impairment.

Usual spatial and visual landmarks are lost as the environment is transformed, including donning and doffing stations for personal protective equipment (PPE) and “clean” and “dirty” zones. Resident rooms may be re-allocated to avoid spread between wings, which may exacerbate disorientation and precipitate delirium, leading to increased wandering as individuals seek to reorient themselves.

Distancing and disruption

Isolation and loss of usual habituated movement may increase restlessness and propensity to wander, while non-adherence to social distancing undoubtedly increases the risk of COVID-19 spread to self and other vulnerable residents and workers. People with dementia and wandering behaviour or lack of appreciation of social distancing may increase the risk of superspreading events within RACFs or infection control breaches. Wandering itself may also impede essential activities of staff and compromise care for others if designated staff are not available.

PPE and precautions

The act of performing complex respiratory and contact precautions (eg, wearing a mask, performing hand hygiene, comprehending verbal communication and written signage) might be impracticable, and this may be exacerbated by poor vision or hearing. Wandering throughout the facility may result in contact to surfaces and objects on the journey. These may act as fomites that contribute to ongoing spread of the virus.

Some may refuse vital observations or be unable to tolerate swabbing attempts. Some may be unable to communicate that they are unwell. It is being increasingly recognised that atypical symptoms such as falls or delirium may herald COVID-19 and as such a change in wandering behaviour might prompt consideration of the disease in the appropriate clinical context.

Management

There are no specific guidelines on managing the wandering resident in the COVID-19 era. General management involves regular assessment of risk, identification of triggers, involvement of next-of-kin and optimisation of environment where possible. Each case is unique, requiring clinical judgement and consideration of circumstances and ethical principles specific to the outbreak.

Trained staff who know the resident should be utilised where possible. Alarms or tracking technology might be considered, while environmental modifications such as doorway barriers can be effective. Music, toys, dolls or reading sessions might provide distraction and comfort, and exercise and walking routines are also beneficial. However, each of these options might be incompatible with the infection control needs in an outbreak environment.

Communication with next-of-kin (including telephone, video calls, or window visits) should be facilitated where possible, but may be difficult to implement during an outbreak without dedicated staffing. Capacity for complex decision making may be impaired, and regular communication between clinician and medical treatment decision makers regarding management is crucial. Some might elect to relocate their loved one from the RACF to their home, although this presents new challenges and places caregivers at risk.

Although not a simple decision, hospital transfer is recommended if medically necessary or if clinical or public health concerns exist (eg, unable to maintain infection control requirements including risk to self or others) in consideration of the resident’s known preferences and values. An alternate strategy may be to monitor the situation closely with a low threshold for transfer, provided the care and infection control needs can be met at the facility.

Despite best efforts, hospitalisation can be disruptive and isolating for a person with cognitive impairment, particularly in the COVID-19 context. The change to environment might precipitate further distress, delirium or escalate wandering behaviour. Admission has often been to a single room or cubicle in a general COVID-19 ward rather than dementia-specific unit, and while there may be experienced health care professionals equipped with PPE as well as security and specialist medical input, staff are unfamiliar and largely unidentifiable due to their attire, and strict infection control measures limit access to visitors, activities or diversional therapy.

Inpatient management of people with COVID-19 and wandering behaviour exposes the tension between respecting patient autonomy, non-maleficence (“first, do no harm”) and justice (including safety of other patients and health care workers). In exceptional (although not altogether uncommon) circumstances, guidelines support the cautious use of pharmacological intervention to mitigate risk which may be most appropriately undertaken in a closely supervised hospital setting.

The clinician should reserve such measures for resistant cases that pose significant risk which are unresponsive to non-pharmacological attempts, and with clear consultation with the medical treatment decision makers, noting that use of antipsychotics may be ineffective or worsen behaviour. Physical restraints are an encroachment of autonomy and dignity that should be avoided. Once their illness or acute phase has resolved, residents often experience prolonged length of stay, awaiting clearance for safe discharge. Some will have further quarantine periods imposed once they return to their RACF.

A roaming predicament

It is a great incongruity that people with cognitive impairment and wandering behaviour, who benefit most from guidance at a time of vulnerability, have this stability threatened in a RACF outbreak situation. In a public health emergency, we must defend against process that would capitulate on the rights of the wandering resident. Our actions must be ethical and compassionate of the wellbeing of these people and fellow residents and staff.

Now we have emerged from the “second wave” in Victoria that has claimed many lives in RACFs and changed this landscape irrevocably, we must plan for repeated future outbreaks. It is vital now that we carefully reflect upon clinical outcomes of residents affected by outbreaks, including those evacuated for basic care provision and public health reasons. Interim findings from the aged care Royal Commission have recommended increased mental health and allied health support, improved access to infection control experts, need for more staffing to accommodate visitation, and formation of a COVID-19 advisory body.

While these may indirectly improve care for individuals with dementia, it might not specifically deal with the complex issue of expressions of unmet need, including wandering, which may require consideration of tailored interactive person-centred plans and specialised allocated staffing, or dedicated dementia-specific inpatient facilities, taking into account our ethical obligation in upholding the welfare of these people in both community and inpatient settings. Implementation of any plan will require effective collaboration and communication between the RACF, government health departments, quality and safety authorities, and primary care and hospital-based services, such as residential in-reach teams.

Dr Emma Hack is an Advanced Trainee in Geriatric medicine with an interest in dementia and promoting optimal care for residents and families in aged care facilities.

Dr Paul Yates is a Geriatrician and Honorary Senior Research Fellow with University of Melbourne, Department of Medicine, Austin Health. His clinical and research work aims to improve health outcomes for frail older people at the interface between hospital and community settings, including residential aged care.

During the second wave in Melbourne, Dr Hack and Dr Yates were extensively involved in InReach responses to support aged care facilities affected by COVID-19 outbreaks.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.