Enhancement of Aging in Place: An Evolving Understanding of Person-Centered Dementia Care in Home Settings

Abstract

Background:

There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships.

Objective:

The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings.

Methods:

A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses.

Results:

Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings.

Conclusion:

Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.

Keywords

Dementia care informal caregivers person-centered care theoretical model

INTRODUCTION

In 2018, more than 50 million people worldwide were living with dementia, nearly 60% in developing countries, with the fastest growth taking place in China [1]. The current number of older adults diagnosed with dementia in China reached 8.18 million in 2018 [2, 3]. In a society such as China that traditionally values filial piety and stigmatizes aging in residential care facilities, most persons with dementia (PWD) are community-dwelling and receive care and support from their family members in their homes [4 –6]. Living with dementia does not just affect those with the disease; it also has a profound impact on their family members’ physical and psychological wellbeing [7]. Among family care partners, spousal care partners play a primary role in supporting PWD. Limited availability of community-based services and support pose great challenges to PWD and their family, including lack of access to dementia-specific care, and difficulties of managing impact of the disease on their loved ones and maintaining their physical and psychological wellbeing [4, 8].

Known as a founder of the concept of person-centered dementia care, Tom Kitwood’s influential work emphasizes the importance of giving voice to, and supporting the personhood of PWD (i.e., the sense of self in the context of relationship and social being) [9]. Person-centered dementia care has been shown to promote formal caregivers’ sense of achievement and they are less likely to experience role strain [10, 11]. The past decade has seen an increased commitment to person-centered dementia care models and culture changes in long-term care (LTC) settings amongst formal caregivers such as nursing home staff and home health care aides. Unlike paid dementia care workforce or formal caregivers in long-term care settings, family caregivers are not formally trained or paid to do the role. They are doing the best they can to take care of their family members with little or no prior experience of being a caregiver of PWD. They often work on their own in-home settings without support from others. There is a significant yet neglected difference in person-centered care approach between formal and informal caregivers [4 , 8]. However, little has been discussed on how to facilitate and implement person-centered dementia care in home settings with spouses being primary caregivers. We tend to take it for granted that spouses naturally provide person-centered care for PWD because they have known each other, have been together for years, and it is one-on-one care in their own homes. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships. Care partners may overlook the changing needs of their spouses as they assume that they know their spouses very well. There is an urgent need for us to support families to provide person centered dementia care by understanding their challenges, unmet care needs, and how they maintain their relationship while providing care. The empirical findings can inform the development of a home-based person-centered dementia care model as a guide for the enhancement of aging in place among PWD [12, 13].

Therefore, this study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings. Including both individual level and relational variables to explore and understand their dyadic experiences of living with dementia will make substantial contribution to the current body of literature. The empirical findings from this study will inform the development of an evolved geriatric model of care that would enhance person-centered care and aging in place amongst older adults with dementia.

METHODS

We adopted a descriptive qualitative study approach and interviewed dyads of PWD and their spousal care partners. We used semi-structured open-ended interviews [14] to explore the experiences of PWD and their spousal care partner regarding living with dementia. Interview methods followed the consolidated criteria for qualitative research report [15]. The study design allowed participants the freedom to express their views in their own terms to generate reliable, comparable qualitative data, adding to the in-depth understanding of their experience and perceptions.

Participant selection

This study recruited participants from an ongoing epidemiological study [16], and used purposive sampling to select PWD and their spousal care partners who could provide rich information [17]. Eligible criteria included: 1) community-dwelling individuals who were clinically diagnosed with mild or moderate dementia; 2) speaking Mandarin or the Shanghai dialect; and 3) having spouses who were identified as primary caregivers of PWD. The classification of dementia as being mild or moderate was based on expert clinician diagnosis [18].

Data collection

Trained qualitative interviewer (first author JW) conducted an in-person, one-on-one interview with each person with dementia and their spousal caregiver at their home separately so that each person was able to openly communicate their experiences. Each interview took from 60–90 min depending on the amount of information the interviewee wished to share. All interviews were audio recorded. The interviewer made field notes and memos during or after the interview. Data collection was continued until thematic saturation was achieved based on the inductive approach, specifically, where interviews did not identify new codes for participants’ perceptions and thoughts on the focused topics [19]. A professional transcriptionist transcribed the interviews. De-identified transcripts were uploaded into ATLAS.Ti for analysis.

