Mr Tan

In Singapore, as in many ageing societies, family caregiving is seen as an ideal way of supporting ‘ageing-in-place’ for the elderly. Typically, family caregiving means keeping frail older people living in family homes, with appropriate services in place and adult children taking primary responsibility for parental care. These family caregivers must often juggle eldercare, childcare, and their own paid employment.

The day-care centre arrangement has given respite to Leila Tan and her husband, allowing both to keep their careers and provide for their son’s medical school studies, while caring for an ageing parent. Mr Tan’s daughters had secured some peace of mind by dispatching Leila’s domestic helper to keep an eye on his needs there. But now, Mr Tan’s disruptive behaviour may spell a change in the current working arrangement. His caregivers at home, especially Leila and her helper, Nabila, are worried about the heavier demands that this could mean for them.

Families’ expectations of domestic workers

Nabila’s situation is precarious because some of the relatives have voiced the expectation that she should have been able to prevent Mr Tan’s disruptive behaviour, capabilities sometimes beyond even that of trained professional carers at the day care centre. Possibly they have other unrealistic expectations. As Nabila’s employer, Leila defends Nabila because she appreciates, and recognises her dependence on Nabila’s reliability, but she excuses herself for a needless infringement on Nabila’s rest day. There were many family members apparently present and able to organise Mr Tan’s walk.

In Singapore and in many other parts of industrialised Asia, a live-in domestic worker is seen as part of the ‘deal’ of family caregiving. Many a vulnerable young woman from sending countries in the developing world have accepted contracts which only vaguely specify her job scope and description, and expected working hours. Live-in domestic workers with poorly specified and privately negotiated contracts often find themselves being made responsible for eldercare, childcare, meal preparation, housework, and the night shift to boot, and also made blameworthy for any resulting mishaps. How can Mr Tan’s family be helped to recognise and prepare for real needs and actual capabilities in their evolving caregiving circumstances. Things are likely to get worse for Nabila if Mr Tan has to forego the day care centre and stay at home all day, and the Tan family should be mindful of exploitative treatment of their domestic helper if she is seen as the most convenient, ‘cost-effective’ long-term solution.

Eldercare and fairness within families

Research into family caregiver experiences, has demonstrated how caregivers (particularly adult women of the ‘sandwich generation’) negotiate individual needs/aspirations and caregiving roles. Those who either choose (or feel no choice but) to take on family caregiving responsibilities must constantly ‘juggle’ the mixed goods of close involvement with parents, children, and friends, self-care, and life and career advancement. These challenges particularly affecting women, are shaped by the framework of ageing policies that set out the distribution of care work and care responsibilities. In 2012, the Survey on Informal Caregiving commissioned by the Singapore Government showed that of all informal caregivers, 60% were women, 26% single, 85% above age 45, and 47% were not in formal employment. Policies can put at risk the family caregiver’s health, quality of life, and financial adequacy. But critics of the ageing-in-place principle have argued that policies which developed on the back of values focused on saving the state money, and expanding formal care services to afford more choice for the elderly, neglect to consider what serious choices are available to family caregivers. Unfair expectations should not be directed at family caregivers like Leila too.

Leila’s sibling Monica expresses shock at the thought of moving their father from Leila’s house to a nursing home, but this response, while understandable, fails to acknowledge her sister’s predicament. It can border on accusing a sibling of abdicating responsibility when the family conference was meant for sensitive conversations within the family about allocating family caregiving responsibilities fairly.

Caring about Mr Tan

A basic ethical obligation that shows itself in this case is that of responding to Mr Tan’s demand to know what is going on. It is unclear whether Leila and Monica intend to bring their father into the discussion about how to manage his changing needs, and further plans once he can no longer attend day care. Although his mental capacity fluctuates, a candid discussion about aspects of the care plan that matter to him should be attempted. This gives practical meaning to respect for an ageing person grappling with dementia. Mr Tan may be able to offer insight and information into the shoving incident. Including their father in the conversation is both an act of respecting his dignity as a person (even if he is cognitively impaired), and an important means of clarifying his expectations and preferences, or changing desires, so as to be able to advocate for continuing dignified care and treatment for him over the long term.

One of the defining features of community-based care is the communal dimension of many of the services provided. In contrast to the majority of healthcare services, social care services such as adult day care offer ‘shared spaces’ in which a number of professionals, clients, and other informal caregivers interact together. There are good reasons for providing care and support in this way: people’s quality of life can be enhanced by these social interactions, and this approach can also be a more efficient way of providing activities for older people.

Difficulties can arise, however, when individual clients in the communal space behave in ways that can undermine the value of the support provided to all. Mr Tan’s outbursts in the adult day care centre are not unusual for a patient with dementia. Anxiety and agitation are common symptoms of disease progression. These reactions may be triggered by pain, changes in the person’s daily environment, changes in thinking that affect perception, or other factors. They may become more frequent as the disease progresses and it becomes more difficult for the person to cope with the loss of control.

Addressing behaviours from a person with dementia is challenging, but day care centres should train their staff about the nature of dementia so they can anticipate these behaviours and prepare strategies for handling problems when they arise. For example, the day care centre staff may have been able to get Mr Tan to calm down by offering words of reassurance or by redirecting him to focus his attention on activities he enjoys.

When the person with dementia receives care from a domestic worker like Nabila, it is helpful for the day care centre staff to recognise that this person is an important part of the care team and a valuable source of information about changes in the person’s life. Families may not want their maids to discuss what is happening in the home with the staff, but as Chua Yong Chai, the manager of Mr Tan’s day care centre observes, the domestic worker often spends more time with the older person than anyone else. At the same time, the day care centre staff is in a difficult position because they do not want to get Nabila in trouble with her employer. This case raises an important set of issues about the role of foreign domestic workers in Singapore and highlights the need for system level change. It is important for the healthcare system, community care organisations, ministries, hiring agencies, employers, and advocates to acknowledge that foreign domestic workers like Nabila are caregivers and should be trained, supported, compensated, and treated as such.

