Imagine waking up one day and, for the rest of your life, not knowing what the date or time of day is, and not recognising your closest relations or your own bedroom.
Imagine that your bedroom has eight identical beds and you struggle to tell which is yours, and there are seven other strangers laying claim to the one bed you are convinced is yours.
Welcome to the world of a person with dementia, living in a dormitory-like, long-term care facility - the nursing home.
The Straits Times reported on Dec 21 (Shelved: Plans for different model of nursing home) that plans for Jade Circle had been put on hold. Jade Circle is a pioneering model of care for dementia patients that proposes to house them in single or twin rooms, instead of the usual six- to eight-bed dormitories.
The Ministry of Health (MOH) told the group developing the Jade Circle home last month that it could not provide subsidies to residents staying in such rooms.
Its reason: "It will be difficult for MOH to provide ongoing subsidies for patients staying in wards that are designed to proxy private or A-class ward configurations, such as single or double-bedded rooms only. Such parameters will be hard to scale or be financially sustainable, if applied to the rest of the aged care sector."
This raises the issue of whether lower patient-to-bed ratio residential facilities are medically justifiable or a luxury.
In developed nations, such as the United States, Britain and Japan, single and twin rooms are the norm. In Singapore, all subsidised beds in hospitals and nursing homes are in six- to eight-bed dormitories.
The only instance where a subsidised patient is housed in a single room in Singapore is for infection-control purposes (that is, when the patient has an infectious disease, or is immuno-compromised and susceptible to infections which would be life-threatening).
THE MEDICAL CASE FOR SINGLE ROOMS
While the need for patients to be housed in single rooms in infectious diseases cases is obvious to most, the need for single rooms for residents with dementia may be less apparent.
A systematic review of several papers in 2010 by a leading expert in dementia-friendly environments, Professor Richard Fleming from Dementia Collaborative Research Centres in Australia, found evidence that residents with dementia in nursing homes with individual rooms and more opportunities for personalisation of their living space exhibited less anxiety, irritability and aggression, and had better sleeping patterns.
In clinical practice, dementia patients with agitation and aggressive behaviours are often suppressed with anti-psychotic medications, which are associated with increased risk of falls and fractures, strokes, cardiovascular events and even sudden cardiac death.
Conducive living spaces may reduce the need for potentially harmful anti-psychotic medications and form part of what is considered appropriate care of residents with dementia.
Furthermore, unlike highly contagious diseases which are short-lived and only require isolation rooms until the infection has run its course, dementia is a slow, progressive and debilitative illness till death, with a high toll on caregivers.
Good care practices and enabling environments have not only reported better clinical outcomes in nursing home residents, but also improved staff satisfaction, retention and higher return on investment.
One such example is the Green House Project model, where small houses are home to six to 12 residents who have private rooms and bathrooms that open onto a central living area. A nurse is available 24 hours a day and care is provided by consistent self-directed staff.
Beyond people with dementia, Singaporeans also need to decide what kind of nursing, or retirement home, they would like for themselves in the future, or to place their loved ones in.
While most people would like to age at home, the reality is that many elderly will be cared for in group or institutional settings outside their own homes. The number of physically and cognitively frail seniors is rising sharply as the population ages, and fewer family members are available to provide care as many are holding full-time jobs. The number of singles is increasing, with more seniors staying on their own, too.
A simulation study published by Duke-NUS Graduate Medical School researchers predicted that the number and proportion of people in Singapore with severe dementia will increase significantly between now and 2050, and the concurrent decline in family size with limited caregiving capability will result in fewer individuals with dementia living at home.
TODAY'S REGIMENTED NURSING HOMES
How many Singaporeans will choose to stay in the nursing homes of today, where dormitory living and regimented routines are the norm?
The current institutional model of nursing home care can threaten the autonomy and personhood of seniors, and is not synonymous with patient-centred care. Nursing homes in Singapore evolved as extensions of hospital-based care, with centralised decision-making and rotation of medical personnel.
Residents have little control over their daily routines, including meals, bathing and sleep. There is minimal privacy as they share common toilets, bathrooms and sleeping spaces, and have only a small bedside drawer to keep their personal belongings.
Relationship-building between staff and residents is not prioritised and the regimented care eventually leads to depersonalisation, loneliness and diminished quality of life. The drawback of a culture that prioritises safety above autonomy can be seen in patients with mild- to moderate-stage dementia, who are physically restrained to prevent them from falling when they attempt to walk.
These patients are drawn into a vicious spiral of decline as they physically deteriorate, with diminished opportunities to walk around and eventually become dependent, chair- and bed-bound.
WHAT IS PATIENT-CENTRED CARE?
Patient- or person-centred care, on the other hand, centres on valuing a person's experiences and making the person the focus of care delivery (that is, the Very Important Person or VIP).
Four core themes, with the acronym VIPS, of person-centred care have been described as: (V)aluing the person or care recipient, and those who care for them; treating people as unique (I)ndividuals and, hence, the need to individualise care; looking from the (P)erspective of the person in care delivery; and creating a positive (S)ocial environment in which the person can experience relative well-being and thrive, not merely survive.
Thus, a person-centred culture would entail staff fostering relationships with residents, emphasising individual needs and personal preferences, and empowering them in decision-making to create a sense of belonging and "home".
This can benefit residents' well-being and reduce depression, which is associated with worse clinical outcomes, impaired role and social functioning, and increased hospitalisation.
Concretely, this can be expressed by clustering residents into a shared living space, the size of a four-room Housing Board unit, for example, while maintaining privacy with single or twin bedrooms.
Each unit should be self-sufficient, with living and dining rooms, toilets as well as a kitchen. Even seniors with dementia can be encouraged to use their residual abilities in housekeeping and making simple meals, thereby maintaining their independence which would, in turn, reduce medical manpower needs.
There is potential for relationships to flourish, as seniors living in the same unit can help each other and continue to grow as persons. Although the memory of a person with dementia may be declining, their ability to emotionally connect is often retained till late in the disease process. Similarly, consistent assignment of staff to the residents is important to promote bonding.
Nursing homes in Singapore should adapt to the more sophisticated requirements of increasingly well-educated seniors by looking beyond our current medical and institution-based model, and towards a holistic and humanistic approach grounded in residents' emotional and socio-psychological needs.
Locally, nursing homes have, for a long time, been stigmatised and associated with negative stereotypes. In 2012, Nightingale Nursing Home employees were filmed mistreating an elderly resident, while the construction of nursing homes in Bishan aroused displeasure among neighbours, evoking the not-in-my-backyard (NIMBY) syndrome and highlighting the lack of societal support and acceptance of nursing homes.
Perhaps if nursing homes can evolve from crammed institutions to real homes with private spaces, they will be seen in a more positive light and NIMBY syndromes can be overcome. It seems likely that many more Singaporeans will stay in long-term care facilities in the years to come.
Ultimately, we must decide what we want for ourselves, and the curtailed Jade Circle nursing home model of single resident rooms is a timely call for such conversations.
- Gerald Koh is an Associate Professor in Saw Swee Hock School of Public Health of the National University of Singapore and Philip Yap is a Senior Consultant Geriatrician in a public hospital.