September 2014

The Alzheimer’s Voice: Person-Centered and Person-Directed

Dementia Care

Report

Prepared for

Erin Long, MSWAdministration on Aging

Administration for Community Living1 Massachusetts Avenue, NW

Washington, DC 20005

Prepared by

Lisa M. Lines, PhD, MPHJoshua M. Wiener, PhD

RTI International 701 13th Street, NW, Suite 750

Washington, DC 20005

Elizabeth Gould, MSWAlzheimer’s Association

225 N. Michigan Avenue17th Floor

Chicago, IL 60601

RTI Project Number 0212050.035.000.001.001

ACKNOWLEDGMENTS AND DISCLAIMER

The authors would like to thank Michael Lepore, PhD; Qinghua Li, PhD; and Sarita Karon, PhD, for their useful comments on an earlier draft. Support for this paper was provided by HHS Task Order HHSP23320095651WC_HHSP23337038T. The views expressed in this report are those of the authors and do not necessarily express the opinions of the Administration for Community Living, the U.S. Department of Health and Human Services, RTI International, or the Alzheimer’s Association.

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CONTENTS

Executive Summary.........................................................................................................................1

Section 1 Introduction and Background..........................................................................................3

Section 2 Background......................................................................................................................42.1 Evolution of the Concept of Person-Centered Care.......................................................42.2 Person-Centered Dementia Care....................................................................................5

Section 3 Care Planning and Decision-Making...............................................................................73.1 The Importance of Taking the Person with Dementia into Account.............................73.2 Making Sure That the Person with Dementia’s Preferences Are Included in

Care Planning and Decisionmaking...............................................................................83.3 Tools for Evaluating Level of Decision-Making Capacity and Involvement..............10

Section 4 Communicating with People with Dementia and Their Caregivers..............................12

Section 5 Tools for Measuring the Person-Centeredness of Care.................................................14

Section 6 Conclusions...................................................................................................................19

Section 7 References.....................................................................................................................21

LIST OF EXHIBITS

Exhibit 1. The VIPS of Person-centered Dementia Care......................................................6Exhibit 2. Changing decision-making process as dementia progresses (Hirschman

2005) 10Exhibit 3. Tools for Measuring the Person-Centeredness of Care......................................15Exhibit 4. Excerpt From the Wisconsin Person-Directed Dementia Care

Assessment Tool...................................................................................................................17

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EXECUTIVE SUMMARY

Alzheimer’s disease (AD) and related dementias are common conditions in older people. Because dementia typically results in dependency and disability, persons with dementia are at risk of being denied the opportunity for autonomy and respect for personhood.

Person-centered care emphasizes the importance of not just diagnoses and physical and medical needs, but of social, mental, emotional, and spiritual needs as well. Components of person-centered and directed care include respecting personhood; striving to maintain personhood in spite of declining cognitive ability; treating people as individuals; seeing the world from the perspective of the person with dementia; recognizing the needs of people with dementia in terms of opportunities for more activities and social interaction that can compensate, in part, for their impairment and give them room to grow; valuing the person with dementia and his or her caregivers; involving family members in care and offering shared decision-making; knowing the person; applying detailed knowledge of the individual (biological, behavioral, biographical, and social) to tailor care; collecting and using personal experiences of life and relationships to individualize care and the environment; maximizing choice and autonomy; providing quality care; maintaining a supportive physical and organizational environment; and prioritizing relationships as much as care tasks.

Person-centered care is most easily achieved in partnership with a rational and capable consumer decision-maker at the center, which is often a challenge when the person has dementia. Nonetheless, people do not surrender their right to autonomy simply because they have a diagnosis of AD, and the disease exists along a continuum of capability. Especially in the early to moderate stages of AD, individuals are able to actively participate in the decisionmaking that affects their lives.

However, research suggests that many families and service providers do not adequately incorporate the voice of people with AD into the care planning and decisionmaking process. Too often it is assumed that people with dementia cannot contribute to these decisions and they are excluded from the discussion or their perspectives are not taken into account, even though the decisions are about them and affect them.

A number of tools are available to assess the decisionmaking capacity of individuals with dementia and to assess the degree to which individuals with dementia participate in the decisions that affect them. In addition, tools are available to assess the person-centeredness of the care process and outcomes.

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To better serve people with dementia and their families, it is important that the long-term services and supports system find better ways to incorporate the goals, values, and preferences of people with dementia into the decisionmaking process. People with dementia are, first and foremost, people, and their right to control their own lives needs to be respected to the extent practicable.

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SECTION 1INTRODUCTION AND BACKGROUND

Alzheimer’s disease (AD), the most common cause of dementia, is an irreversible, progressive brain disease that affects nearly 5 million Americans over age 65 (Feng, Coots, Kaganova, & Wiener, 2013). Dementia refers to changes in memory and other cognitive skills severe enough to affect a person’s ability to perform daily social and occupational activities. Dementia is usually categorized as either AD or non-Alzheimer’s dementia. In the United States, AD is the sixth-leading cause of death and is associated with more than $214 billion per year in direct health care costs (Alzheimer's Association, 2014a).