Safety for others

Because dementia is a progressive disease, excellent communication and behavioural strategies may not always be sufficient. Efforts to calm patients with dementia who become agitated must also involve protecting other clients in the facility, caregivers, and staff. If it is feasible, it is often helpful to direct patients like Mr Tan to a room within the centre that is quiet and peaceful. Loud noises can trigger outburst and make it difficult for the person to relax. If it is impossible to calm the person down and they are a threat to the safety of others, day care centres may have no choice but to call the family or other caregivers and explain that they are unable to provide the care that the person needs.

Day care centres have staff and other resource limitations. In centres that are well attended and stretched to their limits, extensive one-on-one care may simply not be an option. Some day care centres in Singapore already rely heavily on the domestic workers who accompany older people to supplement the staff and coordinate activities. It is reasonable to expect day care centres to provide their staff with appropriate training, and for those who work at these centres to anticipate behavioural problems from dementia patients and take reasonable steps to alleviate the problem.

If, however, the behaviour cannot be controlled with the resources available at the centre and the person presents a danger to others, the centre is likely to send him home with his caregiver. Families, like the Tans, who have come to depend on the day care centre for respite are often desperate to avoid this situation. Similarly, day care centre management and staff are often reluctant to make such a drastic move. Yet, if they fail to remove clients who pose a danger to others it would be unfair to those who are still capable of benefitting from the day care centre services.

This case study illustrates the importance of understanding dementia as both a process and a journey. It is the process of a disease unravelling itself and a life journey for the person living with the disease. In light of this, early diagnosis and intervention is crucial and both family and paid caregivers should be well-informed about the progress and intensity of dementia in various stages since different skills and competencies need to be employed to manage the changes.

The perception of reality by the person with dementia changes with each stage, and he/she needs to adjust and adapt to the environment as the disease progresses. Caregiver expectations need to be managed as well.

Early diagnosis prepares both the person with dementia and his/her caregivers to deal with the disease as it advances in severity. It allows for early, gradual changes to the person’s lifestyle and routines in order to cope with the progressive loss of cognitive functions. Early introduction of new habits such as writing notes and reminders, and establishing predictable routines, will lead to new habit formation, which may help to alleviate frustration for both the person with dementia and caregivers as the disease develops. It is also important for family members and other caregivers to engage the patient soon after a diagnosis of dementia, to work through these steps together with him/her rather than sweeping things under the carpet. This engagement allows the person with dementia to understand and participate in the necessary lifestyle adjustments, and to accept that life goes on despite each stage of the disease. Social isolation for the person with dementia should be avoided and, as much as possible, a sense of normality should be retained. Caregivers themselves need to adjust to their relationships, be it with the spouse or parent, and give everyone in the family time to come to terms with change.

Dementia – a social as much as a medical condition

The loss of both physical as well as cognitive functions puts additional strain on the relationships of all involved in the care of the older person with dementia. Conversations on issues may no longer be possible. How then does one begin to relate to a parent who no longer sees himself in the role that has defined him all his life up until the onset of the disease?

Steven R. Sabat argues that self-perception or consciousness is not necessarily lost in dementia. The person with dementia retains a sense of ‘self-in-the-present’ throughout the experience of dementia (Self 1). They also retain, to varying degrees, an ability to be aware of, interpret, and value their own physical and mental attributes (Self 2) which unfortunately may take on negativity due to stigmatisation. While Self 1 and Self 2 are, to some extent, under the individual’s control, Self 3 – the way in which the person with dementia presents or is represented to the world  – is almost entirely dependent on the cooperation of others. The argument therefore is that dementia is more than a disease of damaged neurons in an individual; it also entails a dysfunction of community to retain a relationship with the person with dementia. Has the person lost himself or has the community lost him?

Such existential questions prompt us to rethink the way we care for persons living with dementia. Caregivers need then to re-frame their perceptions and their approach to care of their loved ones with dementia. They need to enter the world of the individual struggling with the condition in order that they may understand that negative reactions or symptoms of dementia (e.g. aggression, depression, and anxiety) are a response to the external environment which now appears foreign and frightening.

Each patient with dementia is different, and Mr Tan may in fact be able to say what is or was troubling him. Instead of assuming that he has advanced beyond the point of meaningful communication, caregivers should ascertain how much cognitive appreciation of his circumstances he still has. After returning from his walk, Mr Tan asked to know what his daughters  were discussing. This is to communicate to the family that he has a desire to be involved in the decisions they are about to make concerning him. It may also be a call for attention to his problems and the discomfort he may be facing due to his condition.

The care of persons with dementia is the responsibility not only of families but of the society on the whole. It is not enough to create physical environments that are dementia-safe; we should foster communities of care by training our citizens to help persons with dementia to function both within and outside the home. Creating dementia-friendly communities should be one of the country’s goals. Some of the existing initiatives to tackle dementia include having community ‘go-to’ points, including elder day care centres and neighbourhood nursing homes that can advise and support families, caregivers, and patients at each stage of the disease. Apart from these formal points of facilitated assistance, community centres, residents’ committee offices, local malls and shops, food centres, buses, and neighbourhood police posts are being developed as parts of a safe haven with trained persons to provide assistance. Our older people with dementia can then live ‘in place’, supported and surrounded by the family and an informed, compassionate, and hospitable community, for as long as they can.