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LONG-TERM CARE:
The Good, the Bad, and the Ugly

by Rudy P. Friesen, MAA, AAA, SAA, FRAIC, Hon FAIA, LEED® AP
Founding Partner ft3


The Cracks in Long-Term Care are Widening to Dangerous Proportions

For better or for worse, the cracks in long-term care are widening to dangerous proportions. We read of them in dramatic headlines like: BC senior pushed to her death in care home (Vancouver, Oct. 2012); Dementia home fight leaves 91-year old woman dead (Halifax, Oct. 2013); Nursing home homicide probed, senior arrested (Toronto, Nov. 2013) (1). We personally know of residents who feel isolated, devalued, and depressed, who want to "go home". Research by the Dutch Alzheimer Association has determined that 60% of long-term care residents never receive visitors, and that long-term care residents spend an average of 96 seconds per day outdoors (2). We hear experts like Dr. Bill Thomas say: "…in the nursing home every year, thousands and thousands of people die of a broken heart. They die not so much because their organs fail, but because their grip on life has failed." (3). Is it any wonder?

These problems are bound to get worse. It is estimated that 80% of long-term care residents have dementia and that the number of Canadians with dementia is estimated to double in the next 25 years to over one million (4). Many of these will be Boomers who continue to change cultural norms and social institutions as they age. At ft3, we predict they will likely not stand for how most long-term care is currently delivered; they will demand change.

Medical / Institutional Model

Long-term care was originally based on the medical model. As a result, facilities for the elderly became institutional in nature, not unlike hospitals. It then followed that the delivery of care was also based on the medical model: fixed schedules for all activities, hierarchy of staff, large and impersonal spaces, etc. Long double-loaded corridors, visible from central nursing stations, reinforced this model. Architectural planning guidelines from the 1970s recommended that natural light be provided to the resident rooms, but not to the corridors, so that residents would "stay in their rooms where they belong" (5).

This model ensured that residents were effectively warehoused; they became isolated and segregated from society. Such warehousing was tacitly supported by a North American culture obsessed with youth, one that saw seniors as useless, aging as a medical problem, and drugs as the solution – a culture that valued the efficiency of a one-size-fits-all design. Not surprisingly, many residents felt isolated, devalued, depressed, and alienated. Some became agitated and behaved in disruptive and violent ways. Suppressants were administered, which made residents more manageable but also impaired their cognition.

Decades later, and despite growing cracks, long-term care facilities are still being designed and constructed on the basis of the medical / institutional model. However, long-term care is changing, here and abroad. At ft3, we have been following this development with keen interest for many years.

Household Model Exemplars

De Hogeweyk is a long-term care facility near Amsterdam for seniors with severe or extreme dementia. Until 1993 it operated as a traditional nursing home, four storeys in height, anonymous wards, locked doors, crowded dayrooms, and non-stop TV. Meals, made in a central kitchen, were at set times. Nurses wore uniforms. The result was many heavily sedated residents, unhappy families, and high staff turnover. "It wasn't living. It was a kind of dying." (6). After several staff lost their mothers, they admitted relief that they had died without needing to live in such a place. It got the staff thinking about what they were doing: "running a home that we would not want our own mothers to live in." (7).

A radical rethink began. The existing facility was modified to create smaller, more home-like units. But eventually it was demolished and a new one constructed: a two-storey building with 23 households, each with six to seven residents. These households were designed to be as similar as possible to normal homes, each with its own kitchen, allowing meals to be prepared by multi-skilled staff who would also perform all other tasks in their assigned household. The household designs reflect seven different lifestyles: homey; well-to-do; urban; cultural; Indonesian; traditional; and Christian. A selection guide, based on interests (professional, political, religious), preferences (music, art, food, hobbies), social or private activities, and daily routines, is used to determine which lifestyle is most suitable for a resident.

According to staff, the residents have shown dramatic improvement; they need less medication and remain calmer. Their families are full of praise and gratitude. The Netherlands Alzheimer's Foundation calls De Hogeweyk 'exemplary'. In 2013, ft3 toured this facility, engaged with staff, visitors, and residents, and was inspired by its leading-edge thinking and impressive results.