As the disease progresses, individuals with dementia become more dependent on their caregivers for assistance with daily activities. In the early stages, an individual may need assistance with managing more complex tasks, such as finances. Over time, an individual may experience changes in planning or organizing, word finding, mood, social engagement, remembering recent events, and ability to perform personal care activities. Eventually, many of those with the disease reside in residential care facilities or nursing homes (Feng et al., 2013). About half of nursing home residents have dementia, as do about 40 percent of assisted living residents and more than a third of home and community-based services recipients (Maslow, 2013).

Whether in the community or institutionalized, the person with dementia is an individual with the same desires for autonomy and respect as any other person. However, because dementia typically results in dependency and disability, persons with dementia are at risk of being denied the opportunity for autonomy and respect for personhood.

The purpose of this report is to define and describe the philosophy and practice of person-centered and person-directed dementia care, which seeks to ensure as much autonomy and respect for the individual’s choices as possible. The paper discusses the background of person-centered dementia care; the importance of including the person with dementia’s voice; issues related to decisionmaking, care planning, and communication; and specific approaches and tools that can be used to assess and improve shared decision-making. The main focus is on home and community-based dementia care, but some material on institutional and residential care facilities is included as well.

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SECTION 2BACKGROUND    

2.1 Evolution of the Concept of Person-Centered Care

The traditional “medical model” of health care consists of evaluating symptoms and complaints, prescribing treatments, and measuring outcomes—typically with the doctor or some other highly training professional making the decisions. The role of the professional is to decide; the role of the client is to comply with the decisions of the professional.

As the health and long-term services and supports system moves away from a paternalistic, doctor-knows-best approach, consumers are playing more active roles in their own health care and long-term services and supports. The Institute of Medicine (IOM) has declared that patient-centered care, defined as care that is “respectful of and responsive to the preferences, needs, and values” of the individual, “ensuring that the care recipient’s values guide all clinical decisions,” is a hallmark of high-quality care (IOM Committee on Quality of Health Care in America, 2001). For example, patient-centered care promotes access to personal health information via computers or mobile phones, making patients better informed and more active participants in their care. Patient-centered care also prioritizes outcomes that are important to the patient—such as quality of life—over technical and process measures that are often used today (Rickert, 2012).

Others have advocated for a more holistic view, calling for person-centered care, with a focus on the whole person (not just his or her medical conditions), and person-directed care, with the individual in control of and making the decisions about their care (Maslow, 2013; Starfield, 2011). Person-centered and person-directed care represent a shift in focus away from the biomedical approach, emphasizing the importance of not just diagnoses and physical and medical needs, but of social, mental, emotional, and spiritual needs as well. This type of holistic approach is not a traditional part of the training for physicians and other health care providers, although there have been movements in that direction (Bleakley & Bligh, 2008).

Care practices can be situated on a continuum: provider-directed staff-centered person-centered person-directed. For example, a new resident in a nursing home facility may be required to receive a shower twice a week (provider-directed), offered a choice between a shower at the time allotted or nothing (staff-centered), offered a bath with her own soap at the time allotted (person-centered), or allowed to bathe on her own preferred schedule (person-directed) (Pioneer Network, 2014).

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Over the past two decades, a nationwide reform movement known as culture change has emerged in nursing home care (Koren, 2010). The culture change movement is intended to “deinstitutionalize” nursing homes to ensure that residents have privacy, choices, and as much control over their own lives as possible (Doty, Koren, & Sturla, 2008). Daily schedules are selected on the basis of residents’ preferences, rather than the convenience of the long-term care staff and—ideally—large, hospital-like units are replaced by smaller, “home-like” settings facilities where residents are cared for by a consistent team of providers. A recent survey found that 85 percent of nursing home directors reported some culture change implementation (Miller et al., 2014). Appendix A discusses some of the international research on person-centered care in institutional settings.

2.2 Person-Centered Dementia Care

The United Nations Convention on the Rights of Persons with Disabilities requires signatories (including the United States and 157 other countries) to engage in new approaches to decision-making for people with dementia (Smith & Sullivan, 2012). The convention states that persons with disabilities—defined loosely as persons with impairments and barriers to participation in society—have inherent dignity, individual autonomy (including the freedom to make their own choices), and independence, and they have a right to full and effective participation and inclusion in society (Pineda & UNICEF, 2008). The guiding principle for implementation of the convention is “nothing about us without us.” In essence, this is the core of person-centered care.

Scholars have proposed a variety of definitions of person-centered dementia care. Kitwood and Bredin (1992) said that one of the key psychological tasks in dementia care is maintaining “personhood”—the quality, condition, or status of being an individual person.

