Person-centered dementia care is a philosophy of care, pioneered by Kitwood and Bredin (1992a,b) in the early 1990s, that is now universally accepted as synonymous with best practice in care for individuals with dementia (Downs, 2013; World Health Organization [WHO], 2012). The tagline for person-centered dementia care is “the person comes first,” by which Kitwood (1997) meant approaches that affirm, enable, and empower the individual with dementia are the fundamentals of excellent dementia care. In England, the focus on ensuring quality of life for individuals with dementia is central to its national dementia strategy, the tagline for which is “putting people first” (Department of Health, 2009).
Kitwood's (1997) emphasis on placing the individual first came in response to the dominant perception at the time that those with dementia were less of the people they had been and/or less like a person. The counter argument posed by Kitwood (1997) in the United Kingdom, as well as Post (2000) and others in the United States, was how individuals engage with, care for, and respond to those with dementia affects their quality of life as much, if not more so, than the disease. By implication, the person-centered care (PCC) movement argued that one could live well with dementia in a community and society that valued difference and embraced impairment, and sufficiently understood the condition to mitigate its influences on day-to-day functioning. From a person-centered perspective, the key challenge facing individuals living with dementia is the threat of no longer being considered a person, a human being with feelings, needs, rights, and entitlements (Kitwood, 1997). The person-centered approach sought to reinstate the individual with dementia as a valued human and social being with not only moral worth (Post, 2000), but also entitlement to human rights (Morton, 1999).
Although Kitwood (1997) stressed that the concept of PCC applied to all settings, it has received the most attention in formal, long-term care settings (Chenoweth et al., 2009; Dichter et al., 2015; Fossey et al., 2006; Jeon et al., 2012; Rokstadt et al., 2013; van de Ven et al., 2013; van de Ven et al., 2014). PCC is now being applied across the dementia journey, from diagnosis to death (Edwards, Voss, & Iliffe, 2013, 2014; Fortinsky & Downs, 2014; Middleton-Greene, Chatterjee, Russell, & Downs, 2016; National Collaborating Centre for Mental Health, 2007).
Key Concepts of Person-Centered Care
The introduction of PCC brought with it new concepts and language to describe the dialectic process of living with dementia (Downs, Clare, & Mackenzie, 2006), including “personhood,” “psychological needs,” “the biopsychosocial model,” and the “importance of the person's perspective.” These concepts are described below in more detail.
Personhood is a pivotal concept in PCC (Brooker, 2004). It sets a value base that individuals with dementia have moral worth and entitlement to social standing, regardless of the degree of cognitive impairment (Kitwood, 1997). In this relational approach to personhood, an individual is a person among others. What others do, or fail to do, will enhance or diminish that individual's personhood or standing as an individual. Such an approach to personhood contrasts with the cognitive approach, which characterizes personhood in terms of rationality. An individual is a person because he/she has the capacity to think and engage in intellectual processes. This view, emphasizing rationality, leads to concluding that individuals with dementia, especially those with advanced dementia, are in some ways no longer fully human (Post, 2000).
Bartlett and O'Connor (2007) critiqued the notion of personhood, promoting instead the importance of citizenship. They argued that individuals with dementia are first and foremost citizens with the rights and entitlements of all citizens, and that without an equal emphasis on upholding citizenship and community participation, no amount of health and social care reform will lead to them living well with dementia. There is currently growing emphasis on upholding their rights to citizenship and participation to the extent they wish in community life and in their care (Kelly & Innes, 2013).
Another key concept underlying Kitwood's (1997) person-centered dementia care is the importance of ensuring well-being by recognizing and addressing the psychological needs of individuals with dementia. Kitwood (1997) proposed that those with dementia had needs for: attachments or bonds with others; comfort or tenderness and soothing of pain; identity, knowing, and being known for who one is; occupation (involvement in the process of life); and inclusion (the need to be part of a group). These needs culminated in an overarching need for love and interconnectedness. Kitwood (1997) also proposed that well-being is achievable for individuals with dementia if their needs are met, including their need for love. The importance of meeting needs, and the consequences of not addressing needs, found voice in the United States in the language of need-driven, dementia-compromised behavior; behavioral expressions (e.g., crying, shouting, hitting) were seen as failures to address need or assaults on personhood, rather than as inevitable symptoms of the disease process (Whall & Kolanowski, 2004). Thus, by changing the nature of the interaction, one could directly affect the individual's personhood and well-being. This thesis has subsequently been well substantiated in the United Kingdom (Fossey et al., 2006) and United States (Sloane et al., 2004). In the United States, a randomized placebo-controlled clinical trial of individualized interventions to address unmet needs significantly reduced physical nonaggressive and verbal agitation while increasing pleasure and interest for individuals with dementia (Cohen-Mansfield, Thein, Marx, Dakheel-Ali, & Freedman, 2012).
