Translating knowledge into practice: An exploratory study of dementia-specific training for community-based service providers

Abstract

Objective

To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers.

Methods

This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training.

Findings

Staff valued up-to-date knowledge and “real stories” grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice.

Implications

The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.

Keywords

caregivers education health services health policy legislation

Introduction

Over the last 20 years, the belief that people would prefer to remain in their own home as they age has become embodied in policies that moved health-care services from institutions to the community (Ministry of Health, 2013; World Health Organization [WHO], 2012). In keeping with the emphasis now given to a strengths-based, person-centered approach, there is an expectation that services will facilitate more flexible care provisions (Ministry of Health, 2013). This should be a positive move for people with mild to moderate dementia as they are reported to be more competent and secure in a familiar environment (Bryden, 2005; O’Sullivan, 2011). However, dementia care is known to be failing on many levels (Alzheimer’s Disease International [ADI], 2013; Cooke, Moyle, Venturato, Walters, & Kinnane, 2013; WHO, 2012), largely because of misunderstandings that exist in society. With nothing to prevent decline, notions of dementia as a living death have contributed to the fact that dementia has only recently been considered a priority for health policy makers (Cooke et al., 2013; Ministry of Health, 2013; Smyth, Fielding, Beattie, et al., 2013).

In response to an increasing number of people living with dementia and the need for service improvement (ADI, 2013), many countries have developed coordinated strategies of care and support. For instance, in New Zealand, the Ministry of Health (2013) released a framework to guide the development of dementia care pathways. The framework calls for a nationwide approach integrating medical, social, occupational, cultural, and spiritual aspects of health. While that is clearly desirable, the underlying assumption that services will be provided by highly trained staff is challenged by estimates of around 48,000 unregistered care workers delivering the bulk of care in the community by the year 2035 (Ministry of Social Development, 2014). Moreover, the training they receive usually focuses on topics such as personal care, safety, and food hygiene, rather than aspects of dementia that would facilitate understanding of needs and the importance of a strengths-based approach based on person-centered care. To change approaches to dementia care is an enormous task, especially when service providers are doing their best within their knowledge base. For example, carers may have developed their own way of performing their duties based on the misinformation about dementia that prevails in society.

Nonetheless, international research has shown that training to enhance understanding of dementia can improve the quality of care provided to people with dementia and their families (Cooke et al., 2013; Illes, Chahal, & Beattie, 2011; Peacock et al., 2010).

Many of the challenges facing people with dementia and their family are grounded in myths and misapprehensions about what it means to have a diagnosis of dementia. For instance, the social construction of dementia as a health condition that causes people to lose their ability to function has effectively upheld the stigma associated with dementia. Furthermore, it is the basis of excess disability and unequal relations that have marginalized people with dementia (WHO, 2012). In terms of the social context, the negative stigma attached to a diagnosis of dementia has been claimed to be a result of poor knowledge and understanding, “hype and fear” (Whitehouse & George, 2008, p. 9).

Therefore the policy intention to increase independence, choice, and well-being by developing the highest possible standards of dementia care means promoting a strengths-based approach (Peacock et al., 2010; Saleebey, 2000). That is, educating and training the social support workforce to look for people’s strengths and to recognize abilities rather than focusing on weaknesses. Unhelpful practices that challenge people with dementia can be changed by moving support staff into a new way of doing things. This will require a fundamental shift, not just in the way services are provided, but in how staff think about dementia itself. Such a shift will have valuable social and economic outcomes for the health and well-being of people with dementia by enabling and encouraging them to maintain and maximize functional abilities. However, any change to the way things are done has to include all members of staff because a robust team is essential if change is to succeed. This more than anything else will impact positively on quality, safety, and productivity since team work, based on mutual respect, trust, and understanding, is pivotal to the provision of quality services (Adamson, 2006; Chapman & Hosking, 2002). For those reasons, this exploratory study had five goals:

To develop a strengths-based dementia-specific training resource designed to equip service providers with up-to-date knowledge;

To deliver the training to staff at all levels of responsibility within community-based service organizations funded to deliver services in the community;

To explore positive and negative aspects of the training from the participants’ perspective;

To evaluate translation of knowledge into practice from clients’ and their families perspective;

To identify factors that facilitate or inhibit translation of knowledge into practice.