Brooker (2007) describes the components of person-centered care for people affected by dementia as (1) valuing the person with dementia and his or her caregivers; (2) treating people as individuals; (3) seeing the world from the perspective of the person with dementia; and (4) recognizing the needs of people with dementia in terms of opportunities for more activities and social interaction that can compensate, in part, for their impairment and give them room to grow (Exhibit 1). The VIPS model has recently been applied to the nursing home setting (Røsvik, Brooker, Mjorud, & Kirkevold, 2013; Røsvik, Kirkevold, Engedal, Brooker, & Kirkevold, 2011).

Crandall and colleagues (2007) defined person-centered dementia care as having five components: respecting personhood, knowing the person, maximizing choice and autonomy, providing quality care, and maintaining a supportive physical and organizational environment.

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De Madeiros & Doyle (2013) point out that the last two components depend on the first three. According to Talerico and colleagues (2003), person-centered care involves the application of detailed knowledge of the individual (biological, behavioral, biographical, and social) to tailor care. Terada and colleagues (2013) developed a list of the components of person-centered dementia care: striving to maintain personhood in spite of declining cognitive ability, collecting and using personal experiences of life and relationships to individualize care and the environment, prioritizing relationships as much as care tasks, and involving family members in care and offering shared decision-making.

Autonomy requires the ability to understand and act on choices in a manner that is free from controlling interference by others. Although autonomy is often diminished in AD and related dementias because of changes in memory and thinking ability, impairment in executive function, cognitive impairment, language impairment, other disabilities, and dependency, persons with dementia are still the experts on what it is like to live with dementia (Cook, 2013). As such, their expertise and preferences should be taken into account when decisions are made about care. Unfortunately, surveys have shown that people with AD often do not feel they have choices about their lives (Cook, 2013). However, as screening and earlier diagnosis become more common, individuals with early stage AD will have more years in which they are able to speak on their own behalf and make decisions about the future (Batsch & Mittelman, 2012).

One of the main issues in current models of dementia care is the language used to describe behaviors and symptoms. Doyle and Rubenstein (2013) argue that behavior that is seen in a positive light in people without dementia, such as walking, may be framed as “wandering” when done by someone with dementia. Kehoe (2014) cautions that behaviors should be seen, primarily, as attempts to communicate unmet needs.

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Exhibit 1. The VIPS of Person-centered Dementia Care

Source: Brooker, 2007

SECTION 3CARE PLANNING AND DECISION-MAKING

3.1 The Importance of Taking the Person with Dementia into Account

It is important to take into account the person as he or she sees him- or herself, rather than the person whom others have constructed (de Medeiros & Doyle, 2013). The self-concept, values, and preferences of people with dementia may be radically different from those of their family, friends, and professional caregivers. Examining discrepancies and perceptions of five values: autonomy, burden, control, family, and safety, Reamy et al. (2011) found that caregivers did not typically have an accurate understanding of the person’s values and preferences. People with dementia have higher expectations for their quality of life than either their family caregivers or their health care providers do for them (Thorgrimsen et al., 2003). In fact, proxy respondents (typically a spouse or other family member), on average, rate their care recipient’s quality of life as significantly poorer than the care recepient does (Moyle, Murfield, Griffiths, & Venturato, 2012; Thorgrimsen et al., 2003).

Caregivers consistently underestimate the importance to individuals with dementia of autonomy, the desire to avoid becoming a burden, the need to have control over their care, being with family and friends, and feeling safe (Reamy, Kim, Zarit, & Whitlatch, 2011). A difference of perspective between the person with dementia and the primary family caregiver is often interpreted as the person with dementia’s lacking awareness of or insight into his or her own needs, limitations, deficits, risks facing them or others, or situational resources available (Woods & Pratt, 2005). However, when individuals with dementia have greater involvement in daily decision-making, they have lower levels of depression and less negative relationship strain (Menne, Tucke, Whitlatch, & Feinberg, 2008). Depression is significantly correlated with quality of life, but cognitive impairment is not (Thorgrimsen et al., 2003).

Even in settings where there is strong organizational support for person-centered dementia care, caregiving staff may see people with dementia as “empty shells” (Doyle & Rubinstein, 2013). Staff also tend to have an “us/them” mentality toward consumers, which interferes with person-centered care by blocking the nurturing relationships required for this model. Staff may also believe that after a certain amount of disease progression, it is no longer possible for residents to maintain their dignity.

3.2 Making Sure That the Person with Dementia’s Preferences Are Included in Care Planning and Decisionmaking

The voice of the family caregiver is often heard more strongly than the voice of the person with dementia in making care decisions for people with dementia. Families and providers

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often make decisions on the person’s behalf and, at times, override the person’s expressed desires (Holm, 2001). For example, people with dementia often express strong desires to remain in their own homes, but family caregivers may override their loved ones’ wishes out of concern for their well-being or their inability or unwillingness to provide more informal care, but also from a feeling that people with dementia are no longer capable of self-determination and autonomy (Woods & Pratt, 2005).