The Biopsychosocial Model
In the United Kingdom, Kitwood (1997) is credited with introducing a more holistic, biopsychosocial approach to understanding the experience of living with dementia. Similar to what Sabat (2001) did in the United States, Kitwood (1997) argued that the effects of living with dementia were not solely the effects of a neurological condition but the result of a dialectic or dynamic interplay between biological, social, and psychological factors. This biopsychosocial approach was not new to considerations of health conditions. What was new was its application to understanding the experience of living with dementia—an experience attributed exclusively to the extent of brain disease. He argued that much of the poor quality of life experienced by individuals with dementia could be attributable to the psychosocial context, both at the level of society and interpersonal interactions with family and care staff (Kitwood, 1997). At the societal level, it is now widely acknowledged that dementia carries a stigma that exacerbates the challenges of living with the disease throughout its course, from diagnosis to death, for the individual with dementia and family carers (Alzheimer's Disease International, 2012; Katsuno, 2005). A report by the United Kingdom's International Longevity Centre (2014) concluded that the stigma of dementia leads to social withdrawal and distancing, and that this social exclusion negatively impacts an individual's quality of life. At the level of individual, interpersonal interactions, Kitwood (1997) provided operational definitions of “malignant social psychology,” in which he described interactions that undermined individuals' well-being or failed to address their psychological needs. These definitions comprised 17 behaviors including ignoring, imposition, mockery, infantilization, and disempowerment.
Following in the tradition of a biopsychosocial approach, Spector and Orrell (2010) distinguished between “tractable factors” (i.e., aspects of an individual's life that are amenable to change) and “fixed” or “intractable factors” (i.e., not amenable to change). Adopting a biopsychosocial approach introduces therapeutic potential to dementia care where “change, adaptation and improvement is possible” (Spector & Orrell, 2010, p. 959). Much can be done to improve the quality of life of individuals with dementia, such as interventions including the Tailored Activity Program (Gitlin et al., 2009) and coping strategy–based family carer therapy for individuals with dementia living at home (Cooper et al., 2012).
Importance of the Person's Perspective
A key tenet of Kitwood's (1997) PCC movement for individuals with dementia is the importance of engaging directly with the experience of those with dementia and understanding their viewpoint. Subjective experience is unique to an individual; no two individuals will share the same subjective experience of an event or situation. Kitwood's (1997) PCC movement also led the way for a social movement of individuals with dementia defining their own experience of living with this condition. The slogan from the disability rights movement, “Nothing About Us Without Us,” is receiving widespread acceptance by the dementia community (Williamson, 2012). Most recently, the Dementia Engagement and Empowerment Project in the United Kingdom has sought to support groups of individuals with dementia who are seeking to influence services and policy (Williamson, 2012). Although not its primary aim, collective action of this kind has had positive benefits for those involved (Clare, Rowlands, & Quin, 2008).
There remains a concern that the subjective experience and voice of individuals with advanced dementia is not heard (Clare et al., 2008), meaning that the experience and perspective of those who lack verbal language or at least verbal fluency, who may have less command over the production of speech, are less well understood. Kitwood and Bredin (1992a) developed Dementia Care Mapping, an observational framework for measuring the quality of care from the perspective of the individual with dementia (University of Bradford, 2008).
In England, the Department of Health (2010) released the quality outcomes they sought to achieve. Written as “I” statements, these can be easily described as person-centered. They include statements such as “I can enjoy life” and “I get treatment and support best for me and my family.” Assessing the extent to which individuals affected by dementia—those with dementia and their family members—say yes to these can be used as indicators or measures as to whether supports and services in the community are achieving their desired aim.
