Person-Centered Care for People with Dementia: Opportunities and Challenges

By Katie Maslow

Person-centered care is widely acclaimed both as a means and a goal to improve care and outcomes for people of all ages who have various diseases, conditions, and care needs. A 2001 Institute of Medicine (IOM) report, Crossing the Quality Chasm, galvanized attention to the concept that care should be centered on and organized around the needs and preferences of the person rather than the needs and preferences of care providers and institutions. The report identified “patient-centered” as one of the six major aims in redesigning the United States’ healthcare system, and defined patient-centered care as being “respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001a).

Though this report uses the term patientcentered, which is frequently employed in discussions about person-centered care in the healthcare context, in other contexts (including residential care and home- and communitybased care), the term person-centered is generally preferred, although both terms are used in all care contexts. This issue of Generations uses “person-centered,” except in direct quotes and articles about medical care settings. 

This intentional use of terms is meant to emphasize the strong consensus of the contributing authors that person-centered care encompasses not only medical care provided to a patient, but also the many types of non-medical care that a person may need, including the care necessary for individuals transitioning between medical and non-medical care settings. Other prevalent terms, such as resident-centered and consumercentered, are discussed later in this article.

Person-centered care has now been mandated in federal legislation, and many government and non-government initiatives are under way to increase its availability for all people. It is included in government regulations, government, professional, and provider association guidelines for medical, residential, and homeand community-based care settings, and in required competencies for care providers who work in those settings. Person-centeredness is also being measured, primarily in terms of a person’s experience of care, in surveys intended to evaluate the quality of care provided in various settings. As a result, professional, paraprofessional, and direct care workers in many care settings are hearing—or will soon be hearing—messages about the need to provide person-centered care in their particular setting.

An Urgent Need: Person-Centered Care for People with Dementia

People with dementia make up substantial proportions of all older individuals served in a wide array of medical, residential, and homeand community-based care settings. On average, about one-quarter of all older hospital patients are people with dementia (Alzheimer’s Association, 2013). The proportion of people with dementia in physician practices varies greatly, depending upon the type of physician practice and other factors, but most physicians have some patients with dementia, and physicians with a high volume of older patients often have many patients with dementia. People with dementia also constitute about half of all nursing home residents (AHCA, 2013); more than 40 percent of assisted living residents (Caffrey et al., 2012); more than one-third of older recipients of Medicaid and other state-funded home- and community-based services (Fortinsky, Fenster, and Judge, 2004; Hirdes et al., 2004; Mitchell et al., 2006); and about half of all participants in adult day programs (O’Keefe and Siebenaler, 2006).

In 2009, 17 percent of Medicare hospice beneficiaries had a primary hospice diagnosis of Alzheimer’s Disease or non-Alzheimer’s dementia (CMS, 2013d). Many individuals with advanced dementia also have other serious medical conditions (Chen et al., 2007), and it is likely that substantial proportions of Medicare hospice beneficiaries with other primary hospice diagnoses also have dementia. Because many people with dementia are receiving care in each of these settings, it is essential for professional, paraprofessional, and direct care workers in these settings to understand what it means to provide person-centered care for people with dementia.

The concept of person-centered care as articulated in the IOM report quoted above certainly fits with the care needs of people with dementia. When moving from this general concept into day-to-day practice, however, questions arise about how to put some components of the concept into operation. In particular, how can care providers know the preferences, needs, and values of a person with dementia? How can they ensure that the person’s values guide all decisions about his or her care? To what extent, and exactly how, can they involve families in care decisions without compromising the fundamental focus on individual autonomy and choice? And how can the person-centeredness of the care they provide be measured if the person is not cognitively capable of completing the survey questionnaires now being used to evaluate patient experience of care?

Over the past twenty-five years, thinking about person-centered care for people with dementia has evolved, sometimes in relation to the general concept of person-centered care for all people, but more often in a parallel but largely separate track. In the United States, thinking about person-centered care for people with dementia has been strongly influenced by the ideas of Tom Kitwood and others in England (see Kitwood, 1997a, 1997b; Kitwood, 1988). The philosophy and care practices that incorporate these ideas and related ideas of U.S. dementia care experts and experts elsewhere are often referred to as person-centered dementia care. Compared with the large number of care providers employed in settings that serve people with dementia, the number who know about person-centered dementia care is relatively small. Yet the ideas put forward by Kitwood and others provide a strong conceptual basis, compelling insights, and valuable practice-based knowledge about person-centered care for people with dementia.

Current government and non-government initiatives to increase the availability of personcentered care for all people create opportunities to increase its availability for people with dementia. Achieving this outcome depends, however, on greatly increased awareness about the importance and value of person-centered care for people with dementia and wider understanding about how it can be implemented in day-to-day practice.

This Issue of Generations

This issue of Generations is intended to increase awareness and understanding about person-centered care for people with dementia and how to implement it in a wide range of healthcare, residential care, and home- and community-based care settings. The remainder of this introductory article provides more detailed information about definitions of person-centered care for all people, alternate terms that are used, and ongoing initiatives to increase the availability of person-centered care for all people.

