Relationship-Centered Dementia Care: Insights from a Community-Based Culture Change Coalition

Abstract

This article reports on the work of a community-based culture change coalition affiliated with the Partnerships in Dementia Care Alliance, a research network committed to strengthening dementia care through supporting relationship-centered care approaches. Research to date emphasizes negative aspects of dementia care relationships. Drawing on data the culture change coalition collected as part of their culture change work using participatory action research guided by appreciative inquiry, this article examines what relationship qualities contributed to positive dementia care experiences and how positive relationships were created. Five types of care partners participated in the study through questionnaires, focus groups, and a mini appreciative inquiry summit. Data were analyzed collaboratively with culture change coalition members. Early in the analysis process, the aspiration statement “Relationships are at the heart of dementia care in [name of] County,” was developed and informed further thematic analysis. Findings revealed several relationship characteristics including friendship, commonality of experience, developing trust and feeling appreciated, reciprocity, and taking time/making time for relationships. As this article illuminates, relationship-centered programs and policies have the potential to foster positive dementia care experiences among diverse care partners in community settings.

Keywords

appreciative inquiry community care dementia older adults participatory action research relationship centered care

Introduction

Dementia is a chronic illness that, particularly in high income countries, principally contributes to older adults requiring long-term care (LTC), broadly defined as services received in one’s own home, the community, and care homes (Alzheimer’s Disease International [ADI] & World Health Organization [WHO], 2012; Prince, Prina, & Guerchet, 2013). Higher proportions of older adults with dementia receive home care services compared to individuals without dementia (Alzheimer’s Association, 2014; Gill, Camacho, & Poss, 2011), and a trend toward increased future use of such services among older adults with dementia is predicted (Alzheimer Society of Canada [ASC], 2010).

The global prevalence of dementia, estimated at 35.6 million people, is projected to more than triple by 2050 among adults aged 60 years and older (ADI & WHO, 2012; Prince et al., 2013). Internationally, costs associated with caring for people with dementia are predicted to almost double from US $604 billion (2010) to US $1,117 billion (2030) (Prince et al., 2013). In light of these unparalleled epidemiologic and economic trends, dementia has been designated a public health priority (ADI & WHO, 2012; Prince et al., 2013). Globally, governments are grappling with the challenge of creating policies that best meet the health care and social support needs of people living with dementia and their family members (ADI & WHO, 2012; ASC, 2010; Prince et al., 2013). Health and social system investments aimed to improve dementia care services is a key recommended component of such initiatives (ADI & WHO, 2012).

This call for dementia care improvement is supported by a sparse international body of research that describes community dementia care experiences and perspectives of persons with dementia, their family care partners, and health and social care agency staff (Gridley, Brooks, & Glendinning, 2014; Neufeld, Harrison, Hughes, & Stewart, 2007; Prorok, Horgan, & Seitz, 2013; Ward-Griffin, 2012). For example, the authors of a systematic review of 46 international studies of primary dementia care suggest “the health care experiences of (persons and carers) is less than optimal” (Prorok et al., 2013, p. E678). Remarkably, all but two of the tabled 28 participant quotations supporting the first-order level of data analysis in that review shared negative experiences (Prorok et al., 2013, pp. E676–677). Further, a report of an ethnographic study of 59 women care partners, 15 of whom were carers for persons with dementia, described a typology of interactions with family, friends, and community based health care providers, including those that were negative and ineffective (Neufeld et al., 2007). Lastly, shortcomings of a complementary model of home care that relies on family members to supplement care provided by health care professionals to persons with dementia, reinforced the need for dementia care policies that integrate “principles of equity, collaboration and empowerment” that are “genuinely supportive” of family care partners (Ward-Griffin, 2012, p. 173).

The research reported here was part of a larger culture change initiative conducted by the Partnerships in Dementia Care (PiDC) Alliance, a collaborative research network based in Ontario, Canada, whose members are committed to strengthening dementia care through supporting culture change toward more partner and relationship-centered care approaches, in diverse care settings (Dupuis, McAiney, Fortune, Ploeg, & de Witt, 2016; Fortune, McKeown, Dupuis, & de Witt, 2015).

Literature review

Person-centered care

The term person-centered care originated with “foundational knowledge … within dementia care literature” (McCormack, Karlsson, Dewing, & Lerdal, 2010, p. 621). Kitwood proposed a cultural shift away from traditional medical dementia care approaches toward an “emphasis on personal and interpersonal considerations” (1997, p. 6). Person-centered care has been considered a “guiding principle” for health and social care policy (McCormack et al., 2010, p. 620).