The interview guide was structured to elicit a comprehensive description of daily life from the perspective of the PWD and the care partner. Interviews began with the grand tour questions followed by probes. These questions served as guideposts with instructions for probing, validating, and transitioning between topics. Person-centered care core elements were embedded in the probing questions when the interviewer tried to have a better understanding of the nuances in their interactions [11]. We explored successes and challenges to person-centered dementia care using a dyadic approach to provide insights into how person-centeredness might be maintained through their daily interactions.

Data analysis

Our analysis team comprised bilingual researchers and English-speaking researchers and we used comprehensive methods to ensure the reliability of translation and bilingual coding [8]. We adopted both conventional and directed content analyses. Directed content analysis [20] is used to allow interpretation of data by drawing on the core concepts of person-centered dementia care [11] and Adaptive Leadership of Chronic Illness (ALFCI) [20, 21], which enabled us to include codes from the framework in our analysis to understand the dynamics between PWD and their care partners and eventually extend the framework in home-based settings using our empirical data. The conventional content analysis [22] was grounded in a naturalist philosophy because our goal is to be “data-near” [23]. This is to ensure that they are grounded and developed through the subjective perceptions of the participants and interpreted through the perspective of researchers to best describe the phenomenon.

A priori codes were developed from person-centered dementia care and ALFCI. ALFCL supports the idea that PWD can work collaboratively with their care partner to achieve optimal health outcomes and daily function. We used the concepts of adaptive work and collaborative work from ALFCL as codes in our analysis to explore the interactions between PWD and their care partners. Adaptive challenges are difficult to identify and require changes in values, beliefs, and approaches. Adaptive work can address adaptive challenges by taking actions that can influence change and promote care for PWD. Collaborative work is defined as the process of engaging each other in developing shared understanding of the context, associated challenges, and sense-making for shared meaning.

The team then expanded the codes to reflect experiences specific to PWD and their care partners in this study based on their narratives. We focused on their dyadic perceptions and experiences to enhance our understanding of the nature of their relationships and experience. Notes were made to clarify initial coding decisions. Any disagreements were resolved in the larger research team. Patterns and differences were identified among participants and across dyads. The authors referred to participants’ original quotes wherever more context was needed. Patterns, themes, and relationships between categories were noted in analysis to develop ideas about themes and interpretation. Discussions among members of the multidisciplinary research team continued until consensus was reached regarding the themes and interpretations.

Rigor

Multiple strategies were used to establish qualitative rigor [24]. For credibility, we engaged other team members so that non-coders could review and challenge our interpretations. To further ensure confirmability, we held frequent meetings of the coding team to discuss the use of codes, the coding, and refined definitions needed. Using features in ATLAS.Ti, we compared our coding patterns to ensure that the interpretations and hypotheses made from the analysis were sound. For dependability, we kept summaries and memos of all the discussion among members of the coding team to keep track of the interpretation.

Ethical consideration

The study was approved by the Institutional Review Boards of Fudan University. Signed informed consent was obtained from each participant and his/her care partners after explaining risks and benefits, confidentiality, and options for withdrawal prior to interviews.

RESULTS

A total of 20 dyads of participants with dementia and their care partners (13 diagnosed with mild dementia and 7 with moderate dementia) were interviewed for this study after saturation [19] was reached (See Table 1).

Table 1

Characteristics of participants

Characteristics	Participant with dementia	Care partner
Age (Interquartile range)	72 (65–78)	68 (59–80)
Male n (%)	9 (45%)	11 (55%)
Cognitive function n (%)
Mild dementia	13 (65)	N/A
Moderate dementia	7 (25)	N/A
Educational Level n (%)
Below elementary school	1 (5)	2 (10)
Elementary school	6 (30)	7 (35)
Middle school	7 (35)	8 (40)
High school/Vocational school	4 (20)	2 (10)
College and above	2 (10)	1 (5)
Living arrangement
Empty nest	18 (90)	18 (90)
With children	2 (10)	2 (10)

The challenges and opportunities of person-centered dementia at home

Too overwhelmed to be person-centered

Our findings indicated that the dyads experienced adaptive and technical challenges in their life. There was role shifting and diminishing of connections and special bonds within the cases as the gap between their care capacity and PWD’s care needs widened. They had limited access to clinical expertise and quality care service. Care partners were likely to be overwhelmed by the increasing caregiving burden so that they tended to focus more on completing daily living tasks rather than providing person-centered care in certain circumstances.