One of the key aspects of person-centered care is shared decision-making (Hamann et al., 2011). Persons with mild to moderate dementia are able to participate in decisions and express preferences in areas such as their own health care, daily care and activities, and place of residence (Feinberg & Whitlatch, 2002; Menne et al., 2008; Mozley et al., 1999; Tyrrell, Genin, & Myslinski, 2006). Whether an individual is capable of decision-making depends on whether he or she can communicate relatively consistently, understand basic information about choices, evaluate the implications of different choices, and rationally comprehend the risks and benefits associated with different options (Karel, Gurrera, Hicken, & Moye, 2010; Woods & Pratt, 2005). Because these capacities fluctuate over time and different decisions require different levels of capacity, a diagnosis of dementia—or even a particular score on some other cognitive test—should not be the only criterion for determining capacity (Woods & Pratt, 2005). More importantly, people with dementia need to be supported in expressing their autonomy in as many aspects of daily life as possible. When treatment goals and desires are supported by both caregivers and care recipients, caregivers gain a better understanding of the person’s wishes and therefore feel better prepared and less burdened with decision-making (Whitlatch, Judge, Zarit, & Femia, 2006).

Studies support open communication within the caregiver-care recipient dyad in the early stages of dementia to clarify goals and desires to ensure that the person’s values and wishes are honored (Reamy et al., 2011; Samsi & Manthorpe, 2013; Whitlatch et al., 2006). Planning ahead for the transfer of decision-making authority should be completed while the person with dementia can still participate in the process of determining who will represent his or her best interests regarding care decisions (Forbes et al., 2012).

Different models focus on the collaborative role in decision-making and how it changes as the disease progresses. Karel et al. (2010) discuss three dimensions of health care values that may be relevant to assessing decision-making capacity: (1) personal perspectives on quality of life in terms of one’s abilities, activities, and relationships; (2) beliefs on the relative importance of preserving quality of life and lengthening life; and (3) preferences for one’s role in decision-making (ranging from autonomous, to shared responsibility, to complete deference to others). It

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may be difficult for caregivers to know how and when to expect changes in their decision-making role, but ultimately, the caregiver is often in the role of making final decisions (Karlawish, Casarett, Propert, James, & Clark, 2002).

A person’s ability to make decisions is not “all or nothing” but is spread out along a wide continuum (Holm, 2001). One model (Samsi & Manthorpe, 2013) looks at the decision-making continuum ranging from supported decision-making—in which the person with dementia and the caregiver make decisions together—to substituted decision-making, where the caregiver takes over most of the decision-making. The model begins with mutual decision-making, in which decisions such as what to wear and what to eat are made jointly. In reductive decision-making, the caregiver provides cues and fewer options. At the restrictive decision-making phase, the caregiver decides what can be avoided. A caregiver engaging in retrospective decision-making looks at past knowledge, preferences, and conversations and thinks back to what the person might have wanted. Balancing conflict examines the concept of making a decision in the best interest of the person with dementia while balancing the caregiver’s ability to provide the needed care. In this instance, a caregiver may prioritize taking a break, even though doing so may have a negative impact on the care of the person with dementia. The endpoint of this decision-making continuum is negotiating substituted decision-making—the point at which caregivers routinely make substitute decisions for their relatives with dementia (Samsi & Manthorpe, 2013).

Service providers play an important role in working with families and others during this time of transition and change in the person’s capacity. Hirschman and colleagues (2005) recommend that service providers discuss the ways in which a person’s role in decision-making will change as dementia progresses. According to Hirschman, these roles fit into three categories: (1) the person has the capacity to make medical decisions, and the caregiver respects and supports the person’s decisions; (2) the person has a diminished capacity to make decisions, and the caregiver enters into the role of fostering shared or collaborative decision-making and transitions to a role as a more vocal advocate and decision-maker as the person’s capacity diminishes; and (3) the person lacks the capacity to make medical decisions, so the caregiver makes the final decisions but still informs the person as much as possible (Exhibit 2).

In an effort to be more person-centered, some organizations are now including people with dementia in decision-making or advisory capacities. Doing so requires the organization to be adaptive and flexible enough to accommodate the person’s changing needs and (likely

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declining) abilities and to have an organizational culture that supports inclusion. Individuals with early dementia have expressed their interest in participating in decision-making roles as board or committee members of AD organizations; however, the ability of any individual to be involved is likely to be time limited and may vary because of their own disease processes and other individual factors (Whitfield & Wismer, 2006). Although including a person with early stage dementia may be relatively easy, removing that person when his or her dementia is more advanced may be more difficult because it publicly confirms that the person is no longer capable of performing this function. Thus, defining periods of service in advance may be more appropriate than having open-ended arrangements.