Since there are numerous conditions that can cause dementia, for the purposes of this article, the use of the term dementia encompasses all conditions including Alzheimer’s disease.

Literature review

The literature review addressed population ageing, how it influences social policy and the development of an integrated approach to health services. A description of the changes that impact on the ways in which dementia is perceived is also presented, followed by the rationale for the present study.

The impact of population ageing

Since dementia is a chronic, progressive condition that mostly affects people over 65 years of age, population ageing has contributed to the number of people living with dementia. Because those numbers are rising, dementia has become a public health priority in many countries (ADI, 2013; Organisation for Economic Cooperation and Development, 2013; WHO, 2012). In New Zealand, population ageing has led to a significant reappraisal of the health-care system for older people beginning with the Positive Ageing Strategy (Ministry of Health, 2001). This policy shifted the focus from the medical model, which was prevalent at that time, to a call for integrated approaches to health care.

Changes in the characteristics of dementia care

The lived experience of dementia is now being documented, and it is acknowledged that people who live with dementia have insight into their condition (Banerjee, 2012; Taylor, 2007). This knowledge underpins the call to recognize the social structures that shape the experience of dementia and the way care practices are defined and carried out (Innes, Archibald, & Murphy, 2004). Improved understanding of dementia has also raised awareness of support needs; however, research findings have not translated into a strategy to deliver high quality care (Innes, Kelly, & McCabe, 2012), and there is a shortage of qualified people in the field (Ministry of Health, 2013).

When searching electronic databases such as CINAHL, EBSCO, and OT SEEKER for the purposes of this literature review, using the key words dementia-specific training, community, and strengths-based care, the paucity of previous research was revealed. Yet, the need for specific training for staff who work with people with dementia in the community is emphasized in the literature (Adler, Lawrence, Ounpraseuth, & Abba Asghar-Ali, 2015; Bowers, 2008; British Psychological Society & Royal College of Psychiatrists, 2007). Some of the issues raised included a lack of initiatives to improve levels of knowledge for professionals, family caregivers, and those working in the field, along with poor community awareness and understanding of needs (Cobban & Dinscarlan, 2005; Downs & Bowers, 2008; Taylor, 2007). Other issues focused on the urgent need to ensure that service providers are competent to do the work required (Ministry of Health, 2013; WHO, 2012). The literature also highlights the difference between offering an inexpensive service and providing services designed to meet individual needs (Bowers, 2008; Cox, 2005; Kitwood, 1997; Taylor, 2007).

Evidence for a strengths-based approach

Equally, research has demonstrated that the degree of disability resulting from dementia is influenced by the demands placed on the individual, rather than representing remaining abilities (O’Sullivan, 2011; Peacock et al., 2010; Sabat, 2008). There is a growing body of evidence that supports the use of daily activities to maintain and improve functional abilities (Dooley & Hinojosa, 2004; Graff et al., 2008; MacRae, 2007; Salmon, 2006; Wood, 2005). For example, Graff et al. (2007) found that facilitating occupational engagement in the community is a highly effective nonpharmacological therapy for people with dementia and their caregivers. Outcomes included improvement in daily functioning, as well as an enhanced sense of competence, quality of life, mood, and health in both people.

The focus of maintaining function aligns with a report recently released by the WHO (2015), which defined healthy ageing as “the process of developing and maintaining the functional ability that enables well-being in older age” (p. 28). Furthermore, the report advocated that “healthy ageing is more than the absence of disease” (p. vii), and that the majority of older people think it is essential to maintain functional abilities. Theories such as this underpin calls for a strengths-based approach to the delivery of services in the community while highlighting the concepts of person-centered care, quality of life, and well-being (Ministry of Health, 2013; WHO, 2012).

People with dementia are usually deprived of a person-centered approach to care and are often treated impersonally, particularly when they become more dependent (Sloan, 2009; Taylor, 2007; Whitehouse & George, 2008). According to the WHO (2015); research has indicated that training in person-centered care can change support workers' attitudes and actions toward people with dementia. Moreover, it has been reported that support workers who engage in person-centered care have lower job stress and increased job satisfaction (WHO, 2015).