When CP4 was feeding her husband (PWD4) one day, she used a cloth to tie his arm so that he would not knock the bowls over to the floor by accident. She made sure that it was not tight and would not make him feel uncomfortable. However, she forgot to untie his arm before she went to wash the dishes. After she returned from the kitchen, her husband was crying in the room.

“I have never seen him crying like that before. He was crying like a child. I was shocked and blamed myself so hard that I hated myself at that time. How could I do that to him?”

Person-centered versus “for your own good”

We also found that care partners tried to implement their own person-centered approaches based on the knowledge of their own family member with dementia, established a mental model of caregiving from their life experiences, such as mother wit (natural wit or intelligence in caregiving). However, there were power differentiations in their relationship in the extended period of PWD’s cognitive decline. When they were navigating in the journey of living with dementia, some dyads failed to build new understanding of each other’s needs or sustaining PWD’s positive self-identify, thus, resulting in a lack of continuity of their positive relationships. One care partner reported that:

“We both like to be clean and tidy. It has been years of our habits. But after he got this ‘problem’, I need to remind him of going to shower. It becomes more and more difficult for me to get him into shower. He would pretend that he did not hear me or he would say that I’m annoying. I was doing so for his own good. How can you not shower every day in summer?” (CP7)

The interviewer asked her husband about this shower question and he said: “She just keeps telling me to go shower. She is like the boss of the house and I also feel that she thinks I’m smelly and not clean. I’m not dirty nor do I smell. I know when I need to take a shower.” (PWD 7)

Care partners’ spontaneous thoughts of respecting their spouses’ choices and feelings and meeting their spouses’ personalized needs corresponded well with the concepts of person-centered care. However, such person-centered strategies might not be unsustainable if not fully supported and appreciated in the family and in the wider community.

PWD6 had urinary incontinence but refused to use diapers. After wetting the bed several times, her husband had to get up in the middle of the night and asked her to use the bathroom. He helped her sit on the toilet and get up to avoid falling. This had affected his sleep quality negatively.

“You need to respect her choice as much as possible. She does not want to use diapers. I tried to explain it to her but she still refuses to use it. I guess she does not like the feeling or the diapers confuse her. That is my rule, I communicate with her first to understand her needs and preferences before I make decisions on her diet and daily activities. This is just some of my thoughts but I have lots of questions about how to take care of her and myself. I don’t know how long I can hang in there; you know I am 78 years old already. (CP 6)”

Adaptive leadership and collaborative work promote person-centered care

The loving spousal relationships and the sense of providing good care for their loved ones still play important roles in helping care partners identify positive aspects. PWD and their care partners who were able to maintain a certain level of well-being in their daily life tended to choose a more positive attitude and nurture the belief that there is significant meaning in the journey of living with dementia. Both PWD and their care partners were taking adaptive leadership [22] to support and empower each other to develop coping strategies in daily life, promote a continuation of normality, looking for opportunities for meaningful engagement, and facilitate collaborative work to sustain a reciprocal relationship. They managed the situation by developing technical work or practical methods of dealing with their declined cognition. They also used adaptive work such as making sense of the situation and finding their sense of purpose and achievement in their interactions. PWD can play an active role in transferring their knowledge and skills to their partners while they are still able to do so through collaborative work with their care partners.