1.1 Tools for Evaluating Level of Decision-Making Capacity and Involvement

Several tools exist for evaluating capacity for and involvement in decision-making, including the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the Hopemont Capacity Assessment Interview (HCAI), the Capacity to Consent to Treatment Instrument (CCTI), and the Decision-Making Involvement Scale (DMI) (Menne et al., 2008; Moye, Karel, Azar, & Gurrera, 2004). The first three instruments measure decision-making capacity in four domains: understanding information and demonstrating comprehension; appreciating the significance of treatment information; reasoning and comparing alternatives (including providing rational reasons for decisions); and expressing a choice. Each instrument presents a hypothetical clinical scenario and asks individuals to show their ability to understand and appreciate diagnostic and treatment information and explain the reasoning behind choosing one treatment over another. In an evaluation of 88 older people with mild-to-moderate dementia and 88 matched controls, Moye and colleagues (2004) found that, on average, people with dementia had impaired performance but still scored within the normal range on all decisional capacities. In fact, in three of the four domains of the HCAI, more people with mild dementia than normal controls scored within the normal limits than did the matched sample.

The DMI was adapted from the Decision Control Inventory, a 26-item instrument developed in the late 1990s that measures existing levels of self-determination for individuals with intellectual and developmental disabilities (Menne et al., 2008). Because the level of self-

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Exhibit 2. Changing decision-making process as dementia progresses (Hirschman 2005)

determination is partly a function of caregiver decisions to allow self-determination, it is not a measure of decisional capacity. The DMI contains 15 items, which may be administered to individuals with dementia and their caregivers. The questions ask how involved the person with dementia or their caregiver is in the following decisions:

• What to spend money on

• Visiting with friends

• What foods to buy

• When to go to bed

• When to get up

• What to do in spare time

• Being physically active

• Participating in religious/spiritual activities

• Expressing affection

• Having a pet

• What to eat

• Choosing places to go

• What clothes to wear

• Choosing where to live

• Getting medical care

The items are scored on a 4-point scale, with 0 being not at all involved and 3 being very involved. In an evaluation of the DMI in 217 caregiver/person with dementia dyads, people with mild-to-moderate dementia had a mean score of 2.3 (indicating that they felt they were fairly to very involved in decision making); having been diagnosed more recently was associated with greater reported involvement in decision-making. Their caregivers rated their family members’ involvement as a mean of 1.9, indicating that they perceived the person with dementia to be less involved in decision making than did the person with dementia (Menne et al., 2008).

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SECTION 4COMMUNICATING WITH PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS

Changes in a person’s ability to communicate can vary depending on where the person is in the disease process, so it is important to use multiple approaches to facilitate effective communication and understanding. Some changes a person with dementia may experience include difficulty finding the right words, easily losing the train of thought, speaking less often, reverting to a native language, and relying on gestures more than speaking (Alzheimer's Association, 2014b). It is important for service providers to find a quiet place with few distractions to ensure a successful interaction with people with dementia. Additional tips from the Alzheimer’s Association (2014b) on communicating with people with dementia include the following:

• Greet people by identifying yourself and calling them by name to get their attention and to orient them.

• Speak directly to people and do not exclude them from conversations with family and friends.

• Take time to listen and focus on people’s feelings and on what they are saying.

• Give people time to process what is being asked of them and to respond. If they do not respond, repeat the information or questions as needed.

• Give visual cues or write things down if that seems helpful.

In addition, the Alzheimer’s Association developed a set of principles, with input from people with dementia, for clinicians who are assessing people for the presence of AD (Alzheimer's Association, 2013). These principles are:

• Talk to me directly

• Tell the truth

• Test early

• Take my concerns seriously, regardless of my age

• Deliver the news in plain but sensitive language

• Coordinate with other care providers

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• Explain the purpose of different tests and what you hope to learn

• Give me tools for living with this disease

• Work with me on a plan for healthy living

• Recognize that I am an individual and the way I experience this disease is unique

• Alzheimer’s is a journey, not a destination

Tyrrell et al. (2006) discuss five dimensions underlying decision-making in medical or social care settings, emphasizing the importance of good communication with the person who has dementia. When meeting with the person, a professional should consider the information made available to people and their ability to understand it; the extent to which people consider they are being listened to by the professionals; the extent to which people are able to express their opinions about the options; the time available to reflect on the options before making a choice; and the possibility of being able to change one’s mind.

In interviews with 21 French dyads (a person with dementia and his or her primary caregiver), caregivers were more likely than the persons with dementia to report that they had been listened to by the professionals. In addition, some persons with dementia reported that they felt unheard by both the professionals they were seeing and their caregivers. Some persons with dementia said that there had been no possibility at all for them to express themselves. Tyrrell and colleagues (2006) also noted that a caregiver’s perception is not always a reliable indicator of the person’s wishes, so they recommended that the professional directly solicit the person’s opinion whenever possible.