Le Chez Nous is closer to home. In 1990, a major re-think began in the town of Notre Dame de Lourdes, in southern Manitoba. The staff at Foyer Notre Dame, a long-term care facility, began noticing a disturbing pattern: an increasing number of residents with dementia; increasing incidents of physical aggression by residents resulting in serious injuries to staff and other residents; a major increase in elopements with related injuries; deteriorating staff morale; increasing complaints from families; and a negative image of the Foyer in the community.

Their re-think, which was partly inspired by our work at Bethania Personal Care Home, resulted in radical changes. A part of their existing building was renovated to create a 12-resident Alternative Care Unit based on a model they called 'Chez Nous' (our home). Multi-skilled staff performed all tasks, including food preparation, housekeeping, and activities. Routines instead of schedules were emphasized, resulting in flexible bath and meal times. The furnishings were familiar, lighting was residential, residents had free access to the outdoors, and there was no nursing station.

These changes made for happier, more relaxed, and socially active residents. Drug use dropped significantly, as did incidents of elopement. There was also a decrease in aggressive behaviour and a reduction of stress among staff (8).

Other Initiatives that Support the Household Model

SAGE (Society for the Advancement of Gerontological Environments) advocates the household model (9). The Evergreen Retirement Community in Oshkosh, Wisconsin, is based on SAGE principles (10). Its design features 11 resident households and utilizes multi-skilled staff that, for example, also clean rooms and visit with residents. At ft3, we have become familiar with the governance and programming of this type of facility through its former CEO who is a founding member of SAGE (11).

The Eden Alternative is a franchise dedicated to creating well-being for those who live with dementia by providing alternatives to drug use (12). It advocates elder-centred communities: residents have close and continuous contact with plants, animals (cats, dogs, birds), and children; variety, spontaneity, and meaningful activities are encouraged; medical treatment is servant, not master; there is maximum decision-making by residents or those closest to them; companionship and human growth are nurtured; and laughter is stimulated. The Sherbrooke Community Centre in Saskatoon, Saskatchewan, with nine-resident households, is an example of such a franchisee facility.

The Green House Project offers a more radical approach to long-term care (13). Existing institutional nursing homes are demolished and replaced with small homes. More than 100 nursing homes in the US have already been replaced. Each small home has eight to ten residents in private rooms; an open kitchen and great room (living / dining) plus a small den, spa, and office. A large patio provides the opportunity for outdoor activities. While these homes can fit into any residential area, there are no central facilities that can be shared with other households, reducing the opportunity for socializing. Some franchisees are using this model to create multi-household developments. An example is the Leonard Florence Center for Living in Chelsea, Massachusetts (14). Here, five residential floors each contain two 'homes' (households) based on the Green House design. The homes are entered from a shared elevator lobby, and the main floor contains various common areas.

The Harvey Picker Center for Innovation and Applied Research in Long-Term Care was established in 2012 through a collaborative relationship between the Picker Institute and the Planetree organization, both of which support person-centered care. The Center provides funding for research into innovative practices in long-term care (15). It advocates: resident-centered / relationship-centered care; culture change; high resident, family, and staff satisfaction; and the participation of residents in decision-making and policy setting.

A business case for the household model can be found in An Editorial and Technical Brief on The Household Model Business Case prepared by Steve Shields and David Slack. Both authors have extensive experience in managing long-term care facilities. This report argues that there are many good reasons to choose the household model, and it challenges the misperception that the costs of the household model are higher than the medical / institutional model. The authors have determined that construction costs for the household model are similar, labour costs are lower, and the quality of services is better. Among other things, the authors advocate that residents drive their own lives, as they did at home; that the organizational structure consist of decentralized self-led staff teams that also prepare all food in the households; that the physical and cultural design reflect a sense of home; and that the capital and operational model is financially viable and sustainable.

