Long-Term Care PDF

Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. 12 Long Term Care Compassionate and respectful care of older adults living in long term care facilities is incredibly important for families, friends, and, of course, the residents who live there. Here are the top 10 ways that facilities truly stand out! @g m ai l.c om 1. Keeping family members up to date on day to day activities through blogs, social media, or electronic communication. 2. Having sing alongs with local daycares and schools. 3. Encouraging residents to eat together to foster a sense of community. 4. Getting residents to engage in physical activity such as through dance or ﬁtness classes. 5. Having communal kitchens so residents can cook together and with loved ones. 6. Oﬀering lectures on topics such as literature, art, and music. 7. Engaging residents to plant and tend to vegetable or herb gardens that provide fresh foods. 8. Celebrating holidays and birthdays as a community. 9. Having regular social activities, such as game, movie, and trivia nights. 10. Allowing residents to make their living quarters feel like home, such as by hanging treasured artwork or bringing in their favourite furniture. an.t. lis te r Have you ever lived in an institution? Your ﬁrst response may be no, unless you have been hospitalized for a physical or psychological disorder. However, think about the question in a slightly diﬀerent way and you might realize that it’s more accurate to say “yes.” If you live in on campus housing, then it’s fair to regard the situation as involving institutional living. Dormitory residents live under one roof, are not related to each other, and are there because they share a similar position in life. In a dormitory, as in a hospital setting, residents must deal with problems that come with communal living, such as being unable to control many aspects of the environment, needing to answer to people in charge, eating food prepared for a large number of people, and being assigned to live with a stranger. In this chapter, we deﬁne an institutional facility as a group residential setting that provides individuals with medical or psychological care. Hospitals are short term (or acute care) institutional facilities to which people are admitted with the understanding that they will be discharged when they no longer need round the clock treatment. At the other end of the spectrum are long term institutional facilities into which an individual moves permanently after losing the ability to live independently. ki er Closely related to the issue of institutional care is that of the funding for health care, another topic we cover in this chapter. Individuals hospitalized for physical and psychological problems in later life are increasingly confronting the rising cost of health care as a barrier to eﬀective resolution of their diﬃculties. In addition to the problems that result from failure to receive proper treatment, this situation creates considerable stress and anguish for the older individual and that individual’s loved ones. Although you may not spend much time thinking about the health care coverage available to you in your later years, you are surely aware of the intense debate about the future of health care in the coming decades. Much of this discussion has centred on “apocalyptic demography,” the oversimpliﬁed belief that a demographic trend like population aging has dire consequences (Chappell, 2011, p. 3). In the Canadian context, this discourse has centred on the extent to which we can sustain existing models of health care for future cohorts and the alternative models that are available, viable, and aﬀordable. From oﬀering public options for health insurance to making prescription medications more aﬀordable for older adults, health care is one of the most crucial issues facing Canada as well as many other countries. Simply put, how can Canadians design a health care system that integrates formal care from public and/or private sources and informal care from family caregivers in a cost eﬀective and sustainable manner? How can we target those older adults that need the most support? From a biopsychosocial perspective, these large scale social factors can have signiﬁcant impacts on the health and well being of the older population. AN OVERVIEW OF LONG TERM CARE There is no common deﬁnition of long term care in Canada. The National Institute on Ageing (NIA), a public policy and research centre based at Ryerson University in Toronto, deﬁnes long term care as: “A range of preventive and responsive care and supports, primarily for older adults that may include assistance with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) provided by either not for proﬁt and for proﬁt providers, or unpaid caregivers in settings that are not location speciﬁc and thus include designated buildings, or in home and community based settings” (NIA, 2019a, p. 7). In some provinces Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. (e.g., Alberta), long term care is referred to as continuing care. Other provinces have more narrow deﬁnitions of long term care. For example, in Ontario, long term care refers only to nursing homes (NIA, 2019a). Note that the deﬁnition indicates that long term care is “primarily” for older adults. However, people of all ages may need long term care if, for example, they have an unexpected debilitating illness or a traumatic injury. For example, according to 2018–2019 data from the Canadian Institute for Health Information (2019), about 7 percent, or almost 13,000 residents of long term care homes, are younger than 65 years of age. The problems of younger adults range from traumatic injuries (e.g., spinal cord injury, concussion) to progressive disorders (e.g., multiple sclerosis). Unfortunately, we know very little about their speciﬁc needs, and long term care policies and practices often assume that all residents are old. ai l.c om Figure 12.1 illustrates the continuum of long term care facilities for older adults and shows the patterns that may characterize the living arrangements as individuals move along the continuum of care from fewer to more supports, moving back to lesser care if they are able to do so. The process begins with older individuals living on their own, or in a group setting such as an assisted living facility. In either care, they may receive home care. When there is an acute health event (such as a broken hip or stroke), they will then require hospitalization. From there, they may be placed in an acute rehabilitation facility and either return home or to the assisted living facility. However, if they require more care than is required in these settings, they will be transferred to a nursing home. The process may continue through cycles if the individual experiences a health event, potentially culminating in death in a hospice (which we discuss in Chapter 13). The process is further complicated if an older adult has a major neurocognitive impairment, a signiﬁcant risk factor for relocation to a higher level of care such as a nursing home. As you can see, the progress of individuals through institutional living can become quite complex. ki er an.t. lis te r @g m As you know from Chapter 1, the Canadian population is aging and the number of people over the age of 85 has grown dramatically. It is estimated that by 2051, almost 25 percent of older adults will be age 85 or older. This has signiﬁcant implications as, in 2016, nearly one third of people aged 85 and older lived in collective dwellings such as nursing homes and seniors’ residences (Statistics Canada, 2017a). Figure 12.2 indicates the percent of the population 85 and older that lived in various collective dwellings, by age group, in 2016 (Statistics Canada, 2017a). Canadian provinces and territories are currently struggling to keep up with the demand for high quality long term care within already strained health care budgets, as people live longer with more complex physical and mental health needs (NIA, 2019a). This will become even more of a challenge as the population ages. FIGURE 12.1 Continuum of Long Term Care This continuum of care shows the trajectory that care for older adults takes as individuals progress from independent living to nursing homes, and ultimately to a hospice for end of life care. ai l.c om Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. @g m FIGURE 12.2 Proportion of the Population Aged 85 and Older Living in Collective Dwellings, by Type of Collective Dwelling and Age Group, in 2016 an.t. lis te r As shown in this graph, the proportion of people aged 85 and older living in nursing homes increased from 35.3 percent for people aged 85 to 89 to 52.8 percent for centenarians, while the proportion living in seniors’ residences decreased from 39.7 percent to 22.1 percent for the same age groups. Source: Statistics Canada. (2017a). A portrait of the population aged 85 and older in 2016 in Canada. (Catalogue no. 98 200 X2016004). Ottawa, ON: Author. Retrieved from https://www12.statcan.gc.ca/census recensement/2016/as sa/98 200 x/2016004/98 200 x2016004 eng.cfm ki er Grignon and Spencer (2018) indicate that long term care accounts for about 12 to 16 percent of total health care spending in Canada, with home care accounting for 10 to 30 percent of long term care expenditures. Projected costs of public care in nursing homes and private homes will triple between 2019 and 2050, from $22 billion to $71 billion (MacDonald et al., 2019). As these authors rightly point out, this is only part of the picture. Family caregivers are the major source of support for older adults, and, as baby boomers age and fertility rates decline, there will be much more pressure on family members (usually women) to provide unpaid care. MacDonald et al. (2019) indicate that by 2050, approximately 120 percent more older adults will be using home care and there will be 30 percent fewer close family members potentially available to provide care. They will be expected to increase their caregiving