Forbes and colleagues (2012) found that people with dementia were expected by the health care provider to seek help and find information on their own when they were assessed as stable and well-managed by their care partner. However, when interviewed, several care partners noted that they did not have the energy or wish to use their own personal time to look up any information about dementia care.

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SECTION 5:TOOLS FOR MEASURING THE PERSON-CENTEREDNESS OF CARE

In a comparative review of published tools for measuring the person-centeredness of care for older people and people with dementia, (Edvardsson & Innes, 2010)examined eight instruments. They found that, because none of the tools have been evaluated or assessed by researchers other than their initial developers, more research is needed to understand each tool’s strengths and limitations. In addition, articles describing the tools often lacked detail on the conceptual models underlying the tools, and the input of people with AD was generally absent from the development process.

Exhibit 3 briefly describes the tools reviewed by Edvardsson and Innes, and one other tool (the CARES observational tool) that has been published since their article.

Several organizations have developed tools to be used by evaluators of person-centered/directed care. One tool, developed by the Wisconsin Department of Health and Family Services (DHS) in 2006, covers nine major domains: the environment (such as sound levels, lighting, and personalization of space; see Exhibit 4 for an excerpt from the instrument), language and communication, care plans, activities, problem-solving processes, communication and leadership, team structure and roles, staff knowledge and training (including attitudes and educational resources available), and policies/procedures (including quality improvement and involvement of persons with dementia in decision-making and choices) ("Person-directed dementia care assessment tool," 2006). The tool also includes a list of resources for implementing person-directed dementia care.

The Personal Experience Outcome iNtegrated Interview and Evaluation System (PEONIES) tool is an approach to identifying individually desired outcomes, the supports necessary to achieve them, and successful provision of supports (Karon et al., 2011). PEONIES is designed to integrate care planning and quality measurement activities. The PEONIES website (http://www.chsra.wisc.edu/peonies/peonies_index.html) offers a number of tools and training materials (including an archived webcast, manual, and interview tools) for care providers of younger people with disabilities and frail elders.

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Exhibit 3. Tools for Measuring the Person-Centeredness of Care

Tool Reference Purpose Content and Scoring Validity and ReliabilityDementia-specific tools

1 Dementia Care Mapping

Brooker (2005) To measure the person-centeredness of care provided in formal care settings for people with dementia

Four coding frames: mood enhancers (6-item scale); behavior categories (23 items); personal detractions (PD) and personal enhancers (PE) (both contain 17 items, divided into 5 categories). Items are rated on a 2-point scale ranging between detracting and highly detracting for PDs and enhancing and highly enhancing for PEs. Based on Kitwood’s general approach of person-centered care; central concepts of personhood, malignant social psychology, positive person work.

Interrater reliability of ~70%.

2 Measures of Individualized Care

Chappell (2007) To measure individualized care for people with dementia in long-term care settings

Knowing the person, autonomy, and communication items. Scored on Likert scales.

Factors explained 29%, 31%, and 33% of total variance, respectively.

Cronbach’s alpha = 0.77, 0.80, and 0.64, respectively.

Test-retest reliability: Pearson’s r of 0.6, 0.88, and 0.77, respectively.

3 Family Involvement in Care

Reid (2007) To measure family-perceived involvement in long-term care settings for people with dementia

Two tools: (1) family perceived involvement and (2) the importance attached to family involvement. Scored on 4-point Likert scale.

One family involvement factor explained 44% of variance; two importance factors explained 30% of variance.

Cronbach’s alpha = 0.93 and 0.85, respectively. Test-retest reliability: Pearson’s r of 0.9.

4 The CARES Observational Tool

Gaugler, Hobday, and Savik (2013)

To measure the person-centeredness of care provided by direct care workers to people with dementia

Sixteen items in 5 domains: connecting with the person, assessing behavior; responding appropriately; evaluating what works; and sharing with others. Each item is scored dichotomously.

Interrater reliability: intraclass coefficient = 0.77

(continued)

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Exhibit 3. Tools for Measuring the Person-Centeredness of Care (continued)

Tool Reference Purpose Content and Scoring Validity and ReliabilityGeneral Tools5 The Person-Directed

Care MeasureWhite, Newton-Curtis, and Lyons (2008)

To evaluate the extent to which care settings meet person-directed care goals

Fifty items in 8 subscales: knowing the person, comfort care, autonomy, personhood, support relations, work with residents, personal environment, and management. Items scored on 5-point Likert scale.

Construct validity: 5 factors explain 61% of total variance.

All factors had Cronbach’s alpha ≥.85.