However, many interventions reported to be effective in health services research studies fail to translate into meaningful care outcomes (Illes et al., 2011). Therefore, finding a way to effectively translate research findings into practice is important, not only from a professional perspective but also for society, economists, and organizational management (Chapman & Hosking, 2002; Nolan, Davies, Brown, Keady, & Nolan, 2004).

Methods

This qualitative study brought together an interuniversity team comprising an occupational therapist, a psycho geriatrician, and a speech language therapist. The goal was to develop and deliver dementia-specific training to organizations funded by the New Zealand government to provide community support services to people who live with dementia and their families. The perceived outcomes of the training were to be considered in discussion with 10 to 12 clients of the participating organizations, including equal numbers of people with dementia and family members, several weeks after the training had been completed. Ethical approval for the study was granted by Auckland University of Technology Ethics Committee (AUTEC 13-217) on 20 September, 2013.

The training manual

The training manual was designed to be the main resource for the training. Informed by national policy documents and strategies (Gold, 2009; Ministry of Health, 2001, 2002, 2013), as well as resources, ideas, and topics that underpin international approaches to training (Bell & Troxel, 2001; Dementia Services Development Centre, 2008; Illes et al., 2011; The Victorian and Tasmanian Dementia Training Study Centre, 2008), the manual was written in plain English to ensure it was easy to understand. Knowles' (1990) theories of adult learning were also taken into consideration (Table 1). Knowledge sharing, empowerment strategies, and active lifestyles were the central philosophies of the proposed training.

Table 1.

Knowles' (1990) assumptions.

Assumption	Rationale
1. The need to know	Adult learners need to know why they need to learn something before undertaking to learn it.
2. Learner self-concept	Adults need to be responsible for their own decisions and to be treated as capable of self-direction.
3. Role of learners	Adult learners have a variety of life experiences which represent the richest resource for learning. These experiences are however imbued with bias and presupposition.
4. Readiness to learn	Adults are ready to learn those things they need to know in order to cope effectively with life situations.
5. Orientation to learning	Adults are motivated to learn to the extent that they perceive that it will help them perform tasks they confront in their life situations.

The manual was divided into six sections. Each section included an introduction to the topic and an explanation of why it was important (Table 2). A combination of quizzes, reflective exercises, and group discussion were used to stimulate learning. The exercises were supported by stories grounded in practice because, according to Harley (2001), stories make the deepest impression and are a powerful way to draw people in. Arguably, many of the participants had preconceived ideas about ways to respond or “manage” people with dementia so the goal was to use stories to bring to life the application of knowledge.

Table 2.

Training manual.

Topics	Rationale
1. Exploring the myths of dementia	To offset myths and misunderstandings using current evidence and knowledge.
2. Medical and scientific aspects	To improve understanding of the relationship between brain functions and the symptoms of dementia.
3. Person-centered care	To encourage a strengths-based approach that recognizes abilities rather than focusing on weaknesses.
4. Communication	To promote good communication skills.
5. Understanding and responding to behavior	To consider triggers for unusual behavior.
6. Health, well-being, and the environment	To address concepts of health & highlight the impact of a strengths-based approach toward caring for people with dementia.

The training had to be short and sharp because of organizational time constraints aligned to clients' care needs. An informal yet structured format was adopted to promote teamwork. This stance is supported by researchers who found that participants generally seek training that is systematic (Adamson, 2006; Illes et al., 2011) and applicable to real life situations (Knowles, 1990).

Recruitment

Community-based service providers were identified opportunistically from organizations that, having received information on the training, were keen to take part in the project. Three providers were involved, two operating nationwide and one smaller private provider. Each organization agreed to identify one person to liaise with the lead researcher and assume responsibility for recruiting participants from the pool of managers and health-care workers and, negotiate the date for training delivery. The individual organizations also agreed to recruit two client couples to engage in an interview and provide a suitable learning environment.

No-one who met the inclusion criteria for organizational staff was excluded. Eligibility criteria were as follows:

Staff members, either management or carer, employed by an organization to provide services to people who live with dementia in the community;

Experience in the provision of services for people with dementia;

Competent use of English language.