Person-Centered Care in the Community
The evidence-based argument for a PCC approach in care homes has been well established in the United Kingdom (Fossey et al., 2006). However, two thirds of individuals with dementia currently live in their own homes in the community (King's College London & London School of Economics, 2014). Individuals with dementia and their family carers value services that enable them to stay at home safely with personalized activities and socialization while carers receive emotional support, respite, and continue paid employment during their caring role (Low, White, Jeon, Gresham, & Brodaty, 2013). Nurses must ensure that the care and support this population receives at home and in their communities is person-centered (Alzheimer's Society, 2016).
A significant proportion of care is provided to individuals with dementia living in the community. Community nurses, whether a district or practice nurse and in a community setting, have long since worked with families and across generations to support effective relationship-centered care. This work places community nurses in a prime position to apply their skills to support the families affected by dementia to live well in the community setting (Harrison Dening & Hibberd, 2016).
Implications of the PCC approach for care practice in the community is that the goals of care should be to affirm the individual's value as a human being (personhood) and facilitate his/her agency. These goals will be achieved by knowing the individual's biography and life history; being attuned to his/her subjective experience of living with dementia; addressing his/her psychological needs; and ensuring interpersonal interactions and care processes enable and affirm, rather than demean or diminish, him/her.
Tackling the Effect of Negative Imagery and Language
Approaches to tackling negative imagery and language include public awareness and education, as well as community development—most notably dementia-friendly communities. The English National Dementia Strategy (Department of Health, 2009) recognizes that public awareness campaigns should stress the retained personhood of individuals with dementia. In England, the Department of Health's (2012) Prime Minister's Challenge on Dementia calls for dementia-friendly communities who understand what the experience of living with dementia is like and know how to support individuals with dementia. Such communities are now being established in the United Kingdom following examples from Europe and Japan (Henwood & Downs, 2014). Through these initiatives, the potential of local social networks and community organizations to support and connect individuals with dementia to mainstream opportunity is now being realized. Research on person-centered community care and support for individuals with dementia is relatively underdeveloped. Although media attention has been given to the dementia-friendly community movement, this has not had a parallel investment in terms of empirical investigation.
Supporting Family Members
Universally, most care for individuals with dementia is performed in the community by family and friends (WHO, 2012), increasingly with support from home care workers. Just as PCC in care homes requires support and supervision for care staff (Fossey et al., 2006), PCC in the community will require effective support for family and domiciliary care staff. This need for support will change over the course of living with dementia (Fortinsky & Downs, 2014) and includes instrumental, emotional, and financial support. In the United Kingdom, the Carers Trust (2013) interviewed family members and identified key transitions requiring adjustment in their journey of caring, including: renegotiating their individual identity, their shared identity as a member of a couple, and their family's identity. Hasselkus and Murray (2007) suggested ways occupational therapists can support families to tailor their everyday occupation to retain a sense of continuity in their family identities and construct new identities.
In addition to having their own needs for support, family members are keen to be included as partners in care. To effectively support their relatives with dementia, they need an understanding of the concepts of PCC. Carer involvement can help ensure quality care for individuals with dementia (Carers Trust, 2013). In an ideal situation, the needs of the carer and the individual with dementia are both met. However, it must be noted that these needs are sometimes at odds with one another. Individuals with dementia and their families may not always hold the same view or seek the same end. These discrepant perspectives will require active management in the community. Reamy, Kyungmin, Zarit, and Whitlatch (2011) explored discrepancies in perceptions of values and care preferences regarding autonomy, burden, control, family, and safety between individuals with dementia and their family caregivers. They interviewed 266 couples and found that carers consistently underestimated their relative's values for all five values. They concluded that many caregivers do not have an accurate depiction of their relative's values. This is of concern as carers may become the surrogate decision makers for relatives as dementia progresses. The authors suggest that these findings indicate the need for assessments of values and preferences, and to improve communication within the couple in the early stages of dementia (Reamy et al., 2011). The Alzheimer's Society (2006) provides a useful guide to the ethical issues facing families when making decisions.