6 The Person-CenteredCare Assessment Tool (P-CAT)

Edvardsson, Fetherstonhaugh, Nay, and Gibson (2010)

To measure person-centeredness of long-term aged care (according to staff)

Thirteen items scored on Likert scale (1 to 5). Three subscales: personalizing care, organizational support, environmental accessibility.

Construct validity: 3 factors explain 56% of total variance.

Cronbach’s alpha of total scale =.84. Test-retest reliability: Pearson’s r of

0.7.7 The Person-Centered

Climate Questionnaire—Patient and Staff Versions

Edvardsson & Koch (2010, 2013)

To measure person-centeredness from staff and patient perspectives

Seventeen items (patient version) or 14 items (staff version) in 4 or 5 domains: competency of staff, personalizing care, personalizing the environment, having choices, involvement of significant others (staff version only). Patient version has 2 subscales: safety and hospitality. Staff version has 4 subscales: safety, everydayness, community, and comprehensibility.

Patient version: Construct validity: 2 factors explain 65% of total variance.

Cronbach’s alpha of total scale: 0.90, and of subscales: 0.96, 0.89. Test-retest reliability: Intraclass correlation of 0.7.

Staff version: Construct validity: 4 factors explain 72% of total variance. Cronbach’s alpha of total scale: 0.89, and of subscales: 0.87, 0.79, 0.82, and 0.69, respectively.

Test-retest reliability: Intraclass correlation of 0.8.

8 The Person-Centered Inpatient Scale

Coyle and Williams (2001)

To measure inpatients’ perceptions of the person-centeredness of their care

Twenty items in five dimensions: personalization, empowerment, information, approachability/ availability, respectfulness. Scored on 5-point Likert scale.

Not presented.

9 The Client-Centered Care Questionnaire

Witte (2006) To measure the client-centeredness of professional home nursing care from the client’s perspective

Fifteen items in one dimension, client-centered care, scored on 5-point Likert scale.

Construct validity: 1 factor explains 58% of total variance

Cronbach’s alpha of total scale: 0.94

Source: Adapted by the authors from Edvardsson & Innes, 2010.

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Exhibit 4. Excerpt From the Wisconsin Person-Directed Dementia Care Assessment Tool

Name—Environment FacilityTopic and Details

Name—Observer

Scale

Name—ObserverStrengths

Time Period of

Observation

Improvement Areas

Environment Weak-Strong

— —

Sound LevelGoal: The environment has a comfortable sound level that is enjoyed by the people with dementia who live there.

— —

Systems are not creating noise such as overhead pages, loudspeakers, staff, room and chair alarms (e.g., no overhead paging, staff carry phones/pagers that alarms go to).

1 2 3 4 — —

Note: Minimal use of personal alarms; alarms are not safety devices, they are alerting devices. There has to be supervision on hand to respond to the alert and address the need or desire of the individual to stand up (see guidelines for alarm use in the Appendix).

1 2 3 4 — —

Music is appropriate for people with dementia who desire it (vs. staff choice, which is not appropriate).

1 2 3 4 — —

Sounds, music, and interactions are soothing or pleasant. 1 2 3 4 — — Pacing of sound from quiet to energetic throughout the day. 1 2 3 4 — —

Alternatives are available for individual who want/need quiet or energized areas.

1 2 3 4 — —

The focus of PEONIES is on 12 “personal experience” outcomes:

• I decide where and with whom I live.

• I make decisions regarding my support and services.

• I decide how I spend my day.

• I have relationships with family and friends I care about.

• I work or do other things that are important to me.

• I am involved in my community.

• My life is stable.

• I am respected and treated fairly.

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• I have privacy.

• I have the best possible health.

• I feel safe.

• I am free from abuse and neglect.

PEONIES was used by external quality reviewers as part of the SFY2012 annual review process to compare quality measures across populations (adults with intellectual and developmental disabilities, adults with physical disabilities, and elders) and across long-term care programs (Family Care, Partnership, and IRIS) throughout Wisconsin (Karon et al., 2011), including people with dementia.

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SECTION 6CONCLUSIONS  

The health care and long-term services and supports systems are changing from ones in which the physician/professional simply decides what is best without consultation with the consumer to more person-centered systems in which the consumer is an active participant in the decisionmaking process and his or her goals and values are explicitly taken into account. Making this change is challenging in dementia care because a simple application of person-centered care assumes a rational and capable consumer decision-maker, which does not necessarily exist for a person with dementia. Nonetheless, people do not surrender their right to autonomy simply because they have a diagnosis of AD and the disease exists along a continuum of capability. Especially in the early to moderate stages of AD, individuals are able to actively participate in the decisionmaking that affects their lives. And even people with severe dementia can make their preferences known on a variety of important everyday decisions.