Significant critique of person-centered care is reported in the literature. Difficulty defining what is meant by being a person (Nolan, Davies, Brown, Keady, & Nolan, 2004) and person-centered (Hughes, Bamford, & May, 2008; McCormack et al., 2010) are two limitations. Person-centered care is also described as impractical, thereby limiting its everyday practice utility (Colomer & de Vries, 2016; Dowling, Manthorpe, & Cowley, 2006; McCormack et al., 2010; Nolan et al., 2004; Ryan, Nolan, Enderby, & Reid, 2004). Some authors question whether person-centered care is actually achievable (Kirkley et al., 2011). Lastly, person-centered care subtly emphasizes autonomy and independence more so than the interdependence characterizing relationships (Nolan et al., 2004) that Kitwood proposed were “essential if we are to understand dementia” (1997, p. 12).

Relational theory

Relational theory originated with the work of feminist scholar and psychologist Carol Gilligan (1982). A consistent message threaded throughout the reviewed literature on relational theory is that it applies to all (Jordan, 1991, 2010; Robb, 2006). A core tenet of relational theory is that relationships are the core of human being and wellness. Relationships form an “essential” (Robb, 2006, p. xx) and “fundamental interconnectedness among human beings” (Nedelsky, 2011, p. 22) located at the “core of human development” (Jordan, 2004a, p. 47).

Gilligan’s review of major theorists in the field of psychoanalysis revealed they were based on a human developmental continuum that began with the notion of relationship (attachment) in early life but moved toward emphasizing “separation, autonomy, individuation, and natural rights” (Gilligan, 1982, p. 23) in adulthood. In contrast, relational theory maintains that humans continue to develop “through and toward relationships” throughout life (Gilligan, 1982; Jordan, 1991, p. 81, 2004a, 2004b, 2010).

Relationship-centered care

The work of Nolan and colleagues is a significant contribution to advancing relationship centered care of older adults (Dewar & Nolan, 2013; Faulkner, Davies, Nolan, & Brown-Wilson, 2006; Nolan et al., 2004; Ryan, Ingleton, Gardiner, Nolan, & Gott, 2009; Ryan, Nolan, Reid, & Enderby, 2008). Specifically, the Senses Framework for relationship-centered care provides a way to capture the “interdependency that characterizes the best caring environments” for older adults (Nolan et al., 2004, p. 52). Initially developed in care home settings with older adults without dementia, it has been applied to older adults in other contexts. These include end-of-life care primarily in institutional settings (Ryan et al., 2009), acute care (Dewar &Nolan, 2013), and a respite care service for people with dementia (Ryan et al., 2008).

The framework consists of dimensions based on achievement of the senses of “security, belonging, continuity, purpose, achievement and significance” during care experiences (Nolan et al., 2004, p. 49). In keeping with earlier discussed relational theory tenets, all care partners must achieve the senses described in the framework (Nolan et al., 2004), thereby demonstrating the reciprocity inherent in optimal relationship-centered care (Dewar & Nolan, 2013; Faulkner et al., 2006; Nolan et al., 2004; Ryan et al., 2008).

Despite these contributions to understanding of relationships, a troubling theme evident in reviewed studies of care of persons with dementia and their family members is either problems with, or negative aspects of relationships in dementia care. Particularly, a systematic review of the subjective experiences of persons with dementia concluded that “dementia is a challenge for relationships” (von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012, p. 384). Another systematic review of experiences of people with early stages of dementia highlighted loss of meaningful relationships (Steeman, de Casterlé, Godderis, & Grypdonck, 2006). Other reports addressed unsupportive interactions in dementia care (Neufeld et al., 2007) and “potentially exploitive” relationships between family and home care partners in a community-based model of dementia home care (Ward-Griffin, 2012, p. 173).

This focus on negative aspects is a concerning limitation of the reviewed literature in light of the valuing of relationships by persons with dementia, their family members, and staff. For instance, 22 persons with dementia identified relationships as one of seven themes related to their service interaction experiences with community-based health care agency staff, with the ability to trust staff care partners viewed as contributing to positive care experiences (Gill, White, & Cameron, 2011). Also, for people with advanced dementia, “establishment and maintenance of meaningful relationships” was vital for assuring quality care (Edvardsson, Winblad, & Sandman, 2008, p. 363). Further, maintenance of relationships with persons with dementia and their family members was a critical source of job satisfaction for staff of a community-based dementia support service (Ryan et al., 2004).

The purpose of this study is to address some of the limitations of existing research and expand understanding on care relationships by contributing to knowledge about characteristics of positive care experiences, and how “positive caring relationships can be created” among diverse partners in a community dementia care context (Nolan et al., 2004, p. 49).

