<POINTS>

• The patient possesses a unique perspective and wealth of experience, knowledge and input that is often overlooked in the current healthcare system thereby limiting the effectiveness of care and research.
• Person-centered care (PCC) is a humanistic approach to healthcare that not only centers on the patient’s perspective, experience, and needs but also focuses on the person behind the ‘patient’ label.
• This approach is warranted to make dementia care effective and in dementia research to provide solutions that align with the patient’s needs.
• Establishing the PCC approach in dementia care and research begins with understanding that every patient is a person and this person needs to be valued and empowered despite their illness.

General Introduction

This report is a continuum of the previous column, which focused on presenting the desk study results of international case studies of patient and person involvement (PPI) in dementia research. In our previous report, we highlighted the foundational points necessary to establish PPI in dementia research in Japan. Please refer to the related details at the end of this column.
This report presents the concept of person-centered care (PCC) in the context of PPI in dementia care and research, using the Swedish example of PCC established by the University of Gothenburg’s Patient-Centered Care. This concept is inherent in the Swedish approach to care and to dementia care. This report first introduces PCC and its importance in healthcare, it then discusses the relationship between PCC and PPI and highlights why PCC is necessary for PPI to be effective in dementia research. The necessity and the role of PCC in dementia care is also presented. This report provides a case study of PCC in practice from the GPCC. The report also briefly discusses best practices for PCC in dementia care and research in Japan and concludes with some thought-provoking points and questions on how best to implement the PCC approach to PPI in dementia care and research in Japan.

Introduction to PCC

Today’s healthcare approach effectively treats a wide range of solitary diseases; however, it lacks a holistic approach to addressing the diversity and complexity of patients’ needs. The patient possesses a unique perspective and wealth of experience, knowledge and input that is often overlooked in the current healthcare system; neglecting the patient’s experience and input into their own care limits the quality and the efficacy of care (Bombard et al., 2018). Therefore, a more person-centered approach is warranted to improve the effectiveness of the current healthcare approach. Person-centered care (PCC) is a humanistic approach to healthcare that not only places the patient’s perspective, experience and needs at the center of care, but it also focuses on the person behind the ‘patient’ label (Rosengran et al., 2021). PCC is grounded on a partnership between the patient and healthcare professionals in which the healthcare professional places value on the person behind the patient label by listening to their story and building a care plan based on their story (Coulter et al., 2016). The patient’s narrative helps the healthcare professional to identify their needs, capacity, and challenges; the identification of these factors alongside the healthcare professional’s knowledge and medical examinations makes it possible to create a personalized care plan for the patient.
This approach is important to advance the current healthcare system because it accounts for the fact that a one-size approach to treatment is not always efficient as individual differences are not considered (Batalden et al., 2016). Moreover, the PCC approach empowers patients to have a voice in decisions regarding their health. Additionally, the patient’s knowledge, experience and input are also valued as patients become partners with healthcare professionals rather than being devalued and being perceived as less than healthcare professionals because of their health condition (Coulter et al., 2016).

PCC in PPI and Dementia Research

PCC must be central to PPI in dementia research. When it comes to involving, engaging, and making patients and the public partners in research, a person-centered approach in which patients’ capacity, resources and experience are recognized and valued in a way that patients become recognized as partners in making decisions regarding their health (Rosengran et al., 2021). The PCC approach is personalized, coordinated, and enables shared decision-making where patients and healthcare professionals work together to select the appropriate tests, treatment and support based on clinical evidence and the patient’s narrative and informed preference (Fridberg et al., 2022). PPI aims to make patients and the public partners in research; the tool to make this aim a reality is PCC. PCC focuses on the person behind the patient label and brings their narrative to the forefront of their care; this narrative is what is essential for PPI to be effective and not to become tokenistic in medical research (Rosengren et al., 2021). PPI aims to make patients and the public co-leaders with researchers regarding research pertaining to their health; for this to become possible, researchers must understand the person behind the ‘patient’ label and their story, for this understanding to be properly established, a person-centered approach is necessary. PPI can be carried out without the person-centered approach; however, it will become tokenistic as patients will be undervalued and perceived as passive recipients of care (Dellenberg et al., 2019).
In dementia research, PPI needs to be durable, sustainable, and resilient; it is not just about integrating PPI in research but working with PPI so that it becomes the best practice for medical research (Chenoweth et al., 2019). To achieve sustainability, durability and resilience in PPI practice, the person-centered approach needs to be integrated into PPI practice in dementia care and research (Rosengran et al., 2021). This approach will facilitate the relationship between patients, researchers, and healthcare professionals, thus encouraging shared decision-making, shared partnership, and shared leadership (Chenoweth et al., 2019). The establishment of shared-partnership and shared-leadership in dementia and medical research will result in the embedding of PPI through the person-centered approach in all levels of the healthcare system, from government policy to care delivery by healthcare professionals (Rosengran et al., 2021). This means that the patient narrative combined with medical, research and political expertise will be the driving force to redesign medical research and healthcare systems (Chenoweth et al., 2019).