Evolution of Long-Term Care and ft3

At ft3, we understand the good, the bad, and the ugly of long-term care. We have been designing facilities for seniors – along the continuum of independent living, assisted living, supportive living, and long-term care for more than 35 years. This continuum spans two of our firm's specialities: multi-unit housing; and health and wellness (16).

Over the years, we have completed projects with close to 1,700 new and renovated beds, and 1,500 suites for seniors. We continue to research the trends in long-term care around the world, and have presented our findings at conferences in North America and Korea.

We believe that a transition from the medical / institutional model to the household model (and beyond) is needed along the entire continuum. Our experience and research in long-term care bears this out. More of our clients are pushing for this. And public policy may not be far behind.

We got our feet wet with a 40-bed facility in rural Manitoba, and then moved on to design the Maples Personal Care Home, a 200-bed facility in the City of Winnipeg. The Maples featured a day care for the children of staff; a downtown area designed like a shopping centre; a licensed lounge; a chapel; decentralized dining; and numerous residential touches. This was the early 1980s and these were all good things considering dominance of the medical / institutional model. But the bottom line remained: we were still designing boxes with large 20-bed wings and long institutional corridors.

When it came time to expand the Bethania Personal Care Home, a board member who was a nurse, challenged us to "eliminate corridors" in order to de-institutionalize the new areas and create a more home-like environment. Our response: two 20-bed wings with rooms around central spaces, thereby minimizing corridors; and one 10-bed Special Care Unit with no corridors. We divided large common areas into more intimate spaces, and infused the facility with natural light. These were small but significant steps toward the household concept. They inspired the staff at Foyer Notre Dame to create the Chez Nous (our home) model. In turn, this model inspired the first in the next generation of long-term care facilities, in Fisher Branch, Manitoba.

The small community of Fisher Branch in Manitoba's Interlake caught the spirit of Chez Nous; it became their beacon as they embarked on the development of their new long-term care facility. We were given the opportunity to design what would become a seminal household project, the Fisher Personal Care Home. Together, we developed a plan based on 10-bed households. Each cottage-like household was designed with bedrooms grouped around a light-infused living / dining area and access to the outdoors via a screen porch. The households were clustered around a 'downtown' or 'village square', creating a sense of neighbourhood. Many of those attending the facility's open house in 1999 – people of all ages – were delighted, and voiced their desire to someday live in a place like this. The results were good: happier residents and staff; significantly less drug use than at other facilities in the province (17).

Around the same time, ArlingtonHaus in Winnipeg, a seniors home which had been built in the 1960s, was grappling with two challenges: an increasing number of people with early to middle stages of dementia; and studio suites that nobody wanted to live in. We responded by renovating two floors of their existing 11-storey building. Each floor became a household for 10 residents. Two existing suites on each floor were converted to a common area, including a kitchen, dining room, and living room. This allowed activities, meal preparation, laundry, and other tasks to be done by multiskilled staff. All resident suites were upgraded. The existing corridors were also renovated to create turnarounds at each end, thereby providing a fluid, relaxing, and safe walking path for the residents. This project, jointly carried out by Manitoba Housing, Manitoba Health and Bethania Personal Care Home, was featured in Housing Options for People with Dementia published by CMHC in 2002.

While communities and facilities often take the initiative, in Saskatchewan, public policy is driving the change towards the household model. The Saskatchewan Ministry of Health Design Guidelines for LTC Facilities advocates caring environments that nurture the holistic well-being of residents, support relationships and community, and encourage the growth and development of both residents and staff. They call for Resident Homes (households) to have no more than 15 residents, provide homestyle living, be largely self-contained, and have a kitchen where, preferably, all meals are made. They also specify the need to create neighbourhoods, community spaces, and internal streets with "sites, sounds and smells." In 2009, we began working with the Heartland Health Region to design new Integrated Health Centres in the towns of Kerrobert, Rosetown and Biggar in central Saskatchewan. A total of 138 beds. In keeping with the province's policy guidelines, we have created a variety of household layouts for 10 to 15 residents each. Since integrated health centres require central kitchens, meals will be prepared centrally but served from residential kitchens in each household. These centres are currently finishing construction and will open in early 2014.