activities by 40 percent. These authors state, “ Baby boomers are strongly advised to take a long, hard look at their own personal circumstances and plan ahead, to the extent that they have the health and ﬁnancial means to better protect their future and possibly more vulnerable selves. At the public policy level, eﬀective reforms require long lead times, so developing long term care options should be an immediate and high priority” (MacDonald et al., 2019, p. 9). National surveys reported that 63 percent of Canadians indicated that they were not in a good position (ﬁnancially or otherwise) to care for older relatives if they needed long term care (Ipsos Public Aﬀairs, 2015) and 88 percent were concerned about the costs of caring for an aging population (Ipsos Public Aﬀairs, 2019). Many Canadians do not realize that facility based long term care is not covered by the Canada Health Act, and it is not a fully insured health service in any province or territory. Each jurisdiction is responsible for providing long term care, and there is considerable variability across provinces in the terms that are used to describe diﬀerent levels of care. The exception to the provincial responsibility for long term care is Veterans Aﬀairs Canada, which provides care for qualifying veterans and their spouses through agreements with the provinces and territories. Each province and territory has its own system for funding long term care with a mix of privatized and publicly funded services. Approximately three quarters of the funding is paid by provincial and municipal resources, while the remainder is paid for by individuals (Canadian Health Coalition, 2018). Most people do not understand that they are expected to pay for many long term care services. For example, nursing home residents are required to pay to live there (these fees are often referred to as accommodation co pays), and the amount they have to pay varies signiﬁcantly depending on what province or territory they live in. It also depends on their income (i.e., your care may be subsidized if your income is low) and the type of room they prefer (e.g., semi private vs. private room). Depending on where you live, these co payments can range from $1,000 to $3,400 per month Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. (Canadian Health Coalition, 2018). Figure 12.3 indicates various accommodation costs in selected provinces, according to a 2018 policy brief provided by the Canadian Health Coalition (2018). Moreover, there may be additional costs, such as for prescription drugs (some provinces pay only part of these costs), and for specialized care needs and services—for example, hiring outside workers to provide more personal care beyond what is provided by the facility. These accommodation and additional costs can be a signiﬁcant burden to older adults with fewer ﬁnancial resources. This is particularly true if one spouse enters long term care and the other remains in their home, as not every jurisdiction takes this into account when assessing the co payment fees. These costs are increasing and will continue to do so. Wealthy older adults who can pay the full cost of their care have a range of high end, private residential options to choose from. These facilities typically charge a base amount and add additional fees depending on the level of care provided. For example, extra fees may be assessed for administering more medications or managing incontinence. With these extra fees, residential costs in the most expensive facilities can exceed $10,000 per month. However, as we will see later in this chapter, many factors contribute to high quality care, and paying more is no guarantee that you will receive better care. @g m ai l.c om Grignon and Bernier (2012) reviewed the various options for ﬁnancing long term care in the future, including private savings, private insurance, and universal public insurance. They concluded that saving for long term care is unrealistic. According to their estimates, on average, individuals would need to save $7,500 per year over a 40 year period, for a total of $300,000. They note that no country in the world has relied exclusively on private savings to fund long term care, and they view this as an ineﬃcient system for Canada. Private long term care insurance has not gained popularity in Canada, with less than 1 percent of Canadians holding this type of insurance. This may be because many Canadians mistakenly believe that long term care is fully paid for by public programs, because they deny a risk that could aﬀect them in 20 to 30 years, or because they cannot aﬀord long term care insurance. Grignon and Bernier (2012) suggest that the best solution is a universal public insurance plan with a single payer that provides full coverage based on a standardized evaluation of care needs. This would alleviate the uncertainty around accessing care in old age and would be a more equitable and eﬃcient way of structuring long term care in Canada. As you can see from Figure 12.4, Canada spends signiﬁcantly less on publicly funded long term care than many other developed countries (Organization for Economic Co-operation and Development, 2017). As shown in this table, long term care costs and funding policies vary signiﬁcantly between provinces. Accommodation Province Co pay (per month) Variation Based on Subsidy/Rate Reduction Alberta Between $1,673 and Accommodation Seniors on social assistance may have their charges partially or fully $2,036 type covered an.t. lis te r Ontario $1,848.73 for basic accommodation $2,640.78 for a private room Low income residents can apply for a subsidy through the Long Accommodation Term Care Home Rate Reduction Program for the cost of basic type accommodation British Between $1,130.60 Columbia and $3,278.80 Income New Maximum rate of Brunswick $3,437 Accommodation Residents unable to aﬀord the co pay can apply for a subsidy based type on monthly income ki er Manitoba $1,092 to $2,550 Additional subsidy for eligible residents Income FIGURE 12.3 Accommodation Co pay in Selected Provinces * Note: This includes public and private facilities, except in British Columbia, where only public facilities receive government funding. In long term care facilities in British Columbia without public subsidies (which are usually called “licensed beds”) residents bear the full cost of care and accommodation, at an average of $6,000 a month. Source: Canadian Health Coalition. (2018). Ensuring quality care for all seniors. Ottawa, ON: Author. Retrieved from http://www.healthcoalition.ca/wp content/uploads/2018/11/Seniors care policy paper.pdf Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ai l.c om FIGURE 12.4 Long Term Care Expenditure (Health and Social Components) by Government and Compulsory Insurance Schemes, as a Share of GDP, 2015 (or nearest year) Across OECD Nations Canada spends signiﬁcantly less than other developed countries on publicly funded long term care. Source: Organization for Economic Co-Operation and Development. (2017). Health at a glance 2017: OECD indicators. Paris, Fr: Author. Retrieved from https://www.oecd ilibrary.org/docserver/health_glance 2017 en.pdf? expires=1595879070&id=id&accname=guest&checksum=A68F7A489280420C196D3B78AE3FED4C. ki er an.t. lis te r @g m Recognizing that the names for diﬀerent levels of care vary across Canada, for the purposes of this chapter we will divide the discussion into community based services such as home care and adult day programs, supportive living (or assisted living), and nursing homes. Long term care insurance is not a popular option among Canadians looking to ﬁnance the cost of their care as they grow older. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. Community Based Services Older adults who choose not to live in a residential facility but still need some type of care can take advantage of a number of support services that allow them to live independently in their own homes. The residential environment of the older adult can be conceptualized along four dimensions, including the aesthetics and safety of the local area, convenience of access to shops and services, positive regard and mutual help among neighbours, and the attractiveness and ease of accommodation within the home. Each of these represents qualities of the physical environment, rather than the perceived environment. Research evaluating their contribution to the older adult’s adaptation to the community suggests that the reality of the environment plays a crucial role in inﬂuencing well being and satisfaction (Rioux & Werner, 2011). ki er an.t. lis te r @g m ai l.c om The concept of aging in place refers to the principle that with appropriate services, older adults can remain in their own homes, or at least in their own communities (Gillsjö et al., 2011). Taking advantage of the same multidisciplinary focus so important for institutional care, older adults can beneﬁt from interventions that allow them to maintain their autonomy and previous patterns of living (Szanton et al., 2019). The aging in place movement should also be bolstered by advances in digital technology that can supplement the services provided to older adults by connecting them to online sources of support. Other assistive technology advances can also beneﬁt older adults living at home, including adaptive toilets that allow height and tilt adjustments, as well as emergency notiﬁcation (Mayer et al., 2019). Figure 12.5 shows suggestions for modiﬁcations to the home that can help facilitate aging in place. The lowering of water temperature is intended to reduce burn risks. Maintaining a smart home will also permit older individuals to be able to not only call in the case of emergencies but also to stay on top of weather or other community alerts. FIGURE 12.5 Key Elements of the Aging in Place Model According to the model of aging in place, older adults should be able to remain in their own homes as long as possible with the supports shown here. Home Care