PCC in Dementia Care

As well as being an important component of dementia research, the person-centered approach plays a key role in effective dementia care. Dementia patient care is lacking as patients are reduced to nothing more than their illness, and other aspects of their lives such as their life experience prior to the illness are neglected and devalued (Kitwood, 1997). The standard medical approach to treating dementia devalues the person behind the ‘patient’ title by focusing solely on the disease. Kitwood, who initiated the person-centered approach in dementia care proposed that the person behind the patient as well as their environment have to be considered and incorporated when it comes to dementia care, not only focusing on the neurological impairment (Kitwood, 1997). Moreover, patients’ needs often go unrecognized and unmet with the current care approach. These unmet needs can aggravate patients’ symptoms and result in more severe neuropsychiatric symptoms as well as behavioral and psychological symptoms (Kim et al., 2017).
The PCC approach aids in recognizing patients’ unmet needs because the patient narrative is at the forefront of this approach. By listening to patients’ stories and their lived experiences, the healthcare professional and/or researcher will be able to identify patients’ needs and provide adequate care that is not solely based on neurological impairment (Manthrorpe et al., 2016). In dementia care, non-pharmacological interventions that are not solely focused on neurological impairment are necessary and research has revealed that PCC interventions have been shown to be effective in attenuating BPSD and neuropsychiatric symptoms in patients with dementia as the life-course of patients were accounted for (Lee et al., 2016). Moreover, the PCC approach adds meaning to care by making the patient’s well-being a priority and this helps to improve the relationship between patients, healthcare professionals and researchers as patients understand that they are valuable and their insight and knowledge is valuable to the healthcare professionals (Kirvalidze et al., 2024). Additionally, every patient is a unique individual with a different experience of dementia; the PCC approach aids in individualizing the experience of dementia and thereby care by contextualizing it within a broader life-course perspective.

PCC at the Gothenburg University Centre for Person-Centered Care (GPCC), Sweden

An example of person-centered care in practice is at the Gothenburg University Centre for Person-Centered Care (GPCC) in Sweden. GPCC’s research is rooted in the humanistic approach of person-centered care. At GPCC, they aim to develop and establish partnerships between healthcare professionals and patients by employing the person-centered approach. This partnership is initiated by the healthcare professional inviting patients to tell their story, actively listening to the patient’s narrative, agreeing with the patient on the most suitable plan for them based on their narrative and documenting that plan in ways that becomes useful to the patient. Ongoing and interactive conversations between patients and healthcare professionals are central to establishing the partnership. This is what is being implemented and practiced at the GPCC; as well as that, they have also developed person-centered educational material to educate university students (medical students) and patient organizations on person-centered care. Moreover, over the years, researchers at the GPCC have developed and tested a variety of practice tools to support the learning, implementation, and assessment of person-centered care.

PCC in Dementia Care and Research in Japan

Based on the advantage of the PCC approach in in both dementia care and research and the work that is being carried out in Sweden with PCC, it is necessary to question what the best practice for PCC in Japan looks like. Integrating PCC into dementia care and research through PPI would require that researchers and healthcare professionals understand that the patient is a human, a person with a unique narrative first. This narrative must be respected and valued, and the patient’s perspective, experience, knowledge, and capacity must be recognized and valued by the medical professional. This is the only way that a co-creative partnership in research and dementia care can be established. If researchers and healthcare professionals fail to recognize patients as valuable persons with knowledge and experience, then dementia care will be inadequate and dementia research has no value and it could become conflictual. Recognizing placing value on, and empowering the person behind the ‘patient’ label is the fuel to effective care and research that generates solutions; thus, researchers and healthcare professionals must understand this fact.

Conclusion

In conclusion, person-centered care is a humanistic approach that places value on the person behind the ‘patient’ label. The PCC approach is essential for dementia care and research, and also for PPI to be durable, sustainable, and resilient. It is essential that healthcare professionals perceive and understand the value of the ‘patient’ narrative and how indispensable this narrative is for research and for care provision.

 

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Authors

Favour Omileke, MD, Ph.D. (Program Specialist, Health and Global Policy Institute)
Shoko Nakazato (Intern, Health and Global Policy Institute)
Nana Moriguchi (Associate, Health and Global Policy Institute)
Shunichiro Kurita (Senior Manager, Health and Global Policy Institute)