Training and Support for Home Care Workers
Training in PCC, communication skills, and dementia care mapping have been shown to reduce agitation in care home residents; however, few studies have examined the impact of this training on community-dwelling individuals with dementia (Livingston et al., 2014). Increasing attention is being paid to the need for effective preparation, support, and supervision of the home care workforce. Despite the embrace of person-centered dementia care in England's national strategy, the Alzheimer's Society (2016) report on home care is compelled to remind the health and social care system to be proactive in taking action to make sure services are delivered that are person-centered and work for the individual and his/her family. Its campaign to “Fix Dementia Care” (Alzheimer's Society, 2016) specifically refers to “good dementia care” as being person-centered and calls for the appropriate training and support for health care professionals to do their job. The report draws attention to the disparity in preparation of health and home care workers, and concludes that PCC in the community will only be realized with:
- mandatory training for home care workers;
- inspecting training provided by care providers against standards;
- care providers taking responsibility for developing their workforce; and
- more widespread provision of dementia training for home care workers.
In 2016, Health Education England (HEE), a body created by the government to ensure the workforce has the right skills, attitudes, and knowledge, published a knowledge and skills framework for care of individuals with dementia (Skills for Health, Health Education England, & Skills for Care, 2015). It provides aims and learning outcomes for three tiers of knowledge and skills: (a) basic awareness for all who encounter individuals with dementia, (b) basic skills relevant to staff in all settings in which there are individuals with dementia; and (c) specialist knowledge and skills required to provide leadership to the workforce.
On the HEE's e-learning for health care platform (access http://www.e-lfh.org.uk/programmes/dementia), practitioners and professionals in health and social care can freely access three Tier 1 modules:
- Understanding dementia: describes the changes associated with dementia, how these are experienced by individuals with dementia and their families, and the range of aspects of individuals' lives that nurses can draw on to ensure they live well with dementia.
- Supporting individuals to live well with dementia: how to provide PCC to those with dementia and their family and close friends.
- Combating stigma, myths, and stereotypes: defining stigma, the way individuals with dementia are stigmatized and its consequences, and what nurses can do to challenge it.
Additional free online training is available from the Social Care Institute for Excellence (access http://www.scie.org.uk/dementia/e-learning/index.asp).
Addressing Risk Management
It is increasingly acknowledged that risk assessment and management is an essential aspect of ensuring PCC in the community. Family members and professionals tend to be risk averse, which can have a detrimental effect on an individual's well-being. In Risk Averse Carers Hasten Dementia Decline, Clarke, Wilkinson, Keady, and Gibb (2011) discuss a person-centered approach to managing risk for individuals with dementia: “focusing only on the physical safety of someone with dementia can result in the person's psychological and social wellbeing being neglected or ‘silently harmed’” (para. 2). They promote a person-centered approach to risk, which promotes choice for individuals with dementia while recognizing the challenges carers face. Recent research in the United Kingdom on the effects of training in PCC acknowledges the differences in cultures of care and levels of risk aversion between nurses and social workers, and the implications these have for their ability to provide PCC (Dingwall, Fenton, Kelly, & Lee, 2016; Kirkley et al., 2011). Increasing opportunities for assistive and other technologies will also play a role in managing risk associated with a more enabling and empowering ethic of care (Lorenz, Freddolino, Comas-Herrera, Knapp, & Damant, 2017; Topo, 2009). The Alzheimer's Society established a dementia-friendly technology charter as part of the Dementia Friendly Communities strand of the Prime Minister's Challenge on Dementia (access http://www.alzheimers.org.uk/info/20115/making_your_community_more_dementia-friendly/347/dementia_friendly_technology).
PCC is a well-established, universally embraced approach for caring for individuals with dementia. For Kitwood, its defining feature was to put the individual first—not the disease—to see the humanity of him/her rather than a set of symptoms that must be controlled. It has since been refined by other academics and professionals, and embedded in a range of dementia care settings. Although developed largely in response to disenfranchisement of individuals with advanced dementia living in care homes, it is equally applicable across the dementia journey. This approach is increasingly being adopted by national strategies, the scope of which includes care in the community. In England, there is now a major policy push toward person-centered dementia care in the community, including active efforts to combat stigma, effective support for family carers, training and support for home care workers, and addressing risk management.
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