Study design

Study context

The PiDC alliance

The alliance supports culture change in dementia care through working with partners in diverse LTC home and community care settings. In each location, culture change coalitions (CCCs) are formed, composed of persons living with dementia, their family partners in care, staff representing varied disciplines and positions, volunteers, and researchers (Dupuis, McAiney, et al., 2016; Fortune et al., 2015). This article is based on the work of one community CCC (Dupuis, McAiney, et al., 2016).

The community CCC

The community CCC, located in a rural area in Ontario, Canada, was composed of a family member living with dementia, 12 representatives of four community care organizations offering health and/or social care services to persons living with dementia and their family care partners, and three research team members representing two universities. The community CCC met monthly and their culture change work was guided by participatory action research (PAR) and the appreciative inquiry (AI) approach (Cooperrider & Whitney, 2005).

PAR is a collaborative social process based on forming relationships with partners who have “insider” knowledge of a research focus, in this study, positive community dementia care experiences (Grant, Nelson, & Mitchell, 2008; Kemmis & McTaggart, 2000). All research partners actively engage in all stages of a PAR study (Dupuis, McAiney, et al., 2016; Kemmis & McTaggart, 2000). PAR involves recursive cycles of planning for change, action and observation, and critical reflection (Kemmis & McTaggart, 2000). However, because a PAR approach is inclined to focus on problems (Dupuis, McAiney, et al., 2016), thereby directing attention away from the capacity that exists and the possibilities for culture change, the PiDC Alliance integrates PAR with AI to promote a more appreciative and hopeful discourse (Cooperrider & Whitney, 2005; Dupuis, McAiney, et al., 2016; Hammond, 1998).

Appreciative Inquiry (AI) incorporates a process for engaging people at any or all organizational levels to produce effective, positive change, and entails five phases each with a distinct purpose (Cooperrider & Whitney, 2005). In planning for the Discovery¹ phase of their culture change work, CCC members designed and conducted a study of positive home and community dementia care experiences, and what it takes to develop care relationships early on and sustain them over time, in order to use this to envision even better possibilities. A description of the study methods follows.

Study methods

Recruitment

All partners in dementia care (e.g., persons with dementia and their family members, staff in a variety of roles and positions in diverse community groups and organizations, volunteers) in the geographical area served by the CCC member organizations were eligible to participate in the study. Recruitment occurred through mailing lists of CCC member organizations. Participants were also recruited from another local community organization and an informal social group through snowball sampling (Patton, 2002). Social group members (persons with dementia and their spouses) first met each other while attending meetings at a community CCC organization. They formed a group that met informally in each others’ homes.

Participants

Study participants (n = 135) represented five types of care partners including persons with dementia (n = 28), family care partners (n = 23), staff of three different community care organizations (n = 79), volunteers (n = 4), and a primary care physician.

Ethical considerations

The study received ethical clearance from two university research ethics boards and Privacy Officers in the community CCC member organizations.

Data collection

CCC members collaboratively determined the best means of obtaining information from the diverse types of partners involved in community-based dementia care and the data collection tools described here.

Questionnaires

Questionnaires were mailed in sealed envelopes also containing a study information letter and stamped return envelope. A total of 93 questionnaires were completed by persons with dementia (n = 15), family care partners (n = 18), staff from two organizations (n = 55), volunteers (n = 4), and a family physician.

The questionnaires contained similar questions that were shaped to each care partner type. Persons with dementia, family members, and staff were first asked to check all that applied from a list of types of care and support received or provided. The open-ended questions in all questionnaires asked for descriptions of positive caring experiences, ways to strengthen care and support received, and what participants did to care for themselves.

Focus groups

Two focus groups were held with persons living with early to moderate stages of dementia in an adult day program (six in one group, seven in the second group). A third focus group was held with members of a social group (n = 5).

Focus group interview guides contained questions similar to those described earlier for the questionnaires. Social group members were also asked to share tips/strategies that could enable others to build similar groups.

Mini-AI summit

A 90-minute interactive workshop facilitated by a research community CCC member was held with staff (n = 24) representing one CCC organization. Participants reflected on: (1) a great moment while working at (organization), (2) what “gave life” to (organization) when at its best? and (3) three wishes for (organization). Through taking part in break out discussion groups, staff shared and recorded written responses.

Data analysis

In preparation for data analysis, data were organized and assembled as follows. Questionnaire responses were retyped verbatim by a research community CCC member in separate tables, by type of participant, with the questions serving as table column headings. The focus group sessions were audio-tape recorded and transcribed verbatim by a transcriptionist. The mini-summit responses were retyped verbatim in a table with summit questions serving as table column headings.

