Person-Centred Care in Dementia - DementiaHub.SG

Person-Centred Care in Dementia

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The term “person-centred care”, as a frequently-used term and a developing area,1 does not have a single agreed definition. When loosely defined, it has been used to refer to philosophies of caring that include goals that range from an emphasis on the dignity of the person being cared for, treating this person as an individual, ensuring that care is organised around the person, to involving the person and their close kin in their own care planning.2

Many of the person-centred care approaches within the dementia care field today draw from the work of Tom Kitwood’s seminal work on dementia care. Kitwood highlights that personhood and the relationships between the persons in question and others around them are the core of person-centred dementia care. Instead of historically dominant thought paradigms which claim that only neurological processes cause dementia, Kitwood emphasises that the social environment of the persons being cared for is a critical determining factor for the wellbeing of these persons, and the presentation of their neuropsychological conditions, according to the Enriched Model of Dementia, which will be detailed later in this article. The social environment concerns the way in which the cared-for persons are perceived by the persons around them, and consequently, the kinds of relationships that these persons have with them.

Because of the central role has played in the development of theory, practice, and history of person-centred dementia care, this article will begin by exploring the influences upon his work. Following this, the article will briefly describe a few prominent approaches to person-centred care as practiced in the dementia care field today, namely the Spark of Life approach, the Eden Alternative, and Dawn Brooker’s VIPS approach.

A Short History of Person-Centred Care

The Influence of Carl Rogers’ Person-Centred Therapy

“Person-centred care”, as it is used in the field of dementia care, was drawn by Kitwood from the work of the American psychotherapist Carl Rogers,3 who developed and named the therapeutical approach known as person-centred therapy. Key characteristics of this approach include the assertions that people relating to the persons in question must be genuine (the condition of congruence), empathic, i.e., understand the client’s experience and perspective, and finally, have unconditional positive regard, that is, to approach the person with no judgment.4 These characteristics are apparent in the person-centred care approach of dementia care.

Enriched Model of Dementia

The development of a biopsychosocial model of health, promoted by the American psychiatrist George Engel in the late 1970s,5 and incorporated into Kitwood’s Enriched Model of dementia, also contributes to the concept of person-centred care of dementia. In this model, dementia is a condition that should be understood from a view that takes into account the combined effects of biological, psychological, and sociological factors on the development of the condition of a person with dementia in an integrated way.6

Prominent Person-Centred Dementia Care Approaches

Spark of Life Approach

The Spark of Life Approach, pioneered by Jane Verity, who had studied with Tom Kitwood, and co-developed by Hilary Lee, began as an interactive therapeutic social group programme called the Spark of Life Club Program, which aimed to provide an environment for persons with advanced dementia to experience rehabilitation and recover lost abilities. The programme was researched by Hilary Lee for her Master’s Degree, and further developed into a more extensive philosophy and programme for dementia care.7

Key points of focus of the Spark of Life approach are the quality of life of persons with dementia, and the belief that the recovery of abilities in a supportive and understanding social and emotional environment, termed as ‘rementia’, can occur.8

The Eden Alternative

The Eden Alternative, an approach towards person-centred care, was developed by geriatrician and nursing home physician William H. Thomas in 19919 response to what Thomas believed were the “three plagues of nursing homes: loneliness, helplessness, and boredom.”10 Its vision is described by principles known as the 10 Eden Alternative principles:

The 10 Eden Principles

1. The three plagues of loneliness, helplessness and boredom account for the bulk of suffering among our elders.
2. A fulfilling life involves creating a human habitat with people of all ages and abilities (including children), plants and animals.
3. The antidote to loneliness is companionship.
4. The antidote to helplessness is the opportunity to give care as well as receive care.
5. The antidote to boredom is variety and spontaneity.
6. All activity must be meaningful to the person.
7. Medical treatment is not the only way.
8. People need to be able to make decisions for themselves.
9. Culture change is a never ending journey.
10. Wise leadership from all of us is essential.11

The Eden Alternative approach was developed for persons living in nursing homes, and specifically, for older persons. This approach is, in effect, also practiced in dementia care settings because of the large overlap between older persons living in nursing homes and persons with dementia.