Services Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. Bringing services into the home is the focus of home care, which provides assistance to older adults within their own private residences. These include “Meals on Wheels,” the provision of a hot meal once a day; so called “friendly visiting,” in which a volunteer comes to the home for a social visit; and assistance with shopping. Other home based services provide assistance with light housekeeping, such as laundry, cooking, and cleaning. Home health care services may also include the types of restorative services that nursing homes provide, such as physical therapy, speech therapy, occupational therapy, rehabilitation, and interventions targeted at particular areas of functional decline. The home health care worker comes right into the individual’s home, bringing along equipment as necessary. The advantage to home health care over institutional care is that the older adult can remain at home, staving oﬀ institutionalization or hospital/emergency room care. Moreover, home health care workers can teach older adults in their care how to maximize their mobility through such measures as fall prevention, muscle strength training, and home safety (Gitlin et al., 2009). However, some home health care workers cannot provide skilled nursing to their clients nor can they perform heavy maintenance or assistance in areas outside of health services, such as paying bills. ai l.c om Home care is a vital part of the health care system for a variety of reasons. First, as shown by survey after survey, people prefer to receive care at home. Second, home care is cost eﬀective (Hollander & Chappell, 2007). Governments are keenly aware of rising health care costs, and home care is viewed as one way to reduce health care budgets. In order to be cost eﬀective, home care must be integrated with other components of the health care system, with eﬀective linkages and coordination by case managers who can guide patients through the health care system. For example, the Home at Last program in Ontario helps older adults and adults with special needs make the transition from hospital to home by facilitating the discharge process, providing supportive services, assisting in future care planning, and minimizing the risk of readmission. Home care, like long term care in general, is an underfunded and undervalued sector of the health care system. an.t. lis te r @g m Gilmour (2018) estimated that, in 2015/2016, over 430,000 adult Canadians had unmet home care needs. Those that are most likely to have unmet needs are: low income older adults, caregivers, older women, immigrants, the oldest Canadians (85 years and older), older adults with physical limitations, and older adults who live alone (Sinha et al., 2016). The lack of home care support has resulted in about 40,000 older Canadians waiting for beds in nursing homes, often residing in expensive hospital settings (NIA, 2019a). These individuals are known as Alternate Level of Care (ALC) patients; they reside in hospitals but no longer need such a high level of care but are simply waiting for a long term care bed. Often they are medically stable but have symptoms of dementia and are waiting for nursing homes that can provide the right level of behavioural support. Many do not have a strong support system in place to address their complex needs. This is an expensive and resource intensive option for the health care system and a poor living environment for older adults, who may experience further decline in overall health and well being as a result of their extended stay in a hospital setting. Picard (2019) reported that, in Nova Scotia, about one third of hospital beds are occupied by ALC patients, at a very signiﬁcant cost to the health care system. ki er Thus, lack of funding for home and community based care and greater reliance on hospital based care is an ineﬃcient use of health care dollars. Relative to other OECD countries, Canada ranks 24th out of 27 countries in the proportion of long terms care dollars spent on home and community based care at 13 percent. In contrast, Denmark spends 64 percent of its long term care budget on home and community based care (Organization for Economic Co Operation and Development, 2017). More funding for home and community care was a priority in the 2017 federal budget (Department of Finance Canada, 2017). Like institutional care, home care is not an insured service under the Canada Health Act, and provinces and territories fund a limited amount of home care options, provided by both private and public agencies. There is tremendous variability in access to home care, both across and within provinces and territories, and in the implementation of co payments and user fees. For example, some regions use a means test to determine access to home care services, while others have established a maximum level of care that all persons receive. However, once that maximum has been exceeded, users are required to pay for services (although some may receive some tax relief in return). In addition, regions vary in the mix of public and private providers and the relationships between the two. To further complicate matters, most provincial governments delegate the responsibility for funding and delivering home care to their regional health authorities. The advantage of this model is that regional health authorities are better able to integrate home care into the spectrum of long term care services. The disadvantage is that home care is vulnerable to cyclical funding (often competing with institutional care) and political changes. This has led to considerable inequity both within and across provinces and territories in the provision of home care services, with varying levels of service and quality. an.t. lis te r @g m ai l.c om Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. FIGURE 12.6 Total Annual Number of Publicly Funded, Privately Paid, and Unpaid Home Care Hours As shown in this ﬁgure, the amount of care that family members will be required to provide to older relatives in the future will increase signiﬁcantly. ki er Source: MacDonald, B. J., Wolfson, M., & Hirdes, J. (2019). The future co$t of long term care in Canada. Toronto, ON: National Institute on Ageing, Ryerson University. Retrieved from https://static1.squarespace.com/static/5c2fa7b03917eed9b5a436d8/t/5dbadf6ce6598c340ee6978f/1572527988847/The+Future+ Term+Care+in+Canada.pdf Home care resources have failed to keep up with the trend towards shifting patient care from the hospital to the community. In addition, home care resources are increasingly devoted to short term, post acute care (e.g., follow up post surgery) rather than long term care that is focused on the prevention of further decline, and the provision of care is shifting from the public to the private sector. As a consequence, family members (particularly those who cannot aﬀord private home care) are being asked to do more, with potentially serious implications for their health and well being. Home care is provided by Personal Support Workers (PSWs), sometimes referred to as health aides, personal care aides, and health care assistants. These jobs can be diﬃcult because they tend to be low paying, demanding physically and emotionally, and precarious; often PSWs work more than one job to make ends meet. Picard (2020) reports that home care workers are paid $3 to $5 less than they would if they worked in an institution, and, due to staﬀ shortages, they must work quickly to meet the needs of all clients. The workforce is most often female and foreign born. Because they are an unregulated profession, they work long hours with increasingly complex home care clients, often without the necessary specialized training to meet the diverse physical, cognitive, and mental health needs of clients. There are few opportunities for career advancement. There is already a signiﬁcant workforce shortage of PSWs, and this will become more severe as the population ages, a problem facing many countries, including Canada. As you can see from Figure 12.6, the home and community care sector relies heavily on unpaid caregivers—family members, friends, and volunteers (MacDonald et al., 2019). Projections until 2049 indicate that the number of hours of unpaid care will increase signiﬁcantly. According to Statistics Canada (2020a), one in four Canadians, aged 15 and older, provided care to a family member or friend with a long term health condition, disability or aging need. Almost half are caring for parents or parents in law while 13 percent are caring for a partner or spouse. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. Family caregivers are the linchpin of the health care system. About 75 percent of total home care hours are provided by unpaid caregivers, and this is expected to grow by 43 percent by 2050. Similarly, the number of older adults requiring care over the same time period will increase by 120 percent, from 345,000 to 770,000 (MacDonald et al., 2019). What is the economic value of this unpaid care? One way to look at this is how much it would cost the public system to replace this unpaid care, known as the replacement cost. In 2019, the replacement cost was just under $9 billion. By 2050, this will increase to $27 billion (MacDonald et al., 2019). But it is not just the monetary cost that should be considered but also the human cost. About 35 percent of unpaid caregivers are balancing work and unpaid caregiving activities. The percentage of caregivers reporting distress, anger, or depression related to their caregiving responsibilities increased in Ontario from 15.6 percent in 2009/2010 to 44 percent in 2013/2014 (Health Quality Ontario, 2016). ADULT DAY PROGRAMS ai l.c om Older adults who do not need to be in an institution on a 24 hour basis can receive support services during the day from community services speciﬁcally aimed at addressing their needs. In adult day programs, older adults who need assistance or supervision during the day receive a range of services in a setting that is either attached to another facility, such as a nursing home, or is a stand alone agency. Depending on the site, the services provided can include medication management, physical therapy, meals, medical care, counselling, education, and opportunities for socializing. These services may fall into the category of respite care, which provides family caregivers with a break while allowing the older adult to receive needed support services. Being able to bring their relatives to these services for help during the day allows caregivers to maintain their jobs or spend time taking care of their own household or personal needs. Supportive or Assisted Living @g m An alternative to a nursing home is a supportive (or assisted) living facility, which provides supportive care services and supervision to individuals who do not require skilled nursing care. The types of services provided varies, and can include social activities, meals, housekeeping, assistance with personal care, such as bathing and grooming, or access to an on call nurse and/or non regulated care provider. Facilities may be owned and operated by private, for proﬁt companies, by non proﬁt organizations (some of which may be faith based), or by the government and owned and operated by local municipalities. Nursing Homes an.t. lis te r It is important to remember that supportive living facilities are not the same as retirement homes and residences, which are private accommodations that provide services such as meals and laundry for functionally independent older adults. In some residences, minimal nursing care is also available. These facilities tend to attract wealthier older adults and are often quite lavish. ki er For individuals whose illness or disability requires daily nursing care as well as other support services, nursing homes provide comprehensive care in a single setting. A nursing home is a type of medical institution that provides a room, meals, skilled nursing and rehabilitative care, medical services, and protective supervision. The care provided in nursing homes includes assistance for problems that residents have in many basic areas of life, including cognition, communication, hearing, vision, physical functioning, continence, psychosocial functioning, mood and behaviour, nutrition, and dental care. To manage these problems, residents typically need to take medications on a regular basis. The Ontario Long term Care Association (2019) reported that 61 percent of residents take 10 or more prescriptions, while 86 percent need extensive help with activities such as eating and using the washroom. @g m ai l.c om Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. What many people forget is that a nursing home should be, most importantly, a place to call home for residents and is often the last place a person will live. an.t. lis te r A nursing home may also have a rehabilitation unit in which residents receive intensive treatment to restore previous levels of functioning. Rehabilitation units typically include occupational and physical therapy services in addition to medical care. Referring back to Figure 12.1, acute rehabilitation typically follows hospitalization. ki er This description of a nursing home, although technically correct, neglects the most important feature. A nursing home is a “home,” and for many older adults, it is the last place they will reside. While this fact may seem obvious to some, models of nursing home care have typically been custodial or institutional in nature. Residents have their basic physical needs met, often in a regimented manner, but their psychosocial needs are less of a priority. There has been a culture change in recent years, with a movement towards more holistic care, providing psychological, social, and spiritual care as well, although there is considerable variability in the extent to which diﬀerent facilities provide this care. Also increasingly popular in the long term care literature are terms such as person centred care and family centred care. These terms address the need for making residents and their family members the focal points for care, ensuring that their needs take priority over bureaucratic rules and regulations. While progress has been made in these areas, we still have a long way to go and there is tremendous variability across nursing homes in achieving person and family centred care. Long term care facilities in Canada are funded by both public and private (for proﬁt and non proﬁt) providers. Private for proﬁt care includes large multinational or local chains and private equity ﬁrms. In 2014, according to the Canadian Institute for Health Information, 44 percent of facilities were private, for proﬁt entities, in contrast to 29 percent private non proﬁt and 27 percent public providers (CIHI, 2014a). The for proﬁt sector is growing in Canada, as large corporations increase their market share of the long term care industry and access to publicly funded care has decreased. There is also a trend towards sub contracting with other companies for services such as direct resident care, cleaning, or meal provision. Contracts are given to those providing the lowest cost, which can further diminish the quality of care provided to residents. For example, in the area of staﬃng this can mean lower wages, fewer beneﬁts, and more part time positions. This leads to poorer continuity of care for residents, as many staﬀ rotate through the facility. This was a signiﬁcant problem during the COVID 19 pandemic, as many staﬀ had to work at multiple facilities to ensure a living wage, thus putting residents at greater risk of infection. Research that has compared non proﬁt and for proﬁt care facilities has generally concluded that for proﬁt providers have large revenues but more documented quality problems. For example, Harrington et al. (2017) compared the ﬁve largest for proﬁt chains in ﬁve countries: Canada, Norway, Sweden, the United Kingdom, and the United States. Taken together, data suggested that large, for proﬁt nursing home chains did not provide quality services, as measured by quality violations, had more fraudulent practices, and lower staﬃng levels, particularly among registered nurses who have the highest salaries and the most expertise. Keep in mind that quality of care can range in both non proﬁt and for proﬁt care facilities and that these are aggregate data that do not tell us very much about individual facilities or speciﬁc jurisdictions. For example, data from Ontario suggest there are no diﬀerences in Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. quality between for proﬁt and non proﬁt facilities (Ontario Long Term Care Association, 2019). However, what is clear is that we need better accountability and oversight of all types of nursing home facilities and additional research on this important topic. There is general recognition that there is a shortage of long term care beds in Canada, with many older adults waiting for placement in hospitals, in their own homes, or living with caregivers. The Conference Board of Canada (2017) estimates that an additional 199,000 long term care beds will be needed by 2035, nearly double the current capacity. Shortages are particularly acute in First Nations communities. A report by the Standing Committee on Indigenous and Northern Aﬀairs (2018), presented to the House of Commons, indicated that there are over 630 First Nation communities across Canada and only 53 long term care facilities are managed by First Nations. For example, 10.7 percent of the population of Saskatchewan are First Nation members; yet, there are only two facilities run by First Nations. As a consequence, First Nations elderly needing care have to be transported to communities far from their families and the languages, cultural practices and traditions that are so important to them. In turn, leaving the community deprives the younger people of the support, advice, and knowledge of Elders. ki er an.t. lis te r @g m ai l.c om Relatedly, there is an increased emphasis on providing nursing homes that meet the unique needs of older adults from diﬀerent ethnocultural groups. For example, in Calgary, the Chinese Christian Wing Kei Nursing Home Association provides care for Chinese elderly. As you can imagine, having access to staﬀ and residents who speak your own language, eating familiar food, and being in an environment where your customs and values are recognized add immeasurably to your overall quality of life. Due to a shortage of nursing homes in their communities, Indigenous Elders often have to leave their communities to receive care with negative consequences for them and for those they leave behind. One of the major trends in nursing homes is greater acuteness and complexity in residents’ health and cognitive status. As a result of policies that promote staying at home as long as possible, when older adults are admitted to nursing homes, they are more likely to have multiple health conditions and cognitive impairment, and the level of care they require is higher than ever before. Figure 12.7 shows the increases in severity in Ontario nursing homes between 2011–2012 and 2017–2018, a trend that is present across Canada. As you can see, about two thirds of residents have dementia, and bladder and bowel incontinence is present in 79.2 percent and 58.9 percent of residents, respectively. This means that many more residents require assistance with toileting. The percentage of residents needing extensive support for grooming, getting dressed, and eating rose from 79 percent to 86 percent from 2013 to 2018 (Ontario Long Term Care Association, 2019). As with home care, Personal Support Workers (PSWs) are responsible for providing the majority of care, but there is a signiﬁcant workforce shortage, as will be discussed later in the chapter. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. @g m ai l.c om The increasing severity and complexity of residents’ needs has signiﬁcant implications for the institutional milieu. For example, behavioural symptoms such as physical aggression, social inappropriateness (e.g., disrobing), resistance to care, repetitive motions or speech, pacing and wandering can result in very diﬃcult living and working environments. As indicated above, while 2 out of 3 residents has dementia, 1 out of 3 residents has severe cognitive impairment and nearly half exhibit some form of aggressive behaviour (Ontario Long Term Care Association, 2019). These behaviours are very upsetting for residents, family members, and staﬀ, and they put staﬀ at risk for physical injury. You might wonder why a resident would demonstrate these behaviours. People with cognitive impairment have signiﬁcant memory impairment and are confused. They may not remember the staﬀ member who is trying to provide care. What would it be like to have someone who is unfamiliar to you helping you with your most personal care needs, such as bathing and toileting? How would you react to this scenario? Wandering away from a nursing home puts residents at signiﬁcant risk, which is why some nursing home units are locked. Moreover, residents with cognitive impairment who are confused and disoriented may wander into the rooms of other residents, invading their privacy and sometimes taking their personal possessions. As you can see, addressing these behavioural problems presents a signiﬁcant challenge to maintaining quality of life for residents and a positive working environment for staﬀ. an.t. lis te r FIGURE 12.7 Health Conditions and Care Needs Have Increased Since 2011–2012 This graph shows the increase in the prevalence of selected health conditions among long term care residents between 2011–2012 and 2017–2018. Source: Ontario Long Term Care Association. (2019). This is long term care 2019. Toronto, ON: Author. Retrieved from https://www.oltca.com/OLTCA/Documents/Reports/TILTC2019web.pdf ki er Mood and anxiety disorders are also very prevalent in nursing home residents. In Canada, it is estimated that up to 44 percent of nursing home residents have depressive symptoms (Canadian Institute for Health Information, 2010). These data reﬂect symptoms of depression but do not address how many residents meet criteria for major depressive disorder, a more serious mental health problem. In their systematic review, Seitz et al. (2010) found a very large range of estimates at 5 to 25 percent for major depression and 14 to 82 percent for depressive symptoms. It is likely that these rates of depression are an underestimate, as depression in nursing homes often goes undiagnosed and untreated. The epidemiological data for anxiety symptoms is sparse, but one study reported that they were present in about 30 percent of residents (Smalbrugge et al., 2005). We do know that depression, anxiety, and cognitive impairment are highly comorbid. These mental health problems are also highly comorbid with physical illness. Thus, nursing home residents often have very complex physical and psychological needs. The use of psychotropic medication to control disruptive behaviour and treat mood disorders is a serious problem in nursing homes. A study by the Canadian Institute for Health Information (2014b) showed selective serotonin reuptake inhibitors, used for depression, were taken by 36.1 percent of residents and other antidepressants were taken by 32.6 percent. They were the second and third most commonly prescribed drugs in long term care settings. Pharmacological treatment is used to address depressive symptoms because psychological treatments, although highly eﬃcacious, are not available to residents. Furthermore, antipsychotic drugs were used by 26 percent of residents. Although these are typically used for mental health problems such as schizophrenia and bipolar disorder, in long term care they are often used to reduce disruptive behaviour. Unfortunately, these drugs can have serious side eﬀects, including oversedation, orthostatic hypotension (a form of low blood pressure that causes dizziness when standing), and movement disorders. As a result, residents who are on these drugs are more susceptible to falls. However, progress is being made in Canada. For example, data from Health Quality Ontario (2018) reported that the percentage of residents receiving an antipsychotic medication when they didn’t have psychosis fell from 35 percent in 2010/2011 to 20.4 percent in 2016/17. Similar data were reported for the use of physical restraints, from 16.1 percent to 5.1 percent. A review by Van Leeuwen et al. (2018) suggested that some residents with dementia could be withdrawn from antipsychotic medications without serious eﬀects on their behaviour; however, this is more likely true for residents with mild to moderate symptoms. Those with more severe behavioural and psychological symptoms would likely beneﬁt from continued use of antipsychotic medication. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ki er an.t. lis te r @g m ai l.c om There are alternatives to medication and restraints for controlling behaviour. In their review of the literature, Chappell et al. (2014) reported that musical interventions and staﬀ training were promising interventions for agitation and aggression. They also identiﬁed additional “possibly eﬀective” interventions, as follows: animal assisted therapy, aromatherapy, Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ki er an.t. lis te r @g m ai l.c om The increasing severity and complexity of residents’ needs has signiﬁcant implications for the institutional milieu. For example, behavioural symptoms such as physical aggression, social inappropriateness (e.g., disrobing), resistance to care, repetitive motions or speech, pacing and wandering can result in very diﬃcult living and working environments. As indicated above, while 2 out of 3 residents has dementia, 1 out of 3 residents has severe cognitive impairment and nearly half exhibit some form of aggressive behaviour (Ontario Long Term Care Association, ). These behaviours are very upsetting for residents, family members, and staﬀ, and they put staﬀ at risk for physical injury. You might wonder why a resident would demonstrate these behaviours. People with cognitive impairment have signiﬁcant memory impairment and are confused. They may not remember the staﬀ member who is trying to provide care. What would it be like to have someone who is unfamiliar to you helping you with your most personal care needs, such as bathing and toileting? How would you react to this scenario? Wandering away from a nursing home puts residents at signiﬁcant risk, which is why some nursing home units are locked. Moreover, residents with cognitive impairment who are confused and disoriented may wander into the rooms of other residents, invading their privacy and sometimes taking their personal possessions. As you can see, addressing these behavioural problems presents a signiﬁcant challenge to maintaining quality of life for residents and a positive working environment for staﬀ. FIGURE 12.7 Health Conditions and Care Needs Have Increased Since 2011– 2012 This graph shows the increase in the prevalence of selected health conditions among long term care residents between 2011–2012 and 2017– 2018. Source: Ontario Long Term Care Association. (2019). This is long term care 2019. Toronto, ON: Author. Retrieved from https://www.oltca.com/OLTCA/Documents/Reports/TILTC2019web.pdf Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ai l.c om Mood and anxiety disorders are also very prevalent in nursing home residents. In Canada, it is estimated that up to 44 percent of nursing home residents have depressive symptoms (Canadian Institute for Health Information, 2010). These data reﬂect symptoms of depression but do not address how many residents meet criteria for major depressive disorder, a more serious mental health problem. In their systematic review, Seitz et al. (2010) found a very large range of estimates at 5 to 25 percent for major depression and 14 to 82 percent for depressive symptoms. It is likely that these rates of depression are an underestimate, as depression in nursing homes often goes undiagnosed and untreated. The epidemiological data for anxiety symptoms is sparse, but one study reported that they were present in about 30 percent of residents (Smalbrugge et al., 2005). We do know that depression, anxiety, and cognitive impairment are highly comorbid. These mental health problems are also highly comorbid with physical illness. Thus, nursing home residents often have very complex physical and psychological needs. an.t. lis te r @g m The use of psychotropic medication to control disruptive behaviour and treat mood disorders is a serious problem in nursing homes. A study by the Canadian Institute for Health Information (2014b) showed selective serotonin reuptake inhibitors, used for depression, were taken by 36.1 percent of residents and other antidepressants were taken by 32.6 percent. They were the second and third most commonly prescribed drugs in long term care settings. Pharmacological treatment is used to address depressive symptoms because psychological treatments, although highly eﬃcacious, are not available to residents. Furthermore, antipsychotic drugs were used by 26 percent of residents. Although these are typically used for mental health problems such as schizophrenia and bipolar disorder, in long term care they are often used to reduce disruptive behaviour. Unfortunately, these drugs can have serious side eﬀects, including oversedation, orthostatic hypotension (a form of low blood pressure that causes dizziness when standing), and movement disorders. As a result, residents who are on these drugs are more susceptible to falls. ki er However, progress is being made in Canada. For example, data from Health Quality Ontario (2018) reported that the percentage of residents receiving an antipsychotic medication when they didn’t have psychosis fell from 35 percent in 2010/2011 to 20.4 percent in 2016/17. Similar data were reported for the use of physical restraints, from 