“He used his hands to make a shape of square, my daughter was confused but I knew it immediately, he wanted his medicine. I got him the medicine and he was smiling. I knew I was right. I always try my best to communicate with him and I encourage him to express himself in different ways no matter what, and we sort of have a special connection. I always tell him it is you who is helping me and yourself. I am just assisting you to help yourself.” (CP11)

“At first, I would take her out to take photos. Later, I would arrange dates with my close friends so that they can sort of help me when I need to take care of her. During the days when we don’t go out, I would show her photos and videos that we took before and I would watch with her and ask her questions, talk to her. I just try my best to interact with her as much as I can and make adjustments based on her condition and find things that we can do together.” (CP14) I asked PWD14 about her feeling of the interactions, PWD14 had some difficulty expressing herself but she tried her best to respond to me that: “He..he is good. He made all the videos..” pointing to the VCDs and photos, “he is very patient with me, I’m lucky ... ”

Cultural relevance of person-centered dementia care at home

We found that our participants were heavily influenced by social and cultural expectations. Care partners felt that they are obligated to take good care of their sick family members. They regarded taking good care of his/her spouse who is sick as a moral duty within the family. Two dyads of participants lived together with their adult children, spousal care partners provided daily care for PWD primarily but they were able to get support from their children regarding medication and access to dementia-specific health care. Most of our participants are empty nested. Some reported that their adult children and grandchildren came to visit them, bringing them some daily supplies, helping them with cleaning, or taking them out for lunch/dinner. The value of filial piety not only impact the mental model of adult children but also that of older parents. Older adults expect their children to support, but in reality, there is a filial discrepancy, therefore, these older adults may try to justify their children’s behavior for not fully fulfill their filial responsibility [25].

Unlike other end-stage diseases, the Chinese term for dementia has negative connotations such as being confused and losing one’s mind or being catatonic, triggering social and individual stigma. This situation may also cause PWD and their family to lose face in interpersonal relationships. Many of our participants referred to dementia as “this problem”, “problem in the head”, “bad memory”. Very few felt comfortable to use the term dementia. Many did not mention his/her spouse’s condition to others outside of the family, including their neighbors and colleagues at all.

Some participants mentioned that they follow traditional Chinese cultural morality, particularly Confucianism, and recognize treating others with dignity and respect as a core concept in their thought and moral practice. However, they also mentioned that their spouses are getting weaker, dependent, and vulnerable, needing help and protection from families. PWD cannot make important decisions on their own and as their spouses, care partners believe that they are responsible of making some decisions for PWD. This perception might serve as a potential cultural barrier to acknowledging persons with dementia deserving opportunities to be engaged in meaningful social networking and make decisions for themselves.

Rather than individualism and autonomy, the Chinese concept of personhood emphasizes interpersonal transactions. It focuses more on whether the individuals’ behavior fits or fails to fit the interpersonal standards of society and culture. Maintaining a long-term harmonious relationship is a fundamental expectation in China. PWD tend to value their care partners’ attitudes more than caregiving knowledge and skills. If a care partner fails to use verbal and nonverbal symbols perceived as supportive, respectful, and caring, PWD would become anxious, self-blaming, and reluctant to communicate with care partners about their feelings and needs. They also tend to avoid direct confrontations and disclosures of personal difficulties within the

Person-centered dementia care model in home-based settings

We used the contextually and culturally sensitive model on person-centered dementia care developed by Wang et al. [4] and used the empirical findings from this study to further develop the model to enhance aging in place for PWD. The proposed model can guide us into exploring potential barriers and facilitators in promoting person-centered dementia care in home-based settings (see Fig. 1). The thriving of PWD and his/her care partner is supported by the person-centered process within a coordinated community and under the influence of sociocultural factors [8]. PWD and their care partners are at the heart of the model, thriving in their interdependent relationships. Putting adaptive leadership [20, 21] into the picture, we can see that person-centered process and positive outcomes can be achieved when PWD and care partners are empowered to take adaptive leadership roles and facilitate adaptive and collaborative work, such as taking a positive attitude towards living with dementia, working together on adaptable and effective communication, developing shared understanding of the current situation, acknowledging commitment, and achieving shared goals through collaboration [10 –12]. The process is impacted by the contextual and cultural interpretation of person-centered dementia care at family, community, and societal levels. The coordinated community not only provides dementia-specific support and services but also creates an inclusiveness for PWD and their care partners. The model will further help us to reflect on their dyadic or family-based interactions to identify their unmet needs, gaps and possibilities of facilitating person-centeredness in their daily experience.

