Mdm Cho

The scene in this HDB flat is a common one throughout Singapore. When adult children are responsible for the care of an elder with dementia, half will hire a foreign domestic worker like Smita. It’s unclear how Serena Yiu met her mother’s care needs before she hired Smita several months ago. What is clear is that Mdm Cho’s behaviour has changed, sparking uncertainty and tension between the two younger women.

Smita is in an impossible position. Whenever she tries to tell Serena that Mdm Cho is eating less, she is told by her employer that she must, nevertheless, ‘get more food into her’. Perhaps Serena does not know that people with advanced dementia often stop eating, lose interest in food, or have difficulty swallowing as they near the end of life. This aspect of the condition is often difficult for loved ones to come to terms with, and it is not uncommon to respond by focusing on ‘feeding’. So, Serena keeps telling Smita to do the same thing – and Smita, who cares for Mdm Cho round the clock, knows this isn’t going to work.

What are Smita’s real options? Where does she turn in this terribly stressful situation? If she quits, she is out of a job and a place to live. If she tries to force Mdm Cho to eat, she could harm the vulnerable person in her care. The three women seem to be alone with this problem, until Mdm Cho’s deteriorating condition compels Serena to take her mother to A&E.

What should a society that relies on foreign domestic workers do for Smita, given the vulnerability of the migrant worker’s position? A societal approach to Smita’s dilemma would include training workers and employers alike to understand whether the condition of a person in need of care is likely to progress, what the signs and symptoms of a changing condition may be, and how to respond to these changes. Helping family caregivers to recognise that the stress they feel is also experienced by a paid caregiver, who has less power and may have difficulty being heard when problems arise, is another way a society, through government agencies, public programmes, and charitable organisations, can support good care and good decisions at home.

Collaboration between two caregivers who are also employer and employee is not simple. Serena’s situation is difficult, too, as she considers how to care for a cognitively impaired parent who no longer recognises her, amid her responsibilities to her children and her job. The home is not an extension of the hospital or the clinic, instead it is a setting for care. Societal efforts to improve care for elderly people at home should include practical information, opportunities for advice and support, and affordable and accessible services for households like this one.

Not experts in dementia care

Serena Yiu’s life typifies the challenges of the ‘sandwich generation’, whose members simultaneously care for ageing relatives and for children, often while working. While the case suggests that Smita provides most or all of the hands-on care for Mdm Cho, Serena’s responsibilities, though different, are considerable. She is Smita’s employer, responsible for hiring her (and perhaps previous foreign domestic workers) and supervising her work. This is already a considerable challenge, as family caregivers are usually not experts in the care of people with dementia or other serious illness before a family member becomes ill.

As an elder’s dementia progresses to an advanced stage, a family member in Serena’s situation would have overseen, in the past few years, an incomplete list of tasks. This list would include grocery shopping, food preparation, assistance with bathing, toileting, dressing, and other personal care matters, as well as transportation for medical and other appointments, household repairs, and the introduction of medical supplies and equipment (diapers, a commode, a walking frame, a wheelchair) into the home. The ease connoted by the words ‘home care’ prevents us from noticing the wide variety of ways caregivers of persons with dementia need to be supported.

When home becomes the site of healthcare

Serena has limited time, during her own work week and in between her own family responsibilities, to see her mother or to check in with Smita. Her interactions with both women suggest that the home has become a place of uncertainty and stress, rather than a haven, for this family. In particular, a characteristic problem for Alzheimer’s patients having difficulty with eating and drinking is introducing new stresses. We don’t know whether Serena or Smita has ever had an opportunity to learn about this common problem and the many factors that may trigger it. Certainly, it is difficult for an employee to challenge an employer’s directive to ‘solve’ a problem that may not have a clear solution. What would help Serena to recognise a common problem in the experience of people with dementia, and to work with Smita to respond to it?

What is owed to those who provide long-term care at home?

First, we should give Serena, and Smita, a place to which they can turn when care problems (not under A&E crisis conditions) arise at home. When a person with dementia has difficulty eating and drinking, do family members have a reliable way to confer with a community-based professional, such as a GP, geriatric nurse, or geriatric social worker? This consultation and support should include ways of enhancing their ability to co-manage the challenges of dementia care at home. Serena and Smita also require access to personal emergency response systems and adequate respite.

Second, a health and social care system that relies on family caregivers to organise and deliver care of the elderly should be fair and candid with members of the sandwich generation concerning the cost of the trajectory of dementia. It has not been fair to frame care at home, over years, as an expression of filial piety (suggesting that a person who has difficulty managing is somehow delinquent in family duties), without proper attention to the many costs of care: financial, and also in terms of the effect on a wage earner’s career and prospects. We don’t know whether other members of Mdm Cho’s family are contributing financially to her care; but it is clear that Serena is bearing a heavy responsibility.

Serena’s life revolves around the constant prioritising of eldercare and childcare needs. In many families, grandparents used to be a help with childcare, but there is now also a loss of that source of support. Those in the sandwich generation will have financial needs when providing care for both parents and children. Care services in many countries including Singapore involve a considerable out-of-pocket expense. Some may feel that they have no choice but to turn to hiring low-wage domestic workers to meet the care needs of a parent living at home. State policies for health and social care financing should aim to ensure justice for caregivers, including domestic workers.