16.1 percent to 5.1 percent. A review by Van Leeuwen et al. (2018) suggested that some residents with dementia could be withdrawn from antipsychotic medications without serious eﬀects on their behaviour; however, this is more likely true for residents with mild to moderate symptoms. Those with more severe behavioural and psychological symptoms would likely beneﬁt from continued use of antipsychotic medication. There are alternatives to medication and restraints for controlling behaviour. In their review of the literature, Chappell et al. (2014) reported that musical interventions and Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. staﬀ training were promising interventions for agitation and aggression. They also identiﬁed additional “possibly eﬀective” interventions, as follows: animal assisted therapy, aromatherapy, dance therapy, pain treatment, personalized activity schedules, person centred bathing, and simulated family presence therapy. In general, these interventions require more staﬀ, additional training for staﬀ, and a greater institutional commitment to person centred care. ai l.c om RELOCATING TO A LONG TERM CARE FACILITY an.t. lis te r @g m Any discussion of long term care would not be complete without considering the process of relocation. We use the term process because it truly is an event that evolves over time and is often the end point of heroic eﬀorts on the part of family members to keep their loved ones in their own homes in the community. Relocation is most often the result of cumulative frailty (physical and/or cognitive), and many relocations are precipitated by a catastrophic health event, such as a fall or a stroke. However, as indicated earlier in this chapter, there are also systemic reasons for older adults being admitted to facility based long term care, including a lack of home care resources and funding (either public or personal) and the unavailability of residential options that provide lower levels of care. Unfortunately, as is the case in many aspects of life, those who have money fare better and can aﬀord high end options, such as private retirement living with extended health care services. ki er Relocating a family member to long term care can be a very diﬃcult experience for families and is often associated with feelings of regret, grief, depression, and even relief. Recognizing this, on its website, the Alzheimer Society of Canada addresses the process of relocation, including making the decision, assessing diﬀerent facilities, the actual move, and adjusting once a family member is placed in care. Family members are often unfamiliar with the policies and practices that are involved in the transition to long term care and may feel overwhelmed by the process. In Canada, admission to long term care is through a coordinated placement process, or single point of entry model, referred to variously as screening, referring, and case managing (Canadian Healthcare Association, 2009). In the single point of entry model, long term care is accessed through one agency, with the goals of facilitating access, providing the most appropriate placement for the individual, and reducing wait lists. However, older adults may not have much choice in terms of where they live. Although policies vary across Canada, they may require that older adults take the “ﬁrst available living option” rather than their ﬁrst choice option, perhaps because the preferred residence is full or there is limited capacity within the long term care system. Family members often need to make relocation decisions in response to a health crisis and may feel pressured to make a decision, often in the absence of adequate information about Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. waiting times for speciﬁc nursing homes or without their input about preferred sites (Health Quality Council of Alberta, 2014). an.t. lis te r @g m ai l.c om Although it may be possible to eventually move older adults to their ﬁrst choice nursing home if it becomes available, relocation requires a signiﬁcant adjustment, and every relocation adds to the cumulative stress that they experience. In their review of evidence based interventions for successful residential transitions for people with dementia and their family members, Hirschman and Hodgson (2018) provided ﬁve guiding recommendations: 1) adequate preparation and education about the transition process with informational resources; 2) complete and timely written and verbal communication across settings as individuals move from one care setting to another; 3) an evaluation of individuals’ and caregivers’ personal preferences and goals, for example, around treatment and social and living situations; 4) strong interprofessional collaboration among team members (e.g., social workers, nurses, physicians) involved in supporting the transition; and 5) the use of existing evidence based models of care to inform the relocation process. These best practices enhance the experience of relocation for relocating older adults and their caregivers. It is also important to remember that some older adults have positive outcomes when they relocate, particularly if they have had inadequate support in their home and community, and are poorly nourished and/or on multiple medications that either may not be appropriate for them or are being taken incorrectly. With increased geographic mobility, it is not uncommon for adult children to live far from their parents. When it is time to relocate one or both parents, children often want them to be closer so that they can visit them and oversee their care in a nursing home. But each jurisdiction in Canada has its own residency requirements for accessing long term care, and, even within provinces, these may vary depending on the level of care that is required. These regulations may come as a surprise to many adult children who simply want their parents to be closer. ki er PSYCHOLOGICAL ISSUES IN LONG TERM CARE Models of adaptation to the institutional environment attempt to explain the factors that contribute to a facility’s ability to meet the psychosocial needs of its residents. The basic problem that institutions face in providing for the needs of its residents is that, as institutions, they must try to meet the need of the “average” resident. Consider the case of temperature. It is more cost eﬀective for institutions to be built with one heating and cooling system rather than providing individualized thermostats within each room. Other features of the environment, from lighting to dining menus, similarly, cannot be individually tailored to each resident’s needs. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. Add to this problem of meeting the average resident’s needs is the fact that people will diﬀer considerably in the ways they perceive the same physical features of the environment. Take room temperature as an example. You have probably been in classes in which one student is wearing an overcoat and another is wearing shorts and a tee shirt. The subjective environment, then, becomes an added complication for institutions to take into account when designing and maintaining a facility. an.t. lis te r @g m ai l.c om The ability to control your environment is another factor that will determine how well you are able to adapt to it. In your own home, you make your own decisions about how your environment looks and feels. You set your own hours for eating, sleeping, waking, and bathing. In an institution, you may have these decisions made for you by the staﬀ. A study of nursing home residents in Victoria, British Columbia revealed that the ability to control the environment was indeed important to certain residents. Interviewers presented the residents with vignettes asking them to make decisions such as what time to go to bed, what medicines to take, whether to move to a diﬀerent room, and what type of end of life care to receive. The researchers found that, perhaps unexpectedly, not everyone wanted to have this type of control over their health care decisions. Older adults with more years of education and a greater number of chronic illnesses were likely to state that they wished to be able to make these decisions themselves rather than have them made for them by nursing home staﬀ (Funk, 2004). As you can see, institutions present residents with environments that meet their needs to varying extents. In the ideal situation of maximum adaptation, residents feel that they are a good ﬁt in their environment. This principle of person–environment ﬁt underlies the competence–press model (Lawton & Nahemow, 1973), which predicts an optimal level of adjustment that institutionalized persons will experience when their levels of competence match the demands, or “press,” of the institutional environment. ki er Figure 12.8 illustrates the competence–press model. The qualities of the individual, psychological and physical, can range from low to high in competence. A highly competent resident will be able to get around easily, is cognitively intact, and is relatively free from depression. Institutions, for their part, can range from low to high in press. An environment low in press will be relatively low in stimulation. One that is high in press will have high expectations for residents to be active. As you can see, there is a boundary around the perfect ﬁt between competence and press (dashed line). That zone incorporates maximum comfort and maximum performance potential, or ability to be as satisﬁed and independent as possible. Adaptation, in this middle zone, will be high. As you move towards the edges, adaptation drops and individuals express negative aﬀect and engage in maladaptive behaviour such as, in the extreme, being aggressive towards staﬀ. The individual who is intellectually competent is best adapted, then, in a highly stimulating environment, Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. and residents who have diminished capacity will be best adapted in a less stimulating environment. an.t. lis te r @g m ai l.c om Looking now at the range of maximum adaptation, it is clear that residents low in competence have a narrower band that will deﬁne their feelings of comfort and ability to perform. Cognitively and physically more competent residents may be bored in a less stimulating environment than in one suited towards their abilities, but they will have the capacity to ﬁnd ways to keep from getting bored. ki er FIGURE 12.8 Competence–Press Model According to the competence–press model, environments vary in their levels of press, or stress, and therefore in the maximum level of aﬀect and adaptation they provide. By considering the interaction between the individual and the environment of the institution, the competence–press model makes it possible to provide speciﬁc recommendations to institutions about how best to serve the residents. The model also predicts the adaptations individuals might make to changes in health as they seek environments that will best support their ability to maintain their independence (Perry et al., 2014). Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ai l.c om Environments can also adapt to the competence of residents whose cognitive abilities are diminished by neurocognitive disorder. Speciﬁcally, such environments should meet the criteria of being safe and secure, be visually accessible, minimize memory requirements, provide opportunities for a range of social interactions, and support the values and goals of care (Fleming & Bennett, 2015). Cognitive supports, furthermore, can help promote the social well being of residents by enhancing their ability to navigate the environment (Nordin et al., 2017a). In Canada, facilities that provide these types of supportive environments for residents with cognitive impairment may be referred to as special care units or memory care units. THE QUALITY OF LONG TERM CARE FACILITIES @g m Since long term care facilities provide for the needs of some of our most vulnerable citizens, maintaining high standards and quality care is vitally important. This was particularly evident when the COVID 19 pandemic took the lives of many nursing home residents across Canada, and serious deﬁciencies were exposed in many care facilities. ki er an.t. lis te r Information about the quality of nursing homes and the well being of nursing home residents comes from the Continuing Care Reporting System (CCRS). As of 2017 to 2018, the following provinces were participating partially or completely in the CCRS: Yukon, British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, New Brunswick, Nova Scotia, and Newfoundland and Labrador. Over 500 indicators are included in the reporting system, known as the Resident Assessment Instrument—Minimum Data Set 2.0, including indices of physical, cognitive, and psychosocial health. Data are collected at the point of care, using standardized assessment forms. The Canadian Institute for Health Information (CIHI) uses these data to monitor quality indicators in long term care facilities and assesses trends in quality over time. These data are used routinely but also in times of crisis. For example, CIHI released a report in June of 2020 comparing the number of COVID 19 deaths in long term care in Canada with 16 other OECD countries. These data revealed that, in Canada, 81 percent of all COVID 19 deaths occurred in long term care, compared to an average of 42 percent across the other countries (CIHI, 2020). In addition, each province and territory has licensing requirements that nursing home operators must meet in order to keep their operating licences. These regulations are often quite detailed and include requirements for, for example, the physical environment, diet and nutrition, accommodating residents’ personal choices (including their social and leisure preferences), and providing a forum for resident feedback. Although these licensing requirements are good, they tend to focus more on environmental factors and indices of poor health care, while psychosocial aspects of Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. care and overall quality of life receive less attention. Additionally, there is ongoing concern about whether there is suﬃcient monitoring. For this reason, some provinces have passed speciﬁc legislation to protect persons in care, and a number of citizen advocacy groups across Canada are actively involved in enhancing the quality of life of residents. ai l.c om Accreditation Canada accredits more than 1,100 health care and social service agencies. Site visitors use nationally recognized and rigorous standards to evaluate facilities, noting both strengths and areas that need improvement. The recommendations made by the accreditation team are implemented prior to the next survey so that there is continuous quality improvement. Accreditation status provides an additional metric for determining the quality of a facility. ki er an.t. lis te r @g m Provincial initiatives also aim to improve the quality of care. For example, Ontario’s Long Term Care Home Quality Inspection Program involves unannounced inspections and enforces legislation and regulations. Inspections by trained and certiﬁed professionals can be comprehensive or can be related to complaints, critical incidents, and follow up. Most importantly, there is transparency, because inspection reports are made available through the Ontario Ministry of Health and Long Term Care. Staﬀ members are vitally important in ensuring good quality of care in nursing homes. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. an.t. lis te r @g m ai l.c om As emphasized throughout this chapter, human resources are the key to quality care in nursing homes. The most obvious requirement is suﬃcient staﬀ to meet residents’ needs. However, it is becoming increasingly diﬃcult to recruit and retain long term care staﬀ. Employment in long term care is very stressful. Banerjee and colleagues (2012) surveyed 948 staﬀ in Canadian long term care facilities and found that 43 percent of front line workers reported that, more or less every day, they were subjected to physical violence, 35.5 percent were criticized or told oﬀ by a resident or relative, and 14.3 percent endured unwanted sexual attention, which often occurred when bathing a resident. Focus group data also indicated that front line workers were often the recipients of sexist and racist remarks. The vast majority of violence was unreported, primarily because of the amount of paperwork involved and fears of being blamed by superiors. Banerjee and colleagues (2012) attributed the violence to excessive workloads resulting from staﬀ shortages. Workers reported that they had barely enough time to complete the physical care, let alone socialize with residents or provide emotional support. Additional factors that workers cited as contributing to violence were low levels of job autonomy and the lack of opportunities to talk to other workers about diﬃculties that arise on the job. Interestingly, rates of violence in Canadian long term care facilities were much higher than in Scandinavian countries. Banerjee and colleagues (2012) cited structural factors, such as higher workloads in Canadian facilities, as important in understanding these diﬀerences. For example, Canadians were responsible for almost twice as many residents as their Scandinavian counterparts in Denmark, Norway, and Sweden. The prevalence of violence, combined with the fact that nursing home work is generally perceived as low status and is often undervalued, leads to burnout, high staﬀ turnover, chronic staﬀ shortages, and ultimately poorer quality of care for residents. Staﬃng shortages are directly related to inadequate operating budgets, and long term care associations have repeatedly called upon provincial governments to increase funding for long term care (Canadian Healthcare Association, 2009b). ki er However, it is not just a matter of having enough staﬀ but also of having the right mix of staﬀ. The trend has been towards hiring more personal support workers and fewer registered nurses as a way of cutting costs. In addition, many allied health care professionals—physiotherapists, occupational therapists, recreational therapists, social workers, and psychologists—are either in short supply or non existent in many long term care settings in Canada. As a result, many residents do not get the physical and psychosocial support that they need in order to maintain a good quality of life. Adequate staﬀ training is also essential for those working in long term care. Sadly, many staﬀ members do not have specialized training in working with older adults. Moreover, those who have the most direct contact with residents have the least education. The curriculum for personal support workers is not uniform across Canada, Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. and there are areas where they clearly receive little training. For example, most do not receive training in mental health, in spite of the fact that a signiﬁcant number of residents have mental health problems. Other topics deemed critically important for staﬀ working in long term care are residents’ rights, cultural competency, resident centred care, and behaviour management (Canadian Healthcare Association, 2009b). ai l.c om As a consumer, you may be interested in how to choose a nursing home that provides quality care. This may seem like a topic that lacks relevance for you, but there is a high probability that you and/or someone you know may be relocating to long term care sometime in the future. Fortunately, there are resources to help you. For example, the Alzheimer Society of Canada provides a checklist to assist in selecting a long term care home for someone with Alzheimer’s disease or other major neurocognitive impairment (Figure 12.9). @g m SUGGESTIONS FOR IMPROVING LONG TERM CARE an.t. lis te r Clearly, the environment has an important role in aﬀecting the individual’s health, both inside and outside an institutional environment. Within the