Eight to sixteen staff members were recruited from each organization including management level staff (who liaise with government funded District Health Boards [DHBs] and allocate clients) and care staff (who work with clients). Consent was obtained from all the participants, each of whom was advised that they were taking part in a research project before the training began. Participants could leave the project at any time even though anonymity was ensured when reporting the findings. Those who completed the workshops received a certificate; however, participants were advised that it did not represent a qualification.

Several weeks after the training, each organization was asked to recruit two client dyads to engage in a discussion with the primary researcher. This was a unique aspect of the study and here again participation was voluntary. In total, seven couples were referred; however, only four dyads met the inclusion criteria which called for:

People with a diagnosis of dementia and a family member receiving services from a participating organization;

Ability to register and process information, respond appropriately, engage in conversation, and be understood.

To ensure the findings were robust, the exclusion criteria for people with dementia included:

Cognitive or communication deficits that would impede communication with the researcher;

Diagnosis of multiple health issues that may impact on the ability to participate or influence understanding of the purpose of the research.

No personal information was collected from the clients, only their name, age, and contact details. Consent forms were signed before the interview began and again, anonymity was assured.

The training

One of the central aspects of the study was the inclusion of staff from all levels of each organization. The initial plan was to deliver the training in six sessions of 1 to 1.5 hour duration over six weeks. However, the logistics of having staff attend six training sessions proved to be problematic, especially since participation was voluntary. Thus, delivery was condensed into two training workshops of 3.5 to 4 hours duration, one week apart.

Data collection

Following the training workshops, two focus group discussions were held within each organization, one for care staff and one for management level staff. Demographic data were collected prior to the discussions using a questionnaire. One-to-one interviews were also available for those who had taken part in the training but could not attend the focus group. The discussions, which used semi structured questions to capture the utility, perceived outcomes and organizational support for the training, were digitally recorded. Individual meetings with clients used semistructured interviews focusing on the need for training and observed attitudinal changes. These conversations were also digitally recorded.

The goal to recruit at least two client dyads comprising a person with dementia and a family member from each organization was only partially achieved. Two organizations recruited clients in a timely manner however, the third found it challenging. It finally became clear that care staff who had participated in the training did not, at that time, have clients who were eligible to participate. Consequently, a decision was made to conclude data gathering from clients.

Reflective field notes

The primary researcher’s observations and reflections were documented following the workshops, focus group discussions, and individual interviews. Aspects considered included: Was the group successful? Why? Was there a consensus of opinion? What was surprising?

Data analysis

Using a conventional qualitative approach, analysis was accompanied by ongoing data collection. Focus groups discussions were transcribed verbatim and analyzed using an iterative process of coding and recoding, before clustering the codes into themes and subthemes addressing the content, delivery, and value of the training (Heish & Shannon, 2005; Patton, 2002). Critical reflection involving all three authors helped to work out the dynamics shaping the initial interpretation. The themes were explored back and forth with respect to the whole and the whole in relation to the parts. Analysis of interview data from clients followed a similar process.

Findings

Four key findings emerged from the data analysis: Practical knowledge facilitates understanding; Working together, learning together; Training can make a difference; and A tension between policy, safety, and quality. Overall, the participants drawn from funded service providers appeared to value the opportunity to improve their knowledge of dementia.

Organizational participants

In total, 36 organizational staff members participated in the training (Table 3). The following illustrative extracts present a broad description of their views. A slash bar (/) is used on occasion in the verbatim quotes to separate one speaker from another within each organization.

Table 3.

Organizational staff.

	Management	Care staff
Participants	11	25
Age	20s—early 40s	20s—late 60s
Experience	Only one had experience of working with people with dementia.	A range of practical experience in working with people with dementia.
Length of employment	Months—2 years	Months—13 years
Education	Tertiary	Tertiary and secondary
Training	Administration	Recently employed—safety, hygiene, and food handling. Staff employed for over 10 years received no initial training.
Tasks	Administration	Cleaning, shopping, and meal preparation. More complex tasks include personal cares, monitoring medication, and moving and handling tasks.