We are inspired by Salem Home in Winkler, Manitoba. Despite the challenges and limitations of their large, institutional facility, they are working to make it more home-like. And they are committed not just to person-centered care, but also to relationship-centered care. Our relationship with Salem goes back 30 years, to 1983, when we designed a major 65-bed expansion for them. This included a semi-circular 10-bed Special Care Unit, designed without corridors. Since then, we have designed various projects for Salem. In 1999, we designed a 20-bed addition with two 10-resident households. Recently, we used our highly effective workshop process to help them develop a long-range plan with various options for future expansion. Increasing the size of the Special Care Unit has been identified as a high priority. So has Salem's commitment to QUIS-EH-O, a relationship-centered care concept (quality of interactions between residents, staff, volunteers, and family members) (18). They are also working to create smaller households within the earlier phases of the facility.

The CareCom development in Calgary is taking it even further. This project, currently on the drawing boards, will be a mixed use, high-density development with a major focus on housing for the elderly. We are currently investigating ways to integrate the whole continuum of seniors care into the same building. And to integrate the project into the broader community, mixing generations.

DESIGN MATTERS

We believe that good long-term care requires changes in four interdependent areas, and that design is key. Our research and experience tells us this. So do our clients.

Improving residents' quality of life is critical, and home-like design does that. Instead of putting their coats on, sitting by the front door, and wanting to go home, residents feel they are at home. Instead of feeling isolated, devalued and depressed, they feel connected, valued, and happy in a convivial environment.

Managing behavioural problems, as the headlines and anecdotal evidence suggests, is becoming more critical. We believe that evidence based design is a healthier alternative to drugs. Instead of acting agitated, disruptive, or violent, residents are soothed by their environment and able to act more relaxed. Instead of ingesting costly suppressants that impair cognition, residents are nourished by design that enhances alertness.

Changing cultural attitudes about the value of seniors is the first step, followed closely by insisting on their moral right to humane design. We need a greater collective will to move from industrial values that favour institutional one-size-fits all efficient design, to post-industrial values that favour community-oriented, effective design. And we need to move from a youth-obsessed culture that sees seniors as useless and aging as a medical problem, to a human potential culture that sees seniors as able to grow and aging as a natural process. If not for our fellow human beings, then for our loved ones and for ourselves.

Creating cost-effective, home-like facilities is possible not only for new but also old construction, and forward-thinking design is key. Instead of facilities that warehouse seniors, our communities need home-like facilities that engage seniors. Instead of facilities that isolate and segregate seniors, we need facilities that integrate seniors into society. Research shows it is not more expensive to do so.

Getting to specifics, here are some ideas, recommendations, and questions.

While many of the initiatives advocate person-centered care and some advocate relationship-centered care, a successful facility will do both.

While the goal is to create home-like environments, why not include a sense of the kind of home the residents remember, as well as a sense of place?

The sizes of households – i.e., number of residents, will be determined by considering various factors such as staffing ratios, number of households, etc. – basically a balance of culture and finance. It is important to remember that the smaller the household, the less likelihood of aggressive behaviour. The larger the household, the more opportunity for socialization and intimacy. The creation of neighbourhoods, i.e., several households, will also achieve this.

The preferred staffing model for a successful household relies on multi-skilled staff who are assigned to each household. Staff do more than perform tasks: they also befriend the residents.

It is preferable for food preparation to take place within each household so that residents can benefit from cooking aromas and participate in the food prep. This gives them a sense of worth. In some cases, a central kitchen may be preferable or necessary. However, residents need to be compensated, somehow, for the lack of kitchen in their household.