Following a PAR approach, the tables and transcripts were analyzed collaboratively with CCC members at monthly meetings over a 15-month period, guided by three main questions: 1. What does an ideal care experience look like? (2) What is working well? and (3) What is going on when things are working well?

At each meeting, CCC members shared, discussed, and pooled findings into a summary table for each type of care partner. Next, similar descriptive statements from all care partner types were collaboratively grouped in categories of progressively increasing levels of abstraction (e.g., subtheme, theme, overarching theme). Consistent with the Discovery phase of AI, these overarching themes then informed the development of three aspiration statements for the community CCC. An example of how descriptive statements related to relationships were collapsed into subthemes, themes, an overarching theme, and aspiration statement is located in Table 1.

Table 1.

Collaborative analysis example.

Type of care partner	Descriptive statement examples	Subthemes	Themes	Overarching theme	Aspiration statement
Persons with dementia	Feel loved, respected, listened to, people are there for them Feel equal, important, and there is no judgment Thoughtful care is provided Bond with staff There is consistency to care provided	Persons with dementia feel valued	Establishing long-standing relationships	Support and care experiences are relationship- centered	Relationships are at the heart of dementia care in (name of) county
Family care partners	Feel they are not alone Knowing that others care as much as they do about their family members Support of peers and society	Families feel supported through relationships they have developed	Nurturing relationships and support systems
Staff	Appreciation works both ways There is smiling, humor, joy, and compassion There is a focus on building relationships Professional roles and boundaries are clear	Staff are forging caring, reciprocal relationships, while recognizing professional boundaries	Developing friendly yet professional relationships
Volunteers	Volunteer arrangement feels more like a friendship Help family members to have time alone	Volunteers are forming friendships	Bonding with clients and developing friendships
Social group members	Common experiences bring the group closer together Members appreciate having a social group rather than a formal support group The group revolves around food and fun	Social groups nurture supportive relationships based on trust and common experiences

An overarching theme on the importance of relationships in quality dementia care informed development of the aspiration statement: “Relationships are at the heart of dementia care in [name of] County.” All the data (tables and transcripts prepared at the outset of the analysis leading to the aspiration statement) were then further analyzed by the article authors, following a thematic analysis method (Braun & Clarke, 2006), to discover characteristics of relationships in positive dementia care experiences, which is the focus of this article.

The thematic analysis (Braun & Clarke, 2006) undertaken was guided by the question “What were the relationship qualities that contributed to positive dementia care experiences and how were they created?” The analytic process involved reviewing all data to identify patterns of meaning concerning how relationships contributed to positive dementia care experiences. An example of the thematic analysis process is located in Table 2. This process enabled identification of subthemes grouped under the main theme fostering positive relational dementia care. We then examined and interpreted each subtheme and came to consensus about what each reflected. We revised (e.g., developing trust and reciprocity) and expanded (e.g., adding subtheme taking time, making time) subthemes and concluded the analysis by returning to the data to ensure we fully captured all information reflective of each subtheme.

Table 2.

Thematic analysis process example.

Patterns of meaning (June 2015 to September 2015)	Subthemes (September 2015)	Subthemes (April 2016)	Subthemes (June 2016)	Main theme
Relationships figured prominently in the ideal care experiences of all partners in care Cherished programs and outings provided space for friendship development/maintenance	Forging friendships	Forging friendships	Forging friendships	Fostering positive relational dementia care
Being with others who understand dementia was valued	Sharing a common experience	Sharing a common experience	Sharing a common experience
Trust was an important aspect of relationships among all care partners Personal rewards were experienced by staff who took time to build relationships Mutual personal rewards included hugs, joy, feeling appreciated	Developing trust and reciprocity	Developing trust, acknowledging reciprocity	Developing trust and feeling appreciated
Strategies for maintaining personal/work boundaries	Experiencing incongruity between boundaries and relationships	Experiencing incongruity with relational boundaries	Experiencing tensions with relational boundaries
Taking time to build relationships Never enough time			Taking time, making time

Findings

Fostering positive relational dementia care

We interpret how positive care experiences were created through the overall theme fostering positive relational dementia care. We explore how several relationship characteristics enabled positive dementia care experiences through the subthemes forging friendships, sharing a common experience, developing trust and feeling appreciated, and taking time, making time. Although our analysis focused on positive relationship characteristics, the final subtheme experiencing tensions with relational boundaries reveals a negative aspect. Each subtheme is now discussed in depth.