Practical knowledge facilitates understanding

The participants appreciated the high quality presentation of the manual and reported the content as relevant to their work. Care staff indicated it was “Easy to read and understand/informative” (Org. 1), “good layout” (Org. 2), “plenty of room for notes” (Org. 3). Similarly, management staff commented:

I liked the way everything was in there. I loved the layout and the pictures, cause I’m quite visual and I liked the reflections too … some of the messages are quite powerful/I liked the quizzes … the general knowledge about dementia was interesting/Yeah that was good … there are so many fallacies and myths and … there were times when I thought “Oh really? Oops.” (Org. 3)

Having time to share ideas with colleagues, reflect on, and hear different perspectives was also reported to be constructive: “Actually hearing everybody share their experiences made my understanding better” (Org. 1). “I think we’ve probably got more out of listening to each other … it is valuable” (Org. 2).

The majority of participants, both management and care staff, valued the use of practice-based stories to explain a specific point, deeming that crucial to understanding:

You had quite a few examples where you mentioned people you have worked with. If we could have a lot of that, I think it helps you understand better than the theory aspect of it. (Org. 2)

Even for support workers, even though they are dealing with clients with dementia, when you hear a story about a problem …, it really works, stories really help. (Org. 1)

You intersperse with a lot of stories: I think that is powerful. Have more stories because you gave us really good examples that we can visualise and really understand. (Org. 3)

Of specific importance, the care staff stated that the training increased their confidence and ability to work with people with dementia.

Sometimes you get a bit frightened and you think “What am I supposed to do with this person?”/Makes you more confident about taking the client on board rather than thinking “Oh I don’t know anything about that, I’m not going to do that job.” (Org. 1)

You think you know but actually there’s a lot that I didn’t understand. I learned something from every session, having to imagine how I might feel … it’s really been good for my confidence. (Org. 2)

We learned something new each time. Yes, actually I am more confident after this course. (Org. 3)

Management staff were also of the opinion that the training would enhance care staff’s competence and ability to do their job well: “No doubt it’s knowledge that gives them confidence to try different ways of going about things” (Org. 1). “It was excellent … surely increase competence and confidence” (Org. 3).

Working together, learning together

The quality of working relationships is pivotal in an organization with high levels of diversity and demanding skill requirements. From that point of view, many of the participants commented that it was good to have all levels of staff involved in the training. Management staff specifically indicated that they welcomed the opportunity to hear of the care workers’ experience in a learning environment: “It was good having the full spectrum of roles in the room (Org. 2). Hearing everyone’s experience you know, was different. I really thought that was excellent” (Org. 3). Both manager and care staff agreed that a top down approach to training would have a positive influence on their work since it would help to build good working relationships. According to one of the care staff: “I think it’s really important that a team that is looking after people sees themselves as a team … Work as equals and learn from one another” (Org. 2). This was supported by a member of the management staff who stated:

The fact that we have training that involves management staff and care staff actually creates an environment that we are just one team. We are here for the same reasons … you in the field and me in the office and I think that was great overall. (Org. 1)

The benefits of being able to learn together, to acquire skills and knowledge from each other, and to develop a greater understanding of dementia together were upheld by another manager: “It’s powerful… because we’re here to support them so the same messages and understanding will flow down now” (Org. 3). One caregiver captured the essence of this when he stated: “Thank you for planting the seed… for sowing the seed to all of us together so the plant can grow. People need to sow seeds together” (Org. 3).

When asked how the training sessions could be improved a large number of participants said no improvements were required however, two suggestions were noted: “I think more time is needed. It would be good to talk about the exercises and have more stories” (Org. 2). The time allocated for the training workshops was identified as an issue by one participant who suggested that there was too much information to process in too short a time. This feedback was given in an individual interview, and when comment was invited from other participants in a later focus group the majority strongly disagreed: “I would rather do it at a stretch, like two sessions, instead of doing it in six different sessions” (Org. 1). “You’re more likely not to have many people coming… because there’s always something coming up” (Org. 2).

Client’s viewpoint

Of the four client dyads who were eligible to participate, two were married and two were mother and daughter. One of the participants with dementia had young onset, the other three were all aged over 80.