Why not strive for more integrated communities? We can begin by integrating long-term care with other types of seniors facilities. Then we can integrate long-term care with other housing types, different age groups, and socio-economic levels. As the Green House model (see Green House Project) illustrates, freestanding households for eight to 10 residents can be self-sufficient. However, it is desirable to provide access to central activity areas, etc. The second Green House example has done this by stacking the households – two per floor on five floors – with access to activity areas on the main floor. Why not have alternate floors of assisted or independent living? Or have a household share a floor with another type of seniors housing? Or with another form of intergenerational housing? Why not locate a household anywhere within a multi-use complex, provided that access to activity areas is controlled where residents have dementia, and as long as there are enough households in the complex to provide the economic scale for financial viability?

If this is the future of long-term care, why not begin now?

ENDNOTES

1. CBC News, www.cbc.ca/news/canada
2. De Hogeweyk management cited in: "A home is a home," World Health Design, Jan. 2011, p. 49.
3. TED Talk by Dr. William Thomas.
4. CBC News, www.cbc.ca/news/canada
5. SAGE PLACE Resource Manual, 2011, p. 15.
6. Yvonne van Amerongen, one of the founders of De Hogeweyk, quoted in "Dementiaville: How an experimental new town is taking the elderly back to their happier and healthier pasts with astonishing results," Mail Online, www.dailymail.co.uk/news/article-2109801
7. Jannette Spiering, Director and one of the founders of De Hogeweyk, quoted in: "A Second Life," The Times Magazine, 16.06.12.
8. Ulysses Lahaie, RN, BN, and Jacqueline Theroux, RPN, "Le Chez Nous Accommodation with a Difference for Cognitively Impaired Persons in Rural Manitoba," in Shelter and Care for Persons with Dementia, Gloria Gutman ed. Vancouver: Gerentological Research Centre, Simon Fraser University at Harbour Centre, 1992.
9. SAGE (the Society for the Advancement of Gerontological Environments) was founded in 1994 by a multidisciplinary group of volunteers with financial support from the Rothschild Foundation, all committed to "improving the quality of life for elders in long-term care settings." The group has developed a process they call SAGE PLACE (Programming for Living and Achieving Culture Change Environments), to assist "organizations on the journey to Person Centered Care (about relationships) through culture change." A Resource Manual has been produced that describes this process in detail. Although there is minimal commentary on the physical environment, this organization clearly advocates the household model.
10. The Evergreen Retirement Community in Oshkosh, Wisconsin, constructed when David Green, one of the SAGE founders, was its CEO.
11. Workshops led by David Green for representatives of CareCom, Calgary, AB, 2012.
12. The Eden Alternative, inspired by the Garden of Eden, was established by Dr. William Thomas in 1994.
13. The Green House franchise initiative was started by Dr. William Thomas when the Robert Wood Johnson Foundation provided him with a five-year, $10 million grant to support its launch.
14. "Insights and Innovations: The State of Senior Housing," Design for Aging Review, 11, various references.
15. See www.planetree.org
16. Long-term Care facilities have traditionally been considered to be part of 'health care' whereas other forms of seniors facilities such as Assisted Living and Supportive Living have been considered to be 'housing'. However, definitions are evolving. For example, Alberta Health Services, in its Design Guidelines, divides the spectrum of housing for seniors into three streams: Home Living (Independent Living) Supportive Living (Levels 1 to 4); and Facility Living (Long-term Care). These Design Guidelines describe requirements for Supportive Living facilities that are similar to those for Long-term Care, including the Group B Division 2 occupancy classification as per Alberta Building Code. Supportive Living facilities must also meet the requirements of the Supportive Living Accommodation Licensing Act, whereas Long-term Care facilities are governed by the Nursing Home Act and Long-term Care Accommodation Standards. See "Design Guidelines for Continuing Care Facilities in Alberta" dated Sept. 28, 2012.
17. Rudy P. Friesen, "Out of the Box and into Community," 6th Annual Dreambuilders Education Conference, Bethany Care Society, Calgary, AB, Nov. 3, 2000; "Healing in the Long-term Care Environment," Symposium on Healthcare Design, Anaheim, CA, Nov. 30, 2000.
18. QUIS (Quality of Interactions Schedule), a program established in the United Kingdom in 1993, adopted by Salem Home and expanded to include EH (Environmental Health) and O (Organizational Health).