Forging friendships

For persons living with dementia, cherished programs and community outings enabled development and maintenance of friendships. Attending adult day programs helped persons with dementia to“[meet] friends” and “interact with others” (PWD-FG1, PWD-FG1).² “We have a lot of friends that we meet and go out for coffee with” (PWD-FG2).

Persons with dementia identified having friends and social connections as the main way to care for themselves. A spouse pointed to a participant’s need for socialization and friendship through establishing a relationship with a volunteer: “Sometimes I wish … they’d have men come in to visit with men … they had a woman come who wasn’t out of school yet … they couldn’t really relate” (FM-FG1).

Volunteers deeply valued relationships that formed with their companions. The meaning of lost relationships affirmed the humanity of the person whom a volunteer visited:

When I took her to the grave of her [family members] she was able to share her feelings over the loss of her family and how it affected her life. This experience gave me a better insight into her life and her as a person, not just a person with Alzheimer’s. She’s much more than the disease. (V-Q)

Another volunteer explained that the joy experienced made the role more about friendship than volunteering: “Even if the program did not continue … I would still be her companion for a few hours each week. It makes me feel good and happy to see her smile and laugh” (V-Q). Lastly, friendship distinguished a social group from formal support groups organized by community care agencies: “I think … friendship … is … a thing … you never get from going to meetings … we always got together at homes, which also made it more relaxing and just friendlier” (FM-FG3).

As this subtheme suggests, personal connections and the friendships that develop strengthen the dementia care experience. Friendship was a significant outcome of exchanges that occurred in the context of programs, volunteer arrangements, and social groups.

Sharing a common experience

Being with others who shared the same experience was a particularly positive aspect of relationships among social group members:

After that first evening, I was feeling very relaxed with all of us having the same common denominator of the disease in the families and I just think that it was good for that reason. (FM-FG3)

Contrast between the social group space and that of the broader community became evident. The social group was “a safe place, a very safe place … When I have gone to other functions … some people do not know how to deal with Alzheimer’s” (FM-FG3). A safe space was created “because there is no judgment here, there is no criticism, if … we say something stupid, oh well.” (PWD-FG3)

Participants living with dementia also stressed the importance of being with others who shared an understanding about dementia because it contributed to their sense of equality with others: “There’s the social aspect how we can chat among ourselves and we all feel equal” (PWD-FG2) “because we’re in the same situation, just a little bit either ahead or a little bit behind” (PWD-FG1).

This subtheme illustrates how being with others who share the experience of living with dementia can help people feel a sense of safety and equality in their relationships. Relational care is strengthened by opportunities to connect and develop bonds with others through sharing similar life experiences.

Developing trust and feeling appreciated

Another important aspect of positive relational dementia care was trust that developed in relationships among community healthcare staff, persons living with dementia, and family care partners, highlighted as follows:

[My personal support worker] helps me with my bath … laundry … meals … when I need to talk … before she came I never got in the bathtub, never … Just talking, talking and she got me into the bathtub … I wouldn’t be without her. If I lose her I won’t take anybody else. (PWD-FG1)

Family members of persons living with dementia also deeply appreciated trusting, dependable care relationships: “I am very pleased with the care my [spouse] is receiving … I do think it is an advantage to keep the same health care [staff] with a [person with dementia] in so far as possible” (FM-Q). Another staff member further explained the impact of receiving unexpected affirmation of efforts to foster a relationship with a person living with advanced dementia:

“Each day I reminded her of my name … She insisted on calling me [name] … One day I was in the grocery store and heard [person with dementia] saying … “There is [name]. I couldn’t believe [it].” S-Q

Analysis of the data revealed some ways that relationships built on trust fostered personal rewards for the study participants, a notion we interpreted as feeling appreciated. As one staff member acknowledged: “the smiles you receive back are priceless” (S-Q). An adult day program staff member explained:

Most caregivers are so appreciative of what we do and they make a point of telling us they don’t know what they would do without us. We make them feel good about leaving their loved ones with us but we receive back tenfold the good feelings. (S-Q ADP)

Volunteers acknowledged feeling appreciated through positive relationships developed with their companions: “I know he enjoys doing [activity] and it helps to keep his mind working. This in return makes me feel good, knowing we have accomplished something that day” (Q-V). Staff attending the mini-summit identified personal rewards received including feeling appreciated, missed (during service interruptions), and welcomed at the door, by care partners with dementia. The following written response depicts personal rewards realized when relational care was privileged over completion of care tasks:

I noticed her ears were getting infected. I asked if she had any good earrings and she did not. Her birthday was coming up … I was shopping … I saw the perfect earrings … and decided to purchase these … I gave her the earrings and told her they’re an early birthday gift. She was almost in tears with joy … We hugged and it was a happy moment. (S-MS)

This subtheme shows that continuity in relationships that are able to grow and develop over time strengthen relational care. As relationships deepen, trust is built and feelings of appreciation grow.