Training makes a difference

All of the clients were of the opinion that specific training is essential to work with people with dementia. One daughter (Client 3) who is a general medical practitioner stated: “Yes I do, absolutely, I mean I think some people will pick up what’s required but always some people don’t understand what the illness is and how to manage it.” When that occurs, the client may be left discouraged, resistant, and negative. Another woman (Client 1) who had been looking after her husband for six years was equally adamant: “Yes, yes they must understand what dementia is all about.”

Family members stated that they want care staff who can engage with the client rather than just undertake a task. When asked if any difference had been noticed in the approach of care staff who had participated in the training Client 2 commented: “They’re all good, but the one we get during the week, she’s over and above. She’s done your course and she is very good, she’s amazing.” Equally, Client 3 reported “I have definitely noticed a change but I’m not sure if that’s learning on the job or if it’s the training or, actually it’s probably both.”

Furthermore, Client 3 stated that the new carer who had done the training was very quickly “able to find a space beside” her mother in a productive and reliable way.

Several opinions were offered in response to a question about skill requirements. Patience, empathy, and understanding were among the attributes deemed essential:

They have got to have compassion … people with Alzheimer’s are human beings …, and you don’t just ignore them. They have feelings, they just can’t express them and that’s what makes them frustrated. (Client 1)

They’ve got to … understand, they’ve got to be patient. Yes, you can’t be the same all the time can you? Every day you get ups and downs. (Client 2)

It’s really important that you don’t feel you are being bossed around in your own home … and just not rushing you, it’s important to take time. (Client 3)

The person needs to understand … they’ve got to have tremendous empathy and patience … to have the ability to work at the pace of the patient … because everything is in the moment and every day is a different day. (Client 4)

Loneliness was a significant concern for all of the clients with dementia. Most were keen to stay in their own home but they recognized a lack of social connections. From that point of view, the skills of care staff going into the home are crucial. According to Client 1, “Some days are a bit harder than others and so it’s important that they understand that and can help people feel a bit happier again.”

Legislation

An unexpected finding from the study highlighted the way in which interpretations of the Privacy Act (Ministry of Justice, 1993) give rise to safety issues related to poor communication between service providers. Apparently, knowledge of a client and the complexity of their condition is often lacking and this was a concern for both care staff and managers from all organizations.

A tension between privacy, safety, and quality

Essentially, care staff complained that they receive very little information about the clients they are expected to care for and this has, on occasion, put people at risk. The following data came from carers in each organization:

Nobody knows what they are walking in to. He [client] was very severe, and we didn’t know until we walked in there. I was really shocked, the way I was put in that situation, they just like throw us in there. (Org. 1)

Well sometimes we call on people and we don’t know what to expect because we get little information. /Yeah, that happened this week, a really difficult situation … a man with dementia and we weren’t told about his behaviour. It’s unsafe. (Org. 2)

. . . lobbing you into a situation and you’ve got to cope with it there and then, whatever is presented. (Org. 3)

The claims were endorsed by management staff from each organization. They were critical of the information that comes with referrals and consistently agreed that poor communication impacts on both the client and staff: “It puts the client in danger doesn’t it? And the carers when we don’t get the full picture” (Org. 1). To support this claim, one organization reported:

The guidelines that come from the DHB, we are not given all the information. /Some are very secretive. /It’s very PC [politically correct] and they hide behind the Privacy Act … and we don’t get the valuable information that we need. Like a serious one will come to us that we really probably wouldn’t have taken on … it’s quite dangerous for them to come to us … without the knowledge that we should have had. /I mean, I’ve had sleepless nights over it. (Org. 2)

Management staff were of the opinion that in the interests of safety, care staff should have a full report on the client they are going to see: “We have to make it as safe for everybody as possible” (Org. 2). Nonetheless, incorrect and erroneous information detracts from their ability to do that. This was confirmed by an incident that occurred earlier in the week:

Giving us no information. /It just blew us up, the information I got first from the DHB and when K spoke to them, it was a whole different picture to what we were first told. The carer who went in … [it was] absolutely hideous for them. /It’s stressful, oh it’s so stressful. (Org. 2)