Fig. 1

Model of person-centered dementia care in home-based settings.

DISCUSSION

Our findings provide examples of care partners not providing person-centered care as well as examples of care partners respecting PWD’s choices, regarding caregiving as assisting and guiding instead of telling PWD what to do, resulting in a profound positive impact on their wellbeing. It is consistent with the fundamental philosophical prerequisites of person-centered dementia care that all persons with dementia are recognized as valuable and competent, autonomy, and worth, and deserving of full respect [9, 10]. We highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers to maintain PWD’s human dignity and obtain a sense of identity and meaning in the journey of living with dementia.

Our findings also align well with the Adaptive Leadership Framework for chronic illness (ALFCI) that PWD and their care partners are confronted with multiple challenges, including adaptive challenges that are difficult to define, have no current or known solutions, and often involve changing behaviors and shifting norms or values [20]. PWD and their care partners showed adaptive leadership by empowering each other, acknowledging the strength and commitment of each other, and facilitating collaborative work that can address adaptive challenges in their daily life. This interpretation highlighted the importance of nurturing their spousal relationships and valued partnerships. PWD and their care partners need to be guided to a more positive attitude towards living with cognitive impairment. Through interventions that engage both PWD and their family care partners, health care team members ought to help care partners gradually adopt the role as adaptive leaders who can establish a reasonable and shared goal of their life, adapt to new routines in life, and allow PWD to move at their own pace [20 , 26]. Maximizing the supportive resources for PWD and their care partners particularly at times of diagnosis and transitions and prepare them for the changes and challenges are the key to improving their well-being. PWD and their care partners ought to have better access to the knowledge of the disease and opportunities to consult with clinical experts or preferred professionals about treatment, decisions making, and prognosis of the disease, and management of behavioral symptoms. Early and continuous interventions and support are important to prepare PWD to play a proactive role in transferring their knowledge and skills to their partners, planning and making decisions for the future while they are still able to.

Our findings regarding cultural relevancy of person-centered dementia care can be a starting point to operationalize globally important principles of person-centered dementia care in specific sociocultural contexts. We need to take individual and social stigma, different conceptualization of personhood and autonomy, and maintain relational and family harmony at the expense of communicating or expressing oneself into account when we try to develop a more culturally-sensitive understanding of person-centered dementia care. In many developing countries, family members have major roles in caring for PWD; it is not only important to carry out research helping formal caregivers to initiate effective communication and involving family members in the care but also to guide family caregivers to resources, and support the dyads in person-centered, relationship-based approaches to maintainingwell-being.

Strengths and limitations

The participants all lived in urban area; the experience they had might differ from those from other underdeveloped areas in China. Other family members were not included in the current study so that we are unable to directly identify the caregiving responsibilities others took in the family. Researchers can further explore person-centered dementia care in home-based settings using a mixed-method design. Our study findings provide implications for the development of person-centered dementia care models in home-based settings. Knowledge generated from this study adds to the current body of literature on person-centered dementia care by focusing on informal caregivers/family caregivers who are not formally trained or paid to serve the role. It sheds light on a unique person-centered dementia care approach in home-based settings through dyadic experience of persons with dementia and their spousalcaregivers.

Conclusion

A care model developed in this study can guide us to explore potential barriers and facilitators in promoting person-centered dementia care in home-based settings. The thriving of PWD and his or her care partner is supported by the person-centered process within a coordinated community and under the influence of sociocultural factors. Putting adaptive leadership [23, 24] into the picture, we can see that person-centered process and positive outcomes can be achieved when PWD and care partners are empowered to take adaptive leadership roles and facilitate adaptive and collaborative work. The process is impacted by the contextual and cultural interpretation of person-centered dementia care at family, community, and societal levels. The model will further help us to reflect on their dyadic or family-based interactions to identify their unmet needs, gaps, and possibilities of facilitating person-centeredness in their daily experience.

Footnotes

ACKNOWLEDGMENTS

Support is from Shanghai Sailing Program20YF1402000 by the Shanghai Government Science and Technology Committee.

Authors’ disclosures available online ().

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