Taking time, making time

Study participants noted the importance of taking time, making time for fostering positive relational dementia care. However, as one staff member lamented, there was “never enough time. Wish there was more time available” (S-Q).

Many staff attending the mini-summit identified a top priority wish “to have more time with clients” (S-MS). This was explained as “more time for care other than what’s on care plan. Less rushing” (S-MS), “extra things … if time permits” (S-Q), and “more social time to give client their personal support and care” (S-MS). A family member also recognized the value of social time for strengthening her mother’s care: “Just more time … visiting with and socializing with her. She really misses that” (Q-FM).

How valuable was the extra time? Investing a few minutes resulted in happiness and appreciation: “She really enjoyed it when I read letters to her from her loved ones far away. Just taking a few minutes would make her so very happy … ” (S-Q). A longer time with a client opened up possibilities for strengthening care:

Client expressed his disappointment in having to be helped to play [game] because of his dementia … he gave some great insight into what things he would like to do instead. We spent 45 minutes [with] him. What a pleasure. (S-Q).

Two hours of care focused on social time enabled a person living with dementia to reestablish relationships with friends in her community:

“The girl who comes for a visit for two hours took mom out to go “looking” in a store, then … for a coffee … mom spotted two older church friends and said she was going to sit with them. The worker got her a coffee and left her … to chat with the friends. The worker stayed her distance yet was near. Mom enjoyed her talk with the friends … she remembered when she returned home who she had talked with … She was very happy.” (Q-FM)

Participants spoke of time as a precious gift that may nurture strong relational care and result in care partners deriving greater enjoyment from involvement in the dementia care process because they do not feel rushed.

Experiencing tensions with relational boundaries

A CCC member employed in a community agency explained that clients commonly preferred to know the first and last name of staff care partners. Knowing surnames enabled clients to determine who staff were related to in the community, thereby avoiding the sense of inviting strangers into their homes. Despite this, and the earlier described importance of forging friendships in positive relational dementia care, some study participants indicated they believed developing the personal aspect of dementia care relationships was outside their role.

Boundaries between personal and professional relationships were established through “knowing my limit” (Q-S), following “strong guideline[s] to keep my personal and professional life separate” (Q-S), and “impos[ing] professionalism … there should be boundary between client and work” (Q-S).

Some strategies for maintaining boundaries included “be[ing] personal to a point” (Q-S), “friendly, not a friend” (Q-S), and not “go[ing] overboard with offering extras (care)” (Q-S). Another strategy was refraining from initiating conversation: “It can be difficult in small towns to maintain boundaries. If I see people out of context, I smile but I do not make verbal contact unless they address me first” (Q-S). Other staff avoided physical contact in any emotional sense: “Hugs to the side. Never hug client closely to chest. Be aware of my tone of voice to convey proper boundaries” (Q-S). Lastly, the mutuality inherent in positive relational dementia care was hindered by a strategy that maintained one-directional exchanges between staff and persons with dementia: “Avoid talking about my personal problems. When asked by clients, I say everything’s good and then change subject to client issues” (Q-S).

Despite the personal joy and meaning care partners derived from relational care, tensions inhibited development of personal aspects of care relationships. Strong relational care was clearly preferred by many participants in this study but professional boundaries sometimes interfered with care relationships moving beyond a mere service arrangement.

Discussion

Findings presented in this article convey the value placed on positive relationships by all care partners through expanding on the aspiration statement “relationships are at the heart of dementia care in [county].” Pointon’s (2011) appreciative reflection on relationships with staff who cared for her husband further support the connection between the heart and a relationship-centered dementia care approach: “Skills can be taught but it is really hard to change attitudes. The best staff brought hands, head, and heart to the job” (p. 72).

The findings provide insight on the characteristics of relationships among dementia care partners in a community context and how these characteristics facilitated creation of positive care experiences. Strong relational care is characterized by forging friendships, sharing of common experiences, reciprocity, developing trust and appreciation, and having the time to devote to nurturing relationships.

Friendship

Friendship is a significant type of relationship that strengthens positive community dementia care experiences. Previous research also demonstrated the importance of friendship. Positive social interactions and supportive friendships may diminish the potentially negative impact of dementia (MacRae, 2011) because persons with dementia are more susceptible to feelings of loneliness and isolation (Sabat & Lee, 2012).