This topic gave rise to keen debate on the topic of person-centered care. Here again both managers and care staff reported barriers to applying their new knowledge, which they attributed to contractual obligations. Care staff who work with people with dementia and their families felt extremely disadvantaged by the lack of information they receive. Carers from each organization verified that changes over time have undermined their ability to provide person-centered care:

Used to be we’d get a new client’s care plan so we could see for ourselves before we went in, but they don’t do that now. /They thought they were breaking all the privacy laws. /You get a name and address and work it out as you go along. (Org. 1)

You got to know the person, what’s important to them, what they like and dislike./ Having that extra knowledge in terms of dealing with dementia would be invaluable. (Org. 2)

Very little [information], it just gives you an idea. (Org. 3)

When this subject was pursued with management staff one participant responded:

We can only tell them what’s on a piece of paper, 3 hours a week, Monday, Wednesday, Friday shower. That’s all we can tell but they don’t know what they are walking into. It depends on what is written here. It would be more helpful in terms of placing care, if we actually know more, because we don’t know ourselves. (Org. 1)

Each client’s care plan is based on information gathered during a needs assessment by the DHB Needs Assessment and Service Coordination team. Organizational staff have no input to the care plan and moreover, the care plan is placed in the client’s home: “Due to privacy issues, we have to be very careful. That’s why we ensure there is a care plan at the patient’s home” (Org. 1). According to care staff, this is impractical because: “You don’t know if the care plan … is even in the house” (Org. 3). In response, management staff admitted: “If they show it to you it’s a plus but if they don’t then there’s nothing we can do” (Org. 1). One participant who had experienced a family member with dementia noted: “With family you know them but a client is different” (Org. 2). This was supported by another carer who stated: “You won’t know until you’ve been to that person two or three times and notice some things” (Org. 1).

Ineffective communication is compounded by the fact that the services are dictated by the DHB. For instance, in response to a question about social aspects of health, one care staff participant reported: “That’s out of the spectrum” (Org. 2). Therefore in light of restrictions the provision of person-centered care from a DHB is limited. According to one manager, “Even if they want to do more … the support workers are … bound with a certain agreement or rules or the contract that we have with the DHB” (Org. 1).

Discussion

The organizations participating in this study welcomed the opportunity to take part in a dementia-specific training project for community-based service providers. They voluntarily attended the training workshops over two weeks and took part in the focus group discussions which followed. The richness of the data endorsed the value of the training.

The manual was widely reported to be very relevant, both as a source of information and to stimulate reflective thinking. Many of the participants indicated they would keep it for reference purposes, thus validating the argument that posits good resources as important aids to learning (Adamson, 2006).

The study supported the value of organizational staff learning together despite initial reservations about managers controlling the workshops. Interestingly, management staff welcomed the opportunity to learn from care staff and appreciated the insights gained into the challenges that arise when delivering services. Ultimately, experience facilitates learning and given their limited practical experience, the majority of the management staff did not have the basic understanding that care staff had. According to Knowles (1990), adults learn best when they can invest their experience in the learning effort. This became evident when care staff’s experiential learning highlighted gaps in the management staff’s knowledge and understanding of dementia. That gap is significant as management staff are more likely to influence the ways in which services are provided. Only the literature on leadership addressed the importance of including all levels of staff in practical training (Adamson, 2006; Chapman & Hosking, 2002).

Although a very small number of clients took part in the research their feedback was important. Of the four client couples who engaged in discussion, three family members noted a significant difference in the ability of staff who had completed the training. For instance, being able to get alongside a client and achieve a productive outcome was reported to be a great relief. This is consistent with the findings of studies examining the impact of training caregivers in residential care. Those findings collectively showed a reduction in behavioral problems and improved attitudes when carers are trained to work effectively with people who have dementia (Cooke et al., 2013; O’Sullivan, 2012; Sabat, 2008). Of note, the clients welcomed the positive, strengths-based approach underpinning the study. This is in keeping with the findings of research that explored the capabilities of people with dementia (Cooke et al., 2013; Graff et al., 2007; Peacock et al., 2010). Furthermore, comments indicated that while specific training is essential to care for people who live with dementia, personal qualities such as compassion, patience, and understanding are also critical. There is an abundance of literature to endorse these findings (Bell & Troxel, 2001; Bryden, 2005; Downs & Bowers, 2008; O’Sullivan, 2011; Taylor, 2007).