Eden principles place a large emphasis on ensuring companionship and activity. In reflection of this emphasis, Eden facilities usually feature engagement with animals, children and youths, and the larger community, which the nursing home residents are encouraged to interact and build relationships with. According to research, interactions with children, youths, and animals may have significant impacts on home residents’ loneliness and feelings of helplessness,12 while connecting them relationally to the community around them. These initiatives support the dignity and social connectedness of Eden facility residents.

The VIPS Perspective of Person-Centred Care

The psychologist Dawn Brooker’s approach to person-centred care in the dementia care context is defined as follows:

Person-centred care comprises four elements, which are

• V for Valuing: Valuing people with dementia and those who care for them
I for Individuals: Treating people as individuals
P for Perspective: Looking at the world from the perspective of the person with dementia
S for Social Environment: A positive social environment in which the person living with dementia can experience relative wellbeing

This is otherwise expressed by the formula “PCC (person-centred care) = V + I + P + S”.13

Each element of VIPS is comprised of several smaller indicators. For example, Valuing people can be indicated by how well everyone in a care team or organisation knows what the team stands for (Vision), and the extent to which systems are in place to ensure staff know they are valued as a precious resource (Human resources).14  View a full list of the indicators that describe each element.

Care Cultures

Culture, according to different definitions, refers to information acquired from other individuals through social learning, such as by imitation or communication, that can affect an individual’s behaviours, according to the psychologist Steven Heine,15 or a historically transmitted pattern of meanings embodied in symbols by which people communicate knowledge and attitudes, according to the anthropologist Clifford Geertz.16 In these definitions of culture, information is learnt from others and historically perpetuated.

In the context of an organisation, organisational culture can be defined as “the assumptions shared by members of an organisation, used in their daily practice, and reinforced through providing successful solutions to problems faced in the course of work”.17 This means that the culture of an organisation that cares for persons with dementia is socially transmitted across generations of staff. Organisational culture has implications on the way persons with dementia are cared for in the long run, since the way the organisation cares for care recipients is heavily influenced by its culture, which does not easily change.

Person-centred care is one such culture. It both influences the thoughts and actions of care teams in a systemic way, and is perpetuated by what care teams think and do. For an organisation’s culture to sustainably change towards a person-centred culture of care, everything that can potentially influence the day-to-day culture of care should be addressed with an eye on the long term.18 This includes the environment of the organisation, the values of different levels of organisational staff, the communication patterns between staff teams and between staff and the persons with dementia, amongst other factors.

Integrating Person-Centred Care Approaches With Local Approaches

It is also worth considering how existing cultural perceptions and worldviews in the place where person-centred care is being applied may affect the way person-centred care is received, and is integrated into care approaches, by persons being cared for, caregivers, organisations, and organisational staff. Each region, community, or organisation has a culture that differs slightly from others. In addition, in the Singapore context, organisational staff are from different cultural groups and nationalities. Studies have shown that a specific culture’s culture, context, and language can influence the adaptation of person-centred care related tools, such as the Person-centred Practice Inventory – Staff (PCPI-S).19, 20 This suggests that inter-cultural communication of person-centred concepts to organisational leaders and staff members needs to be done with an awareness of cross-cultural differences in order to ensure that there is both an accurate understanding of person-centred care, and consensus over how the organisation intends to proceed having understood this perspective of care.

Bringing Brooker’s VIPS person-centred care approach to dementia care into local contexts does not necessarily mean replicating a new model of care without continuing the care approaches inherent within an organisation’s culture and values already being practiced in that local context. Instead, care teams and organisations could consider their own vision and approach to care alongside the person-centred care approach, and decide the best course of action within a coherent value system.

Measures of Person-Centred Dementia Care

Read Tools for Dementia Practice & Research for more information regarding measures of person-centred care, such as the Dementia Care Mapping 8th Edition, the VIPS Assessment Tool, and other tools.

Strengths & Limitations of Person-Centred Dementia Care

A commitment to person-centred dementia care would require a consideration of its strengths, the evidence base for its efficacy in practice, and its challenges and limitations.