Despite attention given to the connection between friendship and dementia, little research has explored this from the perspective of family and staff. All care partners in this study highlighted how friendship is integral to relationships in dementia care. Staff demonstrated friendship and friendliness through descriptions of privileging persons over tasks, and acknowledging their experience of relational reciprocity. Other research with staff in a community-based setting found their greatest source of job satisfaction was the close relationships developed with their clients (Ryan et al., 2004).

Tensions

While valuing of friendship was evident, study findings also highlight a tension between friendship and professionalism. This tension was illuminated when staff described ways professional boundaries impeded forging personal relationships, including not talking to persons with dementia when meeting them in the community and avoiding discussing aspects of their personal lives. In contrast, Pugh (2007, p. 1406) proposes that working as a professional in small, rural communities necessarily entails an “increased personalized basis of formal relationships” because it is more likely that care partners will encounter each other in daily life. Moreover, when clients in small communities have personal knowledge about a professional, such as family background, they more readily accept care (Pugh, 2007). Care provided in homes inevitably “blurs” personal and professional boundaries (McGarry, 2009, p. 269). In this study, indications of blurring personal and professional boundaries were evident and when this happened, staff, family members, and persons living with dementia all spoke about quality and pleasurable dementia care experiences.

Sharing common experiences

Relationships grounded in a commonality of experience were considered particularly positive by study participants. Common experiences enhance positive emotional and social benefits of peer support in the dementia care context (Keyes et al., 2016; Pointon, 2011). Since families impacted by dementia in rural communities may avoid using health and social services because of perceived stigma (Sun, Kosberg, Kaufman, & Leeper, 2010), connecting with others in similar circumstances may contribute to greater support and less social isolation. An evaluation of learning and sharing forums designed by and for persons with dementia (Dupuis & Gillies, 2014) and a study of a peer-led social group consisting of persons with dementia and their spouses (Fortune & McKeown, 2016) also highlighted the value of connecting with others who shared the dementia journey, including a feeling of safety.

Commonality of experience enabled diverse partners in dementia care in this study to feel safe and on equal footing with others, resulting in relaxation and enjoyment of personal interactions. These findings suggest that being with others in similar circumstances contributed to supportive and positive relationship development among these partners in dementia care.

Reciprocity, trust, and appreciation

Strong bidirectional relationships based on trust and appreciation also characterized positive dementia care experiences in this study. Such relationships were often forged through a sense of reciprocity. Social group members described acts of reciprocity when regularly welcoming each other into their homes and supporting each other as the need arose. Volunteers described receiving as much from relationships with clients as did their clients, also affirming relational reciprocity. Previous research has reported the commonly held view that persons with dementia lack reciprocity (e.g., Gove, Small, Downs, & Vernooij-Dassen, 2016). However, findings in this study suggest that while personal support workers often went out of their way to make a difference for clients by doing extra things, such as acting on the need for earrings, they also acknowledged receiving less tangible gifts from clients, in the form of shared stories, joy, laughter, and hugs. The way the reciprocal nature of relationships in this study translated into perceptions of positive care experiences supports findings from other research. For example, both Piercy (2000) and Sims-Gould and Martin-Matthews (2010) reported how close relationships formed with older adults in a home care context translated into higher satisfaction among staff and an overall perception of better care. Relationships among persons living with dementia and other community members can be reciprocal social opportunities that increase our capacity to see each other’s humanity (Dupuis, Kontos, Mitchell, Jonas-Simpson, & Gray, 2016; McIntyre, 2003).

Developing trust and feeling appreciated through acts of reciprocity requires continuity in care. In a study of a community-based dementia care service, continuity was considered essential for establishing and sustaining relationships (Ryan et al., 2004). Continuity and reciprocal relationships among persons with dementia and staff were considered the foundation upon which trust was built (Ryan et al., 2004). Our findings also support this belief.

Time

All participants spoke about needing more time to devote to relational aspects of care. Ensuring continuity in care means that time can be spent on relationships over the duration of home visits, but although consistent staff are paired with clients, they may feel rushed during their time together. In a study by Jansen et al. (2009), community-based dementia care providers described how limited time challenged provision of socioemotional support to persons with dementia and their families. Similarly, time was a precious commodity in this study and there never seemed to be enough time necessary to fully support relational care.