This study provided striking evidence of the negative impact of structural practices. A key goal of the research was to identify factors that facilitate or inhibit the translation of new knowledge into practice. The data indicated that although community care staff are keen to embrace new knowledge in their work, the degree to which it can be applied is uncertain. A predominant criticism was the interpretation of government policies around the Privacy Act (1993) triggering a lack of information sharing between organizations. Poor communication was thought to create a significant risk for both the client and the carer. This finding is endorsed by research exploring the impact of legislation on patient care. Barnett (2008) found that legislation is not the problem rather, it is the interpretation of legislation that creates a barrier. The concept of person-centered care, which is given significance in government policies directed toward dementia care, cannot be delivered without information about the person. Essentially, it is unreasonable to expect community care staff to provide person-centered care when they have little or no knowledge of the person or their health status. Of equal importance is the lack of consideration given to social aspects of health. Ultimately, it would seem that although the training enhanced understanding, it is doubtful that the knowledge will be translated into practice.

Limitations

The evaluation of this training program was not as robust as originally hoped. The reasons for this include:

The requirements of the research became a secondary concern to the inclusion of care staff. In the desire to capitalize on this training opportunity, the need to recruit service users with the capacity to give an opinion on the impact of the training was neglected.

The study was an opportunity to develop, deliver, and evaluate dementia-specific training for community care providers; however, the authors acknowledge that the results are shaped by the current lack of dementia-specific training available to this group in New Zealand.

The data on care delivery outcomes flowing from the training are very limited. This should be explored in future research.

Conclusion

Training is a tangible platform upon which to address the issues around poor understanding of dementia. Organizational staff, both the managers and care staff taking part in this study, welcomed the opportunity to improve their knowledge. Moreover, they fully endorsed the value of learning together as it provided an opportunity to develop a strong, cohesive team while raising awareness of the gaps in knowledge between management level staff and care staff. Closing those gaps is essential to enable community service providers to meaningfully translate research knowledge into practice. Despite limitations, this study has highlighted the need to explicitly define the pathways between legislative policy and practice in order to improve the quality of care services in the community. The authors hope that the findings of this research will usefully inform future studies exploring training for the home care workforce to ensure services effectively meet the specific needs and priorities of people with dementia and their families.

Footnotes

Acknowledgements

The authors would like to thank the following people for their significant contribution to the execution of this research project: Chris Perkins (MB ChB (Otago), FRANZCP, Dip Prof Ethics) and Annabel Grant (BSLT, MHSc. (Hons.)). Also, the participating organizations, the people with dementia and their families. Without their valuable input, the study could not have progressed.

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: Funded by a STAR Postdoctoral Fellowship Grant (AO9_021) and the Dementia Research Awhina Development Group, the research was undertaken within Auckland University of Technology’s Centre for Person-centered Research.

Grace O’Sullivan has a strong practice background working with people who live with dementia. Interests and strengths related to her work include qualitative methodologies, particularly hermeneutics and action research, and working collaboratively toward an integrated approach to healthcare. A keen advocate of occupational therapy, she has successfully put her beliefs into practice both in the community and residential care. Author of numerous publications which focus on positive ageing, Grace is a recognized champion of people with dementia’s human rights.

Clare Hocking is a professor of Occupational Science and Therapy at the Faculty of Health and Environmental Sciences in Auckland University of Technology (New Zealand) where she has taught in the BHSc.(OT) and the MHSc programmes since 1990. She is the executive editor of the Journal of Occupational Science.

Kathryn McPherson is an experienced public health researcher and has worked in the research field for over 16 years to improve the health of people with disabling conditions. Kath holds a PhD from the University of Edinburgh. She has clinical experience in nursing, midwifery and community health, and an academic background in psychology and rehabilitation. Kath is currently the Chief Executive of the Health Research Council of New Zealand effective from January 2015.

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