Definitions, terms, and associated commentaries inform the messages about person-centered care that many healthcare, social service, aging services network, and other care providers are hearing or will soon hear; therefore, these ideas may influence care providers’ perceptions about the appropriateness and feasibility of person-centered care for people with dementia. This introduction to the issue points out ways in which some definitions, terms, and commentaries can create or exacerbate negative assumptions about whether person-centered care is appropriate and feasible for these people.

The seven articles that follow this introduction focus on central concepts, principles, and components of person-centered care for people with dementia that cross care contexts and settings including determining preferences and values; involving family caregivers; measuring person-centeredness; and using physical design to support person-centered dementia care. The issue also includes nine shorter articles identifying the most important, practice-related considerations in person-centered care for people with dementia who are in different stages of the condition, live at home or in a residential care facility, and receive care from various kinds of providers—in particular, case managers and primary care physicians, hospitals, and providers involved in care transitions. The concluding article discusses implications for training and suggests ways the articles in this issue can be used to develop and support greater understanding about, and wider implementation of, personcentered care for people with dementia across the spectrum of care.

Person-Centered Care for All People: Definitions and Terms

Person-centered care has been defined by many organizations and individuals. The IOM definition quoted at the beginning of this article is probably the most frequently cited definition, but other IOM reports provide somewhat different definitions. A second IOM report defined patient-centered care as “care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they require to make decisions and participate in their own care” (IOM, 2001b). Although this definition includes some of the same words as the definition quoted earlier, it adds family involvement and acknowledges that people may need education and support to make decisions and participate in their own care.

Various organizations and individuals have defined person-centered care as a goal in itself or instead, as a means for achieving a goal. It has been defined as the single over-arching goal, or one of many goals, as well as the single means of achieving a goal or one of many means. It is sometimes defined as having a certain number of components, but the number of components and the specific components that are identified differ from one definition to another (see National Partnership for Women and Families, 2010; White et al., 2012; The Council on Quality and Leadership, 2010).

Although the various definitions of personcentered care are probably based on similar underlying concepts, the differences among them—and the use of different terms—can be confusing. The terms person-centered and patient-centered were discussed earlier. Other terms that are sometimes used include resident-centered; client-centered; consumer-centered; person-, patient-, resident-, client-, or consumer-focused (or directed or driven); and even very general terms such as individualized and personalized. Some people employ these terms synonymously, and others assert that there are meaningful differences between them. Moreover, “person-centered” is sometimes used as an adjective to describe an aspect or setting of care, for example, “person-centered medical home.”

Confusion about person-centered care is compounded by differing opinions about its relationship to other broadly acclaimed means and goals for improving care. One example is “culture change,” a well-accepted approach for improving care in nursing homes and other care settings (Koren, 2010; Rahman and Schnelle, 2008; White et al., 2012). While some descriptions of culture change indicate that it is a means for achieving the goal of person-centered care, other descriptions indicate that it is just one component of culture change.

The existing literature on person-centered care for all people includes many articles that discuss various definitions and terms, but also present authors’ opinions about this and related forms of care. As noted earlier, these commentaries can influence the messages care providers and others hear about person-centered care.

In the context of this issue of Generations, it is important to consider what, if anything, the definitions, terms, and associated commentaries about person-centered care for all people say explicitly or imply about the following:

  • cognitive abilities that are needed for personcentered care;
  • verbal abilities that are needed for personcentered care; and
  • involvement of families in decisions about care.

In particular, if a definition, term, or associated commentary talks explicitly about a person’s ability to search for, understand, and evaluate information, make decisions based on information, or use the Internet or electronic health records, or if it speaks about people as “informed decision-makers,” care providers may assume that person-centered care is not feasible for people with impaired cognitive abilities due to dementia. Likewise, if a definition, term, or associated commentary about person-centered care refers explicitly to a person’s ability to “express” or verbally communicate his or her values, preferences, and needs, care providers may assume that personcentered care is not feasible for people with dementia. These assumptions are more likely if the care provider does not know that people with dementia differ in their cognitive and communication abilities, or if the provider does not know how to evaluate these abilities (see sidebar below).

Person-Centered Care and the Heterogeneity of People with Dementia

People with dementia differ in many ways that affect their functioning and care needs. Dementia is a syndrome defined by the loss of memory and other cognitive and related functional abilities. It can be caused by a wide array of diseases and conditions, the most common of which are Alzheimer’s Disease, vascular disease, Lewy body disease, and fronto-temporal degeneration. A growing body of research also shows that many people with dementia have more than one dementing disease or condition (Langa, Foster, and Larson, 2004; Schneider et al., 2007). Symptoms vary somewhat, depending upon the person’s underlying disease(s) or condition(s). Moreover, many diseases and conditions that cause dementia are progressive, so a person’s dementia-related symptoms, functioning, and care needs are likely to change over time. 