Third, obligations to provide care at home affect employees at the workplace, and studies show that a supportive employer who is prepared to be flexible about work arrangements is an important factor in enabling employees to combine paid work with the care of ageing parents and/or children. In Singapore, the imperative of keeping men and women in the workforce means that workforce planning should rethink the life-course of caregiving and formal employment to make it possible for employees to manage these heavy responsibilities.

Unfortunately, the scenario described is not uncommon. The incidence of dementia is rising worldwide; the number of people affected is anticipated to double every 20 years, resulting in over 80 million diagnosed cases by 2040. Mdm Cho has had dementia for 8 years. Who was her primary caregiver previously? Was it Serena? Or maybe Serena’s father, prior to his demise? Things seemed relatively stable until recently, when Serena felt the need to hire someone to look after her mother. This, too, is common.

Dementia, while debilitating at any stage, has an unpredictable course that varies in different patients, and there could be a number of different reasons why Mdm Cho is refusing her food.

Psychological issues

Is Mdm Cho depressed? If Serena was her caregiver previously and has recently withdrawn, this may have precipitated her change in mood. Perhaps Mdm Cho is grieving the loss of her spouse. I had a patient who would get angry with her domestic helper at each meal time, because the helper wouldn’t take food into her late husband’s bedroom – she could not remember that he had died 15 years ago.

Is Mdm Cho being engaged socially? While some individuals with dementia may not be able to hold a conversation, they may still respond positively to family interactions with visiting relatives, looking at old photo albums, or listening to music. Smita is from Sri Lanka, and while she can converse in English, we do not know which language Mdm Cho spoke previously. Perhaps Mdm Cho is frustrated that she cannot understand what Smita says or does.

Physical problems

There could be a medical reason for her loss of appetite. If Mdm Cho is not moving much, her bowels are likely to be sluggish and constipated. Decreased fluid intake would worsen this situation. There could be yet other reasons for her refusal to eat. She may be suffering from a swallowing impairment, which may be related to Alzheimer’s disease (cognitive dysphagia), or to another comorbidity, for example, a stroke, or Parkinson’s disease.

Culinary tastes

Maybe the food does not appeal to her. Smita may have learnt how to cook Chinese dishes, but may not know how the dishes should taste if she does not eat Chinese food herself (a common enough occurrence for anyone brought up on a single type of cuisine). Has Serena had Smita’s cooking? Maybe she should try it too.

Caregiver issues

One of the common frustrations caregivers express is how long meal times can take. It requires an incredible amount of patience to feed someone with advanced Alzheimer’s. If the caregiver is in a rush, or has other responsibilities to tend to, patient intake invariably suffers. Is there a problem with Smita’s feeding technique? Does Smita have any experience with providing care to the elderly? If not, she may benefit from formal caregiver training. (For more information, see the Agency for Integrated Care website.)

An assessment by a healthcare professional to narrow down the likely cause(s) of Mdm Cho’s poor intake is highly recommended. This should be arranged sooner rather than later, as after several days of poor eating, the patient would likely decline and possibly require hospitalisation. Treatment could involve managing constipation, or addressing mood issues. On the other hand, enhancing the flavour of the dishes served to her may be enough to whet her appetite. Serena could consider adding high-caloric nutritional supplements to Mdm Cho’s diet. These supplements may not appeal to many of our elderly folk when served neat, but can be prepared in different ways to facilitate intake. For example, a standard supplement like Ensure may be blended with fruit or ice-cream to enhance its taste. Consulting a dietician may be useful here.

However, despite all the best measures, there may come a time when Mdm Cho will simply not be able to eat. At this stage, some options available to Serena include the introduction of enteral feeding, that is, the introduction of nutritional supplements directly into the patient’s stomach, bypassing the mouth. There are 2 common ways of doing this: via a tube inserted through the nasal cavity into the stomach, or one inserted through the abdominal wall. There are several implications of this that will need to be considered very carefully:

• Is this what Mdm Cho would have wanted? In effect, this form of nutritional supplementation may prolong a patient’s life-span for a very long time – years even – but would there be quality of life?
• Enteral feeding is quite demanding on the caregiver. The process needs to be carried out 5 or 6 times a day, on average, every 3 to 4 hours apart, which would mean that the caregiver would be kept busy for much of the day. A number of processes need to be carried out each time the patient is fed, including checking the volume and pH of her stomach contents prior to feeding, preparation of the milk supplements, flushing of the tube after feeding to prevent blockage, and washing of the feeding apparatus used.

In summary, it would be important to try to elucidate the reason for Mdm Cho’s poor intake, rather than simply trying to get her to eat more, especially since she may not understand her caregiver’s instructions, no matter how slowly or loudly she speaks. Responsibility for Mdm Cho’s care cannot rest on Smita’s shoulders alone. Some issues will be beyond her ability to manage, and there may be no quick fixes. Serena may need to sit down with her mother, Smita, and a health professional to discuss and decide on options for optimising Mdm Cho’s care.