Research suggests that many families and service providers do not adequately incorporate the voice of people with AD into the care planning and decisionmaking process. Too often it is assumed that people with dementia cannot contribute to these decisions and they are excluded from the discussion or their perspective not taken into account, even though the decisions are about them and affect them. A number of tools are available to assess the decisionmaking capacity of individuals with dementia and to assess the degree to which individuals with dementia participate in the decisions that affect them. In addition, tools are available to assess the person-centeredness of the care process and outcomes.

To better serve people with dementia and their families, it is important that the long-term services and supports system find better ways to incorporate the goals, values, and preferences of people with dementia into the decisionmaking process. People with dementia are, first and foremost, people and their right to control their own lives needs to be respected to the extent practicable.

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APPENDIX A

THE IMPACT OF PERSON-CENTERED AND PERSON-DIRECTED CARE

A number of studies, many of them outside of the United States, have shown the benefits of person-centered and person-directed care for people with dementia. One of the more comprehensive models for nursing home culture change, the Green House model has shown some positive effects (Kane et al., 2007). Controlling for baseline characteristics (age, sex, activities of daily living, date of admission, and proxy interview status), statistically significant differences in self-reported dimensions of quality of life favored the Green House facilities over one or both comparison groups. The quality of care in the Green House facilities at least equaled, and for change in functional status exceeded, the comparison group nursing homes.

In geriatric facilities and hospitals in Japan, higher person-centered dementia care scores—including having a positive affect, ability to communicate, spontaneity and activity, and attachment to others—have been shown to be significantly correlated with quality of life scores (Terada et al., 2013). In Australia, Chenoweth and colleagues (2009) conducted a cluster-randomized controlled trial at 15 nursing homes with 289 residents randomly assigned to either person-centered care, dementia care mapping, or usual care. Dementia care mapping is a specific assessment tool and philosophy that attempts to measure both quality of care and quality of life to improve person-centered care (Brooker, 2005). Assessed over a 4-month intervention and 4-month follow-up period, both person-centered care and dementia care mapping lessened agitation symptoms compared with usual care, and dementia care mapping was associated with a reduction in falls (Chenoweth et al., 2009). Chenoweth and colleagues (2014) also conducted a subsequent randomized controlled trial of a person-centered dementia care environment in 38 residential facilities in Australia (n = 601). They found that the intervention was associated with significant improvement in quality of life, agitation, care interaction quality, and emotional responses to care.

In a cluster-randomized trial in Norwegian nursing home residents (n = 446), both dementia care mapping and the VIPS practice model had significant positive effects after 10 months, as measured on the Neuropsychiatric Inventory (a comprehensive assessment of psychopathology in people with dementia), both overall and on agitation and psychosis scales (Rokstad et al., 2013). Dementia care mapping had a significant positive effect on quality of life, as measured by the Quality of Life in Late-Stage Dementia (QUALID) scale; the VIPS intervention had a significant positive effect on depression as measured by the Cornell Scale for Depression in Dementia (CSDD).

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An intervention that included staff training in person-centered dementia care has also been shown to reduce the use of antipsychotic medication use among nursing home residents in the United Kingdom (Fossey et al., 2006). After a 10-month intervention, only 23 percent of residents were taking neuroleptic drugs in intervention homes, compared with 42 percent in control homes (P =.02); however, adjusting for baseline neuroleptic use and region resulted in a reduction that was no longer statistically significant.

One of the most challenging behavioral issues for care providers of persons with dementia is agitation and aggression (such as hitting, biting, and screaming), which occurs during personal care activities such as bathing. Among people with dementia, the prevalence of these behaviors is as high as 65 percent in the community and 86 percent in nursing homes (Sloane et al., 2004). To explore better ways to reduce these behaviors, a small (n = 73) randomized controlled trial of person-centered showering and towel bathing was conducted in 15 nursing homes in North Carolina and Oregon (Sloane et al., 2004). Person-centered showering techniques included providing choices, covering with towels to maintain resident warmth, distracting attention (e.g., by providing food), using bathing products recommended by family and staff, using no-rinse soap, and modifying the shower spray. The control group received standard showers. The authors report significant reductions in aggressive incidents with both towel bathing and person-centered showering compared with controls (P <.001). Similar reductions were achieved in both intervention groups, but discomfort was less in the towel-bath group (Sloane et al., 2004).

There is some evidence that person-centered care has benefits for both care providers and care recipients, although much of the evidence is in the form of case studies (Pioneer Network, 2012). However, in a review of seven randomized controlled trials and semi-experimental studies, five (three in the Netherlands, one in Australia, and one in the United States) reported significant positive effects in terms of burnout, stress, and job satisfaction (Barbosa, Sousa, Nolan, & Figueiredo, 2014). In Sweden, a person-centered care intervention in a residential aged care facility was associated with significant reductions in “stress of conscience,” or the stress generated by being unable to provide high-quality care (Edvardsson, Sandman, & Borell, 2014).

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