People with dementia also differ in characteristics that are not caused by their dementia but, nevertheless, strongly impact their functioning and care needs. These characteristics include their age (although dementia is most common in older people, it also occurs in younger people); their general health and the presence of other serious medical conditions; their culture, race, ethnicity, primary language, and socioeconomic status; their family configuration and social networks; their life experiences; and perhaps, most importantly, their personality characteristics and remaining strengths.

Because of all these differences, individuals with dementia do not fit into simple categories. Yet many people, including care providers, have in their minds one (or a few) stereotypical image of a person with dementia. A major benefit of person-centered care for people with dementia is its strong and central focus on seeing and knowing the individual, thus counteracting stereotypes and the inappropriate, rarely helpful, and often damaging responses they engender.

Interestingly, the existing literature on person-centered care for all people includes many articles about characteristics that can keep some individuals from participating in and benefiting from this form of care. These characteristics usually pertain to language, education, literacy, ethnicity, culture, and socioeconomic factors. Many research and demonstration projects are being conducted to increase understanding about how these characteristics create barriers to person-centered care and to identify care-provider competencies to mitigate barriers (Bernabeo and Holmboe, 2013). Yet there is a surprising and troublesome lack of attention paid in this literature to dementia-related barriers to participation in person-centered care.

Some definitions, terms, and associated commentaries about person-centered care for all people explicitly include families, and others do not. The IOM Quality Chasm report lists “involvement of family and friends” as one of six dimensions of patient-centeredness (IOM, 2001a). AARP, the National Partnership for Women and Families, The Institute for Personand Family-Centered Care, and some other organizations use the term person- and familycentered care, thereby specifically including families (Feinberg, 2012; Institute for Patientand Family-Centered Care, n.d.; National Partnership, 2010). The AARP definition and some of the other definitions that explicitly include families use the phrases “when appropriate” or “if appropriate” to acknowledge that family involvement is not always appropriate in person-centered care (Feinberg, 2012; IOM, 2001a; IOM, 2001b). Yet few definitions or commentaries that endorse family inclusion provide enough guidance about exactly when and how to include them to help care providers appropriately balance the dual objectives of family involvement and individual autonomy and choice.

Current Initiatives to Increase the Availability of Person-Centered Care for All People

As previously mentioned, person-centered care has now been mandated in federal legislation, and many government and non-government initiatives are under way to increase its availability for all people. A comprehensive description of these initiatives is beyond the scope of this article, but a few examples suggest the range of opportunities for embedding ideas and care practices that are appropriate and feasible for people with dementia into ongoing projects that already focus on person-centered care.

The Patient Protection and Affordable Care Act of 2010 (ACA) mandated person-centeredness in sections of the law that address Accountable Care Organizations (ACO), medication management, and home- and community-based services (Davis, Abrams, and Stremikis, 2011; Kietzman, 2012; Millenson and Macri, 2012). The ACA created the Patient Centered Outcomes Research Institute, which funds research on many aspects of person- and family-centered care (PCORI, 2013). The ACA also mandated development of a national quality strategy. The first National Quality Strategy, published in 2011, identifies three aims, including to “improve the overall quality of care, by making health care more patient-centered, reliable, accessible, and safe” (HHS, 2011).

The Centers for Medicare & Medicaid Services (CMS) is conducting many initiatives that place strong emphasis on person-centered care. For example, a recent CMS Guidance to states that use 1115 or 1915(b) waiver funds to support Managed Long Term Services and Supports Programs requires the use of “personcentered processes,” including person-centered needs assessment, service planning, and service delivery (CMS, 2013a). Another recent CMS letter to survey agency directors about unnecessary use of psychotropic drugs for nursing home residents with dementia cites personcentered care as the first principle for dementia care in nursing homes (CMS, 2013c). A third and even more recent CMS notice of available funding for demonstration ombudsman programs in Medicare-Medicaid dual eligible programs states that the purpose of the programs is to increase person-centered, coordinated care (CMS, 2013b).

The commitment of the Administration on Aging, in the Administration for Community Living, to person-centered care is evident in the kick-off article in this issue of Generations by Kathy Greenlee, the Administrator of both agencies (Greenlee, 2013). The Department of Veterans Affairs, the Agency for Health Care Research and Quality, and other federal government agencies are also conducting initiatives to increase the availability of person-centered care for all people, as are many professional and provider associations and advocacy organizations.

Confronting Barriers to Person-Centered Care for People with Dementia

Greater availability of person-centered care for all people could result in better care, better quality of life, and better functioning for people with dementia in a wide array of care settings. At present, however, the general lack of understanding about what person-centered means for people with dementia and how it can be implemented in day-to day practice, coupled with stereotypical images of what people with dementia are like and negative assumptions about whether person-centered care is appropriate and feasible for these people, blocks the achievement of these positive outcomes. The challenge for dementia care experts and advocates is to raise the general level of understanding and provide answers to questions about implementation that confuse and frustrate care providers. This issue of Generations will help to meet that challenge.

Katie Maslow, M.A., is a Scholar-in-Residence at the Institute of Medicine in Washington, D.C.

Editor’s Note: This article is taken from the Fall 2013 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “Integrating Services for Dual Eligibles.” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online storeFull digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.


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