institutional setting, the implications of the competence–press model are that the needs of individuals should be met to the greatest extent possible. For example, one approach to intervention for patients with neurocognitive disorder who exhibit agitation is to develop an individualized “algorithm” that matches interventions with the abilities and preferences of the residents. Rather than treating this behaviour with medications, which is the typical route of treatment, the non pharmacological approach can better preserve the resident’s ADLs, speech, communication, and responsiveness (Cohen Mansﬁeld et al., 2014). ki er Personal support workers, who increasingly are managing many of the daily living activities of residents (Seblega et al., 2010), can be taught to use behavioural methods to help residents maintain self care and hence independence (Burgio et al., 2002). Such interventions can also beneﬁt staﬀ–resident relationships. Since satisfaction with treatment by staﬀ is such a signiﬁcant component of satisfaction with the institution (Chou et al., 2002), any intervention that maximizes positive interactions between staﬀ and residents is bound to have a favourable impact on the sense of well being experienced by residents. Such training, even with patients who have severe dementia, can help reduce dependence on psychotropic medications (Fossey et al., 2006). The size of the institution can also aﬀect the adaptation of residents. The typical long term care facility design is similar to that of a hospital, with long hallways and centralized lounge areas and nursing stations. New models for nursing home design attempt to break up the monotony to create a heightened feeling of a community or neighbourhood. Nursing stations are removed from view, allowing residents and staﬀ Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. to share lounges. Hallways have alcoves that can store medicine carts and nursing stations. Small group living clusters, improved interior design, and access to gardens can help maintain independence in residents whose autonomy would otherwise be threatened (Regnier & Denton, 2009). Even if the rooms themselves are well designed, then, the overall layout becomes an important factor in determining how easy or diﬃcult it is for residents to beneﬁt from social interactions among themselves (Nordin et al., 2017b). an.t. lis te r @g m ai l.c om Other models stress new ways of allocating staﬀ to meet the care needs of residents. In one such model, rather than basing staﬀ assignments on the completion of speciﬁc tasks for all residents (bathing, changing dressings, administering medications), staﬀ are assigned to meet all the needs of a particular group of residents. Although such a system increases staﬃng requirements, overall the institutions reduce their expenses in the areas of restraint and antipsychotic medication. Hospitalization rates, staﬀ turnover, and success in rehabilitation also improve, as does residents’ satisfaction with their care (Bartels et al., 2002). Residents with chronic physical illnesses or neurocognitive disorders who also have psychiatric conditions can beneﬁt from a multidisciplinary approach that involves thorough assessment of psychiatric, medical, and environmental causes as well as programs for teaching behavioural management skills to nurses (Collet et al., 2010). ki er Another factor to consider in understanding the psychological adaptation of the older adult to the institutional environment is the possibility that a nursing or residential care home may represent an improvement over a private residence. Researchers in Finland found that nursing home residents had a greater sense of well being than those living at home, many of whom were no longer able to care for themselves. Because many residential facilities for older adults have long waiting periods, particularly the better ones, older adults may be relieved to be admitted where they know they will be relieved of the burden of living on their own (Böckerman et al., 2012). Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ki er an.t. lis te r @g m ai l.c om Another factor to consider in understanding the psychological adaptation of the older adult to the institutional environment is the possibility that a nursing or residential care home may represent an improvement over a private residence. Researchers in Finland found that nursing home residents had a greater sense of well being than those living at home, many of whom were no longer able to care for themselves. Because many residential facilities for older adults have long waiting periods, particularly the better ones, older adults may be relieved to be admitted where they know they will be relieved of the burden of living on their own (Böckerman et al., ). an.t. lis te r @g m ai l.c om Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. FIGURE 12.10 Green House Design This is a sample layout of a nursing home with the Green House design. Note the presence of a hearth and central dining and kitchen areas. ki er The Green House model oﬀers an alternative to traditional nursing homes by oﬀering older adults individual homes within a small community of 6 to 10 residents and skilled nursing staﬀ. Figure 12.10 shows the design of a typical Green House residence. A key feature of this design is the open plan layout of shared spaces, with the centerpiece being the hearth and surrounding seating area. As you can see, the Green House residence is designed to feel like a home; medical equipment is stored away from sight, the rooms are sunny and bright, and the outdoor environment is easily accessible. Data from longitudinal studies of the Green House model have recently become available. As you might expect from seeing the layout of a typical Green House design, residents in these facilities are more likely to engage in social interaction than residents of traditional long term care facilities. Somewhat surprisingly, though, one study identiﬁed along with this increase in social interaction an increase in depressive symptoms as well, perhaps due to greater recognition of these symptoms in the open plan setting (Yoon et al., 2015). Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ai l.c om The Green House Model is consistent with principles of the Culture Change Movement in services for older adults (Bowers et al., 2016), which promotes person centred care, allowing individuals to feel “at home” despite living in institutional settings. The goal of the Culture Change Movement is to transform services for older adults by adopting care to the needs of the individual in innovative ways (Briody & Briller, 2017). However, researchers caution that despite its obvious appeal, the Culture Change Movement still requires more rigorous testing before it becomes translated into a more widespread policy (Shier et al., 2014). @g m In conclusion, the concerns of institutionalized older adults are of great importance to both individuals and their families, many of whom are involved in helping to make long term care decisions for their older relatives. The dignity and self respect of the resident can best be addressed by multidimensional approaches that take into account personal and contextual factors. Interventions based on these approaches will ultimately lead to a higher quality of life for those who must spend their last days, months, or years in the care of others. SUMMARY ki er an.t. lis te r 1. Long term care is a provincial/territorial responsibility in Canada, and there is tremendous variability both within and across regions in how long term care is structured and ﬁnanced. Depending on where you live in Canada, the cost of living in a nursing home can be quite high. Facility based care is not an insured service under the Canada Health Act. A nursing home is most importantly a home, and often the last place a person will reside. Person centred care is an institutional culture that makes the resident the focal point of care, recognizing his or her unique needs, values, and history as well as his or her right to dignity and respect. Because of the increasing severity and complexity of residents’ health, cognitive, and mental health problems, important research is focusing on how to decrease diﬃcult behaviours among nursing home residents. 2. Family members provide most of the home care support for older adults, and they need more community resources and ﬁnancial compensation to meet these commitments. Home care is cost eﬀective if it is well integrated into the health care system, and there are good linkages among and coordination of services. As is the case with facility based care, home care is not covered by the Canada Health Act and there is considerable regional variability in the types of services provided, how much they cost, and the mix of public and private providers. Many types of long term care settings speciﬁcally designed for older adults are available, such as nursing homes and supportive or assisted living facilities. The percentage of older adults in these institutions with cognitive deﬁcits and mental health problems is relatively high, as is the use of psychotropic medications. Printed by: [email protected]. Printing is for personal use only. No part of this book may be reproduced or transmitted without publisher's prior permission. Violators will be prosecuted. ki er an.t. lis te r @g m ai l.c om Increasing attention is being paid to home health care to allow older adults who need some level of care to continue to live independently, a concept referred to as aging in place. Other residential sites include special housing that is designed for older adults. 3. Relocation to long term care can be a stressful event for older adults and their family members. Many will have to take the ﬁrst available living option and it may not be in their nursing home of choice. Alternate level of care patients are those who reside in the hospital while waiting for an appropriate

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