Empowerment of Persons With Dementia and Their Kin

A key strength of person-centred care is that it puts power in the hands of persons with dementia and their close kin. Apart from providing a moral imperative to care for persons with dementia by recognising the need to value their personhood, person-centred care approaches, by recognising the preferences, wishes, and unique identities of persons with dementia and their kin, also provides these persons with the power to shape their own care and their everyday lives21. In addition, though persons with dementia may not have the ability or legal power to make decisions that require a higher level of mental capacity, a social- and health-care system characterised by person-centred care would involve close kin, such as caregivers, trusted family members, or legal attorneys, in important decisions regarding their personal matters. This allows care systems to, rather than treating care recipients as impersonal objects to operate on, instead work alongside these recipients as empowered partners involved their own care.22

A Focus on Systemic, Organisation-Wide Changes

In addition to highlighting the general need to provide care that places care recipients at the centre of care services, person-centred care approaches have also articulated the need for making systemic changes to care organisations by changing their care cultures. This focus on changing care cultures raises the probability that an organisation’s implementation of a person-centred care approaches will be sustained in the long-term.

Furthermore, by emphasising the need to empower organisations’ management and staff to work together to deliver care, person-centred approaches are in general comprehensive in describing how personnel practices are an important intervention point in the effort to align organisational culture with person-centred care. This is especially so because management teams set organisational values and vision, and staff require the support of management teams to execute their care.23 This detailed discussion on how organisations should deliver care to care recipients is a strength of person-centred care approaches.

Literature and Evidence Base on Person-Centred Care Approaches

The literature on person-centred dementia care approaches is currently developing alongside the field of person-centred dementia care practice. Currently, studies on person-centred dementia care have shown support for the effectiveness of these approaches.

In a 2019 systematic review of organisational-level implementation of person-centred care found that the quality of life of care recipients can be increased, and neuropsychiatric symptoms reduced, when this approach is implemented at an organisation-wide level with full support from organisation leaders.24 Another study involving a systematic review and meta-analysis of person-centred dementia care living in long-term care facilities and homecare settings found that the approach is able to reduce agitation, neuropsychiatric symptoms, and depression, while improving quality of life, though the learning and skill development of care personnel is needed for care recipients’ quality of life to be improved, and for effects on receipients’ behavioural problems to be sustainable.25 Finally, a cross-sectional study conducted in 7 nursing homes in Singapore, published in 2021, concluded that the overall level of person-centred care was positively associated with better resident well-being.26

There is a growing body of literature on ways to measure person-centred dementia care, which in turn is facilitating the quality and quality of literature and evidence on person-centred dementia care. For more information on measures of person-centred dementia care, find out at Tools for Dementia Practice & Research.

Cultural Differences

A challenge that teams that attempt to advocate person-centred dementia care faces is that it has to consider, as suggested in the earlier “care cultures” section of this article, the local cultures of the groups which the person-centred care approach will work with. Person-centred care approaches have an inherent value system and philosophy which may have differences with the values and thinking that the organisations, personnel, care recipients, caregivers, and local community-at-large may espouse. Communication and dialogue between the person-centred care advocates and the local community is encouraged to agree on and articulate the values and plans that the local organisation itself decides to proceed with.

Working With Different Organisations and Parties to Deliver Care

A challenge in implementing person-centred care is the necessity of working with different parties who may not work to deliver care in a person-centred way. For example, when a person with dementia and their care team face a care system or care personnel who may not be familiar with the care recipient due to rapidly changing staff or staff attrition, or because different service providers may not communicate or collaborate sufficiently, the care recipient will lose out on care quality. Wider cultural awareness on person-centred care, and discussions on best practice approaches for collaboration between different organisations to deliver person-centred care, may be necessary to meet this challenge.

Resource Constraints

Person-centred care is costly, although a necessarily costly investment in the valued lives of persons with dementia. To provide this care, finite resources including manpower, the state of the environment including physical facilities, and funding will need to be considered.

Implementing Person-Centred Dementia Care: Person-Centred Care Planning

In order to implement quality person-centred dementia care for persons diagnosed with dementia, care plans are formulated.