Limitations and further research

This study has several limitations. First, the sample is limited to people engaged with organizations that were part of the PiDC Alliance. Including positive experiences of other community dementia care partners, including grandchildren, neighbors, and staff working in primary health and social care settings (e.g., family health teams), could strengthen future research. Second, expanding the sample could enable the discovery of other relationship characteristics of community-based dementia care. Third, this research took place in a rural community. Future research is needed to explore how these findings would resonate with urban partners in dementia care. Fourth, study participants expressed some relational characteristics through feelings similar to those proposed by Nolan et al. in their earlier described “Senses Framework” (2004). Our study findings support the senses of security, belonging, continuity, purpose, and significance (Nolan et al., 2004) as vital aspects of positive dementia Care experiences. However, further research is needed on the application of this framework to partners in community dementia care.

Conclusion

Our research reveals specific characteristics and types of relationships valued by diverse partners in a community-based dementia care context. The more we know about the aspects and types of relationships that are meaningful and personally gratifying for all partners in care, the better able we will be to help nurture such relationships. Policies and programs that foster conditions for positive relationship development will surely contribute to enhancing the dementia care experience for everyone. Henderson and Forbat (2002) refer to such policies as relationship-based social policy. We hope to see greater support for relationship-based social policy. We have seen efforts to create conditions for positive relationship development through the LTC culture change movement. Proponents of culture change aim to create environments where the focus is on living and care is provided through partnership approaches that emphasize the importance of relationships (Dupuis, McAiney, et al., 2016). Much of our knowledge about culture change comes from work conducted in LTC homes. This study points to the need for culture change in community-based settings as well.

While professional practice standards are meant to protect clients from unethical care, a rigid interpretation and application of professional boundaries can limit or prevent relational care. As Barnes and Brannelly (2008) have argued, “good care requires a continual negotiation between those providing and those receiving care” (p. 286). Furthermore, care is not meant to be a one-way relationship that fosters dependency, but rather a relationship in which people may both give and receive care, and draw value from the exchange (Barnes & Brannelly, 2008). Quality dementia care experiences are best supported through attention to relational aspects of care. This can happen when people have opportunities to connect with others in similar circumstances, care is grounded in reciprocity, and people have time for friendships to develop.

Recommendations for practice

The findings reported in this study inform several recommendations for practice that can support relational dementia care. The first recommendation is for community-based dementia care organizations to create the conditions under which informal social groups can be established. While research suggests peer-led social groups may sometimes form on their own (Fortune & McKeown, 2016), community-based organizations should also be proactive in this regard. Proactive steps may include creating social leisure opportunities for families living with dementia to meet other families who share the dementia care experience. Such opportunities can help foster the connections needed for social groups to become established. The second recommendation is for decision-makers within community-based dementia care organizations to support reciprocity, trust, and appreciation in care relationships. One way for this to happen is to have consistent staff working with persons with dementia and their families so relationships grow and trust develops over time. Another way for this to happen is to decrease tensions experienced by staff around professional boundaries by supporting staff to have the freedom to choose to share personal aspects of themselves with clients in order to build rapport. The final recommendation is for decision makers to ensure that relational care not only consists of attending to bodily tasks (such as bathing) but also consists of time spent supporting people emotionally (such as chatting over coffee or reading a letter). Staff in this study wanted to spend more time with clients and have “more time for care other than what’s on care plan” (S-MS).

Relational aspects of care can be actualized when the care plan is expanded to incorporate emotional care and when work arrangements enable partners in dementia care to take time to know each other. As these study findings suggest, the rewards of such relational approaches are beneficial for everyone.

Authors’ Note

Earlier versions of this manuscript were presented at the Canadian Association on Gerontology 51st annual Scientific and Educational Meeting October 16th to 18th, 2014 and the Great Lakes 5th Biennial Nursing conference November 4th, 2016.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Partnerships in Dementia Care Alliance is funded by a Social Sciences and Humanities Research Council of Canada Community University Research Alliance (CURA) Grant (833-2009-1012), Dr. Sherry Dupuis, PhD and Dr. Carrie McAiney, PhD, Co-Principal Investigators.

Notes

Lorna de Witt, RN, PhD is an associate professor in the Faculty of Nursing, University of Windsor, Ontario, Canada. Her broad research interest is the experience of living with dementia, primarily in community settings, from the viewpoint of diverse partners in care. Her research questions are best answered through application of qualitative methodological approaches that to date have included phenomenology, qualitative description, participatory action research, and appreciative inquiry.

Darla Fortune is an assistant professor at Concordia University, Montreal, QC in the Department of Applied Human Sciences. Her research is embedded in a concern for social justice and aims to create positive change in the lives of individuals who are most at risk of experiencing exclusion from community. She often uses participatory approaches to research that push for social change.

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