Care plans are extensions of medical records that are written records articulating care goals and action plans. They are living documents, that is, they are routinely reviewed and updated by care recipients, their next-of-kin, caregivers, and care professionals. Care plans aim to facilitate care that is individualised for these persons, coordinated across care teams, and well-documented.

For more information on person-centred care planning, find out at Person-Centred Care Planning.

References

  1. The Health Foundation. (2016, January). Person-centred care made simple. https://www.health.org.uk/sites/default/files/PersonCentredCareMadeSimple.pdf
  2. Ibid.
  3. Brooker, D. (2004). What is person-centred care in dementia?. Reviews in clinical gerontology13(3), 215-222.
  4. Murdock, N. L. (2017). Theories of Counseling and Psychotherapy: A Case Approach (4th ed.). New York: Pearson.
  5. The Health Foundation. (2016, January). Person-centred care made simple.
  6. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  7. History of the spark of life model of care. Retrieved February 22, 2021, from https://dementiacareinternational.com/history-spark-life-philosophy/
  8. Barback, J. (2014, March 10). Spark of life approach: is it the way to go? Healthcentral.nz. https://healthcentral.nz/spark-of-life-approach-is-it-the-way-to-go/
  9. Brune, K. (2011). Culture change in long term care services: Eden-Greenhouse-Aging in the community. Educational Gerontology37(6), 506-525.
  10. Thomas, W. H. (1996). Life worth living: How someone you love can still enjoy life in a nursing home: The Eden Alternative in action. Publisher: Vanderwyk & Burnham.
  11. Alzheimer’s WA. (n.d.). Models of Care. https://www.alzheimerswa.org.au/about-dementia/understanding-dementia-care/models-of-care/
  12. Brune, K. (2011). Culture change in long term care services: Eden-Greenhouse-Aging in the community. Educational Gerontology37(6), 506-525.
  13. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  14. Ibid.
  15. Heine, S. J. (2010). Cultural psychology. In S. T. Fiske, D. T. Gilbert, & G. Lindzey (Eds.), Handbook of social psychology (p. 1423–1464). John Wiley & Sons, Inc. https://doi.org/10.1002/9780470561119.socpsy002037
  16. Geertz, C. (1973). The interpretation of cultures (Vol. 5019). Basic books.
  17. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  18. Ibid.
  19. Balqis-Ali, N. Z., San Saw, P., Jailani, A. S., Fun, W. H., Saleh, N. M., Bahanuddin, T. P. Z. T., Sararaks, S., & Lee, S. W. H. (2021). Cross-cultural adaptation and exploratory factor analysis of the Person-centred Practice Inventory-Staff (PCPI-S) questionnaire among Malaysian primary healthcare providers. BMC Health Services Research21(1), 1-12.
  20. Bing-Jonsson, P. C., Slater, P., McCormack, B., & Fagerström, L. (2018). Norwegian translation, cultural adaption and testing of the Person-centred Practice Inventory–Staff (PCPI-S). BMC health services research18(1), 1-10.
  21. Poland, F., & Birt, L. (2016). The agentic person: shifting the focus of care.
  22. Pulvirenti, M., McMillan, J., & Lawn, S. (2014). Empowerment, patient centred care and self‐management. Health Expectations17(3), 303-310.
  23. Chenoweth, L., Stein-Parbury, J., Lapkin, S., Wang, A., Liu, Z., & Williams, A. (2019). Effects of person-centered care at the organisational-level for people with dementia. A systematic review. PloS one14(2), e0212686.
  24. Ibid.
  25. Kim, S. K., & Park, M. (2017). Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis. Clinical interventions in aging12, 381.
  26. Tew, C. W., Ong, S. P., Yap, P. L. K., Lim, A. Y. C., Luo, N., Koh, G. C. H., Ng., T.P., & Wee, S. L. (2021). QUALITY OF LIFE, PERSON-CENTRED CARE AND LIVED EXPERIENCES OF NURSING HOME RESIDENTS IN A DEVELOPED URBAN ASIAN COUNTRY: A CROSS-SECTIONAL STUDY. Jour Nursing Home Res7, 1-8.
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